Wednesday, May 20, 2015

National Eosinophil Awareness Week

Today marks Day 4 of National Eosinophil Awareness Week. 

  • The disease that terrorizes our family on a daily basis. 
  • The disease that stripes children of the simple joys of the world. 
  • The disease that has caused my baby girl, and many others just like her, so much pain it's unimaginable. 
  • The disease that is a puzzle to doctors. 
  • The disease that has triggered her body to deteriorate in a domino effect because we don't understand how to control it. 

It's the biggest word in our families vocabulary, but a pronunciation that our 4 year old learned to say as she overheard so many talking about her baby sister. Eosinophilic Gastrointestinal Disorders are an emerging health problem that doctors are finally beginning to understand. But for our family and 3 year old Annabelle - an elementary understanding of this disease isn't enough to keep a smile on her face. We need answers, help and a cure NOW.




Imagine setting a table and not allowing your child to eat with you. Imagine planning a birthday party and the frustrations of trying to find a replacement cake because your baby cannot have a real cake.

 

We have spent days, months, years wiping the tears off Annabelle's face because she doesn't understand why she cannot enjoy what everyone else does around her. No popsicles in the hot summer time, no ice cream trucks, she has to wear a mask over her face in the 100 degree summer temperatures as she pours sweat, she cannot enjoy sledding in the snow like her friends because she cannot balance and maintain her body temperature.

Annabelle is to the point she no longer cries or moves when having labwork drawn or an IV started.. even after multiple sticks (or as we call them, pokes). We stalk her constantly when her body is suddenly weak and her legs are sleepy because she cannot walk any longer. Seizures sprout out of nowhere. Her liver has failed to the point protein in her body turns to ammonia and is filtered straight to her blood and neurological system.. then her heart and so on. This causes seizures, an inability to walk, think, learn or speak.. Balancing her protein intake is like doing a chemistry experiment. Too little protein = she starves to death, Too much protein = she's poisoned from the ammonia. Doctors, speech therapists, neurologists, MRI's, endocrinologists, nutritionists and drugs - just a tiny piece of our lives.

Like most children with this disease, she has a 'Tubey'. Depending on which area of their body is failing and destroyed from the disease, those with EGIDs can have different or multiple tubes to keep them alive and nourished. We've only had two so far and our prayers are that Ohio will not deliver news that we will be adding more. Annabelle has endured NG-Tube changes more times than we care to remember. As parents, our hands have subjected our baby to more painful tube placements than we ever should.



She's undergone almost 20 surgeries to investigate the presence and damage of the disease. She's had a Gastrostomy Tube surgically placed into her stomach at the same time the surgeon removed the damage to her esophagus and stomach. Lots of kids have damage lower in their GI system and require a GJ-Tube, just like Annabelle's Tubey-Buddy Ryan. His small intestines are so damaged, he cannot use his esophagus or stomach any longer. He is fed thru a painful tube that delivers a medical food directly into his small intestines. These children also have Colostomy bags because the disease has eaten their large intestine / colon.



Those fighting EGID's are heroic. But there is very little hope for a happier, healthier, more promising quality of life. Most will never experience the taste of a birthday cake, be able to taste their own cooking, some cannot even enjoy the outdoors or a swimming pool. Surgeries, endoscopies, biopsys continue every several weeks for rest of their lives where they are subjected to more rounds of anesthesia and the dangers of an OR. Medical costs are astronomical. Sleep is only something people talk about. In-home nurses are what our homes are blessed with to help care for these children.

So many others, just like Annabelle, live every day wearing a smile but hiding the pain. Their future is heartbreaking but their optimism is absolutely unreal. They fight depression as toddlers and they see themselves as 'different', when all they want is to be 'normal'. Our babies and all those fighting, deserve an opportunity for hope and for a cure. Children's Hospital of Cincinnati is one of our country's research hospitals for Eosinophilic Disorders. These research and studies are funded by donations and the organization APFED and CURED whom have been the biggest assets for finding the answers we need. Take some time and visit the sites below to learn more about what they are doing and how you can be involved for all those fighting, just like Annabelle.

http://curedfoundation.org/

http://apfed.org/drupal/drupal/index.php

First Year After Diagnosis


Second Year After Diagnosis

Sunday, May 17, 2015

Bikers For Christ

2:15am
The house is quiet, dark and locked up tight because daddy is out of town. A wild-haired little girl shuffles her feet into my room and begins to whimper "Mommy, he's gone. He doesn't listen to me!" My eyes opened to see the most angelic little face peering over my mattress. 

"Did you have a bad dream Annabelle? Are you alright?" 
"No Mommy! I talk to Jesus but he doesn't listen to me!" 

A few weeks ago, when Annabelle first met her 'motorcycle friends',  they asked her a bunch of questions to get to know her a little so we can plan the best event possible. They asked Annabelle, "What do you like to do?" She piped up and exclaimed, "Go outside and ride my bike!!" They smiled so proudly, wearing their leather vests and told Annabelle, "Oh really? Well.. we kinda like to ride bike's too...... " She was absolutely blown away that these awesome men also like to ride bikes, she asked them if they have a really little bicycle or a big bicycle. They made a promise instead "How about we bring some more friends next week and visit you again, we will bring all our bikes and you can check them out, how's that?" Oh, the excitement that tore across her face was priceless. She spent every day for the next week telling everyone about her motorcycle friends and their bicycles. The evening we expected them, our family waited outside for their arrival. Minutes before they made it to our road, I received a text message from a friend, "HOLY MOTORCYCLES! I DONT KNOW IF THEYRE FOR ANNABELLE, BUT ABOUT 20 LOUD HARLEY'S JUST ENTERED OUR NEIGHBORHOOD!!!!!!!!" We could feel the rumble as they turned the corner and pure adrenaline and love absolutely burst from my heart as I watched my little girls faces light up at the show arriving in front of their home.





AK got to meet the Guilty Ones MC and we were both honored to meet those from the Bikers for Christ MC. Bikers for Christ is a Christian ministry for motorcyclists that have many chapters / organizations around the country and around the world. We opened our doors that evening and invited everyone into our home for dinner.

The Minister with Bikers for Christ, as all the rest of the riders, were very kind, honest, genuine and open. They asked questions about our little girl but didn't pry too hard. They asked how AK and I are managing and I gave them the honest answer to what a marriage looks like when you're told your child may not survive. We talked for 2 hours around the journey Annabelle has taken us on, the doubts we have had in our faith, the bitterness and anger in our home from time to time and above all - the fears that flood our family because of Annabelle. I walk around every day on the verge of breaking into tears and that evening was no different. Only this time, I couldn't hold them back. With tears streaming off my chin and my husband by my side, I shared some of the darkest questions we have within our family and relationships (those with one another, with our children, with ourselves and with our God).

In the Bikers For Christ pockets, all the guys carry trinkets to share with kids or anyone they wish to share Jesus. The girls were both given a handmade bracelet. They were also both given a metal cross. Simple, shiny, but also dull, grey and lightweight. It sat in their hands perfectly as they stared at it. The Minister spoke to them just as they would be able to understand, "You know what that cross stands for?" Annabelle piped up, "JESUS!". He said "That's right! Any time you are scared, frightened, if you are worried about your sissy Madelynne, or if the boo-boo's inside your body are hurting Annabelle, you can just hold this cross and talk to Jesus. You can tell him anything and he will listen to you. He is always here and always listening to you. He loves you very much, always remember that." 

The evening was more powerful than words can describe. As the clock continued to turn - I knew Annabelle needed another feeding, but more importantly she wanted to see the Motorcycles parked outside, so we began to wrap up the night. Before we did though, the Minister asked if he could say a prayer.

He keeled to the floor and said to Belle, "Im going to get down on your level, OK Annabelle?" She said "No sir! This is my level!!!" And pointed all the way down to the ground. They both sat down on the ground. As he keeled, he held one hand with Annabelle and his other with Madelynne. Slowly, quietly, intently, the rest of the bikers in my home began to form a tight circle around one another. Placing one hand on the shoulder of the kneeling man in front of him, they all bowed their head. He spoke the most honest words to Jesus, he prayed heavily for Annabelle, for the doctors and her care givers, he then prayed for Madelynne. I peeked thru one eye and caught her reaction, she jerked her head straight up out of curiosity for why he just mentioned her name.. she found me in the crowd and I winked to her as she dropped her head back down and closed her eyes. He prayed for Madelynne, he prayed that she enjoy her little sister and always remember to play and cherish the fun and not-so-fun moments with her, he prayed that she not have to worry about more than her little 6yo mind should, he prayed that she remained focused on school and herself but still have patience and discipline even when mommy and daddy have little. Finally, he prayed for AK and I. He prayed for everything we need to continue fighting this journey with our little girls, for ourselves, for our family and for our faith. The prayer was so humbling and honest, I struggled to mumble "Amen" at the end. I was speechless as if the air had left my lungs - but my eyes were too dry to allow another tear to fall. The night closed perfectly.


Outside Annabelle asked if she could see the bikes, they laughed "Oh Annabelle - PICK A COLOR!" The fleet of motorcycles in front of our home, gave both of us a heart attack. I've never seen so much money parked in front of my house, and Annabelle has never seen so many toys to choose from :) Both girls climbed on the bikes, one after another, picking their favorite color and the most comfy seat. Annabelle liked the big red one - Mady liked the white bike and named it Snow White.


 


 
Two days later.. at 2:15am
"Did you have a bad dream Annabelle? Are you alright?"
"No Mommy! I talk to Jesus but he doesn't listen to me!"

She's holding two metal crosses in her hands and she's trembling. "My motorcycle friends told me that Jesus will listen when I talk to him. My boo-boo's hurt mommy and Jesus is gone - he can't hear me anymore!"

Oh sweet girl, Jesus always hears you, and he is helping you right now. Jesus is very special and he is talking back to you, but we can't hear him. He is working lots of miracles around you everywhere that we can't even see. Just like your motorcycle friends, your dance friends, our neighborhood friends, family and lots and lots of people - they are all loving and praying for you, together we are all making the boo-boo's go away and get better. I promise. Keep telling him what you need sweetheart, he will listen.

... she begins to whisper ...

"Jesus, I think I need some candy."




Tuesday, May 12, 2015

Quick Update on Annabelle

Unfortunately, our family continues to get hit with a GI bug that is circulating the county. It's a nasty bug, and one that will quickly land Annabelle in a hospital if she comes down with it. Kudos to our family, our nurse and Annabelle - we have somehow managed to prevent Belle from coming down with it. Between quarantine, gallons of lysol, hand washing and isolation - she is doing very well.

One change in Annabelle's condition, is more pain/discomfort. If you've ever met this strong little girl, you will recognize almost immediately "she does not complain of ANYTHING". Annabelle can run 100mph into a wall, fall down and bounce back up "Im fine!" with a smile. The doctors are not certain whether she does not feel pain, or her poor body is so used to constant pain that she doesn't recognize when she's hurt. Lately however, she is complaining more and more often that her tummy hurts. This typically happens after she has either drank a cup of her formula or has received a tube feeding. Her whimpering is not accompanied with tears, she just seems to lay down and not move for quite some time until the pain subsides. I am not certain what is causing the discomfort. I hope we can find resolution to this next month - I pray it doesn't escalate between now and then!

Her joints and muscles are also becoming more and more weak. She pushes herself really hard to play and keep up with others. When her friends are over to play or when she's around her cousins, she gives it her all... and we certainly let her run! However, she will spend the next day(s) barely able to walk down stairs without crying for help. She wants to be carried a lot more often - because Annabelle does not communicate what hurts her, I don't know if she wants to be carried more because her legs / joints are in pain or if she's too tired / fatigued, or if it's her tummy that is bothering her. To ask these questions is like speaking to a fish. She will smile a goofy smile and say "I ok mama! I not sick! :) " I love her spirit and optimism, I wouldn't dare crush that for anything. We just carry her along and continue moving about our day.


Wednesday, May 6, 2015

Cincinnati Intake

Patient intake is complete for Cincinnati Children's Hospital. A short phone interview yesterday finalized Annabelle's case. We highlighted the most significant aspects of Annabelle's health that need to be addressed, we clarified prior tests and procedures and why they were performed (EEG's / Brain MRI's / Bone Age Scans etc.) Finally - I was asked who we would like additionally part of Annabelle's team while we are there. I asked that Behavioral Medicine be involved; this was hard but a reality we need to discuss.

Annabelle is growing wise, aware and becoming more verbal about her condition. She asks questions that her daddy and I struggle to answer. When Annabelle was an infant, she simply screamed day in and day out and looked at us with helpless eyes - this resulted in an incredibly frustrated and depressed infant that resorted to banging her head onto hard floors and pulling her hair out. We have overcome those days, but we have evolved into where we are now: "I can't go to school because I have a tubey and that makes me sad." "I want to eat what sissy is eating, PLEASE mommy! Please! I promise it won't hurt me"."WHY?!.... why :("


AK has ridden this journey along side of us the entire time, but as a daddy - he struggles to see his daughter as 'sick'. Daddy's like to fix things, they want to make the pain stop and go away. Men and daddy's are 'fixers' - mommy's tend to nurture and take care of our sick child. AK and I have taken two different approaches to this life we were dealt raising Annabelle. We compliment each other very well and Annabelle never misses a hug and kiss from each of us when she needs it. But as this journey continues to unfold, with little answers for what the future looks like - AK and I need to be on the same page, the conversations in Cincinnati need to be heard by the both of us and with clarity. We struggle to recognize what each other and Annabelle needs from us at times. I want AK to be part of the Cincinnati trip for many reasons, mostly so he can learn and hear from the best medical doctors in the world about his daughters condition - I also need him as support for me while we face a tough road on this journey. We both need to hear all the information that will be given to us so we can keep ourselves accountable to her treatment plans. It's very, VERY difficult for one person alone to hear a doctor and retain everything. Behavioral Medicine will be part of our visit to Cincinnati. They will be there to support AK and I as we make this trip and they will also be there to help us begin to understand and answer Annabelle's frustrations and questions. We have quite a large team preparing to work with Belle.. behavioral medicine, I believe is going to be the icing on the cake for this visit. Whether we know it or not - we need them involved more than we can imagine.


Our final itinerary will be sent to us shortly, but tentatively the schedule appears to to involve Surgery Monday, Scans and procedures Tuesday along with Behavior Medicine Eval. Allergy / Immunology work-ups, consultations and EoE seminar that AK and I will participate in while the team of doctors round-table. Thursday will hopefully be the day to review clinical findings and develop a treatment plan based on our tests, pathology results, evaluations etc. It will be a very busy week.. I am hoping we do not have much more added to the scheduled.




Monday, May 4, 2015

Goals for the week

Stabilizing Annabelle is our current struggle. She has a fair appetite since being home from the hospital but she continues to have bouts of retching (trying to vomit). She does not complain of pain but she's visibly uncomfortable. She struggles most after a feeding and then begins to feel better shortly after her stomach is emptied.

Mid-week we began to worry about Annabelle's BMs. After three days from being home from the hospital, Annabelle already wasn't passing stool again. She is taking all the standard stool softner and oral laxatives daily, by day 4 we added milk of magnesia into her diet and that did the trick. She had several BMs over the weekend which came as a huge relief to us. We do not have any true plan as to how we will control or maintain a healthy GI digestion and keep things moving. Some part of her GI system is no longer functioning - we just need to get to Cincinnati and get our answers to hopefully determine the best game plan and treatment for Annabelle. In the meantime, our prayers are held strong that we can safely maintain Annabelle's digestion and keep things 'moving'.

Goals for this week are to improve her diet. If she misses or is late for feedings, she becomes critically weak, pale and disoriented. With feeds she becomes nauseated and uncomfortable. Hopefully we can find a safe balance soon.

Thank you from the bottom of our hearts for the continued prayers for our baby girl!

Friday, May 1, 2015

Answers for Annabelle

Two weeks ago, our family received an email from a Motorcycle Club, they mentioned our little girls name and that her story had been brought to their attention. Our family does not ride motorcycles, Annabelle's grandmother has a Harley and a few of our friends here and there ride - but a group of bikers in leather is typically not our crowd.. we are more Nissan Altima and lifted trucks kinda people ;)

My heart skipped a beat and I quickly called AK inside to read the email again to make sure I was reading it correctly. A club wanted to meet us? Wanted to meet ANNABELLE? We gave her a high-five, "Way to go kid! You have fans absolutely everywhere, in EVERY shape and form, don't you?!"

Three days later, we opened our home to the Guilty Ones Motorcycle Club, Richmond Chapter.
I wasn't nervous in the least, but I was quite curious over who was about to come into my home. Neither AK nor myself are judgmental people, we open our doors to perfect strangers.. but this was quite different - I was intrigued and excited for what these new guests would bring to our family.

Annabelle ran to the door in a full sprint when they arrived, "Come on in friends! Come in my house!" She didn't miss a beat. She didn't see the leather vests or tattoos - she saw a group of the most incredibly loving, humble and caring men that may ever come into our lives. They brought her gifts. A FULL BAG of gifts to be exact. She was in disbelief over the goodies, I was in awe as I watched her slowly begin to wrap them around her pinky.

Before I knew it - two hours had passed. We had all shared some of the most amazing stories and conversations, I sipped a glass of wine to help fight back the pouring tears that wanted so badly to fall - tears of happiness and joy, humble and love for perfect strangers. Annabelle showed the guys how she hooks up her feeding tubes and within a blink of an eye, 5 grown biker men were kicking a Princess Frozen bouncy ball in my living room while Annabelle laughed and smiled.




The Guilty Ones MC has chosen Annabelle for their annual "Impact a Child Charity Event" 

This event is for children that have a specific need, whether that is a medical device / supply / treatment, etc. Annabelle's need is for answers. And while money or funding cannot buy answers.. Cincinnati Children's Hospital, Center for Eosinophilic Diseases can certainly provide the answers that Annabelle's little body is dependent on.

Thursday, April 30, 2015 - I got the call from Cincinnati, Ohio. "Hi Mrs. Bishop, Annabelle has been approved and a team is waiting for her here at the hospital." The silence fell and the world stopped spinning. In the most incredible way possible - everything in life just stopped when those words were spoken. This is the prayer that our family has been praying hardest for since March 2013. This hospital and it's organization is the answer for children like Annabelle who suffer from this disease. This is our "St. Jude" for Eosinophilic Diseases, if you will.

Because of Annabelle's most recent admission, we now know the rest of her GI system (large intestine, colon and possibly small intestine) is succumbing to the disease. We need answers quickly, but answers do come with a price tag when it involves consultations, surgeries, tests, labs and a huge array of doctors representing various fields.. not to mention, flights, travel, lodging and time away from work. The price tag is more than any family can handle. But a price tag should never be placed over a child's life.

This benefit is to get Annabelle to Cincinnati Children's Hospital and literally save her life, the quality of her life, keep a bubbly smile on her face, calm her parents fears, ease all your troubled and worried minds.. most importantly - this benefit and hospital will provide Annabelle Grace everything that a beautiful, strong three year old deserves in life, a fighting chance.


The "Answers for Annabelle" charity will be hosted locally in Hanover County. The Motorcycle Club is doing all the leg work and coordination but they can use any and all the help you are willing to offer and share.
  • We need a venue large enough to accommodate the event - do you have any suggestions?
  • Answers for Annabelle T-shirts with all the sponsors on the back will be printed
  • Personalized rubber bracelets (designed by Annabelle... no kidding) are being manufactured now.
  • There will be bouncy houses, face painting, multiple bands playing, corn hole tournaments, poker runs, and much more. 
  •  Most importantly, a bike ride on Annabelle's behalf will be coordinated and any and all bikers are invited to join for this little girl. 

Sponsor packets will be available very soon for anyone that wants to share their love and have their company/organization name printed on the t-shirts. ANY vendors that would like to come out, participate, setup a vendor table/tent, donate items or be part of the day - you are more than welcome to do so.

It takes an army to make things come together, fortunately for Annabelle.. she has the biggest and best army behind her cheering her on. I cannot wait for you all to enjoy this day with our family, spend some time with Annabelle, dance, have fun and give her big hugs as we leave for Cincinnati Ohio for answers.


If anyone has any questions or would like to be part of this amazing event, please contact the club directly, they are an incredible group of men and are grateful for everyone that wants to be part of making this come together for Annabelle.

GuiltyOnesRichmond@gmail.com



Wednesday, April 29, 2015

13 Days w/o a BM.


Admission was seamless. Annabelle was very calm about this hospital visit and inpatient stay. She had very little anxiety about the doctors and hospital, this is so heartwarming and heartbreaking for us. She was chipper to the nursing staff and settled in her room comfortably. Climbed into her bed where she would spend the next days, adjusted the recline and grabbed for her Kindle to watch cartoons. It was like she knew the routine all too well... my heart sank but I was able to exhale a sigh of relief. This is far from our usual routine where I carry her thru the doors in silence, she clings to me like a monkey and pleads with tears in her eyes to go home. I guess she has finally realized that going home isn't an option when mommy brings her to the hospital, so we might as well get comfy while we're here.

Annabelle asked if the nurse was going to poke her. I said "Yes sweety. She IS going to 'poke' you (that's how we refer to needles), but I promise it will not take long. She will do her best to be very gentle. Can you do your best to be very brave so it will be all done super duper fast?" Bless her heart, she said "I don't know mommy, but i'll try."


The nurse was BEYOND wonderful. She spoke to Annabelle on the same level as I do. No sugar-coating or lies. She explained what was going to happen, step by step, she even went further than I would have but I think it was a good thing. It was an appropriate level for Annabelle to understand and I think it made the anxiety even less stressful that it was. I choose the best site for the nurse to place Annabelle's IV. There is a great vein in her left hand that I prefer they only use for IV's.. blood draws, we go for other areas, but for an IV - I prefer to keep her left hand unharmed and healthy for those. The nurse told Annabelle everything she was going, including wiping her hand with cold alcohol to make sure there are no germs - then next she pulled the needle and Annabelle whimpered. The nurse showed her what it looked like and then pointed to where she was going to put it. She counted to 3 and didn't lie about when the stick would come. Annabelle squeezed my hand and didn't look. She moaned one time "ohhh mommy!" with the saddest eyes, but a tear never fell. Annabelle looked around the room cringing thru the pain as the nurse struggled to secure the IV placement (the vein kept moving away from her).. Belle did such a wonderful job. Once it was in place, the nurse told her to look. Annabelle was very proud of herself once she saw what had just happened and she didn't cry or pull away. I was in absolute awe of her bravery.



After her IV was placed and they began fluids, we discussed the plan for administering the GoLytely. We would deliver the liquid via g-tube, starting at a rate of no higher than 150ml / hr. I typically run her continuous feeds at 40ml/hr because her stomach doesn't empty fast enough to run at a higher rate. The nurse wanted to begin at 300ml/hr and I said "Absolutely not". Annabelle would be wretching and trying to vomit in no time. If she begins that violent process, we will be in trouble. By this time, more doctors were doing their assessments on Belle. The god-awful smell from her breath and coughing / choking was confirmed as stool that was backed up into her stomach. The leaking discharge from her gtube was also backed up stool. I wanted relief for Annabelle as soon as possible, as quickly as we could - we began the feeds. Began the IV fluids and manned our positions to begin the evening of a poop-marathon. We were far from wrong.

I began vomiting shortly after midnight. The virus Madelynne was fighting at home was apparently shared with me. I spent the rest of the night calming Annabelle to get back to sleep between vital checks & blood draws as I vomited every 20 minutes around the clock. By 5am, Annabelle had been receiving the medications for 8 hours. She still had not even the first sound of a rumbly-tummy.


9am.
13 Days since her last BM
24 hrs since she last peed
12 hrs since beginning the bowel cleanse that should have taken affect within 3-4hrs.


We still had nothing.

Annabelle was swollen everywhere, her face was hard as a rock and her skin as tight as can be. Her face, hands, fingers and toes were painfully swollen. She was pleading for something to eat and broke down in tears each time we dismissed her request. She was so hungry.. I snuck her ice chips when the nurses weren't looking and let a tear fall each time I hid myself in the bathroom vomiting and broken hearted that I couldn't do more for my baby.

At hour 14, I spoke to her doctors about concerns whether or not a large stool would do damage and rupture her internally - they were all clueless. None of us had answers as to what was going to happen but we were all equally worried and fearful the result was going to be painful for her.. We decided to bolus Annabelle more fluids because she still was not urinating. Her diaper had been dry for two days. Something had to give.


Finally, after 15 hours - Annabelle had her first BM in almost two weeks. It was pure liquid, and we couldn't have been more grateful for it. Both her personal nurse that had been with us all day, and the hospital nurse quickly moved into action to help clean Annabelle up. Each time that I tried to step up and help, I would vomit again. I am certainly not scared of poop, but for someone that has spent the last 10hrs vomiting, anything and everything was able to instigate another bout. I felt so helpless to everyone, especially Annabelle. After her shower, we had to rearrange her IV. Annabelle cried with tears begging for me to home her and make it stop, I couldn't touch my daughter because I was too scared I would get her sick. It was in that moment that I knew I wasn't doing anyone good in the hospital. Annabelle needed me, but not as badly as I needed her. She needed me well and I couldn't do ANYthing for her. Fortunately, we have the best nurse in the world that loves her to pieces - I collected my things and left my baby in the hospital. For the first time, ever, I left her with someone else. Someone I trust more than anything - but it was still hard.

I called AK and told him that I needed to come home and he can head up there. I would be home with Mady and he could be with Annabelle, we could switch. Fortunately, he didn't listen at all and he called his own mother to come nurse BOTH Madelynne and I for the day.


Over the next 4 hours, Annabelle only had two more BMs. The doctors expectation for her was significantly higher. They decided to bump her feed rate of the bowel cleanse from 150ml/hr to 400ml/hr!!!! It was obvious Annabelle was not progressing as she should and her GI system is not functioning properly by any means. It took several more hours and things finally began to move again. Annabelle was allowed a popsicle and got a visit from the hospital doggie in her room. Two things that made her more happy than anything. (well, chicken probably would have made her really happy).


By Tuesday, Annabelle was finally home. Mady was feeling much better. I was slowly recovering and Annabelle, albeit weak and extremely tired - she was home and grateful to be there. Her bowels are still moving terribly slow, she has very very little appetite and is quite clumsy because she is so weak but I know she will turn around soon.

We just need to make it a few more months. Annabelle just needs to hold on a little longer so we can find her the answers she needs.

She made it thru this battle, she's made it thru so many - she will make it thru the rest.