We just got home from our big day in Ann Arbor. We arrived around 9:30 for Noah's CDH multidisiplinary clinic. This new clinic is wonderful and works so smoothly and we saw every specialty involved in Noah's care. I will try and highlight them one at a time..
CARDIOLOGY: Dr G took a good history and a look at Noah and was very happy with where he is. He was please with the ECHO, EKG and saturation test from a few weeks ago. He had no recommendations and does not need to see him again unless there is a problem! Yay!
PHYSICAL THERAPY: We were so excited to see PT Dan again! He worked with Noah in the NICU and used to snuggle him up and rock him when he was upset. Noah took to him right away and surprised us all by doing all of his latest tricks for him. He even let Dan work his legs and muscles. After the assessment Dan told us that Noah is functioning at the level of a 10month old. Although depressing, we aren't surprised. We know he has alot of work yet to do. He agreed that his feet are a mess and orthodics are a must. This will help him tremendously. He is also recommending we start outpatient therapy twice a week. We discussed Noah's anxiety issues and that we had to cut back a bit on in-home therapy because of this. He said being in a new enviroment may help but also wants us to continue with the home therapy as we are doing now. He also pointed out that his abdominal muscles are very weak due to previous surgeries and to try and focus on that as well.
OCCUPATIONAL THERAPY: The therapist was very happy with his fine motor skills and agrees that he does not need any additional therapy in this area. She was quite concerned with his oral feeding habits and hunger cycle and expressed her concerns to the rest of the team for plan that I will elaborate on later.
PULMONARY: Noah had a chest x-ray this week that was looked at today. It was "not one of his better ones" according to them. His left lung was extremely hyperinflated and the right one was not fully expanded. Not hugely uncommon for CDH kiddos but just evidence of his chronic issues. They want Noah to have a PFT (pulmonary function test) in the upcoming months to looks at how his lungs are actually functioning. We will continue his breathing treatments as we have been and they strongly encourage a flu shot which he is getting next week. We are still hoping for for Synagis again this winter but unsure if he will still qualify.
SURGERY: Dr M was not not happy with the ever growing granulation tissue once again on Noah's new site. He is just not sure why Noah heals like this. We were all in agreement that as long as it is not leaking, we are not going to mess with it. It's not worth another trip to the OR to remove it.
DIETARY: I brought a food journal from the last week and we calculated that Noah is only eating about 100cal per day which is only 10% of his daily caloric needs. Therefore he is still getting 90% by tube. We got great tips on how to "beef" up his age appropriate foods with healthy oils and other things to add more protein to his diet.
THE BIG PLAN: So all the specialties got together and had a quick meeting about Noah's eating/feeding routines. Concerns were this: Noah has no hunger cycle and eating for him is not a necessity but more of just something to do. Feeding through the intestines is not natural and can't be relied on long term. We know at some point in order to get him away from tube feeds we will have to start feeding the stomach again to regain the empty and full feeling of normal hunger cycles. Up until now we were dealing with a horrible g-tube site that leaked and his inability to tolerate stomach feeds. Now that we have a working site and not quite sure how long we will have it, as it is looking ugly fast, it's time for some changes. They all agreed that we should start feeding through the g-portion now. We will start backing off on nightly continuous feeds and start giving bolus feeds during the day. We will start each meal by letting him eat what he will take and then when he is done, give him a bolus through the g-tube. Dr M says the minute it starts to leak we will have to stop and go back to the J-portion. They increased his Zantac to ensure the acid levels in his stomach are under control. Noah is finally gaining weight at an acceptable rate and is back up under the 5th percentile. We will have to monitor his weight closely to make sure he is still heading in the right direction. They can't stress enough how important it is for his weight gain to continue. With his other health and development issues, he needs those calories for healing. We are thrilled with the new plan but nervous as well that it won't work. I am so ready to see him move forward though and not be stuck in this rut forever.
We ended the day with our fetal ECHO and ultrasound for Baby Baker. Brian and I both were a nervous wreck for the whole thing. The cardiologist looked at us afterwards and said....(are you ready for this?) "everything looks normal to me". It took us awhile to get our jaws off the floor. We then moved on to the ultrasound and heard the same news. They too said there was no evidence of the hygroma any longer and no other anomalies were detected. The perinatologist was thrilled and said that although it is common for the hygroma to resolve if the chromosomes are normal, it is not so common for there to be nothing else found. Even with a complete resolution of a hygroma there is still only a 50%-80% chance of a good outcome. They want to keep a watchful eye and asked us to come back for another fetal ECHO in 8 weeks and to keep a good watch on the baby's growth in the 3rd trimester, but with the way things look now the don't anticipate a problem. For now, we are celebrating a miracle! This baby has really beat the odds and I can't believe how fortunate we are! When I think about the predicted outcome when this all first began to where we are now, we couldn't have asked for anything better!