Broken Hearts

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.