Friday, March 26, 2010

Medical Appointment Marathon

This week we had a 2 day marathon of doctor’s appointments. Here are the details:

Day 1:
Early AM: Craniofacial Team
- We met with plastic surgeons 1st thing in the morning. They checked Isabella’s palate and discussed what happens when children have a cleft palate with regards to how the facial bone develops and this being the reason why they need children to be a little bit bigger before corrective surgery can be done. We discussed possible dates for the palate repair surgery (end of November or Mid December) and then scheduled a pre op meeting with the CFT team sometime in August. At this appointment they will go into more detail about how the surgery process goes as well as recovery process and procedures. They also found out that my daughter has a “Ankyloglossia” or in layman’s terms a “tongue-tie” which is a congenital anomaly characterised by an abnormally short lingual frenulum and thus would need to have her frenulum cut so the tongue can extend out.

Mid AM: EENT/Audiology/Speech
- A Myringotomy is scheduled for my daughter at the end of April. This is a surgery wherein the doctors will be putting tubes in her ears to drain the fluid. This was also recoemmended as a preventative measure because since she has a cleft palate, she is susceptible to ear infections. The frenulum-cut will also be done at this same time, as well as the sedated ABR (hearing test) so they can gauge how much hearing loss she has.
- Speech therapist discussed ways to help stimulate speech and language development. We discussed with her the implications of being raised in a bilingual household and the speech therapist says that it is good to continue exposing her in both languages as research shows that it helps the language neurons in the brain become more branched out. She recommends that a comprehensive speech and language evaluation be done as early as 15 months of age.

Early PM: GI Doctor/ Nutritionist
- We were referred to the GI doctor because there have been concerns with acid reflux and vomiting feeds. This has already affected the rate of Isabella’s weight gain (in a span of a month she only gained 4oz) and so we needed more ideas to help Isabella keep her food down other than the tricks that we have already tried with her. The doctor recommends Zantac to help neutralize the acid to prevent esophageal burn when reflux occurs. They also recommended that she take in a small dose of erythromycin to help the food pass onto the intestine much quicker and of course, if there is less food in the stomach, less of it will be thrown back up. They also recommended that we mix in some rice cereal with her formula to make it a little bit thicker so it settles better in the stomach. However, all these recommendations does not necessarily solve the reflux/vomiting issues but they did say that it is hoped that when she turns about 6 months old the reflux has resolved itself. We also discussed the NG tube. They’re saying that the goal is to have Isabella take in all her feeds orally (yes, even with the cleft). If she does not then we might need to consider G tube feeding. It almost felt like it seems urgent that we take her off NG tube and do the G tube feeding because they proceeded on explaining how the G tube surgery procedure goes. However, both my husband and I feel that we may not go to that route yet since there will be adjustments made with regards to her feeding and we feel that Isabella does want to feed by mouth but because there are “mechanical issues” going on she is having some struggles. At present she takes in about 40% of her feeds orally and the 60% via NG tube. We hope that with the frenulum cut, she will get better at feeding by bottle. We told them that we will discuss that option further, should we decide to take it, when we see each other again towards the end of May. But, it did sound enticing because with the G tube we no longer need to see her with a plaster on her face to hold the tube in place as well as walk around with her having to carry a dangling tube around. They also ordered us a “kangaroo pump” to help us with the night time feedings so that she does not throw them up. They said the gradual feeding via kangaroo pump will help address the vomiting when we feed her at night (this also will help us sleep longer at night time =D). But they said to keep on trying to encourage her to feed orally during the daytime and offering her a pacifier when she takes in the rest of her feeds via NG tube so that the sucking-feed connection is restored as well as to continue with and help develop her oral muscles.

Late PM: Renal Doctor
- We discussed what Stage 3 Kidney Reflux is with out renal doctor. Then they said that we needed to see a urologist also so a consult with a Urology was sent out (another Doctor added to our already long list). They reviewed her labs in the course of 6 weeks and the lab results revealed that her creatinine levels were normal and it looks like her nephrons (kidney cells), even if there are just a few of them (because she has small kidneys) seem to be performing their job so they are suggesting that we take her off the sodium bicarbonate medication and run another set of labs two weeks after to see how her body does without them. Edgar and I are both hesitant to take her off the bicarbonate but we know that our doctor’s are doing things for Isabella’s best interest. They suggested to continue giving her the antibiotics to prevent infection caused by the kidney reflux unless the urologist suggest other things. The renal doctors also said that it seems like they would not need to see Isabella frequently and that a follow up appointment is not until 6 months. (so that’s a doctor semi-off of our long list.. yey!)

Day 2:
AM: Immunology
- We met with Immunologist and we discussed Isabella’s health history with her. She also asked us questions pertaining to my husband’s and mine’s family health history. She then says that with WHS children, about 25% of them will have immune system issues and she thinks that if Isabella does have one she would have been frequently sick (having infections) already, but she hasn’t (THANK GOD!). She also added that Isabella might also still have some of my antibodies that she got from me when she was still in my belly and from the breast milk that she got. So if the doctor was going to run a test it will not show accurate results. But she decided to order blood work anyways so that she can have a baseline to compare it to when we get to see her again when Isabella is about 14 months old. The good thing was that she kept stressing that she does not think that Isabella has immune problems... which was really good, because I do not wish to add anything more to her already long list of complications.

PM: Opthalmology
- I was not quite sure how they were going to test for vision for an infant whose only 3 ½ months old. But we went anyways, doctor’s orders. The doctor asked us questions like “Does she have eye contact?”, and ‘Does she visually track?”.. our response for both questions were ‘She can if you can lock her attention in.” The doctor then says that he thinks Isabella’s visual issues are due to the fact that she has partial agenesis of corpus callosum and perhaps that in the process of when the two brain halves are trying to connect she has problems with focusing on one thing (thus the issues with visual tracking and eye contact). However, the doctor did say that through time, the brain does find means to connect and her eye contact and visual tracking skills will get better. Isabella’s eyes were also dilated for this appointment and when the doctor checked what’s inside of her eye he added that Isabella is far sighted. I asked how he knows this and he says that it shows in the way the light reflects in her retina. (So that was very interesting) He added that most babies are far sighted but we need to keep a close watch and if her far vision issues continue over time or if her vision issues do not get better, then she might need glasses even before she turns one. A follow up was scheduled for the end of July.
- When we got home that day we tried visually stimulating her from a distance. We were able to successfully elicit more instances of eye contact and social smiles and visual tracking of objects. So I guess that kinda solves why she was not looking at us or an object even when we are right there close to her face… no wonder, what she probably sees is a big shadowy blob. It was good to know that she is far sighted so we can do our visual stimulating from an appropriate distance.


Kristy said...

Whew - lots of appointments. I totally understand how hard it is to feed a baby with a cleft palate. Sometimes it would take and hour just to get a few oz. in Dylan (we never had the luxury of an NG tube, it felt like all I did all day was feed him), it was very difficult but eventually he got it and now that his palate is repaired he is eating like a champ. Hang in there. :)

Hannah said...

Just thought I would be you a bit of info on our experience with a few of these appts. With vision, Riley did not make eye contact or track anything for a long time, I think she was about 6 months before she did it consistently. Her vision is fine, but it takes longer for our babies to get these things, but THEY DO!! Which is the exciting part. Give Isabella time, it will come. As far as feeding, let me know if you have any questions. Riley got a g-tube 2 months ago. We have the kangaroo pump and love it. It is very easy to use and has eliminating nighttime vomiting. We are still dealing with it during the day though. I agree that giving Isabella more time and waiting until some of these other issues are cleared up, may help with oral feedings. Since the g-tube, Riley is rejecting more and more orally so the more you can do orally, the better in the long run.
You are doing an amazing job. The appointments are overwhelming but they are all checks in the boxes and things will get easier. Keep your head held high. Isabella is a little angel and so fortunate to have you.

Lauren said...

Wow! What a busy few days! I will say that the beginning is always the hardest with appointments and running around to so many doctors and you wonder if it will ever slow down but rest assured - it does! Keep trucking! You guys are doing great.

Also - wanted to suggest that we use PROBIOTICS with Norrah to help her digest quicker and get her stomach motility up. You mentioned erithromyicin. I know we have had tons of success (as in hardly any barfing unless choking on unchewed food or a few other random instances) since we began the probiotics.

So - that is something to consider too. I want to write a post about the probiotics because they really have changed our life in reference to Norrah throwing up. BUT - havent had the chance to get it written quite yet.

Love to you and Isay!

isdadoinks said...

Hannah, Anna and Lauren,

thank you for all your good mommy ideas and encouragement. It has been really busy and i can hardly keep up with all the doctors' names. I have a binder of stuff specifically for her and i take notes at the end of each appointment so i do not forget anything. I trust that things will slow down a bit in the future.. for now, even if it feels overwhelming and super busy, i actually feel like i'm doing something.


Kisses4Kaylee said...

Wow, that IS a lot of doctors appointments in such a short span of time. I am glad that you did hear some reassuring news, and as many of the moms who have had experience with feeding tubes and such have said, it will all work out fine. Kaylee is also tongue-tied. However, no one told me that she needed to get it fixed; I am thinking that I need to take her to a doctor for a second opinion on that. I wish you and Isay lots of luck and I send you both my love. xo