Touring the children's hospital one specialist at a time
Updated: Oct 21, 2018
Aiden had his 76th appointment last week. He also turned a mere 9 months old. For point of reference, Dylan had had 7 doctors appointments by 9 months of age. It's been a crazy journey for us to say the least. But what in parenthood isn’t?
I knew something wasn't right with my baby his first night of life. He made these noises that sounded painful on every exhale and I kept saying something was wrong. Each new nurse would come in, seem slightly alarmed, take him back for monitoring and then bring him back to me a little while later saying his stats were ok. The hospital pediatrician did a chest X-ray his second day of life and when that came back clear deemed his issues a "delayed transition" from being a c-section. It never sat right with me. But I so desperately wanted to believe that's all it was. Fast forward to his one month well visit. "I don't want to scare you, but I think you need to go straight to the ER'. Cue me going into survival mode. And I don't think I've left it since.
Last week I compiled papers and letters to fax over to my insurance company to appeal their denial of treatment Aiden’s pulmonologist wants him to get. As I got all the information together, I starred at the list:
Gastroesophageal reflux disease, esophagitis presence not specified
Hemangioma of face
Failure to thrive
Short stature disorder
With the possibly of Bronchomalacia and genetic testing that is still pending. My eyes took it all in while my heart stung a bit. Something about seeing it all put on one page, neatly compiled in a description of Aiden as if my sweet boy was toy I was reading about on amazon, each bullet a different feature, caused a lump in my throat. But then back into survival mode I went.
The peaceful warrior‘s list of doctor's include his pediatrician, Pulmonologist, Otolaryngologist, Gastroenterologist, Neurologist, Geneticist, Dermatologist, Immunologist, Endocrinologist, Physical Therapist and a partridge in a pear tree. He also has a team of early intervention services of an OT and PT.
With Dylan I thought I was tired. Hahahahaha. Part of survival mode entails feeding every 2-3 hours at best. There was one month where it was every 2 hours due to lack of weight gain. I'm not even sure how I got through that month with the boy who refuses bottles. Aiden actually slept the best as a newborn, those first 6 weeks of life. I miss newborn sleep! After the month of waking to feed every 2 hours, Aiden continued to want this. His "failure to thrive" caused me to jump at any opportunity to get more calories in him. This coupled with his sleep apnea had and has me up all. night. long. Even when he's asleep, sometimes I find myself getting up to check on his breathing. At 9 months we are just starting to get back into those precious three hour chunks... well when he isn't cutting a tooth. Or having an ear infection. Or be awoken by his brother’s night terrors. Or nursing all night long due to distracted nursing sessions during the day. Well once in a while we get 3 hours chucks. Progress.
I'd be lying if I told you that everything is fine and I've been my best self these past 9 months. There have been times I have been snappy, grouchy, on edge and not someone you'd want to be around. Times when I worry I’m not giving enough to Dylan. Times when I wish I could be a better mom. Times when I know I should be doing more of the PT exercises with Aiden. Times when I’m so depressed I still havent lost all the baby weight, something I definitely had with Dylan by now. Times when I wish I could be a better wife, friend, you name it. Times where I start to feel exhaustion to its fullest but then survival mode turns up a notch.
Right now it feels there is a fine line between having incredibly thorough doctors and a team of doctors looking to add to his list of diagnoses. Being sent to specialist after specialist can at times be overwhelming, not to mention has me second guessing everything. It feels like every time I turn around there is something that has elicited enough concern for a doctor to want another set of eyes to evaluate my boy. Perhaps that’s why I worry about every little thing. I’ve learned with some health ailments doctors don’t even have the answers. And to not trust google. In the beginning a quick google search taught me Tracheomalacia was outgrown within 2 years. After further investigation and discussions with medical professionals I learned that is not always the case. Huge misconception in the airway malacia community. It’s actually so rare that it’s Aiden’s pediatrician’s first case. With all the trips to the children's hospital though, I must say I always leave feeling grateful Grateful my boy isn't that sick. Grateful for the ailments he has not being too severe. Grateful they don't impact his personality. Grateful because he is perfect just the way he is.
Hopefully survival mode will turn off soon. But maybe that’s just what parenthood is. Surviving. Getting through obstacles one breath at a time. Airway defects and all.
All things considered, Aiden is doing AMAZING! He has come so far in 9 months. Though he be but little (is the size of your average 5 month old), he is fierce. Thriving despite obstacles. He is SO HAPPY and just the sweetest of boys! He has brought so much love into our lives. He has taught me so much. I can’t imagine life without him. Aiden William Ziggy Seltzer, you will forever be my hero.