Good News and Bad News

Our little gymnast! She is going to take after daddy (for those of you who don't know, Tom was in gymnastics in high school!).

"Daddy is letting me feed myself peas!"

Fiona had appointments on August 3 with Surgery, Pulmonology, and ENT. All of our news from that day was good news! Dr. Burns (her surgeon) was very pleased with the way her O is looking. The compression is working and is doing exactly what it is supposed to. It is crazy the way he pokes and squishes and messes with her belly and she doesn't even care! She just lays there and smiles! He isn't ready to do surgery yet though. He wants to be able to get as much in as he can the first time and thinks she needs a little more time. I'm not so sure I was ready for her to get surgery either. I know it needs to be done and I am excited for that to happen and the day that it is finally repaired, but I am also terrified. But Dr. Burns is awesome and is so confident in what he is doing that it makes me feel a little better! And he told us probably the best news we have ever gotten from one of her doctors. We were talking about her sugeries and he said that we don't have to consider anything that he is doing life threatening!! It was just so nice to hear. Not that there aren't still things to worry about, but that makes the worrying a little less! He also thinks that she shouldn't be in too much pain because she doesn't really seem to be able to feel the O much. He said he's sure she would be able to feel it if we poked it with a pin or something, but it wouldn't be the same sensation as any other part of her body. So we were thinking that hopefully she won't be in too much pain after the surgery (until we got our bad news that is)!

At her Pulmonology and ENT appointment we got some more good news. The ENT part was mostly just a check up from her scope and he said everything still looks good. Dr. Aujla (her pulmonologist) is also very pleased with her progress. We ended up turning her BPM (breaths per minute) down to 16 (from 20) and her pressure control down to 18 (also from 20) and she seems to be doing very well with it! We were actually supposed to leave her BPM at 20 during the night because when she is in a really deep sleep she tends to ride the vent- meaning she lets the vent do all the work and doesn't breath any on her own. Well 16 is too low to let her ride it. But we have had her night nurses watching her closely and she is doing really well with having it at 16 and breathing some on her own! We are working our way down! We still are not sure how her surgeries are going to affect her lungs so we have no idea if she will need to be on the vent the whole time we are fixing her O or not. She breathes really fast just when we have it wrapped with the ace bandage so I would assume the surgeries are going to do the same.

Ok so now onto the bad news. She is still having issues with throwing up. Just today she threw up 5 times. Her surgeon thinks that most of it has to do with wrapping it with the ace bandage because we are putting so much pressure on her stomach. But she throws up even when we don't have it wrapped so we have no idea. We are going to change her formula just to see if that is the issue. Hopefully it works. And some more bad news. We went to Dr. Gorlowski (her pediatrician) last week also, and he think that she has an inguinal hernia. It doesn't seem to be bothering her. Most people are in pain when they have them, but she doesn't seem to be in pain at all. He is hoping that they can just wait to fix it until they do the first surgery on her O. We are also hoping that. But this is why she might be in more pain than we thought if they have to do both things at the same times. Oh and Dr. Burns also thinks that her spleen is in the O too. As he was squishing around he felt what he thought was her spleen.

But she is still happy as can be! She started taking a little more solids. Tom got her to eat peas last night. And she is moving around in her walker, mostly backwards.

We have two new additions to our little circle of O babies. Please keep Lincoln and Harper (and their families) in your prayers as they are both still in the NICU.