Wow. My baby is out of the "bucket". To anyone who doesn't have kids, that's no big deal. Everyone else knows that this is a bittersweet moment. Finley is no longer an itty-bitty baby, but turning into a real kid. The road has been rocky and there was a significant chance that he wasn't going to make it to this point.
When I was about 30 weeks pregnant, my OB noticed that I was carrying approximately an additional half gallon or more of amniotic fluid. I was dispatched to a perinatologist who diagnosed our unborn child with a condition called Congenital Diaphragmatic Hernia. This is a situation where the muscle separating the abdomen and the chest (the Diaphragm) doesn't form fully. This allows the intestines, and sometimes the liver and stomach, to invade the chest cavity, thus preventing the lungs from developing (the buildup of amniotic fluid was from the baby's inability to swallow. Our child's esophagus was compressed from all the other stuff in his chest). We were given a 50% chance of survival.
Gavin and I have never wanted to know the sex of our child before he/she was born. In this case, we chose to find out. We felt that if we were only going to know this child for a short time, we were going to know as much for as long as we possibly could. We also felt that building a relationship with him/her would aid with our connection and increase the odds of survival.
To our surprise (okay, my surprise. Gavin was certain) it was a second little boy. Here was the problem with another boy: WE DIDN'T HAVE ANY NAMES!! Gavin and I picked out the names for daughters, but could never agree on boy names. It took us forever to come up with "Shaw" for our first son. Now, we had the task of finding something appropriate for this child.
It turns out that our son's condition was instrumental in choosing his name. Gavin and I are both of Irish descent, so we wanted a name of Gaelic origin. As we looked through names, we saw Finley--a Gaelic name meaning "fair warrior" and knew that had to be our child's name. There was no question after that moment. Our son was a Finley.
I spent the next several weeks on bed rest. If we were able to prevent Finley from being a preemie, his odds of survival increased significantly. I spent that time laying on my side in the living room, laying on my side in my bed and laying on my side in the hospital every time I went into premature labor. Who knew doing nothing was so exhausting??
When the Big Day finally came, I actually had to be induced. It turns out my uterus was so distended from all the extra fluid, I COULDN'T go into labor on my own. We headed down to the hospital where they started the pitocin. 25 minutes later, they came in and turned off the pitocin drip--it turns out they didn't have an ECMO (essentially, it's a heart-lung bypass machine for infants) bed at the children's hospital where Finn would be taken after delivery and stabilization. Unfortunately, they couldn't stop the contractions, so I got to stay while they shot me up with MORE of the fun drugs they give women who are going through pre-term labor.
The hospital did manage to stop labor and send me home, only to call me back two days later when a bed became available. We tried for a normal delivery, but it wasn't in the cards. Finley's heart rate dropped and we were rushed to the OR for an emergency Cesarean. Anyone who has had the emergency C knows that it's freakin' scary. I panicked. I don't know if it was the sudden realization that my child--who was safe as long as he was inside my body--was now on his own and I had NO idea or control over what would happen or the realization that he may not live (it was easy to push that fear aside as long as he was inside me). I was so freaked out that they had to put me under general anesthesia for the delivery.
I woke up a couple hours later to be told that Finley was born at 6:48 p.m. and weighed 7 lbs 10 oz and was 20 inches long. He came out pink and screaming and beautiful. He was rushed up the NICU where he was stabilized and sedated. Shortly thereafter, he was sent over to Scottish Rite at Egleston where he was set up in ECMO Bay in the NICU. He never needed ECMO, but, thankfully, it was there if he did.
The repair of Finley's hernia took place when he was 6 days old. They were able to do the surgery laproscopically, so there was less scarring and they were able to use existing tissue, which greatly decreased the odds of recurrence. Our child was going to live.
Finley remained in the hospital for 50 days. Gavin and I went nearly every day to see him--I went during the day, he went at night after work (Keep in mind that we have another child who still needed us--although he's not mentioned much in this post, he was a huge factor. Thankfully, he was in a day care that took excellent care of him until I could get there.). During that time, we discovered that he aspirated (liquids went down into his windpipe when he drank), had reflux, had a heart defect, a pectis (sunken chest syndrome), he became a morphine addict and then a recovering morphine addict. This is all in addition to having only half of a left lung (the right one is fine)
So, Finley is home and is now 10 months old. He's pretty normal for a kid who started off as he did. He's starting to crawl and babbles constantly and is just the happiest child I've ever seen. He still has really hideous reflux and throws up whenever we feed him more than 4 ounces of formula at a time. We have to feed him every three hours 'round to clock to keep him growing, which makes solid sleep a precious commodity around here. Since his reflux is not getting any better and we're still having to give him half of his meals through a feeding tube threaded through his nose down to his stomach, we've made the decision to have a surgery performed on him that will tighten up the opening to his stomach and allow him to take more than a little food at a time. This surgery will also place a G-tube: a feeding tube that goes directly to his stomach. It took me a long time to accept this as the next course of action, but I honestly embrace it and anxiously anticipate it at this point! I'm tired of making him cry every time I put that damn tube up his nose. I'm heartbroken every time he cries from acid coming into his esophagus. I'm tired of having stomach cramps for three days before he has to be weighed. I'm tired of crying every time I feed him because he won't take more than an ounce or two by mouth. And all of these are just my emotions about this--it doesn't even touch his physical discomfort about any of it. The surgery is February 2nd and it can't come soon enough.
So, yeah, something as simple as changing out a car seat may be no big deal to some, but, considering we may not have been able to use the car seat in the first place, it's an historic moment.
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