Wednesday, July 1, 2015

A day without appointments

She's Weak. Tired. Defeated and Heartbroken. She wants to go home and so do we.

Both her arms are covered in blown veins, both hands are bruised. The stoma around her gtube is forming granulation tissue before our eyes that will soon become infected. 



We're ready to go home :(

Annabelle was very uncomfortable last night as she tossed and turned in the bed with daddy. She doesn't want to snuggle us to me anymore, she's mad at me for bringing her here. The morning began with positive energy and smiles about visiting the zoo, but the moment we got into the car she shifted.. I don't know if her pains began to kick in or what happened but we spent the rest of the day on pins and needles trying to decide to go back to the hotel or push her into enjoyment of the zoo animals.

Annabelle never used to complain of pain, she never said she was hurting and rarely did acute pain stop her in her tracks.. doctors have said numerous times that this is likely because she has suffered pain her entire life and doesn't know the difference between pain and feeling normal. Lately however, she is complaining, a lot. Her pains are increasingly harder to manage - for her and for us. She is verbal with her pain levels and can begin to finally tell us where she hurts worse so we can address it specifically to those areas. Today unfortunately, she just said she hurts with tears in her eyes. She would gasp when the waves of pain hit her and remain motionless. AK and I would watch one another and Annabelle, not sure if we should keep walking or stop. She whimpered to herself but persistently asked to see the Lions.

Our hearts are breaking minute by minute as we watch our baby succumb to whatever disease plagues her small body. Our mommy and daddy minds race for ways to help our youngest daughter fight a battle that we know nothing about. She looks at us with eyes that protect her, but she looks past us because she's learned in her young 3 years that we never do actually protect her. How do you deliver that message as a parent? How do you whisper in their ear when they're crying  "It's OK sweety, mommy is here.. it's ok, I have you". That means absolutely nothing to Annabelle. Those words are not comforting, in fact, they're a message that far too often delivered painful results. Mommy and daddy holding her close, does not ease her pain nor does it ease her mind - we hold her thru her pains without helping them because we can't.. we hold her down while others subject her to pain - worst yet, we hold her down and subject her to pain OURSELVES! Our hearts have been breaking for years..... I think we have now broken her heart, not just ours. And the sound of that shatter hitting the floor is paralyzing :(



The Cincinnati Zoo was probably the best zoo we have ever been to. The monkeys were hysterical and SO loud this morning, Annabelle was able to comfortably sit in daddy's arms and watch them swinging.



We explored everything the zoo had to offer. We saw every exhibit, found the lions, pet the goats and measured a snake (GROSS!)




She complained of not feeling well and could hardly stand when being held by one of us. Bribery ensued so we found ourselves caving to the purchase of a slurpee, face painting and carousel ride (yes, that's where your donation went this week.. thank you lol)

We came back to the hotel to let Annabelle rest after a quick shower. She fell asleep right away.



 I think she needed the nap.. I couldn't rest, nor could AK. We faked it as long as we could before we both got up and started moving around.. Started a load of laundry and cleaning. I then found myself scrolling thru all the pictures of Madelynne. I miss my big girl so much it hurts. I've never been away from her this long, likewise, she's never been away from us like this either. She's staying with my grandmother, and while Mady doesn't say it out loud, my grandmother said she really misses and is worried about her little sister. 

Here's the letter she wrote to Annabelle this morning while coloring alone. 


I hope you had fun. I miss you Annabelle. I love you Annabelle. You are so nice to me. Thank you for my gift. I love you so so much. You are my favorite person in the whole world. I love you Annabelle. 
Love, Mady


I have Madys picture on the nightstand in the hotel room beside us and we talk about her all the time when we can't FaceTime. Annabelle keeps telling us all the things she wants to do when we bring Mady back to Cincinnati with us! I love that my girls adore one another, they're the best I've ever given them - each other.



Tomorrow is biopsy results day. We have been thru this nearly 15 times in two years and it still hasn't gotten easier. We won't sleep tonight. We likely won't be able to talk about all the what-ifs. We will just watch tv and pack. Toss and turn and hold each other's hand with heavy eyes as we count the hours until we hear the doctor speak the words. It never gets easier. It never hurts less. Good news or bad news, our child still fights this disease yesterday, today and tomorrow despite what pathology results say. The fight will never end and these night before we hear the results will never cease. 

We said a prayer tonight as a family though, we cheersed before dinner to accepting any news as another step forward for our family, no matter what it means on our path ahead. We toast d to the opportunity to be here in Cincinnati Ohio and for the skilled and knowledgable physicians that have cares for Annabelle so far. We are blessed to have the support at home for us while we're miles apart and we admire Annabelle's strength for fighting so hard to make it this far. 



Tomorrow will be hard. Tomorrow we will hear words we have never heard before and will be forced to accept a lifestyle change we've never embraced. Tomorrow, words will cut deep but they will be the truth we have searched for so long. 

Pray for us tomorrow. Our appointment is I the hospital at 915am.

Xo sweet dreams world. 
Sweet dreams to you my MadelynneMarie, we miss you baby girl. Sleep tight. 








Tuesday, June 30, 2015

Tuesday Update

This is going to be an update on what we've been up to and how things are going. I will update once we are home about conversations with the doctors and our teams and what findings are looking like. I want to do it this way for a couple reasons: 1) my baby girl needs cuddles and my attention 24/7 while we're here 2) when I share what the doctors are saying, I want to explain the information clearly for everyone to understand. 3) we don't want to speak too soon and get our hopes up. Right now, Annabelle is looking really good based on the surgery - we are praying with all our might the biopsy results reflect the same. 


Monday's surgery was a roller coaster of emotions. I told Annabelle about an hour before we were scheduled to go to the ER that she was going to see the doctors and they would give her medicine to make her sleepy so they can look at her tummy. She immediately got upset and this began an hour of pleading to go home. She was terribly nervous but fear quickly escalated into surrendering. 



She rode in the wheelchair silently with a head dropped. I tried talking to her and she wouldn't even look our way. She was heartbroken and knew we wouldn't help her. Once in pre-op, she climbed out the wheelchair and onto my lap and cried to leave and go home. She said Cincinnati isn't fun anymore and wants to go home. 



We met the Anesthesia team and after reviewing the game plan again, they were ready. 



They gave her two doses of Versed and within a minute, she was loopy and drunk. Her tears and fears turned into giggling. We walked down the hall and I asked to be with her in the OR until she was down but they wouldn't let me. We had to say goodbye in the hallway and I gave her a kiss on her forehead. AK did the same, although she was entirely too disoriented to know what was going on. 



Annabelle and Lambie rode to the OR together. We checked into the surgical waiting area.


Half way thru surgery, we were called into a consultation room to speak with the doctors nurse. She informed us what the doctor saw while in the OR and we spoke briefly about game plans. We walked out of that small room in a daze. I didn't walk back to our chairs as before, they were too far away. I fell into the first chairs available and stared out the window in utter disbelief. For several minutes we didn't speak. AK mumbled "how is this happening?" .... "I don't know.. I ..... Don't understand.."


A little while later I heard another nurse mumble Annabrlles name and we jumped out our chairs to meet her. The nurse said we could see our daughter and we followed her back to post-op. I could hear her cries from the moment we entered the room. 



Annabelle did NOT come out of this surgery nearly as comfortable as she did the last time. She was disoriented and in visible pain, as expected. Her cries were raspy and her hands and body were trembling. Annabelle usually comes out of anesthesia and can recognize is within 15m from the time she's awake, however 10m later she still was not close to waking up. 



I climbed in the bed and laid her limp body across my chest and sang her song slowly to calm her down. She still wasn't coming back to us.. My heart wouldn't stop racing as it shattered "my baby is scared and in pain and she doesn't have a clue who I am.. I have absolutely no way to console her :("

After 40m we decided it would probably be best that we take Annabelle back to her room upstairs where she would be more comfortable and I could cut on Frozen. 
They transported us together on the bed until we got to her room and I tucked Annabelle in her own bed with fresh sheets and a warm blanket. She still didn't wake up or hardly open her eyes. While AK took care of logistics, I cuddled my baby girl and ran my fingers thru her hair until she stopped crying. We both slept for almost two hours together. When she woke later, she was happy. Sore and raspy but happy to see us.



We discharged late yesterday evening and checked into the hotel around the block. Annabelle was hungry but unable to eat much at all for dinner. I laid in the bed with her early and before we knew it, we were both asleep and it was 830am Tuesday. 



Today has been good. She asked for donuts this morning, and although she shouldn't have them, I have in and we found a Dunkin Donuts where they had a billion donut holes to choose from. She ate 1 and couldn't eat any more because of her tummy and throat being so sore. 


Her lower GI is still unsettled. She's been passing blood in her stool and in her diaper, as expected from surgery but otherwise I think she's recovering well. Her throat hurts but she doesn't seem to be developing a cough as she does often times after intubation. She is very weak and hasn't walked much at all since Saturday.. We aren't pushing it though and just letting her lay in the stroller or we carry her when we're doing something. Her little body needs the rest. 


We saw the Geneticist today.




 I will update later on our conversation but at the end of the visit, he ordered fresh labs outside of the numerous  blood they took during surgery. The moment I told Annabelle we needed to do labwork and pokes, she broke down. The largest crocodile tears you've ever seen and again pleading for us not to take her. She was scared of everything, she panicked every time a nurse came in the room, she jumped any time we moved her stroller. She covered her arms as tightly as she could. She begged to go home as many times as she could repeat the words. 



We headed towards the lab where all hell broke loose the moment we were escorted to our own room. I have held this baby down for more tests, procedures, needles and pricks than I care to admit - but I have to say, I have never ever ever seen her act the way she did today. She hit a major fight or flight moment and lost all control and faith in mommy and daddy. She screamed to the top of her lungs and thrashed her body around to get away. I apologized multiple times to the nurse as I tried holding Annabelle down. It was nearly impossible. We ended up moving to another room where I could lay her on a bed vs holding her in my lap. It was easier to retrain her there. After a few minutes looking for a good vein, they made the stick. She dug for nearly 20 seconds until blood began to move. As soon as the blood began filling, the nurse let the needle go and turned away to read the tubes.. The nurse then got frustrated with Annabelle for yelling Bc she was apparently pushing the needle from her arm. I'm not a nurse but why she didn't just hold it there is beyond me. Soon, the blood began to stop and the nurse and her assistant argued over what to do next. AK and I stared at each other in disbelief as they dug in her arm and we held our baby down. 
They pulled the needle and I room Annnabelle out of the room. We also needed a urine sample as well, so I took her potty as I tried calming her down. She could hardly catch her breath and wouldn't look at me at all. She just kept repeating that she wanted to leave right now and that we are mean to her. We don't love her and she wants to go home. My heart was broken. I walked her back into the room of hell where the nurse and her assistant were waiting for us to return. It was time for another shot at getting the rest of the labs. 

I stood on the verge of tears and told AK I needed to walk away. I am so tired of being the bad guy that consistently disappoints my child. I am supposed to protect her from harm, be her advocate and voice. But far more often, in her eyes, I am the one that holds her down or subjects her to pain myself. It's taken me nearly a year to build the trust back up with Annabelle, for her to believe that I do love her and protect her. That all washed away like a flood today as she looked at me past the nurses holding her down while she screamed to the top of her lungs. 

I couldn't stay on the other side of the room long, they needed the extra set of hands to hold her legs and hips down, so I stepped back in. 

6 IVs and blood draws in two days, Annabelle was DONE! I picked her up and tried placing her head on my shoulder and she wiggled down, "NO mommy!". She climbed in the stroller on her own and we walked away as she sniffled.


We asked repeatedly, do you want me to hold you hunny? "No!"
I love you Annabelle. ..... Nothing........ I want to go home, now. 


AK is the only one warmed up to her right now. She's visibly heartbroken and exhausted. We are also exhausted, emotionally and physically, over what this week has done to us. Together, as parents of both out kids. It's hard. This crap is HARD!


Annabelle is asleep now and we promised to take her to the zoo when she wakes in the morning. Maybe tomorrow she will forgive us :'(




















Monday, June 29, 2015

First night in Cincinnati

The night was very long, as hospital nights are. Annabelle had multiple impressive BMs (sorry for the poop talk - it's our life). We changed sheets and diapers about every two hours and ultimately ended up just leaving Annabelle in a diaper on chucks pads and a blanket. 

We did have an emergency around 130am - Lambie and the pillowcase became victims to the GI blowout disaster. The meltdown that insued was heart breaking. After hand washing in the sink, I decided to make a dash for the nurses station where they put in all connections and found a washing machine and dryer. By 4am the pillowcase and lamb were saved (praise Jesus!)

AK took the first shift of the night until about 1am and then we switched. We were both exhausted but both needed some amount of unbroken sleep. I took the next shift and slept in the bed with Annabelle for the rest of the night - praying to avoid becoming the next poopy victim. 



This is the longest we have ever gone without feeds or nutrients - the last time we avoided feeds, Annabelle lost consciousness at hour 5 and spent the next week in the ICU. She is doing much better now than she was then, but at 22hrs without any feeds, we are really beginning to push our luck. Annabelle is becoming weak and can no longer stand. She cannot sit up too high in the bed - were praying with everything that she makes it to surgery at 12pm. 

She still has not had clear stools however. Until we get her completely cleaned out, we cannot do surgery. The nurses performed another round of rectal irrigations this morning. Annabelle was trembling as she knew what was about to happen. The pleading as she looks deep into my eyes and begs for it all to stop is becoming increasingly harder to stand against. While holding her tightly in position this morning during the procedure, listening to her screams in my ear - it hit me.. As much pain Annabelle is in each and every time she has a BM at home, no matter how soft it is - it's always excruciating. This massive tube they're pushing into her bottom has got to be painful. Her little body pours sweat and chills during the procedure as it takes her breath away from the pain. Fortunately our nurses are very quick for the procedure and it only lasts about 15min. 

Annabelle is so brave but yet so defeated in this battle. She's cried a lot this morning to go home and tell me how much she does not like to see doctors all the time. My heart aches for my baby. My heart crumbles for my husband as I watch his face in horror over what's happening to our daughter. 

Pray for strength today friends. Strength to Annabelle that she remains safe and stable to the OR and makes it the entire surgery without issues. Pray for AK and I as we move to our next appointments this morning to meet the brains behind this disease. 


http://www.youtube.com/watch?v=h1OUSK6B5u8







First night in Cincinnati

The night was very long, as hospital nights are. Annabelle had multiple impressive BMs (sorry for the poop talk - it's our life). We changed sheets and diapers about every two hours and ultimately ended up just leaving Annabelle in a diaper on chucks pads and a blanket. 

We did have an emergency around 130am - Lambie and the pillowcase became victims to the GI blowout disaster. The meltdown that insued was heart breaking. After hand washing in the sink, I decided to make a dash for the nurses station where they put in all connections and found a washing machine and dryer. By 4am the pillowcase and lamb were saved (praise Jesus!)

AK took the first shift of the night until about 1am and then we switched. We were both exhausted but both needed some amount of unbroken sleep. I took the next shift and slept in the bed with Annabelle for the rest of the night - praying to avoid becoming the next poopy victim. 


This is the longest we have ever gone without feeds or nutrients - the last time we avoided feeds, Annabelle lost consciousness at hour 5 and spent the next week in the ICU. She is doing much better now than she was then, but at 22hrs without any feeds, we are really beginning to push our luck. Annabelle is becoming weak and can no longer stand. She cannot sit up too high in the bed - were praying with everything that she makes it to surgery at 12pm. 

She still has not had clear stools however. Until we get her completely cleaned out, we cannot do surgery. The nurses performed another round of rectal irrigations this morning. Annabelle was trembling as she knew what was about to happen. The pleading as she looks deep into my eyes and begs for it all to stop is becoming increasingly harder to stand against. While holding her tightly in position this morning during the procedure, listening to her screams in my ear - it hit me.. As much pain Annabelle is in each and every time she has a BM at home, no matter how soft it is - it's always excruciating. This massive tube they're pushing into her bottom has got to be painful. Her little body pours sweat and chills during the procedure as it takes her breath away from the pain. Fortunately our nurses are very quick for the procedure and it only lasts about 15min. 

Annabelle is so brave but yet so defeated in this battle. She's cried a lot this morning to go home and tell me how much she does not like to see doctors all the time. My heart aches for my baby. My heart crumbles for my husband as I watch his face in horror over what's happening to our daughter. 

Pray for strength today friends. Strength to Annabelle that she remains safe and stable to the OR and makes it the entire surgery without issues. Pray for AK and I as we move to our next appointments this morning to meet the brains behind this disease. 









Sunday, June 28, 2015

Waiting to leave!

I wish I had the time to post about the event and how incredibly grateful and happy we are at the turnout.. Let's just say that despite the weather, the event was better than I could imagine. The proceeds raised exceeded our wildest dreams and they were just enough for Cincinnati. What a relief of a burden it is to be lifted from our minds as we head to Ohio this morning. 

On the way home from the event, I received a text message that made my heart stop. It was he pilot for the first leg of the flights - he said turbulence looks to be moderate around the mountains which may cancel our opportunity to fly. With a house full of family and friends, we all looked at one another with huge eyes - blinking silently. I knew this was a possibility but I didn't quite have a backup plan for it in place. 

AK was leaving within the hour. If we couldn't make the flight the next morning, we would need to get in the car and start driving right away. I checked the commercial flights and there were very few seats available. 

After talking on the phone with the pilot, I felt comfortable enough to tell AK to get on the road without us and we would try for the flight in the morning. 

He made it until about 1am and stopped in W. Virginia to sleep. He has about 4hrs left of a drive before getting to the hospital. 

Annabelle had a comfortable night last night. I gave her some pain meds before she fell asleep. Madelynne fell asleep just as easily, however by 1am I still couldn't sleep myself. I crawled into Madys bed and slept with her the rest of the night. I already miss my big girl so much it hurts :(

The pilot texted at 7am this morning and arrived at the airport around 745a. We're at the airport now and flights appear to look good, however there is still turbulence in the path were headed. We are going to wait it out for an hour or so before we leave. Annabelle is snuggled in her stroller playing a game... She knows where we're headed but hasn't appeared to be upset by it yet. Fingers crossed for a safe flight this morning! I'll update when we get to WV. 














Day 1: Surgery Prep

The first flight was delayed for over an hour due to the turbulence over the mountains. When it was finally time, Annabelle was so eager to get on the airplane that she completely forgot the purpose of our flight (thank goodness!)

We walked to our plane and I joked about the intense security (none) as I sipped my topped off coffee (more than 3oz mind you) and no one checked my bags, hehe. 


The pilot helped Annabelle climb into the plane and buckled her in safely, he climbed in next and finally it was my turn to walk on the wing and climb into a tight 4 seater airplane.. Terrifying at first but would quickly become my favorite flight this far in life. 






I think Annabelle's favorite part of the flight was the headset as she carried a conversation 8,000ft in the sky. 


The flight was amazing. So very different from a commercial flight but exhilarating. Annabelle did a wonderful job for the first hour but quickly became nauseated and uncomfortable. I gave her some medications and within a few minutes, the rumbling sounds of the plane and vibrations rocked her right to sleep. She got a solid hour at least of a nap. I on the other hand froze my tush off (no one warned me that air circulates off th wing into the jet on these planes and apparently air way above the clouds is like ICE! 



We arrived in Clarksburg WV for our second leg. It was pouring rain, freezing cold and overcast. I couldn't wait to get out of the city.

 Annabelle needed to potty - I took her and of course she didn't go. We met our second pilot and quickly boarded the plane. Cincinnati had already been calling because we were running late, though each time I called back - I spoke with a charge nurse and admitting but the messages just never seemed to be getting thru (it ended up not being a problem at all). 

The second plane was significantly larger but very very dated and scared the crud out of me. Now that we're on the ground, I can say it was the wildest roller coaster and SO fun! Annabelle squealed almost the entire flight with her arms up laughing. She seriously thought she was at a theme park on a ride. It was wild but fun. 



AK met us with the biggest smile as we walked out of the airport. Belle was so happy to see her daddy. While on the road she asked if we could just go home.. That's about the time when it hit her where we are...... With that said, pray for us - it hasn't been easy since arriving in the hospital.

Admitting was fast and efficient. 



Once settled into our room, Annabelle began crying to go home. She begged for any opportunity to leave. 

Since we were already a couple hours late - getting settled was very fast. We began an IV within 20m of getting to our room. The first stick, where I asked her to place it Bc it's our easiest guaranteed stick for an IV - the nurse got it but couldn't flush the site .. It was just bad placement. Annabelle was crying so hard to stop finagling the IV site that they finally asked me what I would like to do. I asked "do you think it will work thru tomorrow night for the surgery..?" They both said, not likely. So I asked to find a better spot. God I hate making those decision.. Ones that subject my baby to more and more pain - but it is what it is and these are the things I knew the week would be about ..... Unfortunately. 



Soon after the IV was set and fluids began, I started talking with doctors and nurses. Our intake and consults began this evening. When she asked if I brought any paperwork, labs or pathology reports with me, I was happy to produce my bibles:



She took all my books that are slammed full of relevant medical records for why we're here (the others are all at home) and had a field day with it. We came up with a game plan and Cincinnati Childrens strongly encouraged we perform the prep with their speciality treatments ... We are on the inpatient GI floor and have all the best of the best nurses and doctors right here that really understand a kid with GI issues. 

We began with Golytley (sp) at 200ml/hr via gtube/pump. For reference, I never feed Annabelle a fast feed over 120ml/hr. But somehow Annabelle is tolerating it! 

Around 6pm we began enemas and she fought that, screaming her heart out to stop. As soon as it was finished she asked if it got the booboos out of her tummy.. I said not yet sweetly, she responded "when they're gone, can I eat pizza like my friends?" My heart skipped a beat. 



Child Life came by and brought Annabelle some coloring supplies and also a doll to demonstrate the next procedure they would do, a Rectal Irrigation. Talk about nauseating and miserable to hold your baby down for. She looks traumatized, and she is. Apparently we will repeat this 15m process every hour if her vowels do not start working better on their own (knowing my kid... This is a likely scenario that I hate!) 

I am exhausted and can't stop thinking about Mady. 
Annabelle keeps asking if she can eat pizza since she's come to Cincinnati and been tortured. Little does she know, the real fun hasn't even begun. 
AK is exhausted from driving for two days. 

But we're together and were committed to making this week every bit of what Annabelle deserves from it. We just need a little rest first. 



Side Note; this hospital is insanely state of the art and beautiful. The TV is the smartest, coolest thing I've ever operated in my life. All the rooms and the hospital in general are decorated so fun for children and geared towards the future and making a difference. 



The nurses are angels and I know we're in great hands. Keep us in your prayers tonight. Pray for courage and strength for Annabelle tonight and please say the biggest prayer for a safe surgery tomorrow. 

Monday:
9am appointment with GI
12pm surgery begins 






Waiting to leave!

I wish I had the time to post about the event and how incredibly grateful and happy we are at the turnout.. Let's just say that despite the weather, the event was better than I could imagine. The proceeds raised exceeded our wildest dreams and they were just enough for Cincinnati. What a relief of a burden it is to be lifted from our minds as we head to Ohio this morning. 

On the way home from the event, I received a text message that made my heart stop. It was he pilot for the first leg of the flights - he said turbulence looks to be moderate around the mountains which may cancel our opportunity to fly. With a house full of family and friends, we all looked at one another with huge eyes - blinking silently. I knew this was a possibility but I didn't quite have a backup plan for it in place. 

AK was leaving within the hour. If we couldn't make the flight the next morning, we would need to get in the car and start driving right away. I checked the commercial flights and there were very few seats available. 

After talking on the phone with the pilot, I felt comfortable enough to tell AK to get on the road without us and we would try for the flight in the morning. 

He made it until about 1am and stopped in W. Virginia to sleep. He has about 4hrs left of a drive before getting to the hospital. 

Annabelle had a comfortable night last night. I gave her some pain meds before she fell asleep. Madelynne fell asleep just as easily, however by 1am I still couldn't sleep myself. I crawled into Madys bed and slept with her the rest of the night. I already miss my big girl so much it hurts :(

The pilot texted at 7am this morning and arrived at the airport around 745a. We're at the airport now and flights appear to look good, however there is still turbulence in the path were headed. We are going to wait it out for an hour or so before we leave. Annabelle is snuggled in her stroller playing a game... She knows where we're headed but hasn't appeared to be upset by it yet. Fingers crossed for a safe flight this morning! I'll update when we get to WV.