(Myla June, Week 1...so advanced)
I don't know that I have ever yearned for the sense of normalcy that the school year brings. The countdown typically begins late July, but this year things are much different. I was at work for the past three days. I was greeted by supportive colleagues with their well-wishes and prayers for Myla (every time I hear this, I am grateful. It means a lot to me). I was able to utilize the skills that I have been trained to utilize. Though each time I left in the morning, I felt an overwhelming sense of guilt. I know that I need to play the role of the "breadwinner" while my Wonderwoman-like wife (yes, I do believe that Lindsey has superpowers), takes such amazing care of our little girl for the next 4 months. The hope is that Lindsey can return to work by January or so when things will stabilize to the point where we have a good routine, the doctors appointments do not come in chunks, and Myla "grows out" of her debilitating reflux (if thats what this cough really is). I go back and forth. Today I am thinking that the cough is reflux-related and that retching/gagging that occurs is exacerbated by her NG-tube (the NG tube is place in such as way that unfortunately, it keeps the passage way from the stomach to the esophagus open, allowing stomach acid/contents to travel more freely up and out. With Myla's reflux, it doesn't always come out, but irritates her throat, hence the cough . Her vomiting episode today was pretty typical reflux, sad whimpers, two tiny coughs, then part of her last feeding came up. I cleaned her up, changed her, and she was a happy, yet tired baby again.
We did get some frustrating news yesterday from our cardiologist. Just when Lindsey and I were beginning to come to terms with the idea of open heart surgery, our cardiologist consulted with a CHOP cardiologist who did not believe her symptoms were due to heart failure (which confused me because we have been told multiple times that she has signs of heart failure (frequent sweating, wet lungs, enlarged heart, enlarged lungs, poor growth), therefore, surgery would be unlikely. The CHOP cardiologist was going to bring the case up at the CHOP cardiologist conference in two weeks.
Even more frustrating then that was the idea that Myla's symptoms, mainly her cough and the loss of her suck when it comes to feeding may be related to a neurological problem....cue appointment with another specialist...so the tally is Pediatrician, Gastroenterologist, Cardiologist, ENT, Pulmonologist, Chiropractor, and now Neurologist. She is three months old. Anyway, a simple google search would tell that a typical baby loses his/her suck reflex at around 3-4 months of age. At this point, the suck become voluntary. Myla, being a tube-fed baby, has appropriately lost her suck reflex, but has failed to voluntarily suck, most likely because she doesn't have to...she eats from through a tube...
Anyway, school starts officially next Thursday. I will once again make my coffee the night before, be in bed by 10pm, and make some money for my family. This means more now than it ever did. I am hoping that the guilt I feel when I start my car in the morning will fade as Lindsey develops a routine with the baby and the appointments eventually wain.
I am brought back to a feeling from my childhood. I can hear the garage door in my childhood home rising at around 6pm indicating that my father was home. I remember jumping to my feet and running to him as he put down his briefcase. I remember the overwhelming feeling of excitement. I look forward to time when Myla runs to me and greets me as I did with my father.
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