Hey all!  It’s been awhile since we had an update!  It’s been a busy couple months and it’s a crazy world right now so...

The last time I updated, Adrielle had a dilation of her esophagus and then an ENT consult.  Things were going great (things still are, don’t worry)!  

At that time, she was doing only bottle feeds and having about 8 ounces with each bottle because she is a rockstar!  Also, We were going to sign language classes with her awesome Early Interventionist to help us stay on top of things because sign language can’t ever hurt and we aren’t exactly sure the full extent of the vocal cord dysfunction or what that could mean for our future.  Unfortunately, we haven’t attended class in a couple weeks because I was afraid she was sick and then now there is a panic out there on our doorstep so...no thanks!  🙅🏻‍♀️. She needs a way to communicate with us so we are preparing for the worst but hoping for the best!

At the end of January, Adrielle had an esophagram to view the functionality of her esophagus which was great!  It was then determined that we would hold off on dilations for a bit which was huge because we had always done them every 3 to 4 weeks!  This was also exciting because it would allow her vocal cords to rest and allow for more healing so we were over the moon!  😆

In the mean time, she continued getting her synagis (RSV) injections and doing all those things that babies do hahaha!  Had her 6 month checkup and was given the okay to stop taking the iron supplement because her blood work is perfect!  Also, throw in that flu shot because we are at that 6 month range and that’s always important!  💪🏽. 

It was around that time that I started to notice things.  I had noticed that she was spitting up a little more (but babies spit up), she was coughing more (but babies have more saliva when they’re teething and it’s cold season so maybe it was just a little extra congestion), then she wasn’t eating as much (but we aren’t always hungry and babies appetites fluctuate, right?). Then...we were spitting up mid-bottle, coughing quite a bit after eating, and projectile spit ups right after or a couple hours after meals to the point that I was using a receiving blanket as a burp rag.  We went to lower volumes with bottles, tried pedialyte since I thought she was sick (that went better), and dropped down in nipple sizes to slow her down.  

I had messaged doctors with concerns and they were able to get us in quickly but while waiting for that appointment I brought her in to urgent care (unfortunately, especially with all the crud going on right now- thank goodness there is a children’s urgent care).  She was using extra muscles to breath and really working for it but by the time the doctor saw us everything had resolved.  Got a subtle lecture, I was instructed to only bring her in to the doctor when needed, like if she has a fever or a hard time breathing, etc.  The doctor said it in a nice way BUT she was struggling- her muscles were retracting.  Her lovely daycare lady knew something wasn’t right and I could see something wasn’t right, so yes, it was necessary to bring her.  It was like PTSD kicking in from when she had the failed extubation in the NICU.  I was so thankful that we are living where we do because of the options that we have when things like this happen.

This week, we were able to get in for another esophagram.  It “looks” okay so we were all a little perplexed.  Something isn’t okay so we were sent to meet with the Feeding Team (I want to compare them to the Avengers because they are a fierce group of ladies on top of their stuff).  They consist of psychology, dietician, and speech pathology and they were so thorough in assessment and education that we had some answers which was reassuring!  The narrowing hasn’t changed much and things are passing through but the narrowing may be harder and not as soft as it was previously so Adrielle has been trying to tell us that it is not working for her.  The narrowing is so close to her vocal folds that this can cause a lot of the issues that we are seeing right now.  We developed a plan which has involved returning to partially using the g-tube and thankfully we have that option, small volume feeds with preemie nipples (and an intermission during the feeds? 😂), and no more solid foods for right now.  The goal is to just make sure we decrease the problems she is having in the mean time and just have her eat a little to keep eating enjoyable so she doesn’t just stop taking stuff by mouth altogether.  (AGAIN- loving the g-tube option).  They recommended getting her in for another dilation which is already scheduled.  The Team said each kid is so different- some will only ever need one dilation and some kids will need a dilation every couple months.  We seem so be the latter.  On a positive note, my girl made it almost 12 weeks without a dilation!  

So, there is our life in a coconut right now!  Not going to lie, I’m absolutely terrified to go to work because of what is happening right now.  Not just because of the pandemic because as a healthcare professional, Lord knows what we are bringing home on our clothes, shoes, bodies, but that is ALL the time and not just now.  Then, I worry about quarantine and exposure- we are basically quarantined during the week anyway due to my work schedule but still.  It scares me that healthcare professionals are risking so much and our society doesn’t follow recommendations and they feel so invincible...their actions put us all at risk.  Please be smart and safe everyone!  I think at the end of the day, we all just want to go home to our loved ones.  Stay home if you can, hug your loved ones (or maybe air hug them from a safe 6 feet away?), wash your hands, and BREATHE!  Do all of these things because I want to keep coming home to my baby and for the love of God please be kind to each other.