6 Month Medical Update

I haven't posted much about Jack's medical issues so I figured I'd give an update.  There has been a lot of activity:

• Regular monthly pediatrician visits and shots
• Twice weekly physical therapy through Early Intervention
• Audiologist has administered 4 hearing tests since birth and confirmed he has "moderate" hearing loss in each ear (on a scale of slight-mild-moderate-severe)
• Nephrologist (Kidney Specialist) has seen evidence of an issue with his one kidney: a "reflux" effect where some of the urine output flows back into the kidney therefore increasing chances of reoccurring kidney infections
• Otolaryngologist (Ear/Nose/Throat Specialist) determined he may need surgery to remove tonsils and adenoids (and have ear tubes placed at the same time as he is prone to reoccurring ear infections)
• He had an overnight sleep study done at Boston Children's Hospital last week and we are waiting for the results to see if he has sleep apnea. If he does we are rooting for "obstructive" apnea as that would likely get better with the adenoidectomy, vs. "central" apnea which would be a bigger issue as that would mean his brain is not telling his body to consistently breathe while asleep
• Geneticist has referred us to a Neurosurgeon for an MRI to see if a certain area of his neck is causing spinal compression as we are beginning to see some evidence of possible nerve damage. If so, he will need to have decompression surgery on his spine at the base of his neck
• Appt scheduled with Orthopedic surgeon to examine kyphosis of his spine, bowing of the legs, and to ensure proper hip alignment

I think that's all of it. We have seen a LOT of doctors in 6 months. His pediatrician, geneticist, nephrologist, and physical therapists are through the hospital here in NH but I've asked for referrals for specific doctors (otolaryngologist, audiologist, neurosurgeon, orthopedic surgeon) at Boston Children's Hospital based on recommendations from other parents of little people. It has been quite a juggling act to get the different hospitals and doctors to interact, share info, xrays, films, etc. In certain instances we've also reached out to the skeletal dysplasia experts who work out of Wilmington, DE for second (or third) opinions. Most doctors do not have experience treating little people (and many doctors have differing opinions just to make it MORE confusing) so we've had to make certain judgment calls as parents new to the world of dwarfism on whether or not we think a certain doctor knows what s/he's doing (and unfortunately, in certain cases, they don't seem to). I've had to be "That Person" who demands more in depth information and further testing and referrals to other doctors. But it's just the name of the game I guess. In addition, we've had issues with insurance because once I quit my job Jack and I went onto my husband's insurance which has been a gigantic pain in the ass. In the last 6 months I have had to learn a LOT of new things not just about dwarfism, but about how hospitals operate, interacting with medical staff, tricks to get what you want, how to advocate for yourself, navigating insurance red-tape...you name it.  This is my full time job. Now I'm amused that I contemplated going to back to work after maternity leave.

Jack has been a champ through it all. He really is awesome. Here he is during last week's sleep study:

We STILL cannot get all the adhesive and gunk out of his hair from all the electrodes they put on him so I think we're going to have to chop some of his sweet little locks :-(

The potential surgeries (and even just the MRI) are scary for us because complications with anesthesia are common for little people.  I'm trying not to think about that right now. These days I don't think much beyond the next appointment. If I think too much I might have a hard time moving forward. So instead, we are just plugging along. This is now my reality and my new title is "super-mom" and "advocate". I'm also now "educator" since very few people know anything about dwarfism so I'm working on that.  It's interesting because I'm just learning as I go and trying to spread the knowledge. I honestly don't know what I would do without my LP (little people) groups on facebook.  They have been my lifeline and my guidance in navigating this whole new world.

Eviction date is set!

C-section scheduled for next Friday, April 10th at 7:30am (if I don't go into labor before that!)

During yesterday's appointment we discussed pros and cons of a c-section vs. vaginal birth and of delivering at the hospital we had been intending on vs. a different one in Boston that has a high level NICU.  In the end, we decided that since we cannot know Jack's exact diagnosis until after he is born, it is safer for him if we go with a c-section. Although the doctors think he should have few (if any) major complications upon birth, there are some forms of dwarfism that cannot officially be ruled out yet that could make a vaginal birth too rough for him physically (could result in problems with his spine, broken bones, etc.).  However, if I go into labor on my own before next Friday, my cervix progresses as it should and baby's head becomes fully engaged in my pelvis (this is pretty unlikely due to the size of his head), we will make the call then on whether we'll try for vaginal or just go for the CS. We are leaning towards CS either way though.  (Thank you Lynn for sharing your experiences with me to help set my mind at ease a bit!)

We also made the decision to stick with our original hospital. I feel our MFM team did their due diligence regarding consulting with other doctors more experienced in dwarfism (including the head neonatologist for this hospital who actually used to work at the other hospital in Boston that we had been considering), and the consensus is that based on the current information there should be no need for a high level NICU.  Our hospital has a level II which means they are equipped to deal with almost all major issues since the baby is full term, AND, much of the care can be done right in our suite with us as opposed to a separate NICU area. The only thing they would not be able to accommodate is long-term care beyond the 3-day stay so if that is needed we would need to be transferred. That is okay with me.

I feel better now that decisions have been made. And honestly, I'm glad that I'll be delivering at our intended hospital. I really like there, I know what to expect, I've met so many of the staff already and they are all AWESOME... I just feel better with this plan.

The head neonatalogist has fixed his schedule so that he will actually be there next Friday for Jack's birth (along with approximately 1 million other drs).  They've already warned me that we should expect a "crowd" since this is rather uncommon, but I don't care at this point. I'm glad they are focusing on us and our situation and I have no doubt they will be giving us the best care they can.  

Now we'll just see if I can make it to next Friday!  My OB keeps thinking I'm going to go into labor sooner than that (likely that my water may break due to all the pressure before I even have contractions), as I was measuring at just about 43 weeks as of yesterday. This is getting ridiculous - I look like a cartoon character.  And I feel like every time I stand up the baby is just going to fall out of me.  I also lost my mucous plug over the weekend (TMI?) so that indicates that my cervix is doing something. It doesn't necessarily mean labor is imminent but it does give me one more reason to believe I might not make it another week and a half.  Good news is that Jack keeps passing all his NST and BPP tests!!

Oh! And lastly, this Friday we are meeting with a pediatrician through the same clinic/system where I have been receiving all my prenatal care. He was referred to me by another mom of a child with Achondroplasia who lives in the area and she had only glowing things to say about him. My OB contacted him about my situation and he said he would love to take Jack on as a patient and wanted to meet with us even before the birth!  So Hubs and I will be meeting with him in a couple days. I'm thrilled there is someone right in our same network with experience with Achon!  Jack will need to see all kinds of specialists of course (likely at Boston Children's Hospital), but this pedi would be for well-child visits, shots, and routine stuff, and since this doc already has at least one patient with Achon he will know what kinds of things to look for that need to be elevated, and will understand the differences in expected milestones and growth with Jack vs. an average-height child. I am really relieved about that :-)

Ok, back to baby-watch!