has been pretty uneventful...YEAH! We couldn't ask for more at this point. Our little Bela has decided to play by the rules for the first time in her life..(well, sort of). Last Friday we made a little trip to the ER, just because she dosn't like to go too long without some thrills, I think. She had a very wet cough all last week and we were paranoid it was possibly the start of another big problem...that is how her recent heart failure all started. So we went in to have some tests done and they all came back looking great. Phew! First trip to the ER ever that didn't end up in admission. We were prepared for it but hoping and praying for it NOT to happen. She gave everyone she saw big smiles, and we knew soon after that she was okay. THe cough mysteriously decided to dissapear the next day. It was nasty while it lasted though, and has come and gone too much in her little life, so we decided to do some more testing. We went in for a barium swallow study today after her regular apt with her cardiologist. (the cardiology apt went wonderful, with Bel
weighing in at 9 lbs 9 ounces--8 ounces in one week! :)) The swallow study was not quite so wonderful. Turns out she has a severe swallowing disorder, as the speech pathologist called it. HUH?! What else!? Basically, she has very weak swallowing muscules and so she has been aspirating milk into her lungs this whole time, causing the cough and congestion, and most likely is the culprit for the pneumonia she has last month and the resulting heart failure. THey start out by giving her barium in a liquid form, the consistency of milk. If they notice any aspirations they go up to the next level of thickness. She has to go up 5 levels to the consitency of cold pudding. So bottom line of the study was: no more bottle feeding or nursing for Bela. SHe will aspirate and it is too risky to cause infections. Which sorta stinks because she actually enjoyed her bottles, they usually put her right to sleep. It also means we'll be seeing a lot more of her feeding tube, and she'll probably be using it for a lot longer now. SO much for working at the bottle and getting that thing out of her nose! It sorta upset and frusterated me a little this afternoon, but then I realized that I'm really glad we figured this all out and it will ultimatley help her stay healthier. SHe might even grow quicker without expending the calories bottle feeding. When she does start solids, I will have to thicken them up so there's not chance of aspirating. Hopefully this problem will get better over time as she gets stronger.. Barium is thick white chalky stuff and Bela decided she wanted to let me know just how gross it was so she threw up all over me right after she drank it. I left the hospital today with a huge white mess all over the front of me, and all over her...I'm sure people were wondering what the heck I feed my baby.
Overall, she's doing great. Heart wise.. everything still looks the same, which is good. Except I learned today that her aorta (which started out the size of angel hair pasta) has grown significantly (to about the size of a pen) which is a VERY good thing. In her next surgery they will be reconstructing it to make it bigger (about the size of a thumb) and doing surgery on a 'pen' is a lot less risky than 'angel hair pasta'. Sorry for all those analagies...that's the way it was explained to me. We're most likely looking at having her cathed around the middle of August and having surgery beginning of Sept. We may or may not have to stay at the hospital in between depending on what the cath shows. I sure hope we get to come home. I can't believe that's only a month away. So scary and so anticipated at the same time. There are so many risks associated with the surgery, but obviously more associated with not doing it.
We had her first apt with her endocrinologist on Tuesday for her Turners. IT was sorta wierd to have an apt for the Turners when ALL the focus has been on her heart. It was like, Oh yea, we also need to deal with this for the rest of her life. Right now she is going to need some thyroid hormone because her thyroid level came back low from her blood work. In about a year she will start growth hormone. And that's as far as I wanted to look ahead...there's much more to do but nothing that I wanted to deal with right now. The dr. probably thought I was wierd when I literally asked him to stop telling me what she needed, but I don't care...I can only take so much of what lies ahead for my daughter. He said that physically, she wasn't really a 'text book' turners baby...she dosn't have too many noticable physical symptoms. (Despite her being WAY off the growth charts). He said that she's got two of the most difficult diagnosis for growth against her so we'll continue to shout for joy for every little ounce that she gains.
She also had her developmental evaluation and we got some wonderful results...she is within her age group in every area of development right now except feeding because of the tube feeding. I was sooo happy about that!! So much hospital time and she's still keeping up. We'll get her reevaluated after this next surgery, but at least she's going into it pretty much at her level and not behind..
Wow...is that really 'uneventful' these days?!?! As long as we are home and Bela is pink and smiley, I guess that's exactly what it is...