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

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.