I got home yesterday evening after picking up Madelynne from school. On the drive from her school, Dr. Konikoff called to check on Belle and apologize that he missed us Thursday (literally minutes) before we left the hospital. We discussed a couple concerns I have since placing the tube. 1) Reflux and how we are adjusting her meds according to the night feeds and daytime bolus. Sometimes reflux can get better with a continuous feed, and sometimes it gets worse.. Annabelle's seems to have gotten worse but we are able to manage it by adjusting the times in which we give her the medication during the day (morning and evening). I also wanted to touch base about our action plan following Annabelle vomiting all day. What do we do in that scenario? Finally, Dr. Konikoff asked what I wanted to do about a follow-up visit. He is extremely understanding that we do not live locally and tries to avoid travel for our family at every occasssion. Him and I agreed that I will continue working with Johns Hopkins and keep GI as part of her consult team during our search for a diagosis. I will keep Dr. Konikoff in the loop with our findings and let him know if/when we need help with the tube or when we are ready to make a change (Schedule surgery for a G-tube / remove tube feedings all together). Otherwise we will continue to stay in touch on the Eosinophilic Esophaghitis front and I will be in touch for a scope soon when we decide it's necessary.
Tomorrow we have an appointment with Dr. Maples, our Allergy doctor at CHKD. I am less than thrilled to have to make this trip again to Norfolk. Annabelle isn't doing as well as we would hope with the food trials. We have only succeeded to adding Apples successfully into her diet. Sweet Potatoes was an immediate fail and I don't believe white potatoes are going well, but I am pushing forward and remaining hopeful. If I had my choice, I would prefer to avoid the allergy appointment for Annabelle's sake tomorrow, considering things will quickly begin to escalate with Hopkins and Genetics. I am tired of putting Annabelle thru so many tests, painful procedures and on the road to hospitals. She needs to live a little. She needs to play while she has an ounce of energy because before we know it, the hospital and doctors will have their hands on her soon enough and she will be robbed of every ounce of that toddler innocence and playtime. I want her to live. I don't want to take her to CHKD tomorrow for more pricks and tests.. I need to decide what I am going to do.
Last night was my first time placing an NG Tube myself. It was easy, but it was horrifying to put my baby thru. I hated every bit of it.
I let Annabelle enjoy a long warm bath without her tubie as I collected all my supplies in her bedroom. The worst part is wrapping her tightly in a sheet... almost as if you were 'swaddling' her, but really, it's a straight jacket method of hell. As soon as she saw all the tape and tubie in the floor, she immediately held her face and cried "No mama! Noo! No mamama!! NO! No.. no.. no...." AK looked at me with puppy dog eyes and broke my heart even faster. I am SO tired of being the bad guy to this little girl! I am fully educated as to why these things are important, but I absolutely hate it!
Once Annabelle was wrapped in her sheet, I grabbed my sterilized supplies and went to work. It only took a few second of feeling around before the tube slid into place. Once it was almost fully fed to her belly, I noticed a little blood coming from her nose. My heart sank, "Oh baby - mommy is so sorry! I am so sorry!!!" I tried to pull residual from her tummy without luck. I hated not knowing if I was in the right place but I was so anxious to free her from her straight jacket and hold her, that I surrendered checking for placement - I taped everything the best and fastest way I could and unwrapped her.. I reached my arms open to hold her and she swatted at my hands and yelled, "NO! NO MAMA!" and turned to collapse into her daddy's arms and cry.
I tried cleaning my mess. My chin stayed placed on my chest as my eyes blinked as quickly as they could possibly move to keep the tears from falling. I knew the second they would drop, I wouldn't be able to make them stop. I needed to be able to see clearly thru them to continue cleaning and get everything together. I needed not to cry to appear strong in front of Mady. I didn't want AK seeing me cry because after all - I am the one doing this. My heart has never felt so much pain. A small child should never have to live life the way Annabelle is fighting to live. She deserves a fair chance in this world. She deserves one day in which isn't flooded with pain.
It's time we get answers for this sweet little baby.
Annabelle asked for her pillow and a book. It was a good distraction and Mady was happy to pick out a couple books to read to her sissy. As she laid her head down, resting her face on her shoulder to hide the tubie from anyone, I grabbed the end of the tube to drape behind her pillow/chair. I wanted to check a few more ways for placement while she was distracted. Before I could do anything, she started coughing and sneezed - blood. Absolutely everywhere! Her poor little face and mouth was covered in mucus and blood from inserting the tube. I hear this is a common issue from their sinuses becoming so raw and irritated, but it still doesn't make seeing it any better at all. I wasn't prepared to see that much blood and visibly recognize just how uncomfortable she truly was. Fortunately, AK didn't react at all and said, "Well hun, what do you expect? Im not surprised at all to see that, you know it's uncomfortable and everything is irritated inside her little nose!". At least he had the responsible approach, I on the other hand was on the cusp of saying, "I surrender! Pull the damn tube and stop all this!"
Once the mess was cleaned, I attempted to pull some residual again, no luck. I then slowly flushed 2.5ml of water thru the tube and she didn't choke. As soon as I finished flushing the tube, I pulled back and immediately was able to pull some old formula and 'dinner'. That was the BIGGEST blessing and good news to see. I was so grateful (and also quite proud of myself). Mady and Annabelle both were so sleepy. It was well past their bedtime (8pm!) and we were already running late starting Annabelle's nighttime feed. I don't like to hook her up until she's already asleep, that way she can roll around and get comfortable as much as she wants without getting tangled in tubes.
After everything was cleaned and girls were in bed, I went downstairs and washed my hands.. and washed my hands. I stood there with the deepest frown on my face and my mind in a million places, or maybe in only one place?, I have no idea how long I stood there. I remember blinking and finally realizing that the water was far too hot to continue washing my hands and my skin was becoming raw from how hard I was scrubbing. I was so angry. I was so sad and frustrated last night. The bitterness and worry is intensifying in our home so thick you can cut it with a knife! This isn't even our family anymore. This isn't our 'home' that we celebrate holidays or milestones in. This isn't our family vehicle we run to the grocery store and birthday parties. This isn't mommy and daddy that only lay in the floor and have tickle fights with the kids and then watch movies after they're in bed. This is someone else's life we are stuck living.. things like this don't happen to boring, normal families like ours. I want my life back. I want to return to the days where I complained about gas prices and cars that don't do the speed limit. I want to go back to the days where I took for granted I had healthy children. The phrase, "I don't care if it's a boy or girl, as long as it's healthy" has never rang so loudly. Until I walked in these shoes, and the unknown fears for my daughter, both my daughters and my family - I would have never appreciated the humble gratefulness of everything we DO have. I have always known how blessed we are for our children when others aren't as fortunate, but I've never looked at into the harsh eyes until now. It's horrifying. Nothing in this world has ever been so scary as the unknown and fears of a parent of a sick child. The constant sickening feeling in your stomach, never ever goes away. The silence of your house when there are 2034628610 things that needs to be discussed between the adults, but not one word is spoken, sometimes for days because saying the words out loud is harder than processing them in your heads separately. Our family is living a hell. We ARE grateful, every single day for everything we still have in our family. We are grateful for the lights that remain on, the family and friends that FLOOD us with love and prayers to keep our heads up, we are grateful for today and for having one another. But we are scared to death for every single tomorrow.
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