Our appointments at Children's on Monday for Maggie were very informative and very LONG (almost 4 hours!). We first saw a genetics doctor who basically is coordinating her care and overseeing everything. She was fantastic. She examined Maggie very thoroughly and wanted to know details about how she's eating, sleeping, interacting, etc.
She got more accurate weight and height measurements (everything before had been done w/clothes on and kinda quick). She has gained a tiny bit already, she's at the 7th percentile in weight now! Whoo-hoo! But they think her height is smaller than the original measurements showed. She is so far down off the chart that they are concerned. For right now, we just wait and see how she grows. It's totally fine for her to be short, but she needs to be growing. So that's why she's looks chubby despite being tiny, since her weight is not in proportion to her height. Her head circumference is about 10th percentile, which is good. That's in proportion to her weight and is also another clue that she's probably just a small kiddo.
Developmentally she's doing really well considering how small she is and her background. That's another good sign that hopefully she doesn't have any other health problems and just needs time to catch up. Maggie is very social and loves attention. She did great at the appointments and showed off some of her silly tricks to the doctors and nurses. I'm glad they got to see how smart she is!
They are also a little concerned about her aversion to solid food. She is such an inexperienced eater and literally cringes at any offer of solid food. She'll actually pick up a cheerio or cracker we give her and throw it! For now, we're going to just keep trying but if she continues to struggle, then we may sign her up for some feeding therapy for some extra help.
We also learned more about her cleft. She has a bilateral cleft lip, which means her lip was split open on both sides originally. It was a much wider split on her left side. She had one surgery on her lip in China when she was around 6 months old. She really does look so much better now since that surgery, it's amazing what they did. But our surgeon pointed out something that we hadn't noticed. She is missing the little indent that people generally have above her top lip and under her nose. I can't remember the medical term (I'm terrible with medical things!). He said he would have made sure she had that if he had done her originally surgery and he wasn't very happy that that wasn't taken care of in China. He said that will complicate her repair here, as he's not sure where that part of her upper lip is. He said it may take more than one surgery to get that right.
Also, her top lip has adhered to her top gum, so we can't lift up her lip to see her top teeth/gum area. They said that is common and fixable. She does have one top tooth on the right that is in the correct spot (we discovered this when she bit us!). Plus she has the one "crazy" tooth as we call it. That's the top front tooth on the left. It's firmly in her gum and pointing sideways. It will have to be pulled. We had thought it would be pulled during her main surgery, but her surgeon wants that to be done beforehand. So she has an appointment at our pediatric dentist next week to get his thoughts about that tooth. (I still can't get over the fact that the dentist I've taken the kids to over the years happens to be the top dentist who works with the cleft palate team at Children's. Jackpot!! We had no idea ahead of time how that would fall into place.)
The reason why that tooth can be seen is because her lip split back open after her surgery in China, exposing part of her top gum and the tooth. Her top gum is also missing sections. She has the front section where her front teeth are, but then there is an open gap with no gums on either side. This is part of her bilateral cleft, which included her lips and gums. She also has 4 teeth on the bottom so far.
Her palate has about 10-12mm opening from what he could tell (she's not too cooperative with them looking in her mouth!). He said it's a standard cleft palate, going from the front of her mouth all the way back.
Before
After (ignore the constant baby food encrusted in her nose!)
Our surgeon said we could either do her lip surgery first, which would involve a 1 night hospital stay, then do the palate later, which would be 2-4 night hospital stay. Or we could do it all together, which will probably be a 5 night stay. We opted for doing it all at once. It's going to be so hard to keep her healthy before the surgery that we decided to just do it once and get it over with, even though we'll be at the hospital for a longer stretch. She won't be able to go home until she can take fluids on her own, which they said can be pretty difficult for little ones sometimes.
So here's our current surgical plan for her:
1. See the dentist and if he agrees, have that tooth pulled sooner rather than later, so it can be healed by the big surgery.
2. Feb 6th is tentatively set for the big surgery. They will repair her lip, try to fix the middle indent, repair the palate, and get tubes placed in her ears.
3. She may need another repair on her upper lip to fix what was done in China at a later date.
4. Possibly another touch-up before kindergarten.
5. Definitely a big surgery around the age of 6-8 to do bone grafts for her upper gums.
6. Another surgery or two as she grows through her teens. At this point some of it will be up to us how much we want to tweak or leave alone.
AND lots of dental and orthodontist work along the way. We're not certain if she has all her teeth in her gums. Most likely she'll have a "hole-y" grin through a good part of her childhood until we can do something permanent for her.
That part of the appointment with the genetics and surgeon took 2 hours. We got instructions for pre and post op, and things to work on now. One of the worst things that will happen after her surgery is that she'll be in elbow restraints for 3 weeks after the surgery. They are little velcro wraps that go around her elbows to prevent them from bending. She can't touch her mouth in any way. If she does, it could really mess up the work that was done. She'll be able to pick up toys, etc. but won't be able to bend her arms at all, which you can imagine will be pretty frustrating for her. She'll be 16 months at that time, old enough to be very mobile and independent (and oral!), yet too young to understand why she's being restrained like that.
We also found out she won't be allowed to suck at all after the surgery. So we need to help her now learn to get her formula and fluids with a sippy or regular cup instead of her bottle.
We also saw the ENT. Same guy who put Sam's tubes in when he was little, and will look at Ben's throat next week. He's "the" guy to have around here. I thought that would be a quick appointment, but it took another almost 2 hours! Cleft lip and palate kids tend to have fluid in their ears due to the structure of everything in there, so ear infections are very common. Her ears were so caked with 13 months of fluid that has dried that they couldn't see her eardrums. We had to go to a procedure room, where we had to pin her down for about 15 months to get them cleaned out. Needless to say, that did not go over well!! You should have seen all the gunk they got out of her ears. The doctor said it was very apparent this is the first time her ears have been cleaned. Once they were clear, we found out she does not currently have an ear infection, but does have fluid in there. So they're going to go ahead and put tubes in at the same time her lip and palate are repaired.
The ENT also wanted her hearing tested, as some hearing loss with a cleft lip/palate can happen, thanks to the fluid muffling the sounds. Our paperwork from China indicated hearing loss on the left side. So on we went to the audiologist... I had done this before with Allie and Sam. She sat on my lap in a soundproof room and they tried to train her to react to sounds so they could gauge her level of hearing. But she just couldn't do it. They said they don't think she's developmentally ready for an evaluation like that. They said typically they start doing that at 6 months of age, but they think she hasn't been talked to enough to necessarily connect sounds with meanings. Oy. So we're going to keep talking to her and working on that, and her hearing will be retested after her surgery. We know she hears some; she responds to her name and to music. But there are times that it seems like she doesn't hear everything. Hopefully once the tubes are in (and her ears stay cleared out!) she'll be hearing much better!
Jeremy met me at the hospital for the first part of the appointment and then left to get back to work. He missed out on all the ear cleaning fun!!
Oh and we also have finished the oh-so-enjoyable job of collecting her stool, so I dropped that off while we were there. I'm SO thankful for our Children's Hospital. It's so close and all the people we needed to see were right there.
*I just got a call from Children's to let me know that her stool is clear (no parasites!) and they had enough blood to do all the blood work except one... so we're going to wait and do that at her 6 month follow up rather than me take her for another blood draw now. Yippee!!
So that's what we know for now. We did tell them that we'd be open to doing her surgery sooner should a date open up, as long as it's after Christmas. Regardless, we'll be washing hands lots and praying she stays healthy for the surgery so it doesn't have to be postponed. Not an easy task with 3 big siblings going to school and bringing germs home, so we'd appreciate prayers and good thoughts for her immune system!
As soon as we got to the hospital, this was the first magazine I saw while we were waiting. Thought it was a funny sign that this is where we're meant to be with the adoption article on the cover.
Hanging out with Daddy on the exam table.
Taking a cat nap while waiting for the ENT.
No comments:
Post a Comment