Not long after we brought Megatron home from the hospital he had his first "episode." One that I think stopped both mine and The Pilot's hearts. He turned bright red, arched his back, limbs went rigid and didn't appear to be breathing. Luckily my infant CPR/choking training kicked in and I just picked him up, flipped him over and started slapping his back. He finally gasped and started crying. And then I started crying. Sigh. His amazeballs pediatrician thought it might be reflux but suggested we wait to see if he did it again. He did. And I think my heart stopped again, even though we felt more confident that he would be ok.
While I was pregnant I actually had hoped Megatron wouldn't be a gassy or colicky baby. I had heard the horror stories. And then I found myself giving a syringe full of Zantac to my baby twice a day. Sigh. Not fun at all. Surprisingly, he takes it really well most times. He just starts sucking on the syringe as if it was his bottle. Still, having a baby who doesn't feel well sucks. Heck, I had reflux throughout my pregnancy and you all know how much I whined about it. Poor Megatron doesn't have the ability to whine yet so he just cries and arches his back. And my heart aches for him.
But the reflux almost seems like a drop in the bucket compared to the news that came a couple weeks ago. Megatron was jaundice so for the first 3 weeks of his life we had to have his blood drawn every 2-3 days. It was not pleasant. But finally the bilirubin levels started to go down and we were given the ok to wait 2 weeks until the next blood draw.
During that time we did our best to figure out the whole parenting gig. It was rough! The sleep deprivation is no joke. There is nothing that can prepare you for that. The Pilot was still home on FMLA to we kind of just holed up and tried to figure out the family of three thing. Megatron was looking a lot less "tan" (from the jaundice) and was starting to get some meat on his bones. We took those as good signs so when the results from the blood draw came back, we were pretty taken aback.
The bilirubin levels had gone back up. Not good. While jaundice is fairly common in newborns, especially breastfed preemies, it usually goes away by 4 weeks. That wasn't the case for little Megatron. The levels going back up indicated his liver wasn't excreting properly.
Enter the longest and most stressful week I've ever experience to date. We made 3 trips to Children's Hospital, spending the majority of each of those days having tests done. There was an ultrasound, lots of blood work and several scans in the nuclear medicine department. Most of it was much more traumatic for me and The Pilot than it was for Megatron.
We remained optimistic that maybe he was just having trouble since he was born early and just needed a little extra time to get rid of some sludge in his liver. No such luck. The doctors think he is either missing some plumbing around the liver or it is blocked. Either way is not good and the only way to fix it is surgery.
When we found out, I felt like I had been hit by a bus that I didn't see coming. In the two weeks since we found out he would be having surgery, there have been a lot of tears, anxiety and heartache. This wasn't part of the plan! Just when I feel like I'm getting a grip and coming to terms with what is coming, I'll have a set back and the fear creeps back in. I'm doing my best to stay positive but there are times, especially when I'm feeding him and he looks so peaceful and perfect, when I just find myself crying. There is a good chance he will need medication and monitoring for the rest of his life and that's not something any parent wants for their child. I try to tell myself that it's not any different that me having asthma that requires daily medication. It's no different than having diabetes or allergies. But again, I don't want that for him.
Luckily because he's so small, he won't remember any of this and he will grow up not knowing anything different. Also, hopefully I will have come to terms with all this by the time he's old enough to start asking why he's not like the other kids. I've already come up with a story to explain the scar he's going to have on his belly....he was shanked by another baby in the intensive care. All the other kids will think he has street cred.
His surgery is next week so the blog is probably going to take a backseat for a little while. He'll be in the hospital for awhile and we just don't know what to expect. I've never been a "let's wing it" kind of girl but this sweet baby has other plans for me. It's going to be a stressful couple of weeks for us but like with anything else I do, I'll just do my best to keep moving forward. That's one skill Megatron is having to learn early on but will serve him well. Just keep moving forward little man!