After a couple of detours, we're back to the story.
I told you about the first few days in the NICU in this post. Now I'll try to briefly (it's never brief, is it?) tell you about the rest of our stay.
Ask anyone who's experienced in the NICU, and they'll probably described it as a roller coaster ride. The ride starts out scary and is bumpy along the way. It has a lot of ups, a lot of downs, and you don't know what to expect. As the ride continues, it generally gets smoother and smoother, hopefully without any surprises along the way, but you never get too comfortable.
First, I'll talk about the NICU staff. Wow. It's absolutely amazing what they are capable of. Take comfort in knowing that they are one smart, incredible group of people. Neonatologists, nurses, nurse practitioners, respiratory therapists, dietitians, speech therapists, on and on and on. Not only do these people know their stuff, they act quickly.
For example, when our son's lung collapsed. They called us into the back room to view his chest x-rays. The doctor had 3 x-rays for us to see. We both had to sit down. The first one, he explained, was normal. The second one, he explained was all cloudy where his lung collapsed. The third one showed where the chest tube was inserted to vent the lung, and it was already healing. I wish I'd known everything was okay prior to the entire 5 minute discussion, but it was pretty incredible how fast they'd gotten from problem to solution.
Thankfully, our son didn't require any surgery during his stay. He received artificial surfactant (thank you March of Dimes!!!!) after birth to help his lungs be more flexible. His heart ductus closed with ibuprofen, so he avoided surgery. He had several eye exams (he passed thankfully), also after he came home from the hospital, to ensure that he wasn't developing ROP (Retinopathy of Prematurity - one of the most common causes of blindness in children). He has 2 blood transfusions, I believe both during the first week or two. He had a spinal tap to ensure there was no infection. He had blood pricks on a regular basis to make sure things are in check. He slept in an isolette, which was heated because he was too small to maintain his own body temp. He was also nested in a bundle so that he would feel more like he would be in utero. He mostly slept on his stomach because it aids digestion and is easy to breathe. We couldn't touch him for a while because that would have been stressful for him, and gradually we could rest our hands on him, and later hold him during kangaroo (skin on skin) care. He moved to a traditional baby bed when he had more meat on his bones - at about 5 lbs. I wish I could recall more about the first time I held him. I don't think I moved a muscle! His heart rate and oxygen levels were constantly monitored. He had lots and lots of people looking after him.
He had 2 head ultrasounds revealing both IVHs in his brain. Although he had a level 2 and a level 4 (worst), his level 4 was on the small side and both resolved. There was nothing to be done for this, and we were told that what it means in the future is unknown, but that in his case the long-lasting impact would probably be minor. They reiterated that babies' brains have a great ability to rewire themselves because they are not developing and that parenting can really impact the outcome. Their big suggestion that we heard loud and clear was to be involved, challenge him, and read, read, read. We started immediately and had a little library of books in his cubicle.
He was on a ventilator, oscillator, CPAP (continuous positive airway pressure), a high flow nasal cannula, and a standard nasal cannula, until one day he was weaned to room air with no breathing assistance. (Oh happy day occurred at 37 weeks gestation - - so, 11 weeks later!) We are so thankful he did not come home requiring oxygen. Most of our son's problems revolved around his stiff lungs (RDS - respiratory distress syndrome) as well as feeding.
Feeding
He initially received nutrition via TPN via IV initially, and later a PICC line in his leg (more long term solution). The TPN fluids contain everything he needed to maintain adequate nutrition. Then, at some point, I can't recall when, they start giving him breast milk via tube. I believe they started with 1 mL but I cannot remember. They watch him very closely (by withdrawing stomach contents and examining) for any signs of NEC, and gradually increase the amount of milk the baby gets to ensure it can tolerate the milk digestion. Then, once our son reached 34 weeks gestation, when babies develop the ability to coordinate their suck-swallow-breathe mechanism, we began oral feeds. He did well during his first feeding but it wore him out. I'd have to look it up but I believe he ate about 10 mL. Whatever he couldn't eat, they'd give to him via a feeding tube so he could rest. They fortified his milk so that it is more calorie dense (so he has to eat less!). As he gained weight, they gave him more milk. The requirement to come home was that he must be able to take all his bottles for 24 hours while gaining weight. Sounds easy enough...poor little guy did pretty well, but was stuck at 50% bottles for months, and then started to downright refuse. A week after his due date, we were scared and didn't understand why our son would not eat. They started to talk about sending him home with a feeding tube when we eventually learned that he has severe GERD/silent reflux with no clues! Once medicated (Prilosec!), he started taking bottles within 2 days. Then one evening, during a busy night in the NICU, he ripped his own feeding tube out. It's like 8 inches long so it was pretty funny. And they didn't make him put it back in! About a week later he started gaining weight (albeit slowly with fortified milk to 24 calorie per ounce instead of 20 calorie per ounce)...and we were home!
Daily Stuff
We were involved in his care. Most days we got to take his temperature, change his diaper, change his clothes (he wore clothes after about a month - he swam in preemie clothes) and fed him (once he was older than 34 weeks gestation) and did kangaroo care (skin to skin).
And I can't forget weigh in. He was weighed every night at 8:00 PM. You better believe I wrote down every single weight, in grams, and that we put the graph in his baby book. The doctors think us engineers are pretty silly sometimes.
We also did a lot of visiting with nurses and asked a lot of questions. Not only did we want to understand what was going on, but we wanted to understand how these contraptions worked and what this beep and that beep meant etc. We got to be pretty knowledgeable. We even know when his alarms were going to go off before they did :)
Fun Stuff
We did have fun too! We got to give him baths when he got big enough. We read to him. We did crosswords and wrote in my journal and played video games (Nintendo DS) at his side. We took breaks to get food in the cafeteria. We brought in pictures to hang. His nurses made him pictures and signs and documented so many of his milestones. I brought my digital camera in with me every day and took way tooooo many pictures - that was very therapeutic. I pumped a LOT and prayed a LOT. We stopped by the hospital's chapel every night to ask for God's strength and help.
Schedule
We visited him every day and every night. Thankfully we live very close and have no other children or pets to take care of. I worked part time and spent the afternoon with him. Then my husband and I went back to see him every night after dinner. We had a regimented schedule that went like this. We took one night off a week to relax. We spent most of the weekends there too.
6:00 - wake up
7:00 - pump
7:30-12 work, pump at work at 10:00
1:00 - pump at hospital
4:00 - pump at hospital, go home
wash pumping parts, eat dinner, etc.
7:20 - pump at hospital
8-10 - visit baby
10:30 - pump at home
11:00 - bed
3:00 am - pump at home ! sometimes call to check in on our little dude.
It was a long 117 days. The beginning was the most difficult, with the end also being very difficult in a different way. Andrew came home just prior to reaching 43 weeks gestational age, with a conditional of a 2 day weight check that he passed. :)
I think I covered most of it!
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