How do I even begin this post? Looking back at Friday's early-morning post with my complaints about no progress, it is unbelievable that things got so bad in such a short time that we had to say goodbye to our precious son barely 24 hours later. It seems like a lifetime has passed since then; and it has, in a way. Every moment, every conversation, every touch from Saturday is seared into my mind.
My body is betraying me. Post-c-section symptoms intensified within an hour after Weston's death. My hair started coming out in handfuls (a common post-childbirth symptom, it happened a few days after Weston was born and then stopped). And my milk has come in with a vengeance, which is physically very uncomfortable. It is so unfair that my body continues to remind me with painful, rather than comforting, symptoms of the life that was inside of me after he is gone.
Also, I still have not even gotten around to drafting a post about Weston's birth. I have been drafting a post about my hospital bed rest but have not yet finished it, and I wanted to get that done before telling his birth story. Now I will have to describe his death before I describe his beginnings.
Friday we showed up for Weston's 2:00 round. I had called mid-morning, as usual, to check on his status, and I was told that Weston had a collapsed lung. Apparently this is a fairly typical complication with preemies on ventilators: it can be caused by inconsistent pressures of the ventilator, incorrect positioning of the baby, or poor positioning of the breathing tube. I was horrified (see my Facebook post) but was told that with tweaking the settings on the oscillator it should reinflate in the next couple of hours to couple of days. At that point, they had turned up the oscillator settings, and he was stable.
When we arrived later that day, Weston was in the middle of a bad de-satting episode. His oxygenation was at 53%, the lowest I'd ever seen it, and the oscillator was turned up to 100% oxygen. I got very upset and went to touch him immediately. For a couple of minutes, I just concentrated on him. Then I looked up at the monitor and noticed his sats were up to 60. We watched in amazement as they continued to climb: 63, 65, 70, etc., all the way up to the high 80s, which is where we want it. Someone made a joke about hiring me at the hospital.
After things calmed down a bit, one of the doctors, Dr. M (there are actually three Dr. Ms) and one of the nurse practitioners, S, came to talk to me. They were concerned about a condition called pulmonary hypertension. It seems pretty complicated but can be broken down to this: the body reverts back to fetal oxygenation. In utero, the fetus does not need oxygen in his lungs because he gets it from the placenta. So, with pulmonary hypertension, oxygen bypasses the lungs, and it can cause strain on the heart. I know this is a very serious condition because I've known of other babies who have had it.
The plan was to do an echocardiogram to determine whether Weston had pulmonary hypertension and then a chest x-ray to check on the collapsed lung. Because his sats were not great, Weston's team decided to start administering nitric oxide, which is a treatment for pulmonary hypertension, without having done the echo yet. Another doctor, also Dr. M, told me that, if the nitric oxide didn't work, they would want to administer steroids but had to obtain our consent first because of some potentially significant side effects. We agreed that the steroids would be OK, but it was in the back of my mind that steroids were the last resort, and we were about to start the second-to-last resort.
They began administering the nitric oxide, and Weston literally improved in less than a minute. Within five minutes, he was weaned down to about 50% oxygen. We were thrilled. The test results came back and were a mixed bag: the collapsed lung was reinflating. Weston did have pulmonary hypertension, but it was very mild. Finally, his chronic lung disease was quite severe, worse than what they usually see. According to Dr. M, his lungs looked like an old man with emphysema. But they were reasonably optimistic, and he was stable, so I headed home. I had been away for much longer than I had expected. Caroline was at home with Karen, my best friend who had flown in from Seattle.
I ran into D, one of Weston's primary night nurses, in the NICU before I left and joked that D would have his work cut out for him. Shannon and I really like D, so I'm glad I saw him. I called D later at 9:30 pm, per my usual routine, and the news was music to my ears: Weston was weaned down to 38%
oxygen, was comfortable (even a little awake and looking around), had great saturation levels and blood gases, and had gained some more weight (up to 1 lb 11 oz). D seemed really pleased with how he was doing.
In one sense, I was overjoyed at this news, but I just couldn't let myself get too excited. We had gotten our hopes up to have them dashed too many times, and I was still nervous that he was on the second-to-last type of treatment and could stop responding to it. Maybe I just subconsciously knew...
Generally, I didn't have a specific time of day, like bedtime, that I prayed for Weston. It was more like a constant, whenever-I-though-of-it schedule. Had I known that Weston was starting the final and most intense battle of his life, I would have prayed more for peace and comfort for him and, perhaps, a miracle.
Good sleep has eluded me since Weston was born. Much of that is my every-three-hour pumping schedule, but it's also the extreme stress of the situation. The few times that I have slept through my alarm for pumping, I would wake in a panic, worried about my milk supply. Friday night, I pumped at midnight and then set my alarm for 3:00 am. I went right to sleep. I woke to my phone going off, saw that it was light outside, and assumed I was hearing the 6:00 alarm to pump. I think I did realize at that point that I had slept through the 3:00 am pumping session and felt bad about it. As soon as I picked up my phone, though, I saw that it was not my alarm and, in fact, that the hospital was calling.
The hospital always calls if there was a sudden change in status in a negative direction and at other times if the parents wish. We just wanted to be notified about negative status changes and had requested calls in a couple of other very specific situations. This was the first unsolicited call from the hospital, so I knew immediately that things were not good with Weston.
It was Dr. Z calling. She did a good job of explaining what was going on, but by then I was extremely worried about Weston, and my mind was still foggy from sleep. Dr. Z said that, although Weston's lungs were holding up OK, his blood pressure had dropped very low, and this was worrisome. They were going to administer the steroids, but, she said, she wanted to let us know about this significant status change. Although she explained the medical details at this time, my mind was just not there, and I later learned that his pulmonary hypertension had worsened significantly.
I asked if we needed to come down to the hospital. She was very nonchalant: "How far away do you live?" "15 minutes." "Well, sure, you can come down here. I wouldn't rush too much, though. I want you to be safe and not break any traffic laws." "I skipped a pumping session and am very uncomfortable. Do I have time to do that before we leave?" "Yes, sure." Now I wonder if they say that all the time. However, if things were truly that dire, I would have expected more urgency.
Shannon was already awake, so I told him we needed to go to the hospital. I was pretty calm but very worried. I figured we would be there a long time, so I wanted to take my pumping supplies. As I got ready to go, I started feeling more urgency. I can't really explain it-mother's intuition, I guess. Although we have triple-digit temperatures every day right now, I packed a sweater. I had been very cold the day before, and Karen later told me the body temperature can dip during times of extreme stress. I still can't explain why, but I also grabbed two little hats for Weston that a friend had just sent me. Up to that point, he had only worn a hat when I held him. I think, in a way, I knew what was going to happen.
I woke up Karen, told her things were not good, and asked her to watch Caroline for the millionth time. She told me that she and another childhood friend had arranged for a photographer to come take pictures of Weston and to call if and when we wanted the pictures taken. Although suggestive that this might be the end, this comment didn't faze me at all and was actually very comforting.
That was the longest, and quietest, drive to the hospital. When we got to the NICU reception desk, the receptionist was acting a little weird but then told us to go on in. It was 7:00 am. C, the charge nurse, walked directly up to us and said, "Come with me. Do not scrub in." At that moment, I knew this was it. Germ control is crucial in the NICU, and no one would ever tell us not to scrub in unless the situation were dire.
C continued, "Weston coded about 10 minutes ago. We are doing chest compressions." We braced ourselves, walked into pod 9, and saw more people than we had ever seen huddled around Weston's little bed. D was doing chest compressions; he was extremely focused but had an indescribable look on his face. L, his daytime nurse, was already there (it was shift change time). I didn't recognize a lot of faces, because we were usually down there during the day.
Dr. Z explained that they were doing full-on resuscitation: everything they could to keep Weston alive. His heart rate was nonexistent, and they gave him doses of epinephrine every couple of minutes to get his heart going. It would artificially start his heart but only get it up to the 40s and 50s (130-160s is the normal range for a baby his age).
I will never forget the sight of my son lying there, artificially alive. It just seemed so unnatural and invasive, and his little body was going through so much. I am so thankful that he didn't really know what was going on. We just had to stand there, helpless, while they tried to save our son. I can't speak for Shannon, but I knew immediately that it was time, that we needed to let him go.
We waited a couple of minutes; someone suggested that the chaplain could come and baptize him or say a blessing. Someone had already called Shannon's dad, who is a pastor, and we would have appreciated a blessing from him. Our faith does not require infant baptism, so we were not concerned about that. After what seemed like an eternity, I realized that Shannon's dad was not going to get there soon enough. I knew the staff could probably keep him artificially alive until he arrived, but I just wanted peace for Weston. The hospital chaplain arrived shortly thereafter.
Shannon and I exchanged a look, and we both knew what had to be done without saying it. I don't remember what I said or how I said it, but I somehow relayed to everyone to stop resuscitation efforts. A comfortable chair materialized there in the NICU, right next to his incubator, the only home he had ever known. At some point, someone mentioned that we could go to a private room down the hall. But I wanted us to be in Weston's little home, which was a very familiar place to us by now.
My son was freed from his oscillator, all his tubes and wires, and his incubator, wrapped in a blanket, and placed in my arms with Shannon right there. It was the first time the three of us had been all together. Some skin had been torn off his cheeks when they removed the tape that had held his breathing tube in place in his mouth and was a little bloody, but he still looked so perfect. The chaplain blessed him and did the sign of the cross. We are not Catholic, but the blessing was beautiful.
Weston's eyes were closed, and he looked so peaceful. I honestly don't remember anything about the next several minutes or how much time even elapsed. Time just stood still. I was so happy to have him in my arms, where I had wanted him to be for so long. Although I had gotten to hold him once before for fifteen glorious minutes, he was tethered to the tubes and wires then; this time I could actually touch and kiss him: his precious face and his perfect little hands.
After some time, we were escorted to a private room. Shannon and I spent some precious time with Weston. His nurse, L, came in a bit later to listen to his heartbeat. It was still there but pretty slow. I was surprised; I thought that he had passed as soon as they stopped resuscitating him. I wish I had known that he was still alive; I would have sung to him more. In the next hour or so, he moved and sighed a bit, about three times. I was told they were reflexes. Maybe he was sending me the breath of heaven that I had so fervently prayed for.
A form I signed later that day listed the time of death at 8:10 a.m. We had gotten to the hospital at 7:00 a.m., and I had asked the hospital to call my mother to notify them of his passing. My mom got that call at 7:24 a.m.
Over the years, I have followed blogs here and there chronicling the death of a child. But who ever thinks they will live that experience? In my darkest days on hospital bed rest, I would have brief moments thinking about a funeral for my child but then quickly push those thoughts out of my head; I never wanted to give up on my baby. But I never thought about what it would be like to hold my dying or dead baby.
L brought in a basin, and we got to give Weston a bath and put lotion on him. He couldn't wear lotion in the incubator, so his skin was pretty dry. It was so wonderful, getting to do normal parenting things.
We spent the entire day at the hospital in the private room with Weston, with the exception of an hour or so when L took him back to the NICU to do his hand and footprints and take pictures of him. She made a beautiful memory book and little poster. She also gave us a memory box with everything that had to do with Weston, from the blankets on his incubator, to his ID anklet, to his eye masks when he was under the phototherapy lights. When she took pictures, she dressed him in a cute little knitted outfit with booties. Everything for the babies is made or donated by volunteers. I tell you, in addition to top-notch medical care, the family support system at St. Joseph's Hospital is phenomenal. They thought of everything and made the worst day of our lives as comforting and meaningful as possible.
As I mentioned previously, my friends Karen and Jaime had arranged for a professional photography session. They came when Weston was back in the NICU, and K, the photographer, took several pictures. I could have never asked for a better gift. We have already received the photos, and they are beautiful: I will treasure them as long as I live.
There was a rocking chair in the private room, and I rocked Weston for a long time. I had moments of peace and moments of uncontrollable sorrow. Shannon and I each spent some time alone with Weston, but I made sure Weston was never alone.
Weston had a few other visitors that day: D came by to offer his condolences before he left, as did C, the charge nurse, R, the nurse practitioner, and Drs. M and Z. E, my favorite nurse from antenatal, came by when Weston was in the NICU getting his photo shoot. My in-laws, my mom, and sister came to the hospital as well and were able to bid Weston goodbye.
Baby R's mom, my high school classmate, also came to see Weston in the NICU. Our pregnancy and NICU journeys have been uncannily similar, and she has been a huge source of strength and inspiration to me. I hope that I can be for her as well. Although I do not wish the micro-preemie and NICU experience on anyone, having someone else walk the same road is so helpful and comforting.
There was a queen-sized bed in the private room. I spent hours curled up with him in that bed, trying to memorize his every feature, his smell, how his little body felt. He looked perfect, just small. In the pictures of him alone, without any perspective as to his size, he looked a lot like his big sister when she was born.
We had to make some decisions pretty quickly regarding what to do with Weston's remains. I had thought we would see him again a few days later and wanted to have him embalmed, if only so we could see him one more time. After several conversations, we decided to have him cremated and learned that babies his size are not embalmed. In other words, we would not see him again after that day.
I mentioned either in a previous blog post or on Facebook (or both) that leaving Weston behind in the hospital when I was discharged was the most difficult thing I have ever done. That is no longer the case. Let me state the obvious: it pales in comparison to saying your final goodbye to your baby. That was THE hardest thing I have ever done, and I could hardly tear myself away. I still don't know how I did it.
Monsoon season is coming. For those of you who do not live in Arizona, it is a period in mid to late summer when Arizona experiences daily brief but intense rainstorms. The night of Weston's death, we had a monsoon storm. Shannon happened to look outside before the storm started and saw a full-sized rainbow, so we took Caroline out on the porch to look. I believe that the rainbow was actually a big smile from Weston reminding us that he is still with us. Soon after, the wind really picked up. God gave us the Breath of Heaven when we needed it most.
Monday, July 30, 2012
Friday, July 27, 2012
The Roller Coaster Stalls
Things with Weston have been really quiet over the last few days. I should be very grateful for this, but, for some reason, I'm getting frustrated. Then I feel guilty for being frustrated.
He is still on the oscillator. Every time I call/visit the hospital, I hear the same things: he's doing fine/well (depending on the nurse). The last abdominal x-ray came back negative, but we're still watching his belly. His oxygen and other oscillator settings are OK. His blood gases are good. He HATES being bothered. He is still sedated. And then, yesterday: we're changing the frequency of his rounds from every four hours to every six hours so he can be left alone.
Oh, and he extubated yesterday, which means that his ET (breathing) tube came out. That is NEVER a good thing, but it ended being a blessing with Weston. The previous ET tube had a little air leak in it, which means that he wasn't breathing optimally. You can tell there's a leak because it squeaks every time he takes a breath. When he extubated, they discovered that the previous tube was too small, so they put a bigger one in that fits much better and is helping him breathe better. They don't know how he extubated. Sometimes they move and it gets dislodged, and bigger babies will actually pull the tube out themselves. His nurse, L, did notice his hands around his face. Maybe he's already messing with his tube! After all, he weighs in at a hefty 1 lb 10 oz now.
It takes a while to really stabilize on the oscillator, but I feel like things have been OK for a few days now. I don't know why I'm so obsessed with feeding and pooping when breathing is obviously so much more important, but that is my thing right now. I think, to me, it represents normalcy. With Caroline, I would record how often she nursed and pooped to make sure everything was moving along. Although Weston "eating" from a feeding tube is a far cry from nursing, it is still one step closer to normal, at least in my mind. And he was doing so well with the feeding and pooping for a few days, so eliminating the feedings was a step backwards. Resuming feedings would also mean that the belly issue is completely resolved, and I really want that too.
Ultimately, I want things on the oscillator to stabilize so Weston can go back to the regular ventilator and, eventually, off the ventilator altogether. I'm tired of seeing him sedated, although I know it's the best thing for him. I don't ever try to hype him up or anything, but there's definitely more interaction when he is not sedated. Also, we can hold him again when he's off the oscillator.
Sorry for being such a complainer. But it's just one more part of the emotional journey, I guess. I have a lot to be thankful for: my BFF flew in from Seattle yesterday for the weekend. She and another old friend got to meet Weston. Baby R is doing much better. I got a really sweet and thoughtful gift from a high school friend whom I haven't seen in over 15 years. She sent the package to the hospital, and a nurse gave it to me with the remark, "You know you've been in the NICU too long when you start getting mail here." It's been almost three weeks: we've only just begun! We have also received a CD, a blanket, hats, and countless other thoughtful gifts, just in the last few days. And I had lunch with my former firm yesterday, which is always a pleasure. They were very relieved to learn that an oscillator is just a fancy ventilator and that Weston is NOT strapped to a permanently-oscillating fan. And in case you're scratching your head about that last one, be assured that everyone at the firm is very intelligent. :-) You'd be in good hands with any of them if you ever need an attorney.
So, it appears that God is trying to teach me PATIENCE. I need to be content with Weston's progress at this point in his NICU journey. I will do my best. With that being said, though, please pray for some overall progress with Weston in the next few days.
Oh, and one more thing: someone else asked S to be her son's primary nurse. I will go to war over that if I have to: no one is stealing S from us! I found out because I asked someone else to be his weekend primary. The same mom had already asked her, so I was too late. She reassured me that we will get to keep S. Whew! Even though things are quiet with Weston right now, there is always some kind of drama in the NICU!
He is still on the oscillator. Every time I call/visit the hospital, I hear the same things: he's doing fine/well (depending on the nurse). The last abdominal x-ray came back negative, but we're still watching his belly. His oxygen and other oscillator settings are OK. His blood gases are good. He HATES being bothered. He is still sedated. And then, yesterday: we're changing the frequency of his rounds from every four hours to every six hours so he can be left alone.
Oh, and he extubated yesterday, which means that his ET (breathing) tube came out. That is NEVER a good thing, but it ended being a blessing with Weston. The previous ET tube had a little air leak in it, which means that he wasn't breathing optimally. You can tell there's a leak because it squeaks every time he takes a breath. When he extubated, they discovered that the previous tube was too small, so they put a bigger one in that fits much better and is helping him breathe better. They don't know how he extubated. Sometimes they move and it gets dislodged, and bigger babies will actually pull the tube out themselves. His nurse, L, did notice his hands around his face. Maybe he's already messing with his tube! After all, he weighs in at a hefty 1 lb 10 oz now.
It takes a while to really stabilize on the oscillator, but I feel like things have been OK for a few days now. I don't know why I'm so obsessed with feeding and pooping when breathing is obviously so much more important, but that is my thing right now. I think, to me, it represents normalcy. With Caroline, I would record how often she nursed and pooped to make sure everything was moving along. Although Weston "eating" from a feeding tube is a far cry from nursing, it is still one step closer to normal, at least in my mind. And he was doing so well with the feeding and pooping for a few days, so eliminating the feedings was a step backwards. Resuming feedings would also mean that the belly issue is completely resolved, and I really want that too.
Ultimately, I want things on the oscillator to stabilize so Weston can go back to the regular ventilator and, eventually, off the ventilator altogether. I'm tired of seeing him sedated, although I know it's the best thing for him. I don't ever try to hype him up or anything, but there's definitely more interaction when he is not sedated. Also, we can hold him again when he's off the oscillator.
Sorry for being such a complainer. But it's just one more part of the emotional journey, I guess. I have a lot to be thankful for: my BFF flew in from Seattle yesterday for the weekend. She and another old friend got to meet Weston. Baby R is doing much better. I got a really sweet and thoughtful gift from a high school friend whom I haven't seen in over 15 years. She sent the package to the hospital, and a nurse gave it to me with the remark, "You know you've been in the NICU too long when you start getting mail here." It's been almost three weeks: we've only just begun! We have also received a CD, a blanket, hats, and countless other thoughtful gifts, just in the last few days. And I had lunch with my former firm yesterday, which is always a pleasure. They were very relieved to learn that an oscillator is just a fancy ventilator and that Weston is NOT strapped to a permanently-oscillating fan. And in case you're scratching your head about that last one, be assured that everyone at the firm is very intelligent. :-) You'd be in good hands with any of them if you ever need an attorney.
So, it appears that God is trying to teach me PATIENCE. I need to be content with Weston's progress at this point in his NICU journey. I will do my best. With that being said, though, please pray for some overall progress with Weston in the next few days.
Oh, and one more thing: someone else asked S to be her son's primary nurse. I will go to war over that if I have to: no one is stealing S from us! I found out because I asked someone else to be his weekend primary. The same mom had already asked her, so I was too late. She reassured me that we will get to keep S. Whew! Even though things are quiet with Weston right now, there is always some kind of drama in the NICU!
Wednesday, July 25, 2012
NICU Tidbits
Today was a better day for Weston. His oxygen and pressure settings on the oscillator remained pretty stable, with his oxygen down around 50%. He is heavily sedated, so he is mostly oblivious to everything going on, which is good because they are sticking him pretty often for blood gas tests and, tonight, two unsuccessful arterial line attempts. He will likely remain sedated until he is off the oscillator. I'm glad it's working so well, but I miss my little boy! I want to see him open his eyes again.
They are still watching Weston's abdomen very closely. It was discolored again today (although I couldn't tell) and slightly distended. As of tonight, it looks about the same. Although they are concerned about NEC, this evening's x-ray looked good. He is on antibiotics as a precaution.
Last night, Weston had gained 90 grams, which put him at 790 grams, or 1 lb 12 oz. That is actually too much weight gain. They start worrying about fluid retention (and probably other scary stuff that I don't know about) when babies gain that much weight in one day. But today, he did not look puffy at all, and tonight's weight was back down to 748 grams, or 1 lb 10 oz. That's a pretty good number and still consistent with an overall upward trend. His urine output was good as well, so he's not retaining too much fluid.
Our prayers are that he remains stable, that his abdominal symptoms go away, always that he does not contact infections, and that he can start eating breast milk again soon.
In other news, I had my follow-up appointment today and was cleared to drive, 2.5 weeks post-section. I still haven't driven anywhere, but I have big plans tomorrow!
I received a book about the NICU written by a neonatologist today. It's more of a personal memoir than a how-to book for preemie parents, and I'm enjoying it so far. What I do not enjoy is this tidbit: white males tend to get the worst lung disease. There is obviously nothing we can do about that!
This evening, I had an interesting conversation with Weston's night nurse, D. We really like him and had asked him to be Weston's primary nurse on weekend nights, which is usually when he works. He mentioned that he would be back on Friday and Saturday, but he didn't know if he would be assigned to Weston. When I expressed confusion over that (primary nurses always work with their primary patient), he said that he had requested primary status on the schedule after we had talked to him, but someone else had requested primary status with Weston the night before. It was C, whom I had met and also liked.
Well, crap. As parents, we have the ultimate control over who Weston's primaries are, so now I have to fire someone. D wisely said he was not going to get in the middle of it and encouraged me to do what I need to do, because "mothers have a lot of power." When I mentioned that having nurses fighting over who gets to take care of your kid is a very good problem to have, D said that Weston has captured everybody's heart. See why I like him? He is also a VERY good nurse. We will most likely stick with him. Maybe C can have him on Sundays.
So, today was relatively boring, except for the waiting game with the abdominal x-ray. Boring is good. I always end my nightly conversations with the nurse with, "Have a boring night." Please pray for more boring days. I would like nothing more than to blog about my inner journey instead of Weston's medical journey!
They are still watching Weston's abdomen very closely. It was discolored again today (although I couldn't tell) and slightly distended. As of tonight, it looks about the same. Although they are concerned about NEC, this evening's x-ray looked good. He is on antibiotics as a precaution.
Last night, Weston had gained 90 grams, which put him at 790 grams, or 1 lb 12 oz. That is actually too much weight gain. They start worrying about fluid retention (and probably other scary stuff that I don't know about) when babies gain that much weight in one day. But today, he did not look puffy at all, and tonight's weight was back down to 748 grams, or 1 lb 10 oz. That's a pretty good number and still consistent with an overall upward trend. His urine output was good as well, so he's not retaining too much fluid.
Our prayers are that he remains stable, that his abdominal symptoms go away, always that he does not contact infections, and that he can start eating breast milk again soon.
In other news, I had my follow-up appointment today and was cleared to drive, 2.5 weeks post-section. I still haven't driven anywhere, but I have big plans tomorrow!
I received a book about the NICU written by a neonatologist today. It's more of a personal memoir than a how-to book for preemie parents, and I'm enjoying it so far. What I do not enjoy is this tidbit: white males tend to get the worst lung disease. There is obviously nothing we can do about that!
This evening, I had an interesting conversation with Weston's night nurse, D. We really like him and had asked him to be Weston's primary nurse on weekend nights, which is usually when he works. He mentioned that he would be back on Friday and Saturday, but he didn't know if he would be assigned to Weston. When I expressed confusion over that (primary nurses always work with their primary patient), he said that he had requested primary status on the schedule after we had talked to him, but someone else had requested primary status with Weston the night before. It was C, whom I had met and also liked.
Well, crap. As parents, we have the ultimate control over who Weston's primaries are, so now I have to fire someone. D wisely said he was not going to get in the middle of it and encouraged me to do what I need to do, because "mothers have a lot of power." When I mentioned that having nurses fighting over who gets to take care of your kid is a very good problem to have, D said that Weston has captured everybody's heart. See why I like him? He is also a VERY good nurse. We will most likely stick with him. Maybe C can have him on Sundays.
So, today was relatively boring, except for the waiting game with the abdominal x-ray. Boring is good. I always end my nightly conversations with the nurse with, "Have a boring night." Please pray for more boring days. I would like nothing more than to blog about my inner journey instead of Weston's medical journey!
Bed Rest
Let me start out by saying that bed rest is not about sitting around eating bonbons (and no, that's NOT what stay at home moms do all day either). Bed rest means that I couldn't pick up Caroline, or really even take care of her, so I had to find alternative care for her. We ended up sending her to a home daycare two days a week and cobbling care together on the other days. My mother in law would usually take her at least one other day, and I would often have friends over for a playdate on the others. Then the friend could help Caroline while I sat. There were some obvious positive aspects: I did have a lot of down time, and I was able to read a lot. I read 11 books in May! And I got to spend a lot of time with my friend, who was also on bed rest, and who also had a toddler.
Being on bed rest with a toddler is similar to having a child in the NICU in that one cannot possibly understand it until one has experienced it. Bed rest is very isolating. I missed going out to eat, going to our neighborhood farmers market on Saturdays, family outings, swimming, etc. I even missed being able to cook and clean up the house. Sitting around in the house all day, I became acutely aware of the little projects around the house that needed to get done, but I couldn't do them. Two obvious big projects were/are redecorating the guest bedroom as a nursery and getting a big-girl bed and new furniture for Caroline's room. I LOVE to decorate, and I couldn't do anything.
We had a lot of unexpected blessings during bed rest. A wonderful group of people at church stepped up to help and brought meals every other night for weeks. Sometimes we would get meals from people we had never even met! As mentioned previously, people came over for play dates and to help with Caroline, offered to go grocery shopping for us, etc. People's kindness and generosity regularly brought me to tears. It was truly amazing. Once this NICU journey is over, I hope to be able to pay it back/forward to these amazing people.
Mornings were a little tricky with Caroline. Shannon was going to work around 5:30 am during this time, so he was not home to help with her in the mornings. My bed rest friend/neighbor had different issues than I did, and she was allowed to pick up toddlers for a time. So, every morning, she would come over and take Caroline out of her crib for me. Side note: bed rest does not always literally mean "stay in bed at all times." My friend and I both started out with the less restrictive bed rest, and later moved to the more restrictive type when our (different) complications continued.
So, after a couple of weeks of this, my friend's bed rest got more restrictive, and she wasn't able to lift toddlers anymore. So Shannon and I rigged things up with the ladder. We worked with Caroline one morning so she wouldn't be scared, and she grew to LOVE climbing out of her crib on the ladder! We had tried putting her crib mattress on the floor, but it didn't work very well because she kept getting out of bed.
My friend was great. She had been put on bed rest a few weeks before I was. We exchanged books, and she gave me advice, such as: a reminder that Caroline's brain would not rot if she watched a little TV. We are generally a no-TV family (I am TOTALLY becoming my mother-I love it!), but TV is obviously helpful if you need your kid to sit still and/or you are unable to chase said kid around! We haven't turned on the TV for Caroline, but she is completely obsessed with my iPhone. We can't avoid the screen time forever!
Heads up: personal pregnancy stuff coming up (I am not saying gross anymore, because pregnancy, even complicated pregnancy, is not gross)
So, I was still optimistic that the amniochorionic separation would heal, that my bed rest would end, and that I would carry the pregnancy to term. I established care with a perinatologist, Dr. G, who told me this was his expectation for me. After the initial bleed in April, I continued to bleed daily, as expected, but the blood turned old within a day. I had an appointment at 16 weeks and a follow-up scheduled for 20 weeks. That appointment was scheduled for a Thursday. The bleed area behind my placenta measured about 8 cm by 4 cm at 16 weeks.
On the Monday of the week of my 20-week appointment, I woke up to fresh blood again. Of course I freaked out and went all over town, first to my midwife and then to Dr. G's office for the 20-week ultrasound a few days early.
This was the 20-week anatomy check, and they were also going to check my placenta, of course. I had been convinced for several weeks that we were having a boy, but I told the ultrasound tech we wanted to be surprised. At one point, she told me she was going to check the bladder and might see the genitals in the process, so I should avert my eyes if I didn't want to see. I did not peek, but I did ask her if she had seen the sex, and she said yes. A few minutes later, she was trying to get a view of the spine and said, "He just doesn't want to move!" Oops. I didn't say anything because I knew her answer would give things away. I just chose to believe she used "he" in the "generic pronoun" sense.
After the ultrasound was over (in which I was reassured that the baby was OK but received no news about my placenta), I went back in the waiting room. After just a couple of minutes, the staff told me Dr. G did not have room in his schedule to see me that day and to wait until my appointment 3 DAYS LATER. About the bleeding, they just told me to "take it easy." I was devastated that I would have to wait 3 days to know what was going on, but I didn't have a choice.
Somehow we made it those three days. Dr. G said that the bleed area had actually decreased in size by about half, to 4 cm by 1 cm and that there was no new bleed. He wasn't sure where this new bleed was coming from, but he still expected it to resolve. He had me continue bed rest and set a follow-up appointment for July 5, which was right around the 24-week mark. He also changed my diagnosis to chronic abruption, which is another way of saying that the placenta has pulled away from the uterine wall and stayed that way for a long time.
I didn't know it, but my home bed rest was rapidly coming to an end. The following Monday, when I was about 20.5 weeks pregnant, I woke up to A LOT of blood. We had already checked out a couple of hospitals, confirmed that they accepted our health insurance, found out where their labor and delivery entrances were, etc. Dr. G had privileges at St. Joseph's, so we opted to go there. My mother in law came to get Caroline, and off we went. I thought I would just be there for a few hours; I had NO IDEA what was in store for me.
Being on bed rest with a toddler is similar to having a child in the NICU in that one cannot possibly understand it until one has experienced it. Bed rest is very isolating. I missed going out to eat, going to our neighborhood farmers market on Saturdays, family outings, swimming, etc. I even missed being able to cook and clean up the house. Sitting around in the house all day, I became acutely aware of the little projects around the house that needed to get done, but I couldn't do them. Two obvious big projects were/are redecorating the guest bedroom as a nursery and getting a big-girl bed and new furniture for Caroline's room. I LOVE to decorate, and I couldn't do anything.
We had a lot of unexpected blessings during bed rest. A wonderful group of people at church stepped up to help and brought meals every other night for weeks. Sometimes we would get meals from people we had never even met! As mentioned previously, people came over for play dates and to help with Caroline, offered to go grocery shopping for us, etc. People's kindness and generosity regularly brought me to tears. It was truly amazing. Once this NICU journey is over, I hope to be able to pay it back/forward to these amazing people.
Mornings were a little tricky with Caroline. Shannon was going to work around 5:30 am during this time, so he was not home to help with her in the mornings. My bed rest friend/neighbor had different issues than I did, and she was allowed to pick up toddlers for a time. So, every morning, she would come over and take Caroline out of her crib for me. Side note: bed rest does not always literally mean "stay in bed at all times." My friend and I both started out with the less restrictive bed rest, and later moved to the more restrictive type when our (different) complications continued.
So, after a couple of weeks of this, my friend's bed rest got more restrictive, and she wasn't able to lift toddlers anymore. So Shannon and I rigged things up with the ladder. We worked with Caroline one morning so she wouldn't be scared, and she grew to LOVE climbing out of her crib on the ladder! We had tried putting her crib mattress on the floor, but it didn't work very well because she kept getting out of bed.
My friend was great. She had been put on bed rest a few weeks before I was. We exchanged books, and she gave me advice, such as: a reminder that Caroline's brain would not rot if she watched a little TV. We are generally a no-TV family (I am TOTALLY becoming my mother-I love it!), but TV is obviously helpful if you need your kid to sit still and/or you are unable to chase said kid around! We haven't turned on the TV for Caroline, but she is completely obsessed with my iPhone. We can't avoid the screen time forever!
Heads up: personal pregnancy stuff coming up (I am not saying gross anymore, because pregnancy, even complicated pregnancy, is not gross)
So, I was still optimistic that the amniochorionic separation would heal, that my bed rest would end, and that I would carry the pregnancy to term. I established care with a perinatologist, Dr. G, who told me this was his expectation for me. After the initial bleed in April, I continued to bleed daily, as expected, but the blood turned old within a day. I had an appointment at 16 weeks and a follow-up scheduled for 20 weeks. That appointment was scheduled for a Thursday. The bleed area behind my placenta measured about 8 cm by 4 cm at 16 weeks.
On the Monday of the week of my 20-week appointment, I woke up to fresh blood again. Of course I freaked out and went all over town, first to my midwife and then to Dr. G's office for the 20-week ultrasound a few days early.
This was the 20-week anatomy check, and they were also going to check my placenta, of course. I had been convinced for several weeks that we were having a boy, but I told the ultrasound tech we wanted to be surprised. At one point, she told me she was going to check the bladder and might see the genitals in the process, so I should avert my eyes if I didn't want to see. I did not peek, but I did ask her if she had seen the sex, and she said yes. A few minutes later, she was trying to get a view of the spine and said, "He just doesn't want to move!" Oops. I didn't say anything because I knew her answer would give things away. I just chose to believe she used "he" in the "generic pronoun" sense.
After the ultrasound was over (in which I was reassured that the baby was OK but received no news about my placenta), I went back in the waiting room. After just a couple of minutes, the staff told me Dr. G did not have room in his schedule to see me that day and to wait until my appointment 3 DAYS LATER. About the bleeding, they just told me to "take it easy." I was devastated that I would have to wait 3 days to know what was going on, but I didn't have a choice.
Somehow we made it those three days. Dr. G said that the bleed area had actually decreased in size by about half, to 4 cm by 1 cm and that there was no new bleed. He wasn't sure where this new bleed was coming from, but he still expected it to resolve. He had me continue bed rest and set a follow-up appointment for July 5, which was right around the 24-week mark. He also changed my diagnosis to chronic abruption, which is another way of saying that the placenta has pulled away from the uterine wall and stayed that way for a long time.
I didn't know it, but my home bed rest was rapidly coming to an end. The following Monday, when I was about 20.5 weeks pregnant, I woke up to A LOT of blood. We had already checked out a couple of hospitals, confirmed that they accepted our health insurance, found out where their labor and delivery entrances were, etc. Dr. G had privileges at St. Joseph's, so we opted to go there. My mother in law came to get Caroline, and off we went. I thought I would just be there for a few hours; I had NO IDEA what was in store for me.
Tuesday, July 24, 2012
The Medical Saga Continues
This post title is kind of ridiculous: my baby is in the NICU. OF COURSE there is a long medical saga to go along with that! I am low on creative juices these days, though.
Poor Weston is just being messed with continually. He is one on one with S today, which is good and bad: good because S can give him his full attention, but bad because Weston NEEDS that much attention.
I called the NICU last night and this morning, and Weston was doing pretty well. He is back up to 700 grams, or 1 lb 9 oz (forgive me if I am repeating this information; I barely remember my own name these days). He stayed at 50% oxygen through the night and into this morning. When I called this morning, they were in the middle of the picc procedure, and it was successful. S said they were a little concerned about the pressure settings on the oscillator. The pressure settings control how much his lungs inflate and deflate with each breath, and they were worried about too much inflation. Weston was under more sedation, which was helping.
The NICU was insane when I got there. There are two new babies in Weston's pod, and their parents had come in to see them. The alarms were just going crazy; I guess one of the babies needs a lot of care, like Weston. It was unnerving. And then S told me that Weston had a rough morning. He is just really sick of being messed with. With the sedative, he just lies there with his mouth hanging open, which is hard too see. S also pointed out that Weston's abdomen was a little discolored, which concerns them, and now me.
So, the doctor and nurse practitioner did their rounds with Weston, and I got a mixed bag of good and bad news. First, the oscillator seems to be working well, and they will not have to switch to the jet oscillator at this point. The chest x-ray from this morning showed some improvement. He was down to about 35-40% oxygen when I got there, which is the best it has been in days. The pressure settings have improved as well.
Then, some bad news: the abdomen. They don't know what it is. It could be something as simple as a large liver or burst blood vessels, which can happen when babies are undergoing a lot of procedures. Those things sound serious, but the doctor didn't seen too concerned. The chest x-ray from this morning, which included the abdomen, was non-specific. It could also be necrotizing enterocolitis (NEC), which scares the crap out of me. That was how the Grey's Anatomy baby died. I am NEVER watching that show again! NEC occurs when babies get an infection in their intestines, and gas then escapes into the abdominal cavity. It is very serious, but treatable. The doctor saw me get visibly disturbed when she mentioned NEC and told me that most babies come out of NEC just fine. They are doing another chest/abdomen x-ray at 5:00 this afternoon, so we should know the results after the prayer meeting tonight.
And, the best news: the head ultrasound showed the brain bleed and hydrocephalus resolving!!! This is a huge answer to prayer and one less thing Weston has to battle right now. They will follow up with another head ultrasound in 1-2 weeks.
Some scary stuff: at the outset, I apologize in advance to the hospital marketing/PR department, but this is quite worrisome. EVERY SINGLE BABY in the pod next to Weston's has MRSA. For those of you who don't know, MRSA is an antibiotic-resistant staph bacteria that is incredibly serious. They found MRSA in one baby's endo-tracheal (breathing) tube. Please pray that the MRSA stays out of Weston's pod. MRSA is rampant in hospitals, but they monitor the babies for it constantly. Side note: avoid antibacterial hand wash or anything else with an ingredient called triclosan. It is bad stuff and helps create the MRSA bacteria's, and other superbugs,' resistance to antibiotics. Just use soap and water. There are many natural products that act as natural antibiotics. If I had the energy, I would tell you all about them, but at this point I just have to say: google it. This is not anything the hospital told me; I have done my own research over the years. And I'm sure the sanitizer I use at the hospital all the time has triclosan.
Please pray that Weston's lungs continue to stabilize, that they get the pressure settings down, and that Weston does not develop NEC or MRSA. And we are so thankful that the brain bleed and hydrocephalus are resolving! Please pray that they continue to resolve.
Poor Weston is just being messed with continually. He is one on one with S today, which is good and bad: good because S can give him his full attention, but bad because Weston NEEDS that much attention.
I called the NICU last night and this morning, and Weston was doing pretty well. He is back up to 700 grams, or 1 lb 9 oz (forgive me if I am repeating this information; I barely remember my own name these days). He stayed at 50% oxygen through the night and into this morning. When I called this morning, they were in the middle of the picc procedure, and it was successful. S said they were a little concerned about the pressure settings on the oscillator. The pressure settings control how much his lungs inflate and deflate with each breath, and they were worried about too much inflation. Weston was under more sedation, which was helping.
The NICU was insane when I got there. There are two new babies in Weston's pod, and their parents had come in to see them. The alarms were just going crazy; I guess one of the babies needs a lot of care, like Weston. It was unnerving. And then S told me that Weston had a rough morning. He is just really sick of being messed with. With the sedative, he just lies there with his mouth hanging open, which is hard too see. S also pointed out that Weston's abdomen was a little discolored, which concerns them, and now me.
So, the doctor and nurse practitioner did their rounds with Weston, and I got a mixed bag of good and bad news. First, the oscillator seems to be working well, and they will not have to switch to the jet oscillator at this point. The chest x-ray from this morning showed some improvement. He was down to about 35-40% oxygen when I got there, which is the best it has been in days. The pressure settings have improved as well.
Then, some bad news: the abdomen. They don't know what it is. It could be something as simple as a large liver or burst blood vessels, which can happen when babies are undergoing a lot of procedures. Those things sound serious, but the doctor didn't seen too concerned. The chest x-ray from this morning, which included the abdomen, was non-specific. It could also be necrotizing enterocolitis (NEC), which scares the crap out of me. That was how the Grey's Anatomy baby died. I am NEVER watching that show again! NEC occurs when babies get an infection in their intestines, and gas then escapes into the abdominal cavity. It is very serious, but treatable. The doctor saw me get visibly disturbed when she mentioned NEC and told me that most babies come out of NEC just fine. They are doing another chest/abdomen x-ray at 5:00 this afternoon, so we should know the results after the prayer meeting tonight.
And, the best news: the head ultrasound showed the brain bleed and hydrocephalus resolving!!! This is a huge answer to prayer and one less thing Weston has to battle right now. They will follow up with another head ultrasound in 1-2 weeks.
Some scary stuff: at the outset, I apologize in advance to the hospital marketing/PR department, but this is quite worrisome. EVERY SINGLE BABY in the pod next to Weston's has MRSA. For those of you who don't know, MRSA is an antibiotic-resistant staph bacteria that is incredibly serious. They found MRSA in one baby's endo-tracheal (breathing) tube. Please pray that the MRSA stays out of Weston's pod. MRSA is rampant in hospitals, but they monitor the babies for it constantly. Side note: avoid antibacterial hand wash or anything else with an ingredient called triclosan. It is bad stuff and helps create the MRSA bacteria's, and other superbugs,' resistance to antibiotics. Just use soap and water. There are many natural products that act as natural antibiotics. If I had the energy, I would tell you all about them, but at this point I just have to say: google it. This is not anything the hospital told me; I have done my own research over the years. And I'm sure the sanitizer I use at the hospital all the time has triclosan.
Please pray that Weston's lungs continue to stabilize, that they get the pressure settings down, and that Weston does not develop NEC or MRSA. And we are so thankful that the brain bleed and hydrocephalus are resolving! Please pray that they continue to resolve.
Monday, July 23, 2012
Little Lungs Part 2
Today was another hard day for Weston and for us. I really wish I had some more introspective posts to share, but too much is going on right now. When I called the NICU to check on Weston last night, I was told that he had been put on the oscillator earlier that evening. His blood gases were coming back better, but, according to his night nurse, the settings had to be fine-tuned until Weston could get settled in on the new machine, and they were not at that point yet. I had heard that the oscillator makes the babies vibrate, so I asked the nurse if it would be upsetting for Shannon and I to see. She said that it would be traumatic but not horrible. The night ended up being pretty uneventful.
Although I had to get up at 11:00, 2:00, and 5:00 to pump, I slept surprisingly well between pumping sessions and woke up feeling rested. Shannon slept better too. Today, I have heard from FOUR people that they could not sleep last night, including my mother and sister, so they stayed up and prayed for our family, especially Weston.
I usually don't call to check in on Weston in the mornings, but I did today. S was back after several days off. They had actually switched Weston back to the regular ventilator earlier this morning because his blood gases were good. He had gained 20 grams, putting him up to 1 lb 8 oz, and he pooped by himself, so we were very encouraged. S said they would re-place the picc line later today as well.
By the time we showed up at noon, though, Weston was back on the oscillator. Side note: I watch almost no TV, but I do like Grey's Anatomy, the medical drama. There was an episode last season in which a baby was born very prematurely. I must have been already pregnant when I watched it, because it has stuck with me. Anyway, there was a point in the show when they put the baby on a machine, and entire baby shook violently. It was upsetting to see. Then the baby got a horrible bowel infection and died. Not fun to watch.
After hearing that Weston would vibrate while on the oscillator, I put two and two together and realized that the Grey's Anatomy baby had been on an oscillator, so I was expecting the violent shaking. So, I walked into Weston's pod today, saw him positioned differently and hooked up to a different machine. I looked at Weston, and he was still. So, I was wondering what in the world that big machine was. S must have noticed I was confused, because he said that Weston, in fact, had been placed back on the oscillator. I got closer and saw that his hands were vibrating a bit, NOTHING like Grey's Anatomy. Whew! S had actually seen the same episode and told me how fake everything was. Kind of like my eye-rolling at the legal drama shows when, for example, the cross-examining attorney gets in the witness's face and yells at him/her and then "testifies" him/herself. Sorry to disappoint you all, but that never happens either.
Anyway, I digress. Although viewing Weston on the oscillator was easier than expected for us, Weston HATED it. Some babies don't mind it, but not Weston. They like to sedate babies who don't like the oscillator so that they will totally rest and let the oscillator breathe for them. That's the best way to get better. Weston was sedated when we got there, but he was fighting it. I cupped my hands over his legs, and he was kicking against me for a very long time.
We helped with rounds, and I got a nice gift of POOP when I changed his diaper. He had gone on his own again. :-) He looked bigger and longer to me, but it might just be his new angle. They had to move him around because the tube connected to the oscillator is so much shorter. S told us Dr. M wanted to talk to us, which is always scary. It turned out not to be that scary: he just told us that the ventilators are very hard on babies' lungs, which we already knew, and that the oscillator would hopefully help things improve. The blood gas numbers were coming back good, but his oxygen settings were/are still too high for their comfort level. Too much oxygen is bad for Weston's lungs too.
Also, Weston's scalp IV is still in place. He is scheduled for a head ultrasound tomorrow to check on his brain bleed, but they can't do it with the scalp IV there. Dr. M would rather leave in the IV than do the ultrasound. As much as I'm dying to know about the brain bleed, I took that as a good sign that they are not worried about it. The hydrocephalus is only mild (which I didn't know until yesterday), and his head circumference is stable, so that's probably a pretty good indicator that nothing in his head is worsening.
After we finished rounds, we just hung out with Weston for a while. The humidity has been turned off in his incubator, which means that his skin is a little tougher (yippee!), he does a better job of balancing his electrolytes, AND we can put things in there with him, such as blankets, stuffed animals, and/or photos. I made a little card to take tomorrow, and we'll have Caroline draw him a picture and put some photos of ourselves in there.
So, as we sat there with Weston, he slowly calmed down. His stats were pretty good, and the oxygen settings were OK. We were about to leave when he started to de-sat. I NEVER leave unless all his stats are good, so I figured it would come up in a minute, and we could get going. Anything below 85 is a de-sat. No one gets particularly bothered if he stays in the 80s, usually. He was hovering at 81 for what seemed like a really long time. S came over and silenced the alarm, as usual, but he stayed there at 81.
After what seemed like forever, he started dropping lower, into the high 70s, mid 70s, low 70s. When he got down to the 70s, S came over to check things out. I still had my hand on Weston. Then he went down to 66. I have NEVER seen it that low. S suctioned him and wiggled his tube a bit-no change. Then he turned up his oxygen (to 100%, I later learned)-no change. So he called in the respiratory therapist, P. She came in and asked me (nicely and very calmly) to move. (I stayed remarkably calm through all this.) They messed with him a while, and someone else came in. By this time, the stress had probably sprouted gray hair and wrinkles on me. FINALLY, his numbers improved. S and P were talking calmly about how he had "clamped down."
Dr. M came in a few minutes later, and he was pretty calm too. Apparently babies can clamp down, which means their lungs just shut down for a bit. It sounds absolutely horrifying to me, but no one seemed too alarmed. Sometimes they have to use a bag of oxygen to manually pump into them to get their lungs going again. I know they have had to use the bag on him once before when we were not there. Apparently, it happens more often to older babies after their lungs have gotten more damaged by the ventilator. So we can expect it to happen periodically until, eventually, he will grow out of it. As a side note, I hope I NEVER have to watch them bag my baby.
We finally left, mentally exhausted. It was an emotionally intense visit, but nothing like yesterday. I came home, had lunch, and visited a good friend that I have not gotten to see enough lately. We were bed rest buddies for a while, and I got spoiled seeing her all the time. And, in case you're horrified at that, she is my neighbor, so I was not traipsing all over town to see her in violation of my bed rest instructions. And I'm happy to say she had a healthy, full-term baby after all that bed rest. Another thing: as her in-law mentioned, if you want to get pregnant, don't move to our street!
Before leaving, I asked S to call me when it was done. He called mid-afternoon to tell me that they were going to wait and do it tomorrow because Weston just wasn't stable enough yet. That was a little hard to hear. His latest blood gas had come back at a good number for the carbon dioxide, but his oxygen settings were still much higher than they wanted. S started him on a sedative drip, which was a higher and continuous dose of what he had been receiving before. Weston was still really fighting the oscillator, and the key is to have him completely relax and let the oscillator breathe for him. It's the best way for his lungs to get better. They also started him on antibiotics, just as a precaution, but so far the blood test and cultures indicate no infection. He was on 90% oxygen at that time, so S was hoping the sedative would help. They also had to adjust the pressure settings. It was starting to make me nervous, because you obviously can't go much higher than 90%. But he had some good news: they had taken a chest x-ray this morning before putting Weston back on the oscillator. They took another one this afternoon, and it was already looking better: the alveoli were already starting to open up.
A few hours later, Shannon mentioned that he is just weary over all this and that he wanted to go see Weston again. It was dinnertime, so practically speaking it was not the best idea. Then he asked Caroline if she wanted to go see Baby Weston, and she said YES. So off we went. It was 6:40 when we got there, and I apologized profusely to S for coming right before shift change, but he was a very good sport. By then, the sedative had kicked in, and Weston was snug as a bug in a rug. He had a little dolphin tucked around his head; he looked so cute. Thankfully, the oxygen setting was back down to 50%, which is obviously much better. The goal is eventually for Weston to get down to that setting without a sedative, but it could take a while. All the blood gases were coming back good.
Also, the twins that were in Weston's pod were moved to the intermediate nursery today. It looked really empty in there, but there was already a new baby in there by the time we went back this evening. We had dinner at Smashburger and put Caroline to bed late, but she is fine. Her latest thing is talking about how we are doing things together. At dinner, she said, "We're eating together!" I'm so happy the three of us are together again and can't wait until the FOUR of us are together all the time, and I'll have to change my blog name.
A friend of ours, who is also an elder at our church, is getting a prayer meeting together for Weston at the hospital tomorrow night. We are so grateful for this group of people, some of whom we don't even know, who are praying so hard for our family. It is truly humbling.
Please keep praying for us. This is such a long road, and this ongoing lung issue is the scariest thing yet about Weston's situation. We need the breath of heaven. Please pray that the Little Lungs Part 3 post will simply inform you that Weston is off the oscillator and that his lungs have improved.
The poor and needy search for water, but there is none;
their tongues are parched with thirst.
But I the Lord will answer them;
I, the God of Israel, will not forsake them.
I will make rivers flow on barren heights,
and springs within the valleys.
I will turn the desert into pools of water,
and the parched ground into springs.
I will put in the desert the cedar and the acacia, the myrtle and the olive.
I will set junipers in the wasteland,
the fir and the cypress together,
so that people may see and know,
may consider and understand,
that the hand of the Lord has done this,
that the Holy One of Israel has created it.
Isaiah 41:17-20
Although I had to get up at 11:00, 2:00, and 5:00 to pump, I slept surprisingly well between pumping sessions and woke up feeling rested. Shannon slept better too. Today, I have heard from FOUR people that they could not sleep last night, including my mother and sister, so they stayed up and prayed for our family, especially Weston.
I usually don't call to check in on Weston in the mornings, but I did today. S was back after several days off. They had actually switched Weston back to the regular ventilator earlier this morning because his blood gases were good. He had gained 20 grams, putting him up to 1 lb 8 oz, and he pooped by himself, so we were very encouraged. S said they would re-place the picc line later today as well.
By the time we showed up at noon, though, Weston was back on the oscillator. Side note: I watch almost no TV, but I do like Grey's Anatomy, the medical drama. There was an episode last season in which a baby was born very prematurely. I must have been already pregnant when I watched it, because it has stuck with me. Anyway, there was a point in the show when they put the baby on a machine, and entire baby shook violently. It was upsetting to see. Then the baby got a horrible bowel infection and died. Not fun to watch.
After hearing that Weston would vibrate while on the oscillator, I put two and two together and realized that the Grey's Anatomy baby had been on an oscillator, so I was expecting the violent shaking. So, I walked into Weston's pod today, saw him positioned differently and hooked up to a different machine. I looked at Weston, and he was still. So, I was wondering what in the world that big machine was. S must have noticed I was confused, because he said that Weston, in fact, had been placed back on the oscillator. I got closer and saw that his hands were vibrating a bit, NOTHING like Grey's Anatomy. Whew! S had actually seen the same episode and told me how fake everything was. Kind of like my eye-rolling at the legal drama shows when, for example, the cross-examining attorney gets in the witness's face and yells at him/her and then "testifies" him/herself. Sorry to disappoint you all, but that never happens either.
Anyway, I digress. Although viewing Weston on the oscillator was easier than expected for us, Weston HATED it. Some babies don't mind it, but not Weston. They like to sedate babies who don't like the oscillator so that they will totally rest and let the oscillator breathe for them. That's the best way to get better. Weston was sedated when we got there, but he was fighting it. I cupped my hands over his legs, and he was kicking against me for a very long time.
We helped with rounds, and I got a nice gift of POOP when I changed his diaper. He had gone on his own again. :-) He looked bigger and longer to me, but it might just be his new angle. They had to move him around because the tube connected to the oscillator is so much shorter. S told us Dr. M wanted to talk to us, which is always scary. It turned out not to be that scary: he just told us that the ventilators are very hard on babies' lungs, which we already knew, and that the oscillator would hopefully help things improve. The blood gas numbers were coming back good, but his oxygen settings were/are still too high for their comfort level. Too much oxygen is bad for Weston's lungs too.
Also, Weston's scalp IV is still in place. He is scheduled for a head ultrasound tomorrow to check on his brain bleed, but they can't do it with the scalp IV there. Dr. M would rather leave in the IV than do the ultrasound. As much as I'm dying to know about the brain bleed, I took that as a good sign that they are not worried about it. The hydrocephalus is only mild (which I didn't know until yesterday), and his head circumference is stable, so that's probably a pretty good indicator that nothing in his head is worsening.
After we finished rounds, we just hung out with Weston for a while. The humidity has been turned off in his incubator, which means that his skin is a little tougher (yippee!), he does a better job of balancing his electrolytes, AND we can put things in there with him, such as blankets, stuffed animals, and/or photos. I made a little card to take tomorrow, and we'll have Caroline draw him a picture and put some photos of ourselves in there.
So, as we sat there with Weston, he slowly calmed down. His stats were pretty good, and the oxygen settings were OK. We were about to leave when he started to de-sat. I NEVER leave unless all his stats are good, so I figured it would come up in a minute, and we could get going. Anything below 85 is a de-sat. No one gets particularly bothered if he stays in the 80s, usually. He was hovering at 81 for what seemed like a really long time. S came over and silenced the alarm, as usual, but he stayed there at 81.
After what seemed like forever, he started dropping lower, into the high 70s, mid 70s, low 70s. When he got down to the 70s, S came over to check things out. I still had my hand on Weston. Then he went down to 66. I have NEVER seen it that low. S suctioned him and wiggled his tube a bit-no change. Then he turned up his oxygen (to 100%, I later learned)-no change. So he called in the respiratory therapist, P. She came in and asked me (nicely and very calmly) to move. (I stayed remarkably calm through all this.) They messed with him a while, and someone else came in. By this time, the stress had probably sprouted gray hair and wrinkles on me. FINALLY, his numbers improved. S and P were talking calmly about how he had "clamped down."
Dr. M came in a few minutes later, and he was pretty calm too. Apparently babies can clamp down, which means their lungs just shut down for a bit. It sounds absolutely horrifying to me, but no one seemed too alarmed. Sometimes they have to use a bag of oxygen to manually pump into them to get their lungs going again. I know they have had to use the bag on him once before when we were not there. Apparently, it happens more often to older babies after their lungs have gotten more damaged by the ventilator. So we can expect it to happen periodically until, eventually, he will grow out of it. As a side note, I hope I NEVER have to watch them bag my baby.
We finally left, mentally exhausted. It was an emotionally intense visit, but nothing like yesterday. I came home, had lunch, and visited a good friend that I have not gotten to see enough lately. We were bed rest buddies for a while, and I got spoiled seeing her all the time. And, in case you're horrified at that, she is my neighbor, so I was not traipsing all over town to see her in violation of my bed rest instructions. And I'm happy to say she had a healthy, full-term baby after all that bed rest. Another thing: as her in-law mentioned, if you want to get pregnant, don't move to our street!
Before leaving, I asked S to call me when it was done. He called mid-afternoon to tell me that they were going to wait and do it tomorrow because Weston just wasn't stable enough yet. That was a little hard to hear. His latest blood gas had come back at a good number for the carbon dioxide, but his oxygen settings were still much higher than they wanted. S started him on a sedative drip, which was a higher and continuous dose of what he had been receiving before. Weston was still really fighting the oscillator, and the key is to have him completely relax and let the oscillator breathe for him. It's the best way for his lungs to get better. They also started him on antibiotics, just as a precaution, but so far the blood test and cultures indicate no infection. He was on 90% oxygen at that time, so S was hoping the sedative would help. They also had to adjust the pressure settings. It was starting to make me nervous, because you obviously can't go much higher than 90%. But he had some good news: they had taken a chest x-ray this morning before putting Weston back on the oscillator. They took another one this afternoon, and it was already looking better: the alveoli were already starting to open up.
A few hours later, Shannon mentioned that he is just weary over all this and that he wanted to go see Weston again. It was dinnertime, so practically speaking it was not the best idea. Then he asked Caroline if she wanted to go see Baby Weston, and she said YES. So off we went. It was 6:40 when we got there, and I apologized profusely to S for coming right before shift change, but he was a very good sport. By then, the sedative had kicked in, and Weston was snug as a bug in a rug. He had a little dolphin tucked around his head; he looked so cute. Thankfully, the oxygen setting was back down to 50%, which is obviously much better. The goal is eventually for Weston to get down to that setting without a sedative, but it could take a while. All the blood gases were coming back good.
Also, the twins that were in Weston's pod were moved to the intermediate nursery today. It looked really empty in there, but there was already a new baby in there by the time we went back this evening. We had dinner at Smashburger and put Caroline to bed late, but she is fine. Her latest thing is talking about how we are doing things together. At dinner, she said, "We're eating together!" I'm so happy the three of us are together again and can't wait until the FOUR of us are together all the time, and I'll have to change my blog name.
A friend of ours, who is also an elder at our church, is getting a prayer meeting together for Weston at the hospital tomorrow night. We are so grateful for this group of people, some of whom we don't even know, who are praying so hard for our family. It is truly humbling.
Please keep praying for us. This is such a long road, and this ongoing lung issue is the scariest thing yet about Weston's situation. We need the breath of heaven. Please pray that the Little Lungs Part 3 post will simply inform you that Weston is off the oscillator and that his lungs have improved.
The poor and needy search for water, but there is none;
their tongues are parched with thirst.
But I the Lord will answer them;
I, the God of Israel, will not forsake them.
I will make rivers flow on barren heights,
and springs within the valleys.
I will turn the desert into pools of water,
and the parched ground into springs.
I will put in the desert the cedar and the acacia, the myrtle and the olive.
I will set junipers in the wasteland,
the fir and the cypress together,
so that people may see and know,
may consider and understand,
that the hand of the Lord has done this,
that the Holy One of Israel has created it.
Isaiah 41:17-20
The Incident
I wrote this the other night before all the lung drama happened.
So, almost immediately after posting last night's post about trying to stay positive and looking at the big picture regarding Weston's medical progress, I called the NICU and discovered he lost 50 grams AGAIN (back down to 1 lb 7 oz), was back up to 50% oxygen after an afternoon of de-sats, and was not with his assigned primary nurse. Sigh...I'll admit I had a very hard time practicing what I had just preached.
Now, after sleeping through one pumping session and oversleeping through the next one, I have had to cancel my morning plans to make up those sessions. So, I have some unexpected time to myself and, therefore, will blog about the incident that started this crazy journey.
NOTE: If you don't like reading about gross pregnancy stuff, this might not be the post for you.
On April 18, 2012, I was 12 weeks 5 days pregnant. I had gone to my midwife a couple of days before and heard the baby's heart beat. I was also finally feeling good again after weeks and weeks of debilitating nausea and fatigue and the parenting from the couch that comes with it all. So, I decided to take Caroline to the park. It would be the first semi-physical activity I had had in many weeks.
The park is about a half mile walk from our house. On that date, a large portion was fenced off for lawn repair, so I had to walk around it. It probably ended up being about a 3/4 mile walk. I pushed Caroline in her stroller, and she was so excited to be going to the park again. It was a beautiful day.
We got to the park, and Caroline wanted to swing. Usually I recognize a handful of people at the park, but I didn't that day. There was a man with his granddaughter on the swings next to us, and two women with two toddlers. Caroline likes to swing on EVERY swing, so I was lifting her in and out of swings a lot.
After only about five minutes of this, I felt something. I looked down and saw some blood on my pants (I was wearing cropped, fitted khakis). I immediately knew this was NOT a good sign, so I left Caroline on the swing and immediately walked over to the stroller to get my phone and call my midwife. Caroline got mad that I had stopped swinging her, but I was obviously in the middle of a very urgent situation. It is about 50 feet from the swings to where my stroller was, and the blood was still coming. It was starting to trickle down my legs and was staining my pants. But I was feeling no pain. By this time, I was basically in a panic. Somehow I found my phone and called the midwife. Our conversation went something like this:
Me (screaming): I'm bleeding, I'm bleeding, and I'm at the park!
Midwife: Wait, who is this?
Me: This is Shauna Yoder. I was just there the other day. I'm 12 weeks.
Midwife: OK. Are you cramping or in any pain?
Me: No.
Midwife: Great. That's a very good sign. You need to get home and lie down.
Me (still screaming): But I'm at the park. It's still coming and coming. [By this point, the blood had flowed past the bottom of my pants and was going into my shoes, and I was attracting the attention of the others at the park. Poor Caroline was just standing there screaming, and I couldn't pay any attention to her.]
The gist of the rest of the conversation was that it was OK for me to walk home. Practically speaking, I had no idea how I was going to do that, with a screaming toddler, panicking myself, and pants and shoes soaked in blood. By this time, Caroline knew something was going on and was upset about much more than the interrupted swinging.
In retrospect, it never occurred to me to call 9-1-1. I was convinced that I was losing the baby, and I knew the hospital couldn't do anything for me. I also had Caroline to worry about. And if I WAS losing my baby, I wanted it to happen in the privacy of my own home, not at an impersonal hospital (or park) surrounded by strangers.
By the time I hung up the phone, the two women had somehow materialized next to me. They asked how they could help, but I could barely speak. They had two little kids with them, so they were somewhat limited in what they could do. They offered for one of them to walk Caroline home in the stroller while the other one drove me home. As trustworthy as they seemed, I still was very leery about leaving my child with a perfect stranger. Before I could say anything, they offered for one of them to drive us home while the other one stayed with their two kids. That was a good solution.
I was still bleeding and bleeding, and this woman had a very nice white Lincoln Navigator, so I was worried about staining it. But they had planned a picnic and had a big blanket. They even had a toddler seat that Caroline could ride in. As this woman (Ashley, I later learned) put Caroline in the car seat, I called Shannon and told him to get home.
During the short drive home, Ashley told me that she had had a bleeding episode with her second pregnancy while she was lifting her toddler son, and her second child turned out just fine. After hearing that, and the midwife's statement that the fact that I wasn't cramping was a good sign, I felt better and more optimistic that my baby might be OK. I hope I run into Ashley again someday so that I can thank her for her kindness.
When we got home, Ashley took Caroline out of the car seat and got the stroller out for me. Caroline saw all the blood and starting crying and saying, "Mommy, clean it up." That was such a sad moment for me. I showered off and got in bed. I was still bleeding, but it had slowed down. Caroline was just hysterical. I asked her to come sit in bed with me, but she was scared to even get near me. She started screaming for her daddy. He had had to stop for gas on the way home, so it took him a little longer than usual.
After we calmed down a bit, I called my mom and then the midwife. The midwife knew of a traveling sonographer who could come to our house for an ultrasound that day. I called him, and he said he could be there in about 3 hours. So we had to wait...and wait. If I had not heard those two hopeful statements/stories, I would have been a complete disaster.
By the way, the traveling monographer thing is just about the coolest ever.
So the sonographer showed up mid-afternoon. Caroline was up from her nap, and I was afraid of my reaction upsetting her if we got bad news. But I had to have Shannon in there. I was pretty calm by that point. The monographer had me lie down on the couch and hooked his machine up to our TV so we could see the image on the TV. Very cool! He asked about my symptoms and then said he was guessing that I either had an amniochorionic separation or something else (I can't remember).
Before getting started, the sonographer paused, looked me in the eye, and said, "Are you prepared for the worst?" Well, how the hell am I supposed to answer that question?! I don't even remember what I said; I think I just looked at him. I had been thinking of that scenario ALL DAY. He said something like, "As ready as you can be, right?" and got started.
Within about 30 seconds, he said, "Your baby is fine." We were overjoyed. After a couple of minutes, he said, "I can't find anything to explain the bleeding." He looked around some more and finally said, "It looks like you have an amniochorionic separation. You will continue bleeding for a while, and your midwife is probably going to prescribe complete bed rest." He called her, I talked to her, and-surprise!-she put me on bed rest.
For those of you dying to know, an amniochorionic separation occurs when a small part of the membrane surrounding the placenta pulls away from the uterine wall. I still don't quite understand it, and there is not very much information about it out there. Bed rest is the only treatment, and the vast majority resolve by 20 weeks gestation. I learned that 1-3% of pregnancies experience an amniochorionic separation. Of those incidents, about 85% resolve on their own. We all know now that mine did NOT resolve, which puts me in the .0015-.0045 percent. I always thought it would be more satisfying to say, "I am the 1%," but, no, it's not.
If these odds continue and my luck runs the other way, let me know if you want me to buy you a lottery ticket. I'll charge a small commission, and THERE is my new work-from-home career.
So, thus began my bed rest journey. I was on bed rest at home for about 8 weeks before I had to go to the hospital. To state the obvious, bed rest with a toddler is very difficult. We got through it with a lot of help.
So, almost immediately after posting last night's post about trying to stay positive and looking at the big picture regarding Weston's medical progress, I called the NICU and discovered he lost 50 grams AGAIN (back down to 1 lb 7 oz), was back up to 50% oxygen after an afternoon of de-sats, and was not with his assigned primary nurse. Sigh...I'll admit I had a very hard time practicing what I had just preached.
Now, after sleeping through one pumping session and oversleeping through the next one, I have had to cancel my morning plans to make up those sessions. So, I have some unexpected time to myself and, therefore, will blog about the incident that started this crazy journey.
NOTE: If you don't like reading about gross pregnancy stuff, this might not be the post for you.
On April 18, 2012, I was 12 weeks 5 days pregnant. I had gone to my midwife a couple of days before and heard the baby's heart beat. I was also finally feeling good again after weeks and weeks of debilitating nausea and fatigue and the parenting from the couch that comes with it all. So, I decided to take Caroline to the park. It would be the first semi-physical activity I had had in many weeks.
The park is about a half mile walk from our house. On that date, a large portion was fenced off for lawn repair, so I had to walk around it. It probably ended up being about a 3/4 mile walk. I pushed Caroline in her stroller, and she was so excited to be going to the park again. It was a beautiful day.
We got to the park, and Caroline wanted to swing. Usually I recognize a handful of people at the park, but I didn't that day. There was a man with his granddaughter on the swings next to us, and two women with two toddlers. Caroline likes to swing on EVERY swing, so I was lifting her in and out of swings a lot.
After only about five minutes of this, I felt something. I looked down and saw some blood on my pants (I was wearing cropped, fitted khakis). I immediately knew this was NOT a good sign, so I left Caroline on the swing and immediately walked over to the stroller to get my phone and call my midwife. Caroline got mad that I had stopped swinging her, but I was obviously in the middle of a very urgent situation. It is about 50 feet from the swings to where my stroller was, and the blood was still coming. It was starting to trickle down my legs and was staining my pants. But I was feeling no pain. By this time, I was basically in a panic. Somehow I found my phone and called the midwife. Our conversation went something like this:
Me (screaming): I'm bleeding, I'm bleeding, and I'm at the park!
Midwife: Wait, who is this?
Me: This is Shauna Yoder. I was just there the other day. I'm 12 weeks.
Midwife: OK. Are you cramping or in any pain?
Me: No.
Midwife: Great. That's a very good sign. You need to get home and lie down.
Me (still screaming): But I'm at the park. It's still coming and coming. [By this point, the blood had flowed past the bottom of my pants and was going into my shoes, and I was attracting the attention of the others at the park. Poor Caroline was just standing there screaming, and I couldn't pay any attention to her.]
The gist of the rest of the conversation was that it was OK for me to walk home. Practically speaking, I had no idea how I was going to do that, with a screaming toddler, panicking myself, and pants and shoes soaked in blood. By this time, Caroline knew something was going on and was upset about much more than the interrupted swinging.
In retrospect, it never occurred to me to call 9-1-1. I was convinced that I was losing the baby, and I knew the hospital couldn't do anything for me. I also had Caroline to worry about. And if I WAS losing my baby, I wanted it to happen in the privacy of my own home, not at an impersonal hospital (or park) surrounded by strangers.
By the time I hung up the phone, the two women had somehow materialized next to me. They asked how they could help, but I could barely speak. They had two little kids with them, so they were somewhat limited in what they could do. They offered for one of them to walk Caroline home in the stroller while the other one drove me home. As trustworthy as they seemed, I still was very leery about leaving my child with a perfect stranger. Before I could say anything, they offered for one of them to drive us home while the other one stayed with their two kids. That was a good solution.
I was still bleeding and bleeding, and this woman had a very nice white Lincoln Navigator, so I was worried about staining it. But they had planned a picnic and had a big blanket. They even had a toddler seat that Caroline could ride in. As this woman (Ashley, I later learned) put Caroline in the car seat, I called Shannon and told him to get home.
During the short drive home, Ashley told me that she had had a bleeding episode with her second pregnancy while she was lifting her toddler son, and her second child turned out just fine. After hearing that, and the midwife's statement that the fact that I wasn't cramping was a good sign, I felt better and more optimistic that my baby might be OK. I hope I run into Ashley again someday so that I can thank her for her kindness.
When we got home, Ashley took Caroline out of the car seat and got the stroller out for me. Caroline saw all the blood and starting crying and saying, "Mommy, clean it up." That was such a sad moment for me. I showered off and got in bed. I was still bleeding, but it had slowed down. Caroline was just hysterical. I asked her to come sit in bed with me, but she was scared to even get near me. She started screaming for her daddy. He had had to stop for gas on the way home, so it took him a little longer than usual.
After we calmed down a bit, I called my mom and then the midwife. The midwife knew of a traveling sonographer who could come to our house for an ultrasound that day. I called him, and he said he could be there in about 3 hours. So we had to wait...and wait. If I had not heard those two hopeful statements/stories, I would have been a complete disaster.
By the way, the traveling monographer thing is just about the coolest ever.
So the sonographer showed up mid-afternoon. Caroline was up from her nap, and I was afraid of my reaction upsetting her if we got bad news. But I had to have Shannon in there. I was pretty calm by that point. The monographer had me lie down on the couch and hooked his machine up to our TV so we could see the image on the TV. Very cool! He asked about my symptoms and then said he was guessing that I either had an amniochorionic separation or something else (I can't remember).
Before getting started, the sonographer paused, looked me in the eye, and said, "Are you prepared for the worst?" Well, how the hell am I supposed to answer that question?! I don't even remember what I said; I think I just looked at him. I had been thinking of that scenario ALL DAY. He said something like, "As ready as you can be, right?" and got started.
Within about 30 seconds, he said, "Your baby is fine." We were overjoyed. After a couple of minutes, he said, "I can't find anything to explain the bleeding." He looked around some more and finally said, "It looks like you have an amniochorionic separation. You will continue bleeding for a while, and your midwife is probably going to prescribe complete bed rest." He called her, I talked to her, and-surprise!-she put me on bed rest.
For those of you dying to know, an amniochorionic separation occurs when a small part of the membrane surrounding the placenta pulls away from the uterine wall. I still don't quite understand it, and there is not very much information about it out there. Bed rest is the only treatment, and the vast majority resolve by 20 weeks gestation. I learned that 1-3% of pregnancies experience an amniochorionic separation. Of those incidents, about 85% resolve on their own. We all know now that mine did NOT resolve, which puts me in the .0015-.0045 percent. I always thought it would be more satisfying to say, "I am the 1%," but, no, it's not.
If these odds continue and my luck runs the other way, let me know if you want me to buy you a lottery ticket. I'll charge a small commission, and THERE is my new work-from-home career.
So, thus began my bed rest journey. I was on bed rest at home for about 8 weeks before I had to go to the hospital. To state the obvious, bed rest with a toddler is very difficult. We got through it with a lot of help.
Sunday, July 22, 2012
Little Lungs
It turns out that I really need to practice what I "preached" in my last post. It has been a very rough day, and Weston is having some trouble. Although I felt a little better last night, I have had a nagging feeling that something isn't right since yesterday morning. After I posted last night, I called the NICU and learned that Weston had continued to de-sat and that he lost 50 grams again, which puts him back down to 1 lb 7 oz. Mother's intuition is very powerful, scary, and inspiring, sometimes all at the same time.
I called the NICU this morning to check on Weston and was told that he continues to de-sat and that his blood gas test came back with carbon dioxide at 70. That is the highest it's been, and normally they like it below 50. However, I learned this afternoon that 60 is an acceptable range for a preemie as small as Weston. So I was apprehensive before I even got there today.
As I entered the Weston's pod in the NICU, I saw the computer screen with two lung x-rays on it. As I got closer, I saw that they were Weston's x-rays. I then met the nurse practitioner, R, and she said she wanted to speak to me immediately and led me over to the computer. There were two x-rays: one from July 16 and another from today. First, the picc line apparently was not in a central line, where it needs to be, so they have to re-place it. That was a disappointment.
Even more unnerving, though, the second x-ray showed chronic lung changes. The ventilator is damaging Weston's lungs, which is very common with preemies, but of course he can't survive without it yet. R told me to picture an upside-down stalk of broccoli. The tips of the broccoli are round little sacs called alveoli. I forget exactly what the alveoli do, but suffice it to say they are important. Prolonged use of the ventilator can cause the alveoli to be misshapen or burst. R said they don't definitively diagnose chronic lung disease until he is 30 days old, I think (he is 15 days today). R also said that none of this changes the mortality rates, thankfully.
According to R, the plan was to observe whether Weston's oxygen saturation improve and, even more so, whether his blood gas numbers improve, specifically that the CO2 will go down. If his gas numbers do not improve and if they have to turn his oxygen settings up high enough, Weston will have to be switched to another type of ventilator called an oscillator. Apparently, an oscillator is more high-tech and gentler on the lungs, but I think it requires even more oxygen (which is part of the problem with the ventilator).
So I just sat there and cried my eyes out. When I was finally able to pull myself together, I went to Weston's incubator and could tell a difference immediately. His little eyes looked tired. Then, to make matters worse, a nurse I had never seen walked by, looked at the computer screen with Weston's x-rays on them, and exclaimed in a horrified tone, "Oh, my goodness!" I sincerely hope she was looking at something else or talking about something else.
I helped with his round, which went fine. He is still tolerating his feedings just fine, and he pooped a tiny bit on his own last night. :-) R told me they were going to do another blood gas at 2:00. I sat down, got comfortable again, and cupped my hand around him. After a while, they wanted to put in an arterial line (like an IV) so they could monitor his blood pressure continuously. They told me I might want to leave while they did the procedure. Before I left, I could see Weston silently crying really hard. I couldn't do anything to comfort him, which is excruciating as a mother. I just walked away and tried to hold myself together.
When the procedure was over, I was told Weston had had an arterial spasm, and that's why his hand was white. I hadn't even noticed that, but then I saw that his hand was, indeed, completely white. What else can go wrong?! Thankfully, it went away within a few minutes. So I sat back down with Weston.
With the new monitor, I could see his blood pressure, and his nurse told me it was very good. He was still de-satting but not as much as before. His oxygen was up around 65%, which is very high. I put a post up on Facebook that things with his lungs weren't going well and asking for prayers. Within ten minutes of that post, his nurse was able to turn his oxygen down four times to about 53%! Shannon got there, and I left to go pump.
When I returned about thirty minutes later, I was told the blood gas had come back better (in the 60s, I think), but his oxygen had been turned up again. A little while later, R did her rounds with the neonatologist, Dr. M. Dr. M echoed what R had told me earlier and said it was likely that Weston would have to go on the oscillator, although not yet. He ordered another blood gas for 8:00 tonight and a CBC (blood test) and culture to rule out infection.
It sounds like the oscillator might be really helpful for Weston if it is needed. It scares me, though, because it represents a higher level of intervention. L, Weston's nurse from the other day who is with another little guy in Weston's pod today, told me of a little girl she worked with who was on an oscillator for 3 weeks. Her mother sat with her and touched her every day and fed her breast milk, which is crucial. The oscillator really helped her, and she went home with no lung disease. I have heard of other hopeful outcomes with oscillators since then as well. A big downside to the oscillator is that we can't hold Weston at all while he's in there.
With all this, there is still the brain bleed. We were told that a quiet week would provide the best outcome for the brain bleed. The last few days have been anything but quiet. We need lots of prayers: if Weston has to go on the oscillator, that he will continue to tolerate his feedings and grow; that the oscillator will provide a break to his little lungs; that his lung function will improve; that he will not get an infection; and that the brain bleed and hydrocephalus will go away or at least not worsen.
Please also pray for baby R, whom I have mentioned before. I don't know exactly what is going on with him, but there was a lot of activity around his incubator today, and his dad told me they weren't having a good day.
After we said goodbye to Weston, Shannon and I went to the hospital's chapel (it's a Catholic hospital) to get some peace from the chaotic NICU and to pray for Weston. As I prayed, a certain song came to mind. I struggled with its appropriateness, given the facts that I mostly certainly am not the Virgin Mary and that I did not carry and give birth to the Savior of the world. But, given the circumstances, I think God put the song in my head:
Breath of Heaven
I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father, you have come
And chosen me now...
I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk with this path alone?
Be with me now, be with me now.
Breath of heaven, hold me together
Be forever near me, breath of heaven
Breath of heaven, lighten my darkness
Pour over me your holiness, for you are holy
Breath of heaven
Do you wonder, as you watch my face
If a wiser one should have had my place?
But I offer all I am
For the mercy of your plan
Help me be strong, help me be, help me
I called the NICU this morning to check on Weston and was told that he continues to de-sat and that his blood gas test came back with carbon dioxide at 70. That is the highest it's been, and normally they like it below 50. However, I learned this afternoon that 60 is an acceptable range for a preemie as small as Weston. So I was apprehensive before I even got there today.
As I entered the Weston's pod in the NICU, I saw the computer screen with two lung x-rays on it. As I got closer, I saw that they were Weston's x-rays. I then met the nurse practitioner, R, and she said she wanted to speak to me immediately and led me over to the computer. There were two x-rays: one from July 16 and another from today. First, the picc line apparently was not in a central line, where it needs to be, so they have to re-place it. That was a disappointment.
Even more unnerving, though, the second x-ray showed chronic lung changes. The ventilator is damaging Weston's lungs, which is very common with preemies, but of course he can't survive without it yet. R told me to picture an upside-down stalk of broccoli. The tips of the broccoli are round little sacs called alveoli. I forget exactly what the alveoli do, but suffice it to say they are important. Prolonged use of the ventilator can cause the alveoli to be misshapen or burst. R said they don't definitively diagnose chronic lung disease until he is 30 days old, I think (he is 15 days today). R also said that none of this changes the mortality rates, thankfully.
According to R, the plan was to observe whether Weston's oxygen saturation improve and, even more so, whether his blood gas numbers improve, specifically that the CO2 will go down. If his gas numbers do not improve and if they have to turn his oxygen settings up high enough, Weston will have to be switched to another type of ventilator called an oscillator. Apparently, an oscillator is more high-tech and gentler on the lungs, but I think it requires even more oxygen (which is part of the problem with the ventilator).
So I just sat there and cried my eyes out. When I was finally able to pull myself together, I went to Weston's incubator and could tell a difference immediately. His little eyes looked tired. Then, to make matters worse, a nurse I had never seen walked by, looked at the computer screen with Weston's x-rays on them, and exclaimed in a horrified tone, "Oh, my goodness!" I sincerely hope she was looking at something else or talking about something else.
I helped with his round, which went fine. He is still tolerating his feedings just fine, and he pooped a tiny bit on his own last night. :-) R told me they were going to do another blood gas at 2:00. I sat down, got comfortable again, and cupped my hand around him. After a while, they wanted to put in an arterial line (like an IV) so they could monitor his blood pressure continuously. They told me I might want to leave while they did the procedure. Before I left, I could see Weston silently crying really hard. I couldn't do anything to comfort him, which is excruciating as a mother. I just walked away and tried to hold myself together.
When the procedure was over, I was told Weston had had an arterial spasm, and that's why his hand was white. I hadn't even noticed that, but then I saw that his hand was, indeed, completely white. What else can go wrong?! Thankfully, it went away within a few minutes. So I sat back down with Weston.
With the new monitor, I could see his blood pressure, and his nurse told me it was very good. He was still de-satting but not as much as before. His oxygen was up around 65%, which is very high. I put a post up on Facebook that things with his lungs weren't going well and asking for prayers. Within ten minutes of that post, his nurse was able to turn his oxygen down four times to about 53%! Shannon got there, and I left to go pump.
When I returned about thirty minutes later, I was told the blood gas had come back better (in the 60s, I think), but his oxygen had been turned up again. A little while later, R did her rounds with the neonatologist, Dr. M. Dr. M echoed what R had told me earlier and said it was likely that Weston would have to go on the oscillator, although not yet. He ordered another blood gas for 8:00 tonight and a CBC (blood test) and culture to rule out infection.
It sounds like the oscillator might be really helpful for Weston if it is needed. It scares me, though, because it represents a higher level of intervention. L, Weston's nurse from the other day who is with another little guy in Weston's pod today, told me of a little girl she worked with who was on an oscillator for 3 weeks. Her mother sat with her and touched her every day and fed her breast milk, which is crucial. The oscillator really helped her, and she went home with no lung disease. I have heard of other hopeful outcomes with oscillators since then as well. A big downside to the oscillator is that we can't hold Weston at all while he's in there.
With all this, there is still the brain bleed. We were told that a quiet week would provide the best outcome for the brain bleed. The last few days have been anything but quiet. We need lots of prayers: if Weston has to go on the oscillator, that he will continue to tolerate his feedings and grow; that the oscillator will provide a break to his little lungs; that his lung function will improve; that he will not get an infection; and that the brain bleed and hydrocephalus will go away or at least not worsen.
Please also pray for baby R, whom I have mentioned before. I don't know exactly what is going on with him, but there was a lot of activity around his incubator today, and his dad told me they weren't having a good day.
After we said goodbye to Weston, Shannon and I went to the hospital's chapel (it's a Catholic hospital) to get some peace from the chaotic NICU and to pray for Weston. As I prayed, a certain song came to mind. I struggled with its appropriateness, given the facts that I mostly certainly am not the Virgin Mary and that I did not carry and give birth to the Savior of the world. But, given the circumstances, I think God put the song in my head:
Breath of Heaven
I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father, you have come
And chosen me now...
I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk with this path alone?
Be with me now, be with me now.
Breath of heaven, hold me together
Be forever near me, breath of heaven
Breath of heaven, lighten my darkness
Pour over me your holiness, for you are holy
Breath of heaven
Do you wonder, as you watch my face
If a wiser one should have had my place?
But I offer all I am
For the mercy of your plan
Help me be strong, help me be, help me
Breath of heaven, hold me together
Be forever near me, breath of heaven
Breath of heaven, lighten my darkness
Pour over me your holiness, for you are holy
Breath of heaven
Our whole family needs the breath of heaven right now, Weston literally. Please continue praying for us.
Saturday, July 21, 2012
Contemplation
Today my mind was all over the place. It was Weston's two-week birthday, and I realized after my visit with him today that I didn't get any pictures.
Although I can't speak for Shannon, I think we both have done a good job of putting this brain bleed and hydrocephalus thing out of our heads for the moment. There is nothing we can do about it at this point, and we won't know more until next Wednesday, or Tuesday at the earliest. Be anxious for nothing...
However, my mom left this morning. I also made the mistake of thinking about the long haul in the NICU that we have ahead of us, instead of taking it day by day. Those two things, combined with my utter exhaustion, were the cause of a meltdown this morning. My mom has done such a good job of holding down the fort at home and watching Caroline while I pump/sleep/visit or obsess about Weston, not to mention emotionally supporting me, so it's overwhelming to think about how we are going to get along without her. I felt the same way when she left after Caroline was born.
I called the NICU this morning to see how Weston was doing. He had a new nurse, and she said that his blood gas numbers were a little high and that he had been de-satting, so she had increased his oxygen to 57%. That is the highest it's been, to my knowledge, since his birth. After I hung up the phone, I felt like things were moving in the wrong direction with his lungs and was pretty worried about that.
The best ways to handle the NICU experience are paradoxical. With respect to the length of the stay, and the emotional roller coaster and stress that go along with it, parents should really take it day by day. If I were to think about the fact that Weston will be in the NICU for at least 3.5 more months and the countless ups and downs that will accompany his stay, I would completely fall apart (like I did this morning). We really just need to get through today. I write down the date and time on my milk bag labels every time I pump, and that act helps me take it day by day.
On the other hand, with respect to medical progress and setbacks, we need to look at the big picture. I got hung up on this little setback with Weston's oxygen setting this morning and managed to completely freak myself out. Several nurses have also reminded me that it's not the day-to-day weight gain/loss that's important, but the trend over 7-10 days. I have also been reminded that Weston can feel it if I'm stressed, which makes it SO important to go in there with a healthy and peaceful attitude.
When I got to the NICU today for Weston's noon round, I asked the nurse about the de-satting. Normally, oxygen saturation levels in the blood should be at 85% or higher. If it goes below 85%, it means Weston is de-satting. It's not something we want, but it happens all the time. It's just a reality for NICU babies. However, most of Weston's nurses don't bat an eye if he de-sats down to the low 80s or even the high 70s. Weston's nurse today said that he was going below 85, so she turned the oxygen up. So, this just told me that she is more conservative than the other nurses. And by the time I got there, she had already turned his oxygen down to the mid-to-low 40s. She also told me that he is doing "remarkably well," especially given his gestational age.
I ended up staying with Weston from noon until about 2:30 today. After the nurse and I finished his rounds, I pulled up a chair, got comfortable, and cupped my hand around his back for about an hour and a half. I put the quilt down on his incubator so he could sleep, so I really couldn't even see him. I caught up on the news on my phone and read a magazine. It occurred to me that, even though I touch Weston every time I visit, I am usually concentrating on looking at him. Today I could just feel his rhythmic breathing, and it was so peaceful. I don't think he de-satted at all during that time, and his heart rate stayed low and steady. Toward the end of the block of time, he started moving a bit. I peeked in on him, and he was just lying there with his eyes open. I know he can't really see me, but it looked like he was looking at me. It's like he was reminding me to just be present with him and enjoy the moment, because we can't do anything about tomorrow.
So I ended the day feeling more peace about this whole experience again. It is a daily effort, and I have to remind myself to continually ask God for the peace that passes all understanding. Tonight, Shannon, Caroline, and I went out to dinner: something we hadn't done in ages. Shannon and I both have peace that the brain bleed and hydrocephalus will turn out OK, although not necessarily by next Wednesday.
--
"Faith is not expected to give complete satisfaction to the intellect. It leaves the intellect suspended in obscurity, without a light proper to its own mode of knowing. Yet it does not frustrate the intellect, or deny it, or destroy it. It pacifies it with a conviction which it knows it can accept quite rationally under the guidance of love. For the act of faith is an act in which the intellect is content to know God by loving Him and accepting His statements about Himself on his own terms. And this assent is quite rational because it is based on the realization that our reason can tell us nothing about God as He actually is in Himself, and on the fact that God Himself is infinite actuality and therefore infinite Truth, Wisdom, Power and Providence, and can reveal Himself with absolute certitude in any manner He pleases, and can certify His own revelation of Himself by external signs."
--Thomas Merton, New Seeds of Contemplation (Faith)
Although I can't speak for Shannon, I think we both have done a good job of putting this brain bleed and hydrocephalus thing out of our heads for the moment. There is nothing we can do about it at this point, and we won't know more until next Wednesday, or Tuesday at the earliest. Be anxious for nothing...
However, my mom left this morning. I also made the mistake of thinking about the long haul in the NICU that we have ahead of us, instead of taking it day by day. Those two things, combined with my utter exhaustion, were the cause of a meltdown this morning. My mom has done such a good job of holding down the fort at home and watching Caroline while I pump/sleep/visit or obsess about Weston, not to mention emotionally supporting me, so it's overwhelming to think about how we are going to get along without her. I felt the same way when she left after Caroline was born.
I called the NICU this morning to see how Weston was doing. He had a new nurse, and she said that his blood gas numbers were a little high and that he had been de-satting, so she had increased his oxygen to 57%. That is the highest it's been, to my knowledge, since his birth. After I hung up the phone, I felt like things were moving in the wrong direction with his lungs and was pretty worried about that.
The best ways to handle the NICU experience are paradoxical. With respect to the length of the stay, and the emotional roller coaster and stress that go along with it, parents should really take it day by day. If I were to think about the fact that Weston will be in the NICU for at least 3.5 more months and the countless ups and downs that will accompany his stay, I would completely fall apart (like I did this morning). We really just need to get through today. I write down the date and time on my milk bag labels every time I pump, and that act helps me take it day by day.
On the other hand, with respect to medical progress and setbacks, we need to look at the big picture. I got hung up on this little setback with Weston's oxygen setting this morning and managed to completely freak myself out. Several nurses have also reminded me that it's not the day-to-day weight gain/loss that's important, but the trend over 7-10 days. I have also been reminded that Weston can feel it if I'm stressed, which makes it SO important to go in there with a healthy and peaceful attitude.
When I got to the NICU today for Weston's noon round, I asked the nurse about the de-satting. Normally, oxygen saturation levels in the blood should be at 85% or higher. If it goes below 85%, it means Weston is de-satting. It's not something we want, but it happens all the time. It's just a reality for NICU babies. However, most of Weston's nurses don't bat an eye if he de-sats down to the low 80s or even the high 70s. Weston's nurse today said that he was going below 85, so she turned the oxygen up. So, this just told me that she is more conservative than the other nurses. And by the time I got there, she had already turned his oxygen down to the mid-to-low 40s. She also told me that he is doing "remarkably well," especially given his gestational age.
I ended up staying with Weston from noon until about 2:30 today. After the nurse and I finished his rounds, I pulled up a chair, got comfortable, and cupped my hand around his back for about an hour and a half. I put the quilt down on his incubator so he could sleep, so I really couldn't even see him. I caught up on the news on my phone and read a magazine. It occurred to me that, even though I touch Weston every time I visit, I am usually concentrating on looking at him. Today I could just feel his rhythmic breathing, and it was so peaceful. I don't think he de-satted at all during that time, and his heart rate stayed low and steady. Toward the end of the block of time, he started moving a bit. I peeked in on him, and he was just lying there with his eyes open. I know he can't really see me, but it looked like he was looking at me. It's like he was reminding me to just be present with him and enjoy the moment, because we can't do anything about tomorrow.
So I ended the day feeling more peace about this whole experience again. It is a daily effort, and I have to remind myself to continually ask God for the peace that passes all understanding. Tonight, Shannon, Caroline, and I went out to dinner: something we hadn't done in ages. Shannon and I both have peace that the brain bleed and hydrocephalus will turn out OK, although not necessarily by next Wednesday.
--
"Faith is not expected to give complete satisfaction to the intellect. It leaves the intellect suspended in obscurity, without a light proper to its own mode of knowing. Yet it does not frustrate the intellect, or deny it, or destroy it. It pacifies it with a conviction which it knows it can accept quite rationally under the guidance of love. For the act of faith is an act in which the intellect is content to know God by loving Him and accepting His statements about Himself on his own terms. And this assent is quite rational because it is based on the realization that our reason can tell us nothing about God as He actually is in Himself, and on the fact that God Himself is infinite actuality and therefore infinite Truth, Wisdom, Power and Providence, and can reveal Himself with absolute certitude in any manner He pleases, and can certify His own revelation of Himself by external signs."
--Thomas Merton, New Seeds of Contemplation (Faith)
Friday, July 20, 2012
The Mysterious NICU
My only hospital experience, besides Caroline's birth, was my almost month-long stay prior to Weston's birth. The NICU is much different from the typical experience. For starters, you have almost no privacy. Also, the NICU is LOUD compared to a single hospital room.
I was a patient in the antenatal unit until the night before Weston was born, at which time I became a patient in the perinatal high risk unit for about 5 hours, and for four additional days after his birth. Now, to get to the NICU from the parking garage, I have to walk through the antenatal unit, which I enjoy because I usually run into one of my former nurses. They were great, and I miss them. More on them in a later post. The other day, one of them asked how Weston was doing. This was before I knew about the brain bleed. I said that he was doing well and gaining weight. She said, "Oh, just like you! Oh, oh, I mean the fighter part, not the weight gain part!" Then she was all embarrassed. It was funny. But I DID gain some weight while I was there; after all, I was pregnant.
But, I digress again. The NICU is pretty intimidating the first few times you visit. Shannon went in by himself a couple of times to see Weston before I was physically able to get down there. First, you have to buzz your way in the main door. Inside is a lobby area with a reception desk and a big sign that says, Nursery Intensive Care Unit."
Before I went home, Shannon and I had wristbands that identified us as parents of a NICU patient. Now we have badges that we wear around our necks with our very unflattering pictures on them. Actually, Shannon's picture is pretty cute, because Caroline is in it with him. Most of the people at the reception desk know us and let us right in, but sometimes we have to stop and identify ourselves and sometimes give Weston's four-digit identification number to be let in. Sometimes, they will call back in the unit and say, "Baby Yoder's family is coming." I guess that wakes them up if they are sleeping on the job. Just kidding.
Every NICU has different rules about visitors. In Weston's, direct siblings are allowed, but the staff takes their temperature every time they come in to make sure they are healthy. I don't know if the rules will get even more stringent when flu/RSV season is upon us. Any other children must be over 12. Only two visitors are allowed at a time, but they make an exception for siblings. So Shannon, Caroline, and I can visit together. When Shannon brings his parents, he goes in with one parent at a time, and they have to trade off.
The NICU is basically one giant room divided into pods. There is an open "pathway" through the middle with a big scrub sink near the front where everybody has to wash up to their elbows, even if they are not going to touch a baby. Weston is in pod 9, and I don't know if there are more pods than that. Although the NICU is bright, it is noticeably darker than the lobby/reception area. There is a window in Weston's pod, and his incubator is close to it, so that will be nice for him once his eyes are less sensitive. They only turn on the bright overhead lights for exams. When babies are undergoing phototherapy for jaundice, they wear eye masks. Surgeries, including emergency surgeries, can be done right in the NICU, with some being done in the baby's incubator. The only downside to that is that they close the entire NICU for surgeries. So far, we had to cut a visit short because of another baby having emergency surgery. It's disappointing to have to leave early, but also comforting to know that Weston wouldn't have far to go if he needs surgery.
Most NICUs are divided into three levels (1, 2, and 3, with 3 being for babies who need the most critical care). At St. Joseph's, the Level 2 nursery is next to Level 3, but the Level 1 is called the annex, and it is on the first floor (we are on the fifth floor).
There are four babies in pod 9, all boys, including a set of twins. Babies are in incubators, warming beds, or cribs. Weston is in an incubator and will be for a long time. The pods are not very big, so one cannot help overhearing what is said about other babies. For example, I overheard the nurse practitioner's consult with the baby next to Weston yesterday. Let me stop and say that Weston is BY FAR the smallest baby in the pod, and maybe THE smallest in the entire NICU. I think the other babies in pod 9 were born around 30 weeks, and some of them weigh 4 pounds already, which is huge to me. So this mom next to me yesterday was talking a mile a minute to the NP, and she actually said, "My friend had a baby born at 23 weeks, and the baby died." WTF?! With a baby born at 24 weeks, that is the LAST thing I want to hear. I already know the odds, thank you. I've heard of NICU parents becoming friends with each other, but clearly not everyone is destined for that.
Despite the relative lack of privacy, especially compared to the rest of the hospital, the NICU does a good job of complying with HIPAA (the law requiring privacy with respect to medical conditions, records, etc.). For example, parents are not allowed to put breast milk in the refrigerator because they would see other patients' names. More importantly, they won't let people even LOOK at a baby without the parents' permission. A family friend of Shannon's works at the hospital and had to go to the NICU for something. She saw Weston's incubator and asked about him, but his nurse wouldn't let her see him. Although I wouldn't have minded if this particular person had seen him, it's nice to know the staff is protective of the babies.
Despite the relative chaos of the NICU, with its constant beeping alarms, the nurses display a welcome sense of calm. When Weston's alarm goes off, they calmly walk over and turn it off. Sometimes they'll take a closer look at him, but one of the nurses explained that the alarms are simply a tool that say, "Look at the baby!" when they go off.
So there you have it. Hopefully none of you will ever have to get intimately familiar with any NICU, but now you know everything you have ever needed to know about the NICU at St. Joseph's Hospital in Phoenix, Arizona.
In other news, Weston had a pretty good day today. He is up to 1 lb 8 oz, and they are increasing his feeding amount every 12 hours. By midnight tonight, he will be up to 4 cc's of milk every 4 hours. He had his fourth blood transfusion today and a slight dip in his pH, which required some ventilator adjustment, but it had already corrected itself by the time Shannon got there in the early evening. His head circumference is fine, so that hopefully means the hydrocephalus is not getting worse. The big news for today is that Shannon got to hold Weston for the first time! He held him for a full hour, and Weston didn't have a single brady episode (heart rate dip). He had two with me, but he brought his heart rate back up himself.
Next Tuesday is Weston's next head ultrasound. We are confident that God can heal the brain bleed and hydrocephalus; please keep praying hard.
I was a patient in the antenatal unit until the night before Weston was born, at which time I became a patient in the perinatal high risk unit for about 5 hours, and for four additional days after his birth. Now, to get to the NICU from the parking garage, I have to walk through the antenatal unit, which I enjoy because I usually run into one of my former nurses. They were great, and I miss them. More on them in a later post. The other day, one of them asked how Weston was doing. This was before I knew about the brain bleed. I said that he was doing well and gaining weight. She said, "Oh, just like you! Oh, oh, I mean the fighter part, not the weight gain part!" Then she was all embarrassed. It was funny. But I DID gain some weight while I was there; after all, I was pregnant.
But, I digress again. The NICU is pretty intimidating the first few times you visit. Shannon went in by himself a couple of times to see Weston before I was physically able to get down there. First, you have to buzz your way in the main door. Inside is a lobby area with a reception desk and a big sign that says, Nursery Intensive Care Unit."
Before I went home, Shannon and I had wristbands that identified us as parents of a NICU patient. Now we have badges that we wear around our necks with our very unflattering pictures on them. Actually, Shannon's picture is pretty cute, because Caroline is in it with him. Most of the people at the reception desk know us and let us right in, but sometimes we have to stop and identify ourselves and sometimes give Weston's four-digit identification number to be let in. Sometimes, they will call back in the unit and say, "Baby Yoder's family is coming." I guess that wakes them up if they are sleeping on the job. Just kidding.
Every NICU has different rules about visitors. In Weston's, direct siblings are allowed, but the staff takes their temperature every time they come in to make sure they are healthy. I don't know if the rules will get even more stringent when flu/RSV season is upon us. Any other children must be over 12. Only two visitors are allowed at a time, but they make an exception for siblings. So Shannon, Caroline, and I can visit together. When Shannon brings his parents, he goes in with one parent at a time, and they have to trade off.
The NICU is basically one giant room divided into pods. There is an open "pathway" through the middle with a big scrub sink near the front where everybody has to wash up to their elbows, even if they are not going to touch a baby. Weston is in pod 9, and I don't know if there are more pods than that. Although the NICU is bright, it is noticeably darker than the lobby/reception area. There is a window in Weston's pod, and his incubator is close to it, so that will be nice for him once his eyes are less sensitive. They only turn on the bright overhead lights for exams. When babies are undergoing phototherapy for jaundice, they wear eye masks. Surgeries, including emergency surgeries, can be done right in the NICU, with some being done in the baby's incubator. The only downside to that is that they close the entire NICU for surgeries. So far, we had to cut a visit short because of another baby having emergency surgery. It's disappointing to have to leave early, but also comforting to know that Weston wouldn't have far to go if he needs surgery.
Most NICUs are divided into three levels (1, 2, and 3, with 3 being for babies who need the most critical care). At St. Joseph's, the Level 2 nursery is next to Level 3, but the Level 1 is called the annex, and it is on the first floor (we are on the fifth floor).
There are four babies in pod 9, all boys, including a set of twins. Babies are in incubators, warming beds, or cribs. Weston is in an incubator and will be for a long time. The pods are not very big, so one cannot help overhearing what is said about other babies. For example, I overheard the nurse practitioner's consult with the baby next to Weston yesterday. Let me stop and say that Weston is BY FAR the smallest baby in the pod, and maybe THE smallest in the entire NICU. I think the other babies in pod 9 were born around 30 weeks, and some of them weigh 4 pounds already, which is huge to me. So this mom next to me yesterday was talking a mile a minute to the NP, and she actually said, "My friend had a baby born at 23 weeks, and the baby died." WTF?! With a baby born at 24 weeks, that is the LAST thing I want to hear. I already know the odds, thank you. I've heard of NICU parents becoming friends with each other, but clearly not everyone is destined for that.
Despite the relative lack of privacy, especially compared to the rest of the hospital, the NICU does a good job of complying with HIPAA (the law requiring privacy with respect to medical conditions, records, etc.). For example, parents are not allowed to put breast milk in the refrigerator because they would see other patients' names. More importantly, they won't let people even LOOK at a baby without the parents' permission. A family friend of Shannon's works at the hospital and had to go to the NICU for something. She saw Weston's incubator and asked about him, but his nurse wouldn't let her see him. Although I wouldn't have minded if this particular person had seen him, it's nice to know the staff is protective of the babies.
Despite the relative chaos of the NICU, with its constant beeping alarms, the nurses display a welcome sense of calm. When Weston's alarm goes off, they calmly walk over and turn it off. Sometimes they'll take a closer look at him, but one of the nurses explained that the alarms are simply a tool that say, "Look at the baby!" when they go off.
So there you have it. Hopefully none of you will ever have to get intimately familiar with any NICU, but now you know everything you have ever needed to know about the NICU at St. Joseph's Hospital in Phoenix, Arizona.
In other news, Weston had a pretty good day today. He is up to 1 lb 8 oz, and they are increasing his feeding amount every 12 hours. By midnight tonight, he will be up to 4 cc's of milk every 4 hours. He had his fourth blood transfusion today and a slight dip in his pH, which required some ventilator adjustment, but it had already corrected itself by the time Shannon got there in the early evening. His head circumference is fine, so that hopefully means the hydrocephalus is not getting worse. The big news for today is that Shannon got to hold Weston for the first time! He held him for a full hour, and Weston didn't have a single brady episode (heart rate dip). He had two with me, but he brought his heart rate back up himself.
Next Tuesday is Weston's next head ultrasound. We are confident that God can heal the brain bleed and hydrocephalus; please keep praying hard.
Thursday, July 19, 2012
Practice Court Wisdom
Practice Court is a rite of passage for every Baylor Law student. It's a rigorous and terrifying third-year trial advocacy program that rivals the first year in difficulty, intensity, and fear of professors. Having made it through and then having practiced as as litigator for many years, I can say with hindsight that it was excellent preparation for being a trial lawyer, but it was hard not to be COMPLETELY overwhelmed while in the middle of it.
Someone in my class had the foresight to keep track of the professors' quotes and have them printed up on a t-shirt. The back of the t-shirt consists of about twenty quotes in small type that no one but our particular Practice Court class would understand and appreciate. I have been wearing the t-shirt to bed a lot lately.
There were three professors who taught us those two quarters. They taught Practice Court I and II, Evidence, and Professional Responsibility. Our Professional Responsibility professor was pretty laid-back, so, although his class was no less important than the other two (he cautioned us to pay attention, because who would hire someone who failed ethics?), we viewed his class as somewhat of a breather.
The other two professors have quotes on the t-shirt that sound like this:
"Son, are you enrolled in the law of evidence? Then you'd better get your ass out of here or you'll learn more about evidence than you ever wanted to."
"You don't have any swingin' idea, do you?"
"You're excused, go get yourself a cup of coffee." Note: do not be fooled. This is what the prof said when he was kicking you out of class for not knowing the answer.
"I'm not laughing at you, just your ridiculous idea."
"Now, Mr. ABC, people tell me you're pretty intelligent...something must happen to you when you walk in this room."
See what I mean? These quotes just make me laugh now, but mostly because none of them were directed at me.
So, in the middle of the night last night, while changing my shirt yet again, I caught a glimpse of this quote from Professor Professional Responsibility:
"Don't think about the mountain, folks, just start climbing."
I still remember him making that comment, and it was nice to be reminded of it last night. So now I can add "mountain" to my collection of metaphors for the NICU experience, and continue the climb.
Who knew that a law school class could have such applicability to a parent's NICU experience?
Someone in my class had the foresight to keep track of the professors' quotes and have them printed up on a t-shirt. The back of the t-shirt consists of about twenty quotes in small type that no one but our particular Practice Court class would understand and appreciate. I have been wearing the t-shirt to bed a lot lately.
There were three professors who taught us those two quarters. They taught Practice Court I and II, Evidence, and Professional Responsibility. Our Professional Responsibility professor was pretty laid-back, so, although his class was no less important than the other two (he cautioned us to pay attention, because who would hire someone who failed ethics?), we viewed his class as somewhat of a breather.
The other two professors have quotes on the t-shirt that sound like this:
"Son, are you enrolled in the law of evidence? Then you'd better get your ass out of here or you'll learn more about evidence than you ever wanted to."
"You don't have any swingin' idea, do you?"
"You're excused, go get yourself a cup of coffee." Note: do not be fooled. This is what the prof said when he was kicking you out of class for not knowing the answer.
"I'm not laughing at you, just your ridiculous idea."
"Now, Mr. ABC, people tell me you're pretty intelligent...something must happen to you when you walk in this room."
See what I mean? These quotes just make me laugh now, but mostly because none of them were directed at me.
So, in the middle of the night last night, while changing my shirt yet again, I caught a glimpse of this quote from Professor Professional Responsibility:
"Don't think about the mountain, folks, just start climbing."
I still remember him making that comment, and it was nice to be reminded of it last night. So now I can add "mountain" to my collection of metaphors for the NICU experience, and continue the climb.
Who knew that a law school class could have such applicability to a parent's NICU experience?
Steadfast
Nothing has changed with Weston's condition. And he LOST 50 grams today and is back down to 1 pound 5.5 ounces. His night nurse said that amount is nothing to worry about, that fluctuations are still normal, and that the reason for the drop could have been anything from a few heavy diapers to a scale error. But try telling that to a worried mama! I was really feeling down and discouraged about the brain bleed and Weston's progress during the evening. Although we knew that this roller coaster ride would define the NICU experience, nothing truly prepares parents for it.
It's 2:15 am, and I am having an early-morning pumping session, as usual. I logged on to Facebook and saw that baby Rolland, whom I have mentioned previously and for whom I also asked for prayers, is doing much better and got to be held by his mama for the first time tonight, for a whole hour! His mama, my high school classmate, wrote such a beautiful post telling the story. To me, this was proof that God is walking this road with us, hearing our prayers, and protecting our babies.
I KNOW that God can protect and heal Weston from this brain bleed. We did go back to the hospital yesterday evening during S's shift, so we could get his opinion on things. He reinforced what we knew: that brain bleeds are extremely common in babies this small and that they usually resolve on their own without incident. He also said that the fact that the first two ultrasounds came back negative, that Weston didn't get a brain bleed until day 10, is a good thing. S tends to see the big Grade 3 or 4 bleeds during the first 3 or 4 days of life. Dr. M came and talked to us as well, and, although he was more reserved, Shannon is pretty sure he said at the end of the conversation that they don't expect it to get worse. I think I heard that too, but I am so mentally exhausted at times that I don't catch everything. He also said that keeping the rest of Weston's systems quiet will help the brain bleed resolve. So, we need a week that has gone as well as the last several days: no big brady episodes (dip in heart rate), no acidosis, no breathing issues, just a stretch of boring, quiet days. Breast milk helps brain development as well, and he has tolerated it well so far. We can also keep doing kangaroo care.
This is what I came across this morning:
Create in me a pure heart, O God, and renew a steadfast spirit within me.
Psalm 51:10
Dictionary.com definition of steadfast: sure, dependable, reliable, constant, unwavering. It implies a sureness and continuousness that may relied upon. Steadfast literally means fixed in place, but is chiefly used figuratively to indicated undeviating constancy or resolution: steadfast in one's faith.
Then this:
Let your eyes look straight ahead;
fix your gaze directly before you.
Give careful thought to the paths for your feet
and be steadfast in all your ways.
Do not turn to the right or the left...
Proverbs 4:25-27
Steadfast: twice in one sitting? I think that inspires a blog post title.
We have so much to be thankful for with Weston: lungs working well, no major heart issues, tolerating feedings, enough breast milk so far, excellent medical care, health insurance, overflowing support from family and friends, enough love to fill up the entire hospital, and, most of all, constant prayer and God's protection. Not to mention the sweetest little face, good coloring (as some of you mentioned), and the most perfect little hands and feet!
Please add to your prayers a request that Shannon and I will be steadfast in our resolve and our reliance on God to get Weston and us through this situation. Weston needs his parents to be steadfast, and he needs to be steadfast! This is a marathon that is testing me so much more than the previous four marathons that I actually ran. But the finish line and reward, when I finally get there, will be so much better.
It's 2:15 am, and I am having an early-morning pumping session, as usual. I logged on to Facebook and saw that baby Rolland, whom I have mentioned previously and for whom I also asked for prayers, is doing much better and got to be held by his mama for the first time tonight, for a whole hour! His mama, my high school classmate, wrote such a beautiful post telling the story. To me, this was proof that God is walking this road with us, hearing our prayers, and protecting our babies.
I KNOW that God can protect and heal Weston from this brain bleed. We did go back to the hospital yesterday evening during S's shift, so we could get his opinion on things. He reinforced what we knew: that brain bleeds are extremely common in babies this small and that they usually resolve on their own without incident. He also said that the fact that the first two ultrasounds came back negative, that Weston didn't get a brain bleed until day 10, is a good thing. S tends to see the big Grade 3 or 4 bleeds during the first 3 or 4 days of life. Dr. M came and talked to us as well, and, although he was more reserved, Shannon is pretty sure he said at the end of the conversation that they don't expect it to get worse. I think I heard that too, but I am so mentally exhausted at times that I don't catch everything. He also said that keeping the rest of Weston's systems quiet will help the brain bleed resolve. So, we need a week that has gone as well as the last several days: no big brady episodes (dip in heart rate), no acidosis, no breathing issues, just a stretch of boring, quiet days. Breast milk helps brain development as well, and he has tolerated it well so far. We can also keep doing kangaroo care.
This is what I came across this morning:
Create in me a pure heart, O God, and renew a steadfast spirit within me.
Psalm 51:10
Dictionary.com definition of steadfast: sure, dependable, reliable, constant, unwavering. It implies a sureness and continuousness that may relied upon. Steadfast literally means fixed in place, but is chiefly used figuratively to indicated undeviating constancy or resolution: steadfast in one's faith.
Then this:
Let your eyes look straight ahead;
fix your gaze directly before you.
Give careful thought to the paths for your feet
and be steadfast in all your ways.
Do not turn to the right or the left...
Proverbs 4:25-27
Steadfast: twice in one sitting? I think that inspires a blog post title.
We have so much to be thankful for with Weston: lungs working well, no major heart issues, tolerating feedings, enough breast milk so far, excellent medical care, health insurance, overflowing support from family and friends, enough love to fill up the entire hospital, and, most of all, constant prayer and God's protection. Not to mention the sweetest little face, good coloring (as some of you mentioned), and the most perfect little hands and feet!
Please add to your prayers a request that Shannon and I will be steadfast in our resolve and our reliance on God to get Weston and us through this situation. Weston needs his parents to be steadfast, and he needs to be steadfast! This is a marathon that is testing me so much more than the previous four marathons that I actually ran. But the finish line and reward, when I finally get there, will be so much better.
Wednesday, July 18, 2012
Some Good News, but Mostly Bad
We have experienced the next big dip on the NICU roller coaster ride. I'll start with the good news that God is certainly answering prayers about Weston's feedings: he is tolerating them very well, and starting at noon today they are doubling the frequency of his feedings from once every eight hours to once every four hours. We had a really nice visit today: his vitals were very stable, and I got to help with his rounds, as usual, and touch him for a whole hour. He looked so cute and cozy.
Dr. M, Weston's neonatologist, came in and said he wanted to talk to me, but he had another meeting scheduled first. He took too long, so we had to leave before he finished his meeting. However, S, his nurse, usually lets me know results of any tests that have been done, and he didn't mention the head ultrasound that was done yesterday. I realized it about halfway through the visit and wondered if something was wrong. I really didn't want to ask S at that point and risk him hemming and hawing with his answer, so I just kept quiet. Dr. M called when I got home.
So, the bad news is that Weston has a brain bleed. Brain bleeds occur in more than half of babies born at his gestational age and rank in severity from Grade 1 to Grade 4. They usually occur within the first two weeks of life, and Weston is 11 days old. Weston's bleed is a Grade 2 and is on the right side of his brain. Grade 3 and Grade 4 brain bleeds can result in cerebral palsy and various developmental problems. According to what I have heard, Grade 1 and 2 brain bleeds usually resolve on their own, so that's the good news. However, they usually take a very long time to resolve, so we wouldn't necessarily see any change on his repeat ultrasound that is scheduled for next Tuesday.
The additional bad news is that Weston also has some hydrocephalus, also known as water on the brain. Dr. M explained it pretty well, but it is still pretty complicated, so I have a good definition from my book The Preemie Parents' Companion, which is on a recommended reading list provided by the March of Dimes:
Hydrocephalus..is one of the most serious complications of a severe brain bleed
(thanks for that). [It] occurs when the bleeding causes a blockage in the circulation
of cerebrospinal fluid (CSF) in the ventricles...As fluid accumulates, the ventricles
swell and press on surrounding brain tissue. Hydrocephalus generally occurs slowly,
and can often be controlled with medication or a series of spinal taps which draw off
the excess fluid...
The explanation gets progressively worse and details much more invasive treatment and graver outcomes, but I'm trying not to go there at this point. If hydrocephalus gets bad enough, it can cause permanent brain damage. One confusing thing is that the book says that hydrocephalus is associated with more severe brain bleeds, which Weston's is not. Typically, I don't like to go outside of the medical team for information, but this book is very informative, so I'm comfortable reading about these conditions in it.
According to Dr. M, Weston's right tube (ventricle?) is slightly bigger than his left, which is a consequence of the hydrocephalus.
Another conflicting bit of information is that Dr. M described three possible outcomes, which are equal possibilities with Weston: first, the brain bleed is one-third likely to just go away on its own. Second, it could progress to a more serious Grade 3 brain bleed. Finally, the ventricles could continue to grow, which I think means that the hydrocephalus would get worse. I have also read a lot about brain bleeds and/or talked to people whose children have experienced them, and, from what I hear, they usually resolve on their own without complication (at least with Grades 1 and 2). It's been my experience that physicians tend to give the worst-case scenarios, so I'm hoping that's the case here too.
With brain bleeds, we just watch and wait. This will not change Weston's day-to-day care, except they are going to add daily measurements of head circumference, presumably to measure if the water on the brain is increasing too much. The good news, I guess, is that the hydrocephalus is not bad enough to require any intervention at this point.
They will repeat a head ultrasound next week. The best-case scenario, medically, is no change, because brain bleeds take so long to resolve. Our favorite nurse, S, is not working again until Monday, so we won't be able to get his take on this for a while, unless we go back before his shift ends tonight at 7:00.
This constant roller coaster ride sucks more than anything. Sorry I can't be more eloquent than that right now. So the prayer request changes yet again: we are thankful for tolerated feedings and current stability with everything else. Please pray that Weston's brain bleed and hydrocephalus will resolve without incident.
Dr. M, Weston's neonatologist, came in and said he wanted to talk to me, but he had another meeting scheduled first. He took too long, so we had to leave before he finished his meeting. However, S, his nurse, usually lets me know results of any tests that have been done, and he didn't mention the head ultrasound that was done yesterday. I realized it about halfway through the visit and wondered if something was wrong. I really didn't want to ask S at that point and risk him hemming and hawing with his answer, so I just kept quiet. Dr. M called when I got home.
So, the bad news is that Weston has a brain bleed. Brain bleeds occur in more than half of babies born at his gestational age and rank in severity from Grade 1 to Grade 4. They usually occur within the first two weeks of life, and Weston is 11 days old. Weston's bleed is a Grade 2 and is on the right side of his brain. Grade 3 and Grade 4 brain bleeds can result in cerebral palsy and various developmental problems. According to what I have heard, Grade 1 and 2 brain bleeds usually resolve on their own, so that's the good news. However, they usually take a very long time to resolve, so we wouldn't necessarily see any change on his repeat ultrasound that is scheduled for next Tuesday.
The additional bad news is that Weston also has some hydrocephalus, also known as water on the brain. Dr. M explained it pretty well, but it is still pretty complicated, so I have a good definition from my book The Preemie Parents' Companion, which is on a recommended reading list provided by the March of Dimes:
Hydrocephalus..is one of the most serious complications of a severe brain bleed
(thanks for that). [It] occurs when the bleeding causes a blockage in the circulation
of cerebrospinal fluid (CSF) in the ventricles...As fluid accumulates, the ventricles
swell and press on surrounding brain tissue. Hydrocephalus generally occurs slowly,
and can often be controlled with medication or a series of spinal taps which draw off
the excess fluid...
The explanation gets progressively worse and details much more invasive treatment and graver outcomes, but I'm trying not to go there at this point. If hydrocephalus gets bad enough, it can cause permanent brain damage. One confusing thing is that the book says that hydrocephalus is associated with more severe brain bleeds, which Weston's is not. Typically, I don't like to go outside of the medical team for information, but this book is very informative, so I'm comfortable reading about these conditions in it.
According to Dr. M, Weston's right tube (ventricle?) is slightly bigger than his left, which is a consequence of the hydrocephalus.
Another conflicting bit of information is that Dr. M described three possible outcomes, which are equal possibilities with Weston: first, the brain bleed is one-third likely to just go away on its own. Second, it could progress to a more serious Grade 3 brain bleed. Finally, the ventricles could continue to grow, which I think means that the hydrocephalus would get worse. I have also read a lot about brain bleeds and/or talked to people whose children have experienced them, and, from what I hear, they usually resolve on their own without complication (at least with Grades 1 and 2). It's been my experience that physicians tend to give the worst-case scenarios, so I'm hoping that's the case here too.
With brain bleeds, we just watch and wait. This will not change Weston's day-to-day care, except they are going to add daily measurements of head circumference, presumably to measure if the water on the brain is increasing too much. The good news, I guess, is that the hydrocephalus is not bad enough to require any intervention at this point.
They will repeat a head ultrasound next week. The best-case scenario, medically, is no change, because brain bleeds take so long to resolve. Our favorite nurse, S, is not working again until Monday, so we won't be able to get his take on this for a while, unless we go back before his shift ends tonight at 7:00.
This constant roller coaster ride sucks more than anything. Sorry I can't be more eloquent than that right now. So the prayer request changes yet again: we are thankful for tolerated feedings and current stability with everything else. Please pray that Weston's brain bleed and hydrocephalus will resolve without incident.
Tuesday, July 17, 2012
Medical Update and Kangaroo Care
Today Weston is ten days old! We had a wonderful day. I showed up at his noon round, as usual. I took his temperature, wiped his face, changed his diaper, as usual. AND THEN, I got to hold him!!! I mentioned in my last post the concern that turning his head would cause a brain bleed, so S said I could hold him in such a way that his head wouldn't have to be turned so sharply.
Holding Weston is part of kangaroo care. Kangaroo care holds the theory that a preemie's direct, skin-to-skin contact with parents, especially mom, is essential to baby's improvement. It improves baby's respiration and heart rate, and mom actually acts as an incubator, automatically regulating her body temperature to keep baby at the right temperature. It causes baby to go into a deep sleep, which helps growth. It helps with brain development. It helps with breastfeeding. It helps babies go home earlier. This website is pretty informative for anyone who is interested: http://www.kangaroomothercare.com/
So, after we were done with the rounds, they took the top off the incubator and pulled up a chair for me to sit in. He was awake with his eyes open during the first part. They put a blanket around him and had me LIFT HIM OUT. Let me tell you, that was scary. Then I put him to my chest, and S and the developmental specialist C (can't remember her exact title) helped me sit down in the chair. The monitors started going crazy; I have never heard so much beeping. As soon as I was seated, they got all the tubes, etc. situated and clipped most of them to my shirt. Essentially, then, Weston was attached to me. He put his little hand on my chest and rested his head on his hand and fell into a deep sleep within a minute or less.
After a couple of minutes, I was finally able to relax a bit. Then I was just in heaven. He felt just like a newborn, only smaller. He had a couple of brady episodes (dropping heart rate) but was able to raise his heart rate on his own. The monitor would beep, and of course I would look up. C encouraged me NOT to look at the monitor (easier said than done) and showed me the physical signs to look for; for example, when his heart rate drops, he gets a little pale. That will help Shannon and I care for him better when he goes home.
We got to sit together for about 15 minutes. My mom took a million pictures, which I will post to Facebook at some point. All in all, S and C said he tolerated it really well, and we can try again in a couple of days. Shannon will get to give it a try that time. I wish he had been there today.
When we were done, I was supposed to stand up. S thankfully told C that I was "post-section" (recovering from a c-section). I have no abdominal strength right now, so they basically had to lift me up. I put him back in his incubator, they unhooked all the tubes from me, and he was back.
The good news continues: THEN, S fed him one cc of breast milk! Shannon went to visit him this evening, and then I called the night nurse around 9:30 tonight. She said that he tolerated the feeding just fine, she fed him another cc of milk at 8:00 pm, and his tummy is nice and flat. They will continue this schedule (one cc every eight hours) and gradually increase it from there. His weight is up 30 grams from yesterday (660 grams), which puts him back at 1 lb 7 ounces and ten grams higher than his highest weight!
Weston has pretty high blood sugar, and they are not sure why. When the night nurse started her shift at 7:00 pm, his sugar was at 220. By 9:30, it was down to 199. It needs to be below 150-160 to be in the normal range. At this point, they decrease his lipids in his TPN (nutrition line) to lower his sugar. The lipids provide extra sugar and calories to help him grow. The nurse informed the physicians, who have not ordered anything yet, but they will keep an eye on it. The night nurse mentioned that he is just so small that he can't regulate much on his own yet.
I realized I haven't been keeping perfect track of Weston's visitors yet, and that is something I'd like to do, so here's a quick rundown of family and friends he has met so far:
Mom, Dad, and Caroline
Oma (my mom)
Pappy (my dad)
Grandma and Grandpa (Shannon's parents)
Aunt Natalie (my sister)
Aunt Monica (Shannon's sister)
Liz Fleming (my friend from work)
Today was a huge answer to prayers for us: tolerated feedings, weight gain, and the ultimate bonus of kangaroo care! Please pray that the weight gain and feedings continue and that Weston poops! Please also pray for continued protection of his vital organs (to include lungs, heart, and brain) that seem to be doing well and continued protection from infection.
Also, please add baby Rolland to your prayers. He is one of Weston's NICU buddies and the son of a high school classmate of mine (small world!). He was born at almost 25 weeks gestation a couple of weeks before Weston. I don't know the details, but he has hit a rough patch. Please pray for baby Rolland and his family.
Holding Weston is part of kangaroo care. Kangaroo care holds the theory that a preemie's direct, skin-to-skin contact with parents, especially mom, is essential to baby's improvement. It improves baby's respiration and heart rate, and mom actually acts as an incubator, automatically regulating her body temperature to keep baby at the right temperature. It causes baby to go into a deep sleep, which helps growth. It helps with brain development. It helps with breastfeeding. It helps babies go home earlier. This website is pretty informative for anyone who is interested: http://www.kangaroomothercare.com/
So, after we were done with the rounds, they took the top off the incubator and pulled up a chair for me to sit in. He was awake with his eyes open during the first part. They put a blanket around him and had me LIFT HIM OUT. Let me tell you, that was scary. Then I put him to my chest, and S and the developmental specialist C (can't remember her exact title) helped me sit down in the chair. The monitors started going crazy; I have never heard so much beeping. As soon as I was seated, they got all the tubes, etc. situated and clipped most of them to my shirt. Essentially, then, Weston was attached to me. He put his little hand on my chest and rested his head on his hand and fell into a deep sleep within a minute or less.
After a couple of minutes, I was finally able to relax a bit. Then I was just in heaven. He felt just like a newborn, only smaller. He had a couple of brady episodes (dropping heart rate) but was able to raise his heart rate on his own. The monitor would beep, and of course I would look up. C encouraged me NOT to look at the monitor (easier said than done) and showed me the physical signs to look for; for example, when his heart rate drops, he gets a little pale. That will help Shannon and I care for him better when he goes home.
We got to sit together for about 15 minutes. My mom took a million pictures, which I will post to Facebook at some point. All in all, S and C said he tolerated it really well, and we can try again in a couple of days. Shannon will get to give it a try that time. I wish he had been there today.
When we were done, I was supposed to stand up. S thankfully told C that I was "post-section" (recovering from a c-section). I have no abdominal strength right now, so they basically had to lift me up. I put him back in his incubator, they unhooked all the tubes from me, and he was back.
The good news continues: THEN, S fed him one cc of breast milk! Shannon went to visit him this evening, and then I called the night nurse around 9:30 tonight. She said that he tolerated the feeding just fine, she fed him another cc of milk at 8:00 pm, and his tummy is nice and flat. They will continue this schedule (one cc every eight hours) and gradually increase it from there. His weight is up 30 grams from yesterday (660 grams), which puts him back at 1 lb 7 ounces and ten grams higher than his highest weight!
Weston has pretty high blood sugar, and they are not sure why. When the night nurse started her shift at 7:00 pm, his sugar was at 220. By 9:30, it was down to 199. It needs to be below 150-160 to be in the normal range. At this point, they decrease his lipids in his TPN (nutrition line) to lower his sugar. The lipids provide extra sugar and calories to help him grow. The nurse informed the physicians, who have not ordered anything yet, but they will keep an eye on it. The night nurse mentioned that he is just so small that he can't regulate much on his own yet.
I realized I haven't been keeping perfect track of Weston's visitors yet, and that is something I'd like to do, so here's a quick rundown of family and friends he has met so far:
Mom, Dad, and Caroline
Oma (my mom)
Pappy (my dad)
Grandma and Grandpa (Shannon's parents)
Aunt Natalie (my sister)
Aunt Monica (Shannon's sister)
Liz Fleming (my friend from work)
Today was a huge answer to prayers for us: tolerated feedings, weight gain, and the ultimate bonus of kangaroo care! Please pray that the weight gain and feedings continue and that Weston poops! Please also pray for continued protection of his vital organs (to include lungs, heart, and brain) that seem to be doing well and continued protection from infection.
Also, please add baby Rolland to your prayers. He is one of Weston's NICU buddies and the son of a high school classmate of mine (small world!). He was born at almost 25 weeks gestation a couple of weeks before Weston. I don't know the details, but he has hit a rough patch. Please pray for baby Rolland and his family.
Poop, please
Shannon and I went to visit Weston during his 8:00 pm round last night. We typically don't go at that time because we want to be home for Caroline's bedtime. However, I requested that his night nurse that I talked to the other night be assigned to Weston last night so we could go meet him and decide whether we wanted him to be another one of Weston's primary nurses.
Not much had changed with Weston since my visit at noon yesterday. Weston was awake but quiet. Know how I know that? Because he opens both of his eyes now! He spent a lot of yesterday evening staring at his daddy. :-) Tonight, Shannon took his temperature, and I changed his diaper, wiped his face, and helped lift him to be weighed.
So, Weston has not pooped yet. Even though he is not being fed, he still has meconium (the black, sticky newborn poop) that needs to come out. More importantly, he needs to start eating. They tried feeding him just one cc of colostrum one day last week, but bile started coming out of his feeding tube, signifying that he really wasn't ready to eat yet. His digestive system just couldn't handle it.
Everything revolves around breathing. It takes oxygen to operate his digestive system. I understand that breathing more efficiently will allow more oxygen to go to his gut, helping him tolerate the eating. As a result of his metabolic acidosis over the weekend, he was tested for infection, specifically sepsis. Rather than wait three days for the blood culture results to come back, they started him on two antibiotics as a precautionary measure. I don't remember the names of either (although I might if you told me the names). One is standard, but the other is pretty strong. Antibiotics often slow down digestion. The blood culture results have come back negative (yippee!), so he'll be taken off the antibiotics. Hopefully, then, his digestion abilities will be enhanced.
The metabolic acidosis was a significant setback in Weston's growth. I guess he really should be eating by now, and thus gaining weight. He lost 10 more grams, putting his weight back down to 630 grams, or 1 lb 6 oz, his birth weight. His nurse explained that day to day weight gain/loss isn't that significant; they are looking more at the ten-day trend. So far, the ten-day trend is pretty good. But, IT'S TIME TO POOP, EAT, AND GROW!!! Please pray specifically for that. Yes. Pray for poop.
It is so interesting to watch Weston's team work. I had always thought that medical care is pretty uniform: if A happens, do X. Nothing is further from the truth; after all, everyone taking care of Weston is an individual and has his/her own approach. Yesterday afternoon, his daytime nurse, S (whom we really like and have selected as one of his primary nurses), called me and told me that the neonatologist had approved me trying kangaroo care last night. Kangaroo care means holding Weston skin to skin (I'll talk more about it after I actually do it). I had also talked to him earlier in the day about the incident over the weekend when I wasn't allowed to touch Weston. He eased my mind about that situation, explained that he would probably recommend limit the handling of Weston once Weston is eating and participating in kangaroo care (which he isn't doing now). Weston generally needs to limit his energy output to those things, and unnecessary handling between rounds can expend a lot of energy (calories), therefore not allowing him to grow like he needs to. However, S noted that I am always quiet with Weston when I handle him between rounds. I guess some parents wake their babies up, get them flailing around, etc., and that is not necessarily best for the babies. So I guess this proves that Shannon and I are the best parents in the world, right? S said he would explain our oh-so-gentle touches to the offending nurse and also told me that, as the parents, Shannon and I always have the choice to touch our son. See why we like him?
So, when I arrived last night eager to try kangaroo care, D, the night nurse said he had conferred with E, Weston's primary night nurse, and they had concluded that now might not be the best time to try it. Weston is still at risk for brain bleeds, and a lot of movement right now could increase that risk. Weston has really tiny blood vessels, and if he turns his head side to side too much, it could possibly cut off blood flow to his brain temporarily, causing a brain bleed. They felt that, although kangaroo care will be a crucial part of his care, the risks outweigh the benefits at this point. I was fine with that, and was very grateful that D had explained WHY he felt the way he felt, and decided to forgo trying to hold Weston last night. So, I learned that D is more conservative than S (I also learned that D went to Baylor University, my alma mater, so he officially awesome) and am grateful to have the mixed approach. Sometimes Weston will need a little coaxing, and he'll get it from S. Other times, we'll need to hang back a bit, and we'll get that approach from D.
We decided we liked D and asked him to be Weston's other primary night nurse. D works weekends, and E works during the week, so he's essentially all primaried up for nighttime now. All we need is one more primary daytime nurse. D said he took our request as a compliment, that his last primary assignment had been discharged the week before so he needed someone new, and that he had taken to Weston over the weekend, so he's excited to work with him. And we are excited to have him as part of Weston's team.
Caroline had a rough night the night before last; she was up from about 3:30 to 5:00 am throwing up. Poor baby. We had really wanted her to get together with her cousin Jude (my sister's son), but it just didn't happen. We're hoping for a couple of hours together for them tomorrow before Jude and family head up to Flagstaff for a couple of weeks. My mom also said she tried very hard to be brave last night, but that she was sad that we were not there to put her to bed. This tells me that the 8 pm rounds should be the exception, rather than the rule. I went in when we got home and sang a song to her, and she dropped right back off to sleep.
So, pray for POOP. EATING. GROWTH. Thanks!
Not much had changed with Weston since my visit at noon yesterday. Weston was awake but quiet. Know how I know that? Because he opens both of his eyes now! He spent a lot of yesterday evening staring at his daddy. :-) Tonight, Shannon took his temperature, and I changed his diaper, wiped his face, and helped lift him to be weighed.
So, Weston has not pooped yet. Even though he is not being fed, he still has meconium (the black, sticky newborn poop) that needs to come out. More importantly, he needs to start eating. They tried feeding him just one cc of colostrum one day last week, but bile started coming out of his feeding tube, signifying that he really wasn't ready to eat yet. His digestive system just couldn't handle it.
Everything revolves around breathing. It takes oxygen to operate his digestive system. I understand that breathing more efficiently will allow more oxygen to go to his gut, helping him tolerate the eating. As a result of his metabolic acidosis over the weekend, he was tested for infection, specifically sepsis. Rather than wait three days for the blood culture results to come back, they started him on two antibiotics as a precautionary measure. I don't remember the names of either (although I might if you told me the names). One is standard, but the other is pretty strong. Antibiotics often slow down digestion. The blood culture results have come back negative (yippee!), so he'll be taken off the antibiotics. Hopefully, then, his digestion abilities will be enhanced.
The metabolic acidosis was a significant setback in Weston's growth. I guess he really should be eating by now, and thus gaining weight. He lost 10 more grams, putting his weight back down to 630 grams, or 1 lb 6 oz, his birth weight. His nurse explained that day to day weight gain/loss isn't that significant; they are looking more at the ten-day trend. So far, the ten-day trend is pretty good. But, IT'S TIME TO POOP, EAT, AND GROW!!! Please pray specifically for that. Yes. Pray for poop.
It is so interesting to watch Weston's team work. I had always thought that medical care is pretty uniform: if A happens, do X. Nothing is further from the truth; after all, everyone taking care of Weston is an individual and has his/her own approach. Yesterday afternoon, his daytime nurse, S (whom we really like and have selected as one of his primary nurses), called me and told me that the neonatologist had approved me trying kangaroo care last night. Kangaroo care means holding Weston skin to skin (I'll talk more about it after I actually do it). I had also talked to him earlier in the day about the incident over the weekend when I wasn't allowed to touch Weston. He eased my mind about that situation, explained that he would probably recommend limit the handling of Weston once Weston is eating and participating in kangaroo care (which he isn't doing now). Weston generally needs to limit his energy output to those things, and unnecessary handling between rounds can expend a lot of energy (calories), therefore not allowing him to grow like he needs to. However, S noted that I am always quiet with Weston when I handle him between rounds. I guess some parents wake their babies up, get them flailing around, etc., and that is not necessarily best for the babies. So I guess this proves that Shannon and I are the best parents in the world, right? S said he would explain our oh-so-gentle touches to the offending nurse and also told me that, as the parents, Shannon and I always have the choice to touch our son. See why we like him?
So, when I arrived last night eager to try kangaroo care, D, the night nurse said he had conferred with E, Weston's primary night nurse, and they had concluded that now might not be the best time to try it. Weston is still at risk for brain bleeds, and a lot of movement right now could increase that risk. Weston has really tiny blood vessels, and if he turns his head side to side too much, it could possibly cut off blood flow to his brain temporarily, causing a brain bleed. They felt that, although kangaroo care will be a crucial part of his care, the risks outweigh the benefits at this point. I was fine with that, and was very grateful that D had explained WHY he felt the way he felt, and decided to forgo trying to hold Weston last night. So, I learned that D is more conservative than S (I also learned that D went to Baylor University, my alma mater, so he officially awesome) and am grateful to have the mixed approach. Sometimes Weston will need a little coaxing, and he'll get it from S. Other times, we'll need to hang back a bit, and we'll get that approach from D.
We decided we liked D and asked him to be Weston's other primary night nurse. D works weekends, and E works during the week, so he's essentially all primaried up for nighttime now. All we need is one more primary daytime nurse. D said he took our request as a compliment, that his last primary assignment had been discharged the week before so he needed someone new, and that he had taken to Weston over the weekend, so he's excited to work with him. And we are excited to have him as part of Weston's team.
Caroline had a rough night the night before last; she was up from about 3:30 to 5:00 am throwing up. Poor baby. We had really wanted her to get together with her cousin Jude (my sister's son), but it just didn't happen. We're hoping for a couple of hours together for them tomorrow before Jude and family head up to Flagstaff for a couple of weeks. My mom also said she tried very hard to be brave last night, but that she was sad that we were not there to put her to bed. This tells me that the 8 pm rounds should be the exception, rather than the rule. I went in when we got home and sang a song to her, and she dropped right back off to sleep.
So, pray for POOP. EATING. GROWTH. Thanks!
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