Upper Endoscopy, Round 2. Colonoscopy, Round 1 - Ding Ding Ding!

2:34 a.m.

That was the time the Poop-A-Thon began. I crawled in bed a little after 11pm and fell asleep shortly after 11:30p. I haven't slept in the same room with Annabelle since she was a newborn, and even then I hated it because I listen and hear everything, with each grunt or moan, I wake up. She was moaning and whimpering a lot in her sleep and I just knew from the second I laid down; it was going to be a long night ahead.

When she finally started fussing, I checked my phone to see the time and I got up. When I picked her up I noticed she was soaked.. with poop.. head to toe. She was shivering and I needed to get her changed, but I was in someone else's house with two very precious babies sleeping right down the hall, I couldn't just give her a bath like I normally would at home. I resorted to the baby-wipe-scrub-down and changed her into another set of jammies. I pulled all the blankets from the pack-n-play and explained to Annabelle that she was sleeping with me now. THIS was fun, she also has never slept in the same bed with us, to date = EVER. She wasn't feeling well though and was very fussy and clingy. Finally after a couple minutes she laid her head down on me.. a minute or so later she began vomiting. After cleaning vomit and changing myself, she pooped thru her diaper and jammies. And this is exactly how our night went.

Annabelle doesn't speak much. She will parrot a couple things back to you if you ask her to say something.. and she will come over to you chanting 'UP! UP!' if she wants you to pick her up, but that's about all she does. Beside the word UP and Uh-Oh, she doesn't say anything on her own. Laying in the bed with a whimpering little girl.. begging for food and I couldn't feed her.. crying every time I needed to change her diaper and wiping the tears from her face every time she would vomit.. she laid beside me, curled up as the little spoon and held my finger. I then heard her mudder the words "Wuh-Woo", her two sounds to say "I love you." My heart literally skipped a beat and it literally took my breath away. I kissed her sweet curly hair on the top of her head and held her tight. Around 6am is when I laid in bed and believed she would be able to get a rest of this last episode of pooping and I told myself  "Ashley, you need to sleep this time". And I did, I closed my eyes with her in my arms and we fell asleep for about an hour together.. I would open my eyes here and there to check to see if she was sleeping but then fall right back asleep. I needed that hour, I was so exhausted.

We went downstairs and I made Annabelle another cup. She wouldn't drink anything the entire night and I was getting worried she would dehydrate if she didn't have something soon.. plus, she had to stop all fluids at 10am. It didn't go well. The rest of the morning was wonderful, all the girls had breakfast together (beside Belle of course) and we tried to keep the distractions coming. The hours from 9-11am were beyond horrible.. for so many reasons that I will spare you, it was terrible for Annabelle and I. She screamed her little head off for hours between feeling sick, tummy hurting, being hungry but couldn't eat/drink, and I couldn't carry her 24/7 because we were getting ready to leave and I was trying to pack the car, in the pouring rain. Finally I got everything loaded and we headed out.

Once we got in the car, she was much better and I prayed it would stay that way and the next several hours would fly by.

I made it to the hospital in the pouring rain and met AK in the parking garage. We couldn't have had better timing. We got all our things together and Annabelle was very happy to see her daddy.

Once inside, I found my trusty Starbucks again. I needed something anything to put on my stomach.. preferably caffeine, because it would look quite terrible if I were bored enough to fall asleep during my child's surgery! I was just SO tired and it was hitting me like a brick wall. After I secured my crack-in-a-cup, we checked in. Received our badge that read our Name, 3rd Floor - Surgery, Annabelle Bishop, Date and our Driver's License Picture. I swear, you won't be getting anywhere around this hospital without permission! 

Pre-op Registration wasn't too bad.. beside the b!tch registration/check-in lady that scolded me for bringing a coffee cup into the waiting room, even though NOONE was in there - she demanded that I walk outside immediately and every nurse around her was rolling their eyes. I guess we all work with one of them everywhere, huh? The real nurse was wonderful and got all her vitals with lots of distractions. Annabelle doesn't like anything about a medical office, NOTHING, she even hates the ID Bracelet and flips out, so just getting a temp is excruciating for this drama-queen. Once all the questions were answered and I exhaled after answering the question "Is Annabelle allergic to anything?", we got to play for a couple minutes before going back to the next area of Pre-Op.

In our next room we were instructed to change Annabelle out of everything and into the way-too-long-pants they provided and a gown. Remove earrings.. you know the drill. We then waited for the nurse to come in and re-confirm all our information and walk us thru what will happen in the OR. We got to pick a flavor of gas/anesthesia, AK chose Cotton Candy and I think it was a great choice. Something about being in a confined medical room, sends Annabelle's anxiety thru the roof.. it's heartbreaking to see her reaction when she knows something is not in her favor and I can't do anything about it.. in fact, I am the one that brought her here and asked for this, so I feel guilty the entire time - with every tear.

Water is our new favorite thing. She loves running water.. washing her hands.. playing with the soap.. mostly, just feeling the water dripping. She loves it. Anytime we are in a doctors office, I find the sink and we spend 99% of our time running up their water bill. Hey, whatever works - you do watcha gotta do.

After the nurse finished discussing everything with us, she asked if we wanted to wait for the doctor in our room or go back to a playroom to wait. We needed to get out of that room for everyone's sanity, especially Annabelle's so we agreed to take the walk to the pre-op playroom (which was a really good choice because we spent an hour in there waiting..) Finally I saw Dr. Konikoff come to speak to us with an anesthesiologist. We discussed her current condition, what we would be doing today and any concerns. Of course I thanked him and he winked to Annabelle that he would see her soon. We spoke to the anesthesiologist briefly following and then waited for the nurses to bring us back.

Saying goodbye this time was a bit more bittersweet than the first time we went thru this procedure. In many ways it was easier, probably bc it wasn't her first time with anesthesia.. and most likely because the nurses were so much more comfortable to work with. This was a place that deals with only children all day and they knew just what AK and I needed to feel comfortable and they held such comforting open arms to Annabelle so she would also feel safe. I gave her lots of hugs and could feel my arm shaking and turning weak when AK asked me to smile for a picture. I am glad he took so many this day - it makes the memories and the process much more enjoyable than the bad thoughts I tend to hold onto longer than the smiles that actually did take place!

We then went to the Surgery Waiting area. I hated this room. I signed in and looked at the chairs and then turned around to AK and said, "Nope. Im not sitting there for over an hour.. let's go eat" I noted on the sign-in that I would be going to the cafe and we headed towards the elevator. We didn't have a clue where we were going so I just pushed " 1 " and when the doors opened it was as if a flood of fried chicken just poured down the hall.. or maybe I was just REALLY hungry! I followed my nose around the corner to the right and sniffed all the way to the greasy, hot and fresh onion rings!! :) They were everything I wanted them to be. While we were eating, Andi called and we talked for a bit. Again - thank you distractions! My phone was dying though and I was simultaneously having a panic attack that it would die as the hospital called from upstairs for something. We got off the phone and made our way back upstairs to check on Annabelle.

Her number was 4226. I loved this monitor. I stalked it like a hawk but I did love it. I enjoyed watching how she was doing.. and knowing that even though the doctor was taking longer than he said he would, that she was still in the OR and for some reason that made me feel better than her moving to the PACU and I wasn't getting an update. I was patient. I was silent. I prayed. I gossip'd with AK. We contemplated what the doctor would say. and we waited.. God the wait is nerve-wracking! Finally I saw Dr. Konikoff walk thru the doors to come speak with us.

He explained that Annabelle, from just a visual look, appears to be making a lot of improvement. Her esophagus looked much better than it did before which tells us that on the surface, the ridiculous meds and no foods/Elemental Diet is actually doing what it should. Just hearing those words gives me the energy and motivation that all this hell is actually paying off for my sweet child. I was relieved.. but then he stopped me. Dr. Konikoff reeled me back in and spoke very medically and told us that often times, visually, this disease may take different shapes and forms.. where it appears she is doing better, the truth will be in the biospy results and that very well may tell a completely different story so I CANNOT get exited too soon. I agreed and I remained focused and open-minded.  I asked if her biopsy results show that the EoE IS improving and her Eosinophil count is low/0, could that open the possibility for us to begin introducing foods? He immediately said no. Then he saw the reaction on my face and he looked down and thought for a bit... a LONG bit and looked back up and asked, "Do you think she would actually eat?". YES! I do! I do believe that if I were to give her food, she would eat! He has a LOT of hesitation when he agreed, but then he heard me out. If I could give her food, no matter what it is.. even if it's only one thing, I believe her spirits/quality of life would improve so much that she will take feeds easier - she will eat more - she will gain weight!!! I truly believe this will be the ticket to avoiding a feeding tube, I do. And I begged for that opportunity to do so and avoid that route. He agreed and we spoke quickly about the allergist I am using. I explained that I have nothing against our current allergist, however her position on this disease does not sit well with me at all times and I would feel more comfortable using an allergist that he works closely with and will stay in communication with, preferably someone more knowledgeable about Eosinophilic Esophagitis. He recommended a woman that works at CHKD and has a big interest in EoE - just the sound of the words run giddy chills up my spine. I immediately agreed that this would likely be the best fit for Annabelle and we signed over to have all her care moved from Richmond to Norfolk. Shaking Dr. Konikoff's hand, I felt my body exhale. I truly believe we are in the best hands and best care for Annabelle and nothing in this world gives me more comfort in that. Granted this is easily a 2hr trip every time we need a visit, but it will be worth every mile!!! I know it will!!


Once the doctor stepped away, the nurse soon after asked if we would like to come back to the PACU to see Annabelle. We followed her into the room and around curtain #6 and met another sweet nurse standing up holding her in her arms with a blanket. She told us that she was just starting to wake up and her and I wiggled our way around one another to pass off Annabelle into my arms. I took a seat into the recliner and held my sweet baby so tight. She would cry pretty hard at times, but mostly she was so tired that she just whimpered between drifting back off. I asked the nurse to bring me a cup of something for her to drink and she brought me a sippy cup of pedialyte. Annabelle nearly chugged the first one and cried when it was empty - we refilled it and then did another round of stat's. Afterwards we began detaching all the cords and wires from her; blood pressure cuff, heart monitors, tape from oxygen, IVs, pulse thingie.. the works. Finally I asked if we could go home and she agreed that Annabelle was looking ok for the ride. I dressed her into the most comfortable outfit I could find to pack and we refilled the sippy cup one last time. Thanked everyone tremendously and made our way for the door. It was so nice walking across that parking lot with our little girl. We packed the car, strapped Annabelle in tightly with me in the car and I followed AK home. We took 460 home and drove thru some of the worst storms I've ever seen. Our timing was amazing however and we got home without ever hitting traffic.

Mady was out with Aunty-Dandi, shopping, eating dinner, buying pools and all sorts of fun stuff. Annabelle was so tired once we got home that she could hardly stand up without falling.. I made her a cup of formula and we put her to bed. Once Mady was also in bed, AK and I made ourselves dinner and sat back. That lasted for about 3 minutes and I put myself in bed. I was asleep by 8:45pm

Annabelle made it thru the night very easily without waking up. She was very clingy the next morning and has been extremely attached to lambie lately too. Kelly said she slept most the ENTIRE day Friday and ate like a champ. I was glad to see it and happy to know my baby was recovering well. She was still very clingy and fussy at times, but all things considered she was doing wonderful :) Now onto crossing our fingers and saying lots and lots of prayers for good biopsy results next week! Please Lord give us good answers for this little girl, she really deserves a break, I want to be able to finally look into her sweet eyes and tell her "Im going to make you better sweetheart, I know what to do now" That is my prayer.