Home Again

We came home from the hospital (again) on December 7. My friends organized a fabulous 12th birthday party for Leah.  My parents eventually had to leave.  The kids went to school. Chris went to work. We had cinnamon toast for breakfast, lunch, and dinner on more occasions than is necessary to admit.  Lexie realized she was shafted as littlest and compensated by being the loudest and trying to be the neediest.

Hannah has been on a feeding tube continuously (24 hours a day), and my job is to keep her alive and make sure she gains weight. We came home from the hospital (for the 3rd time since birth) on a Thursday, and the following Monday she had lost weight.  The regular pediatrician said he wasn't concerned, but was confident she would gain weight. But I was concerned, and so was the surgeon. So I guess that is strike 2 for the pediatrician? So my next task was to get her more calories (and find a new pediatrician).  I talked to a nutrition clinic over the phone on how I could increase her calories, whether by adding more formula to the breastmilk (usually formula is mixed with water), or by increasing the volume she receives per hour.

My baby has baggage already.

We did a lot of weight checks this week. This is the most unusual newborn experience: Hannah doesn't wake up hungry in the middle of the night.  She sleeps the whole night through, and I wake up to an electronic beep indicating that her feeding bag is empty. At some point, she will have to learn hungry vs. full because 24 hour feed is not realistic.

Its easier to stay home than try to go anywhere. I've been thinking of this week as a "holding pattern" while we wait for the next steps. At first I was hopeful that we'd have the feeding tube for 2 weeks while we give the botox more time to be fully effective, and then we'd have a great swallow study and she would be able to bottle feed with a slow-flow nipple to make sure she wouldn't aspirate. I was hoping and expecting things to somehow be "normal" with that timeline, but when home healthcare called to close out our case I told them please not to, because we aren't sure what will happen next week, and this girl still needs to grow.

I have appointments next Monday for a swallow study, and next Wednesday to follow up with Dr. Schramm.  There was some confusion about which doctor should do the swallow study-we have an Occupational Therapist we've been working with at UVH, but a SLP clinic at American Fork hospital called me to set up the study. I was very confused about which one I was supposed to do, as it seemed they both wanted to do the study slightly differently. I had the surgeon call them both and sort it out for me. I also have to decide which pediatrician to stick with as Hannah's primary care doctor here in Provo.

Meanwhile, I'm gathering information and finding resources in every way that I can.  I found a FB group for people with babies that have Cricopharyngeal Achalasia, and there are about 17 of us.  It sounds like most babies are not diagnosed until they are 6-12 months old. They start out getting treated for reflux (where we started, too), then the babies spend months failing to thrive and getting aspiration pneumonia repeatedly. By the time they find the problem, the babies are sick and have developed an aversion to FOOD!  I'm so glad we have been ahead of the game in getting this diagnosed so early-6 days old rather than 6 months.

I joined a regular Achalasia group (general swallowing disorders), and its nice to have people who have the same vocabulary about swallowing and understand the challenges we are experiencing. But for the most part, their achalasia is a disease and it is acquired, and the surgeries are different (lower esophageal sphincter, rather than upper), whereas Hannah's is congenital and will likely be all better once she can have the surgery.  The new friends I've made online were quick to suggest surgeons all over the world and tell me that I need a team to manage this condition. I agree that I need a team. In addition to ENT that we already have on board, it looks like we will have at least Occupational Therapy (OT), Speech Language Pathology (SLP), Nutrition, and Gastroenterology (GI) to consult with. But I am hesitant to buy into their claims that "Dr. So-in-so in Timbuktu is the ONLY one who can treat this!" and "You MUST go to Amsterdam and see Dr. Amazing!"  I am collecting a list of surgeons, but I can't see that it is necessary or realistic to cross the country to meet with a specialist. Even the specialists in Boston or at Stanford have only seen this particular disorder a handful of times.  All the research I have found about CA specifically (and not all the other achalasia problems) is done retroactively and has 5-12 cases in it.

No shortage of cuddles around here!

And friends.  My friends have been incredible resources for me. My BFF is married to a surgeon, so I call the Swensons regularly to get their input and moral support, as well as get a realistic down-to-earth medical opinion from someone I trust and doesn't charge a copay (Thanks you guys!)  Plus, its 2 hours earlier in Alaska, and I can call them at midnight and its only 10pm for them! And Jenn Petersen, whose son Zeke has was born with a heart defect, has been my "mentor" as I learn to navigate the hospital world and parent a critically needy child.  She told me something very valuable: There is not ONE doctor who is going to know everything about my child, her history, or her medical condition. I am the expert on Hannah, and I am the one who is going to know everything there is to know about her. I'm so glad she told me this. I have already learned so much, and often find myself telling doctors what I've learned from the other doctors. My mom also encouraged me to have a notebook that has all her information in it since birth.  All her weight checks, every change to her feeding regimen, all the questions to ask each specialist, followed by the answers, every phone call, etc. Its kind of like downloading all the information from my brain so I don't have to rely on my memory exclusively. (This tired momma is forgetful!)