Monday, August 19, 2013

Day 33 - Failed kangaroo care

A year ago today I went to church. My new pastor's wife asked me how I was doing. "Great!" I exclaimed, "I've just entered my third trimester!" I did a little twist to the side to show off my slacks and shirt, nearly back to my pre-pregnancy size.

For a moment she looked a little shocked at my flippant statement. Then she laughed. And then we both laughed. An awkward sort of laugh.  It lasted too long and ended in tears, and the whole time we weren't either of us sure if we really should be laughing. But there we were, thick in the reality of it all. Too exhausted and too worn, and yearning for an escape - I couldn't relive the hurt any more, so I chose a point of absurdity to focus on instead.

I was grateful for her friendship, that she understood my need to laugh. It's the sort of thing one would never say to someone who had delivered early. "Look! You're in your third trimester, you look great!" -- Oh, daggers would have shot out of my eyes at the insensitivity of the statement. But coming from me, somehow it was okay. It was an escape, a plea -- please let there be something else to talk about but the pain of the past month. It's too hard.

The pastor asked Steve how things were going. Steve shared our concerns about Jonathan's heart and lungs and bowels and kidneys (and liver, just to throw another organ in there).  "I am looking forward to the day when all we have to worry about is whether or not he'll be blind," Steve said. It sounded absurd enough that I think the pastor chuckled a bit. Steve spoke for both of us. The day that retinopothy of prematurity was our only concern - that was the day we pushed on toward.

After church I went to the hospital. Steve went home with the girls. It seems that they, like me and perhaps Steve, had caught the sillies and desired the bizarre. I came home to find these pictures on Steve's phone:

At the hospital I tried to do kangaroo care (otherwise called "skin to skin care" with Jonathan. Kangaroo care is skin-on-skin cuddling that helps a baby to relax and has been proven to lead to better outcomes for these little neonatal ICU patients. They breath better, they relax better, they grow better. Since Jonathan's little body was all in all in decline (retaining water, poor kidney function, heart murmur growing, etc.) I thought some time being held might do him some good.  I planned to spend the rest of the day with him.

I put a little hat on him to keep him warm. The NICU nurse said that my body heat alone should keep him warm, and that she'd prefer I not put the hat on him.  So I took the hat off and we bundled him with blankets over me instead. The first twenty minutes were great. I thought he felt a little cold, so the NICU nurse got another blanket. Otherwise things were fine. And then they weren't.  Here is what I wrote:

After hearing bad news about his kidneys and BM output, I was anxious to get in to see him.  When I got there he was having far more bradycardia (slow heartbeat) events than usual.  Normally his heart rate will drop once or twice a day for a short period of time. In a five minute span I saw it drop twice.  Also, his blood oxygen levels were all over the map, saturating low one minute and high the next. I thought that perhaps holding him would help him feel better and help regulate some of his numbers that were off. So we change him, suctioned him, and got him ready for comfy mommy time.

Things went well for the first 20 minutes, and then he bradied (had a bradycardia event) -- and bradied again.  His oxygen went dangerously low.  His skin became grey and he became super still in my arms. The nurse rushed in, two other nurses rushed in. They described him as "dusky" in color.  His heart rate had dropped from 130 bpm (beats per minute) to 40 bpm and his blood oxygen levels were dangerously low.  They re-positioned his vent tube, suctioned him several times, and gave him manual breaths of air through a small hand pump that is always connected to his breathing tubes.  His lowered heart rate lasted for around 5 minutes.  He stayed on me for an additional 45 minutes to stabilize before being put back in his isolette.  (The last thing we needed was another big change to throw him off.)

When he was returned to his isolette, his body temperature was VERY low (about 95.7 degrees F or 35.4 degrees C).  He normally has a temperature of 37 degrees C / 98.6 degrees F. We put a hat on him and a blanket on him and turned his isolette temperature up to 38 Celsius to try to warm things up quickly.  It still took him a while to bounce back. Usually during skin-to-skin time he gets his warmth from me and is able to maintain his own body temperature, so this is an unusual occurrence.

That night they changed some things with his vent (For the two medical professionals that read this and might know what this means: they changed it to give him a constant pressure rather than asking him to maintain a certain tidal volume). After this change was made, he seemed MUCH happier. His blood gasses last night were a little high, but I'm not too surprised by that.

Shortly after I had my premature baby, I had lots and lots of friends tell me that they hoped I was doing kangaroo care with him, that they hoped I was holding him a few times a day, for his development and well-being.

These friends had had preemie babies or had known people who had preemie babies.  This is what they knew about preemies. Hold them close to your skin, close to your heart. That will help them thrive.

But my baby was too premature, even for that. For the first three weeks, I wasn't allowed to hold him. Holding him would be too stressful on his underdeveloped nervous system, like nails on a chalk board. He wasn't ready for touch yet. He wasn't supposed to be touched yet.

We'd finally gotten passed that stage, finally gotten to the point where my touch was supposed to be good, was supposed to be what helped keep him going.

And then this happened.

It was the closest to the grave I'd seen him since the day he was born.

And it happened while I had him nestled close to my heart.

Maybe I'd readjusted myself at a wrong time and interfered with his breathing tube. Maybe I wasn't wearing enough blankets for him. Maybe I wasn't warm enough. My husband always says he's the cold blooded one, being an economist and all. I guess I always assumed I was thus the warm blooded one in the family.

Five minutes. Five minutes was too long to go with a heart that didn't work well and air that didn't circulate well. Dusky skin. Grey skin was scary.

He'd survived, but the experience left me a bit shaken.  Not in the moment, mind you. At the time, I followed protocol. I called the nurse, I told her he was cold. When he kept getting colder, I called her again. I pointed out the bradies (they had been keeping an eye on them too), I held still while they fussed. I didn't cry out, I didn't do anything but stay calm. Because that's what he needed. He need me to be calm and warm.

But afterward, afterward I sat in a chair a few feet from his crib and folded my legs under me and put my head in my hand. My baby. My poor baby. My heart ached.

Needless to say, I wouldn't be holding my son for a while. He was deemed too unstable. I was back to being able only to watch from the other side of his plastic box. I could change his diaper, I could put my hand on his head, and I could hold him up for his nightly sheet change. But that was it.

9:00 pm  cares were ridiculously late for my schedule.  They often started a bit late, because the neighboring boy's cares took a long time, and then they took at least a half an hour to complete. We weighed, measured, charted, changed, and tucked Jonathan in. I discussed his numbers with the nurses and asked all my medical questions. Sometimes we even laughed together or shared stories about our other kids or life outside the NICU. It was a way to build trust. As result, though, I didn't leave the hospital until 10:15 or 10:30 most nights, and didn't get to bed until 11:30 or midnight. Then I pumped at 3 am and my girls woke me up at 6 am. But that wouldn't deter me.

Nine at night was the care time when they changed Jonathan's sheets. It was my only chance to do something like hold him, cupped in my hands, my hands only an inch apart holding his lower back to feet on one side and head and torso on the other. This was my moment to be mom without  harming my son. Now that I was able to drive to the hospital on my own, either Steve or I would be there. Every night. It was the only holding I'd have for a while.  And more and more, I worried that I was on borrowed time. He must know he's not alone. He must know how much he's loved.

Before I left that night I took a picture of him, happy, sucking on his pacifier. No longer grey.

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