The day I prayed wouldn't come

I woke up this morning to quite the energetic annoying little girl running around the house loudly with her sister and daddy. I blinked over and over and tried to go back to sleep so I wouldn't have to go thru the day.. I was unsuccessful. The girls had other plans for me and I wanted to squeeze mady every second I could until she went to school. 

Annabelle and I played around the house all morning. We made the biggest messes, I didn't care what she did.. I didn't clean up behind myself. I tried to pack a bag and got distracted at my first opportunity. I needed to shower and went into autopilot.. I tried again to pack a bag and found myself online shopping for Belles birthday dress. I needed to do something with the towel and wet hair on my head but I decided to play dress up in the playroom instead.

All morning I avoided preparing for our trip to Norfolk. All morning I was angry beyond belief at how much I did not want this! Annabelle didn't help my guilt, she wouldn't let go of me. She constantly ran behind me for a bear hug, she clung to my leg, she surprised me with kisses and made me laugh every chance she could. Maybe she was trying to make me feel better? I just felt terrible for what was about to happen to her and she didn't have a clue..

We got on the road shortly after 11am, well early but I didn't know what else to do with our day. I was tired of packing, I was tired of the songs on the radio.. The lingering thoughts and fears.. I was upset just walking thru my home knowing when we return, life will be so much different from the way it is now. I needed to get out of the house and we needed to get the day over with.

Hopkins called while I was on the road. My heart stopped the moment I saw the MD phone number. Unfortunately it wasn't great news that he called to share.. There wasn't any news he had to share! The geneticist was sorry to report the labs were unable to be completed because Annabelle hadnt been fasting beforehand. They knew that! Why did they let us continue to do the tests?! I was quite disappointed however he was hopefully we would get a clinic visit soon to repeat the labs after fasting. Better than the tests they ran in the ER, hopefully during the clinic visit and consult, we will determine some more specific routes of exploration and be able to test specifically for diseases we feel as though are more likely than just the general ones. Well see. I have the number to schedule the follow-up in clinic, I just wasn't able to do it today. I will make that appointment as soon as they open tomorrow and hopefully we will have luck to get in next week :/ wishful thinking.

When we arrived at CHKD, we were more than eager to get out the car!! I was a little early so we ran to the cafe for something to eat despite zero appetite. I took a few bites of a salad and surrendered. 

Belle was amazing all morning, she was perfect in the hospital getting to our consult and played while I talked with Dr. Konikoff. Unfortunately Annabelle's lost a pound since last Wednesday.. I'm not shocked. He wanted to discuss why we were doing the tube and explain why this is so necessary, I listened patiently and kept my questions to a minimum. I was secretly praying for the least amount of tube feeding requirements as possible. My fingers were crossed for bolus or gravity feeds as needed. Dr. Konikoff brought me back to reality and demanded Annabelle needs continuous pump feedings. Oh lord, are you serious?! Are you sure?! We negotiated quite a bit and determined a game plan, a very preliminary compromise: continuous 10hr feeds every night, bolus all day with what she does not take orally. The hardest part of our planning is knowing how much Annabelle needs to thrive. Her days are so variable by what she eats, it can be anywhere from 8 to 30oz x day! That may or may not include any liquids at all beside formula. I don't know what normal even looks like, I've never had a kid solely dependent on formula therefore I don't know what her little body even needs. Hopefully we can determine those numbers this week while we're here. Dr. Konikoff's goal is to let us go home by the weekend... Prayers he's wrong and were home much sooner than that! We already miss our own bed! 

After our consult and etching out a game plan (and pleading to scratch this whole idea and just go home...) we met with another physician that was intrigued by Annabelle's story and he wanted to collect some info to run her case by the GI study team while we're here. When him and I were finished talking, we moved downstairs to admitting and began the paperwork to be admitted into the hospital. Our room was waiting on us thank goodness, we just needed to sign the paperwork. 

Annabelle enjoyed this process a bit too much and was spoiled rotten by the staff who wouldn't stop loving and stealing her from behind the counter!

She sold her cuteness well.. But she was so tired. I on the other hand was irritated. It was nearly 4p and the tube wasn't even placed. This is the longest day in history of shitty days and I hated every single minute of the entire thing. 

The nursing staff on the pediatrics floor is top notch. They are all mommies my age and love Annabelle to death. They immediately brought her a wagon and took her for rides, first question we were asked was if she can have furry visitors from all the doggies on the floor :) while I answered questions and handled paperwork with one nurse, the others played with Belle. Soon after we were checked in, her medication to sedate her out was available. I changed her into her Jammie's of choice and snuggled Lambie in my arms with her while they gave her the meds. It took about 10m until it kicked in.. And when it did, Lordy have mercy she was drunk! I watched her babble for a few and then suddenly she rocked hard and couldn't sit on her own any longer and fell as I caught her.

She watched the ceiling and rarely attempted to wiggle while we waited for the nurses to prepare the Procedure Room for us. 525pm we were ready and I scooped my brave little girl into my arms to make the walk into the room I have been dreading.

Finding Nemo was playing on tv and I chuckled as I squeezed Annabelle to my chest. I decided in my mind I wouldn't be laying her into the stark cold exam table until the last possible second.. I whispered into her ear with a smile, "just keep swimming, just keep swimming"! 

Once her tube was measured they began to place it. It took two of us to hold her down and the process took far longer than I expected it to, she couldn't move the tube past her nose/throat with every attempt, twist and turn. She switched sides and met the same frustration, finally Annabelle relaxed in her fight and the tube slid into place. Once it was inserted into her stomach, two pieces of heart shaped taped were placed onto her cheeks to hold it into place. I wrinkled my forehead at concern, before I could speak, Annabelle hooked the tube and yanked it out as quickly as she could. I was anything but surprised! We all agreed this was going to take a floods worth of tape until she can learn not to touch. We cleaned her up and 15 m after we left our room, we has returned.. With new accessories framing our face :(

The evening hasn't gone well unfortunately. Annabelle spent nearly 3 hours screaming as hard and as loudly as she could. I struggle to understand whether or not tonight was her frustrated and overly tired or if she is actually in pain.. My kiddo can be quite the handful when she's sleepy, but something about pouring tears and screams of 'Manama help! Bye bye mama mama'. She wants to go home so badly. She wants to put her shoes on. She wants to be held but she wants to lay down.. She screams and smack herself or she screams and hits me.. This evening has been a nightmare for Annabelle and I have no clue how to help her. She cannot rest, she keeps waking every 15-20m crying her little eyes and yelling for me, I wish I could calm her fears and pain. I wish I could yank the damn thing out of her nose for her but I can't. I'm stuck riding this nightmare beside her, laying in this crib spooning with my nearly two year old and neither of us want to be here. I am praying tomorrow is better for the both of us, it has to be.

Goals for the feedings are to have Annabelle taking 60ml every hour, for 10hr all night. That is our current goal, tomorrow we will focus on how we want to handle the day feeds. We started belle on 10ml x hour and she did great, we will continue to increase the feeds every two hours all night until we reach 60ml. Fingers crossed for success. 

Tomorrow we are scheduled for speech therapy at home, the nurse asked when we do speech and I told her.. She will have someone come in and do our speech therapy in the hospital, how wonderful! Plus, belle loves speech!

I apologize for the high level version of our day, details are usually welcomed but today I truly don't have anything tactful or nice to say. I'm pissed, I'm upset and I am hurting. I do not want this for my baby and my daughter does not want this for herself. I understand fully how important these feeds are going to be for my little girl, I honestly do... I just hate it so much for her. 

I confess, I think the true pain is now outlined across my daughters face. I know she's sick, I've known she is sick for a very long time and I fight so hard to fix it, to make everything better and appear normal! I try so hard to maintain happy normalcy in our home, equal timeouts and matching sister outfits! Today my baby girl has a tube taped across her face and is hooked to feeding pumps. We are going home with a hospitals worth of medical supply. I am going home with IV carts and more equipment than you can imagine.. There is nothing normal about the next step in our journey. I can no longer walk thru target and people not judge her. I cannot begin to tell you the invalid happiness I feel when someone compliments Annabelle as a normal little girl and they don't know she's sick! I love to pretend for that moment that she really is normal and life isn't as debilitating and terrifying for us as it really is. From this point forward, we are wearing a red flag in front of her face and she'll never be able to trick a perfect stranger again into believing she's perfectly normal.

Tonight I am bitter and sad, so angry and heartbroken for my baby cub. I am also deep down grateful for the promise this feeding tube is giving us, to play longer, fight harder and rest easier in her little body.

It will be ok, I know it will.... Tomorrow is a new day. This day sucked.