O, So Much Love

Welcome to my new blog, O, So Much Love (get it?? That's about as creative as I get!). Back when Owen was born, Keith and I occasionally blogged about having a new baby, but at some point the blogging went by the wayside. Then came Facebook, and with his own account Owen kept his friends and family informed of his doings himself. But then the FB nazis took away his account! I've been enjoying some of my friend's blogs on their kids, so I've been meaning to start back up again. With the arrival of #2, it's about time. Hopefully this one will last longer than my photo blog. :-) This blog will be about what Owen is doing, how Sophie is coping with life outside of the womb, and how Keith and I are surviving with two kids. Sophie is having a lot of medical issues, so I will try to be as accurate as possible, but a warning to any doctors or nurses out there, I'm probably going to mess up the medical terminology.


You may be wondering: Sophie and medical issues? Don't worry, she's doing really well right now, but there are some issues to be taken care of and some potential issues that are being tested.


1. First, a TMI warning: we call this one the Rear Plumbing Problem. To put it bluntly, Sophie's anus is in the wrong spot. It is closer to the vagina than it's supposed to be. The issue is that it may not be going through her sphincter muscle, which would cause issues down the road. To know the full extent of the problem they would have to put her under anesthesia. While she's under, if they can they would fix it. Since she's stooling fine for now, they are going to wait a couple of weeks (see #2 below). Here is more info on this condition if you're interested.


Because they found this birth defect, they have done more testing. The idea is that if there was one problem during fetal development, there could have been others at the same time. This is what else they have found so far (I won't go into the things they found which are "findings" but aren't problems at this point like an extra piece on her kidney and a bicuspid aorta valve):



2. Problems with her liver. Sophie potentially (most likely) has an issue called Biliary Atresia. Her liver appears to have a blockage such that it cannot secrete the bile correctly. They will need to do a surgery to first determine the extent of the problem, and then if possible, fix it by by-passing the blockage. This is definitely a bigger surgery than #1, but the doctor's assure us that babies handle surgeries a lot better than adults do. They may even be able to combine this surgery with #1. The current thought is to do the surgery in a couple of weeks.



3. They found some extra fluid in her abdomen, a condition called Hydrops (she also had extra fluid in her skin at birth). This can be caused by infectious diseases, cardiac issues, or chromosomal issues. They have ruled out any infections and cardiac issues, so they are doing a full chromosomal test (this is where the "syndromes" are found). This is very frustrating, because it takes at least a couple of weeks to get the full results back. We did, however, receive some really good news today: she is negative for Turner syndrome and Alajear syndrome (I have no idea how to spell that last one).



So Sophie will be in the NICU for probably at least 3 more weeks. I'll write more later on how we're handling that. As far as being a premie, Sophie is doing great. She never had to be on oxygen, and is now off her warmer. She has a feeding tube, but is starting to take some of her feeds from the bottle. The main cue that she is ready to go home (other than recovering from surgery) will be when she takes all of her feeds from a bottle or the breast.



Today is Sophie's two week birthday. I was hoping to get some pictures today, but I am sick, so I couldn't go see her. :-( It was scary coming home last night with a 103F temp, considering I had just spent the day with Sophie. Hopefully she doesn't catch anything.



As for Owen, he doesn't quite fully understand everything that's happening. He likes talking about Sophie, and visiting Sophie, but that's probably because they have Lincoln Logs at the NICU for him to play with. :-) He told his teachers at day care that Sophie was going to go home with Grandma and Grandpa, so I think he's in for a big shock when she does come home. So are Keith and I! :-)



That's enough for today. I hope to write up Sophie's birth story soon.