It's somewhat comical in retrospect for me to have thought this way...but in my naive little brain I thought once we left the NICU we'd be done with medical challenges. I was wrong. I'm learning...and tired.
This week was full of doctor's appointments. The first appointment was a swallow study to evaluate Madelynn while she is eating. They basically hold her in a carseat, give her milk using different consistencies and nipples, and have an imaging machine that shows the liquid as she swallows down the esophagus.
She seemed to do ok with the level one nipple (the one we had use at home), however she took a really long time to eat (feedings at home were taking up to an hour per feed). They decided to use a level two nipple and she ate much faster, however she began aspirating. They also noted with both levels, she had an uncoordinated pattern of suck, swallow, breathe. To accommodate this, they tried thickening the milk. Once they thickened it, she did fantastic with the level two with no aspirating...success. So since then we have been doing exactly that and feedings are going much faster and much less crying.
The second appointment was with a GI specialist. I'm secretly in love with this doctor...everything she did from mannerisms to explanations to patient interaction was fantastic. Anyway, she evaluated Madi and explained that she has what is called the preemie trifecta. She has poor muscle tone in her swallow, reflux, and poor coordination...as well as colic. She encouraged me and kept asking if I was ok...I'm sure she could see the exhaustion in my face. She recommended smaller feeds and more often (every two hours instead of every three). As I accepted that fate, I took a deep breath and reminded myself I can handle whatever comes our way...as long as my girl gets better.
Appointment three was the next day with the developmental pediatrician. We are required to go to these appointments at least until age two as that is the typical "catch up" time for preemies. After the first two appointments, I was mentally prepared for bad news. My regular pediatrician had even warned me not to get too upset, that they would probably give me a percentage of how she compares to babies with no issues. So I was prepared. I think God knew I couldn't handle much more, but I was prepared. The doctor put Madi on a table and started doing various exercises with her...does she follow my voice...does she follow it with her head horizontally and vertically...does this reflex make sense...does she get in a specific position when placed on her tummy, does she push off with her legs when the stands, focus on faces...etc etc. I am incredibly relieved and overwhelmingly happy to report that she passed every. single. test. EVERY SINGLE ONE. They said at this point she is not developmentally delayed for her adjusted age...so we just follow up in a couple of months. THANKFULLY something went right.
It's amazing how even though all of these things are somewhat out of my control how draining it can be and how much it makes me feel like I failed in a way. But the developmental appointment gave me a breath of fresh air and gives me hope that I can handle this. We just have to get past the few other things...and with all of the recommendations from the various doctors Madi has been having a great end to her week.
(Raise your hand if you are feeling better!)
Oh...also, she turned 3 months on the 16th. In all of the crazy I forgot to take pictures until this morning...but I did finally. This past month has been difficult with not much going on besides crying, refusing to eat, and being held. But two days ago, my girl started semi smiling, and responding with sweet baby sounds (other than grunts!) when I talk to her...hoping we continue down a happy, healthy road.
