Thursday, January 17, 2013

Raising a Preemie

My son was born at 28 weeks gestation. He weighed 2lbs 14oz and was 15 in long. He spent 2 months in the NICU.

He couldn't breathe on his own. He started on a ventilator. Then, went to a bubble CPAP. He went back & forth between those two for a while before staying on the bubble CPAP. He eventually made it to a nasal cannula, then finally room air. Before he was born, they were giving me shots of steroids to help his lungs develop. After he was born, they were giving him caffeine to help him breathe. He came home on an apnea monitor. It was like they sent the sounds of the NICU home with us, just in case he didn't feel at home without the alarms.

He couldn't eat on his own. He never did latch on to breast feed, but did eventually take a bottle. For a long time, he ate every hour because he couldn't eat much at one time. Between eating every hour & only sleeping for 20 minutes at a time, we didn't get a lot of sleep his first year or so.

He started seeing an eye doctor before he left the hospital. Retinopathy of Prematurity is a common problem for babies born before 32 weeks. It can cause vision loss, even complete blindness. So, they had to check him for it. You can't just check once & be done, though. You have to check repeatedly until the child develops the condition in one or both eyes or it is certain that they won't develop it. Amazingly, he never developed it.

The most frightening thing we dealt with during his NICU stay was his jaundice. I know most people don't think of jaundice as dangerous. Most babies get it and are just fine. What you may not know is that severe jaundice can be quite dangerous. Serious complications can include cerebral palsy, deafness, and brain damage. Jaundice is generally treated with phototherapy - those special blue lights. However, even though he was surrounded by those lights, his bilirubin numbers kept rising. The doctors told us that, if it got much higher,  they would have to do an exchange transfusion. That is exactly what it sounds like - removing all his blood & replacing it with fresh blood. That was a truly terrifying moment for me. Fortunately, the numbers finally started to go down.

We were lucky. We were so lucky. There were babies who had had surgery. There were babies waiting to have surgery. There were babies with problems far worse than my son had. There was one baby that came in weighing less than 1 pound. It was so small that it couldn't even go in an incubator, because an incubator would be too big & wouldn't keep it warm enough. So, it was in a tiny plastic tent. I knew we were lucky & that is what kept me sane. It is so hard to sit next to your baby, as the doctors talk about removing all his blood. It is so hard to be holding him & have those alarms go off saying that he stopped breathing & his heart rate is dropping. I heard those alarms in my sleep.

When I was at the hospital with my son, I felt guilty for not being at home with my husband & daughter. When I was at home, I felt guilty for not being at the hospital. I hated having to say goodbye to my baby boy every day. I wanted so badly to take him home with me. I cherished the moments when I got to hold him, though. When they're that small, you have to hold them a certain way. You can't cradle them in your arms the way you do with full term babies. You have to do what's called Kangaroo Care. Since they can't regulate their own body temperatures, and blankets won't keep them warm enough, there has to be skin to skin contact. So, I would wear a button-up shirt (they are easiest for this), open it part way, and snuggle my little boy on my chest. He would bury his head in my neck, and I would revel in the warmth of my little guy. I would sit there, trying to tune out all the alarms going off around me, focusing just on my baby. I would talk to him, tell him about his sister & his daddy. I would tell him stories and sing to him. I hated having to put him back into his incubator & leave him there.

He came home about a month earlier than was expected. As I said, we were so lucky. The doctors told us not to take him out unless we had to. They told us not to have him around too many people. It was February when he came home, and cold, flu, & RSV season was in full swing. He was at much higher risk for respiratory illnesses, so I listened. I told everyone that we were not accepting visitors. Nobody would be allowed to visit him. Nobody would be allowed to hold him, except us of course. Many people were rather angry at me for this. My mother tried to guilt me into allowing visits by saying, "He needs to bond with his grandparents" (I also hadn't allowed visitors while he was in NICU to prevent infection). I told her that it was far more important that he bond with his parents & sister first, and that he could bond with grandparents when they weren't posing so much of a health risk to him. She didn't appreciate that. Nobody did. I don't know that anybody understood my decision. We enforced it, though, despite angering several family members. My baby's health & life came first, no matter who got upset about it.

We had regular appointments with the NICU follow-up clinic. They were concerned with his muscle tone. His muscles were too tight. They told us that he would need physical therapy. They gave us some stretches & exercises to do with him every few hours, and we did them. He also needed tummy time 10 times a day for about 10 minutes each time, to strengthen the muscles in his neck. We followed their directions and when we went in the next time, they told us that he was doing much better and wouldn't need physical therapy after all.

They sometimes voiced concern over him not hitting milestones when they thought he should. I didn't worry, though. I know my son. He has been a perfectionist since birth. He might not hit a milestone when he "should," but when he does hit it, he will far surpass expectations. Saying a few random words wasn't enough for him. He said one word at 12 months (that would be an adjusted age of 9 months). He then barely said an intelligible word for the next 10 months. When he started speaking again, it was in full sentences. He refused to take a few steps & fall down, like other kids. He held onto the furniture until he was sure he could walk without out it. He then spent some time (maybe a week) walking just far enough away from the furniture that he could grab on if he was going to fall. When he was certain he could walk without falling, he took off at a run (and hasn't slowed down since). This is just how he does things. Everything has to be on his timetable. He doesn't care when he "should" do it. He just cares that he does it right.

He doesn't have a lot of lasting effects from being premature. He has ADHD, but didn't have much chance of escaping that since everyone else in the house has it. He does have some respiratory issues, though. He is more prone to respiratory illnesses. We recently found out that he has some allergies. There's nothing too severe, though.

There are very few sounds that I consider frightening. In fact, I can only think of two. One is the sound of a giant spider tapping its talons on the floor (don't ask, it was from a nightmare I had that is burned into my brain forever). The other is the sound of those NICU monitor alarms going off. Years later, both of those sounds haunt my darkest dreams.