Monday, September 30, 2013

Hopkins has stepped back up

I spent a lot of time last week pulling my hair out and struggling to find the most simplistic, fastest most efficient way to bring Annabelle to a diagnosis. Im scared to death to invest the time into reinventing the wheel purely because of insurance regligance.. but if it's what I need to do on my own, and put forth all the leg work - I'll do it without blinking. Because really, we don't have time to sit around and blink or think about what's next.. like a gunshot , we need to move as quickly as we can into whichever direction we need to run.

I spoke with our pediatrician several times and we framed a plan together. I called CHKD and asked to speak with someone in their Genetics team and explained our situation. Here's how that went.
  • We can absolutely see a geneticist. However, the process of course is legnthy - and even if it takes only a few weeks to be seen, that is still a lost few weeks without answers.. so in order to expedite the process....... :
  • I need to have our pediatrician order all the lab work and tests that Johns Hopkins has already ordered and also whichever tests they have determined need to be ordered next. (I didn't know my pediatrician could do this!)
  • Therefore, I need to call Johns Hopkins and figure out just which tests these are that Dr. Young needs to order.
  • In the meantime, I will work to have all the records, notes and assessments documented from Hopkins Genetics team moved to CHKD so they can begin to look at her case. 
  • As soon as the tests are in from the bloodwork, at that time I can get in right away with a Geneticist at CHKD, WITH all my records AND tests and make it the most efficient visit with them to begin to *fingers crossed* formulate a game plan / diagnosis / treatment(!)
I called our pediatrician and she nearly jumped thru the phone with excitement. She also had news to share about the insurance issues.
  • Medicaid does not cover anything at Hopkins because they are out of the state of VA. They will not cover anything at all moving forward.
  • She called United Healthcare on my behalf as our pediatrician and pleaded her case as to why this child needs this testing performed ASAP. To both our surprise, United Healthcare agreed to pay for the Genetic Testing(!!!!), however, they will not do it at Hopkins because the hospital is out of their network.
  • United Healthcare only covered our last visit to Johns Hopkins because we were considered 'traveling' and it was charted as an emergency visit... very different from a scheduled Clinic visit.
I understand now what has been going on. Frustrating yes, but a sigh of relief to know that at least they are now on board to follow thru with the testing.. we just need to figure out how to do it.

Now I just needed to speak with Hopkins and begin to move everything. . . . I called Hopkins and explained my plans. Immediately I was transferred to a Genetic Counselor. The lady that I spoke to was extremely soft-spoken and sympathetic. She began to apologize repeatedly for the confusion on the scheduling departments behalf. She explained to me that under any circumstances should I have been told there would be a delay in scheduling Annabelle based on her condition, I agreed... but... there is also this insurance thing that has been holding us up. She asked what was happening and quickly disregarded the concern. I informed her of my plans to move Annabelle back to CHKD where insurance would follow her in the state of Virginia and she advised me not to do that because of the amount of time we would waste moving everything, "I agree, and I do not want to move Annabelle's care, I want her with Hopkins, I want to continue testing - but you have to understand that I have been calling and received the run around for nearly a month. My daughter doesn't have months to continue to wait to be scheduled. We don't have the money to pay for this testing with cash. We barely have enough money to continue taking off work and making the Maryland trip! Above all, we need answers, fast and I am pleading and begging anyone that will listen to her desperate mother to help us. If CHKD is willing to do so immediately - that is who I need to follow, please help me move forward at Hopkins, or help me make the move to CHKD - regardless, we need to move and fast."

She paused for a long moment and asked quietly to talk with me about Annabelle's current condition and what changes have been made since we were last seen. I explained the placement of the NG Tube at their advice and the continued to decline. Not a fast decline, but definitely not much improvement like I prayed I would see. She apologized to me for what was happening to my daughter and began to speak words that made me both sick to my stomach but promised me hope on our journey. "Mrs. Bishop, I do not want you moving Annabelle, please hear me out. I am so sorry for what your family is going thru and to hear about Annabelle's condition - however, I want you to know that within this department, we have seen many 'Annabelle's', we feel as though we have a finger on what is happening to her little body. We continued testing, I believe we will find you a diagnosis. We have treated many of these same cases and would feel best to continue to keep her in our care at least until we can place a diagnosis and treatment for her." I exhaled and smiled the biggest sigh of relief. For the very first time I thought to myself "Oh my gosh, Im not alone! There are many more of me and Annabelle's out there!".. then the guilt hit me, "Oh no.. there are many more Annabelle's out there... my God I don't want ANY one, ANY child having to live this! :( " Once she explained the situation and their experience already with this type of condition, I knew immediately I cannot move Annabelle - the best chance we have to helping her is by keeping her in the hands of those that have experience dealing with this already. I agreed with the Genetic Counselor "Thank you. I will, I will keep her at Johns Hopkins. You tell me what I need to do and we will be there."

I was transferred back to scheduling and he confirmed more of my insurance information and assured me that insurance would be handled from here on out with Hopkins and that needs to not be a worry that I carry with that hospital any longer. He then read the most beautiful words, "We want to see you next week Mrs. Bishop. 1:00pm, a team will be waiting for you."

Thank God, we've made headway! We've made progress! and poor Annabelle couldn't escape my tight arms fast enough, the moment I wrapped her in them. This weekend was the break in the clouds that my sanity and stress needed. I felt energized (somewhat). My nerves are still shot and I no longer have any control over them.. but at least I didn't find myself in a sulking pit of sadness all weekend. I found myself outside and enjoying life with my little girls!

We went to the State Fair Saturday. I was truly worried to death about the trip. I packed half a pharmacy and parked super close in case we needed an emergency escape. As we walked around, I scanned and placed every single paramedic and medical personnel I could find 'just in case'. Annabelle did alright. She was tired and sat in the stroller 99% of the time. I took her on the Ferris Wheel and she cried until she gave up and laid her head on my shoulder and just watched the world around her. Annabelle enjoyed seeing the Animals, she was a bit surprised when she met a real-life cow for the first time.. I don't think she believed me when she recognized that a cow was not the size of the picture in our books at home.. in fact, a cow is much larger! :)





Madelynne had a wonderful time at the Fair. I was a bit disappointed that Annabelle couldn't have more fun, but this is her life. She was just too tired to enjoy much and that's ok. At least she had a better scenery than the four walls of our house and Mady was able to get out and run her little heart out.





This Week so far


Monday we have an appointment with Occupational Therapy to conduct an assessment to address Annabelle's continued therapy needs. There are a few things the Speech Therapist has addressed we need to have assessed, and I also would like to begin Annabelle in Feeding Therapy. She is still not eating well at all. On the days she really has an appetite, she cannot eat an apple and sometimes potatoes without spitting most of it back out to take another bite - then repeating the process. She is forgetting the Chew-Swallow process and I have no clue how to teach that to her. AK and I are both scratching our heads. Who would have thought that 6 months without eating, and she would forget how to do so.. I would have never guessed this is where we would be.

Tuesday Annabelle has an appointment with Dr. Young to touch base in the office again and also address some skin pigmentation issues that I have been noticed appear more and more lately across her body. The picture is a bit difficult to really tell what I am talking about (it's much more clear in person, I promise).. but there are three spots on top of her leg and one around the side/back of her calf. Her skin forms these splotches of WHITE skin.. they start out very small and grow larger and larger. They're everywhere. She has several around the back of her neck / top of her back that began looking like these and have grown so large that the entire back of her neck is a white patch of discolored skin.


The more I read about Inborn Errors of Metabolism, this is actually a common sign. I don't know if that makes anything more reassuring or not - but at least it does solidify that hopefully were on the right path to the correct diagnosis. 



Wednesday Annabelle has Speech Therapy and a consultation with our Clinical Coordinator with the county / Health Department. I need to sign more paperwork and discuss a couple concerns and changes that I want to make with her care moving forward.


We still have not had any luck finding care in our home. My wonderful grandmother has been a god-send and is staying home with Annabelle each day, rocking her and loving her all day while I cannot. I pray every 2 1/2 hours Annabelle will take all her feedings and I can avoid having to leave work to give her a bolus via pump to ensure the feed is met. I hate having to pull away from work - I need stability in my life for more reasons than one!


Annabelle & Madelynne's vain favorite past time is playing with my phone and watching themselves in the camera to take pictures of them self or the other.. I quite often pick up my phone to find 35 new pictures taken.. most the time they're blurry, but these were actually pretty cute. (I need to ask her how she changed the settings, and perhaps she can give me a tutorial on how to work my phone .. )










Thursday, September 26, 2013

Plan B.. err....... Plan M, N?

I've made a small amount of headway and cleared a couple things with insurances as to why things are being brought to a halt.
  1. Johns Hopkins will not accept Medicaid completely, not as a secondary insurance or at all. Because we have VA Medicaid for Annabelle, they will not follow us outside of the state for a diagnosis. Medicaid will follow us for treatment outside of VA but not to explore a diagnosis. 
  2. That leaves us with United Healthcare. I still (and will always) continue to pay for a health insurance policy for Annabelle. I do not ever want to reach a point that she is denied medical care because of insurance reasons therefore I would prefer her to be covered by two insurance policies than reliant on only Medicaid. (That's working just swell for us now, huh? :insert sarcasm:) Because my employer does not provide me benefits, I pay for a private insurance policy that I purchased for myself, Madelynne and Annabelle. It's a Virginia specific policy but should travel and follow us. United Healthcare is pulling the exact same string as Medicaid, they will follow us outside of the state for treatment but not for a diagnosis. 

My pediatrician called today to touch base. She was upset because I haven't spoken to her in a few weeks and I confessed that I was holding my breath to believe the NG Tube was fixing all our problems :( For the first few weeks after the tube was placed, Annabelle started doing wonderful. This weekend she began a downhill slide and it's only progressed faster since. Yesterday I received a call from the sitter that her behavior changed abruptly and it was worrying our sitter. Belle was playing and suddenly started to cry and wanted to be held. She didn't want to be moved or put down, she laid her head on her shoulder and clung tight completely emotionless. I immediately headed straight there and found Annabelle in the same condition. We brought her home and Annabelle found herself an early bedtime without much fight. She slept for over 12hrs. This morning Annabelle has remained the same way. Extremely quiet, she will not speak any longer. She doesn't want to play or be put down - she only wants to be held with her head on your shoulder and snuggled tightly. This isn't normal 2yo behavior. This isn't ok... and I had to acknowledge that.

I told Dr. Young how Annabelle has progressed over the last couple weeks and we both agreed that this temporary pause in her exploration for a diagnosis cannot continue - I need to pull myself back together and put my viking helmet back on because the NG Tube clearly did not solve all the problems (I need to stop lying to myself.. really). We discussed our options and the situation heavily about insurance companies and Hopkins Genetics. Dr. Young explained to me that if I am relying solely on United Healthcare to cover this genetic testing, that I might as well kiss the prayer goodbye - it's not going to happen. I need to figure out another strategy to get the testing done.
Here is what we've come up with:
  • Our best chance at getting this testing covered is by having Medicaid cover it. In order to do that, we really need to move back to the state of VA. 
  • Dr. Young will see if she can find out what tests need to be ordered for genetics and SHE can order the labs. I can go somewhere to have the labwork done and then when the results come in, I take the results to a genetics counselor to finish the process.
  • Dr. Young knows a genetics team and can pull some strings to have her seen, but the team is with the Health System (VCU). I didn't respond and she said, "I know hunny... we can slate that as Option C."
  • When I was at CHKD, I asked and was informed they have a genetics team at The King's Daugther's Hospital. Albeit with a waiting list but I wonder if I moved the Hopkin's Consult information to CHKD and wanted to meet with them as an Emergency Second Opinion (with the persuasion of Dr. Young on the phone with them too of course), if I could get in sooner and begin the process there.
Those are my game plans for today. I have a flood of paperwork to process for Annabelle and her health coverage. I have more bills that are spiraling from every direction and of course it's also that time of the month again that all her prescriptions are running out and we begin the Refill-Insurance Denies Prescription-I call and plea with insurance-Pharmacy needs prior authorization from physician-Pickup script and likely pay it's full cost because insurance continues to deny. It's always a fun circus we run around. Maybe when I head to CVS I will push some pennies to buy a box of hair color to proactively start covering all the grey this kid is going to give me ;)

Agency Directed / Consumer Directed Home Health
This subject is plucking my nerves. I learned yesterday that I can continue to use our EDCD Waiver services of 42hr x week for Annabelle for basic home health care IN ADDITION to the EPSDT services of 16hr x day, 5day x week to cover the administration of her prescriptions, vitals, feeding pump and oral vs pump intakes. It's a lot of paperwork and strategic planning on who and how often we have all the nurses in and out of our home to help Annabelle (this is the exact moment in which AK reminds me, 'Hunny.. you need to be at home. You need to stay home with Annabelle, eliminate all the traffic, germs and strangers in our house and be with our baby girl, she needs her mommy'. That thought process remains in my mind constantly and the guilt is beyond overwhelming. But the reality is that today I need to buy a $500 prescription, and that isn't possible without us both having a job. It's a sad, frustrating reality and choice we have to make on behalf of our family... it's the world we live in). Anywho! Because the EPSDT Waiver is Agency Directed, I cannot hire the nursing staff that comes to our house, they do. But the process is that they post the job and I am notified when someone picks it up - it's been three weeks and no one has picked up Annabelle's care/job. That leaves us with zero nursing care and the responsibility on me to come home each day, every three hours to administer her feedings and vitals when she cannot make the oral intake. It's insanely frustrating and again, my hands are so tied that I have to stand in limbo and just hold my breath!


Please smile and wave when you see me on the news, I can't promise that my crazy won't lead me to this point one day. It's your baby - to an insurance company, Annabelle is a number and an expense they do not want to incur. In our lives, she is our Annabelle Grace and my baby girl. There isn't a mountain too high that I will not climb as her biggest advocate to help her fight.



I do want to say thank you. To every one of you that continue to pray, support and love our family without judgements. We don't always have great days, everything isn't always beautiful and smell like roses but we are real - we are living just like each and every one of you.. we're just trying to move about this life as gracefully as we possibly can with heads held as high as we can hold them on that day. 
Thank you for loving our daughter, both our daughters. 
Thank you for praying for my sanity and the strength of our family. 
Thank you for the endless amounts of words of encouragement - I cannot begin to tell you how heartwarming and 'real' it is to read your words. This hell feels very alone and isolating most times. I feel like I am suffocating and no one knows it. Annabelle only see's our family in our little Chester home at 2am when she is suffering and expects mommy and daddy to help her and we cannot. But to know that at 2am when we are alone in our dark house, terrified with our baby girl and clueless as to what to do - the flood of security and humbleness that we feel knowing perfect strangers, family and friends are praying for us - sometimes is all that gets us thru those nights. I don't feel alone much anymore at all. In the darkest, most quiet nights I rest knowing Annabelle's name was spoken in someone's prayers that evening. I cannot pray enough for her on my own but the amount of warriors that you all are, supporting her will carry us thru this. I hope one day to post the most amazing news that we have a diagnosis. I long for that day and my heart beats so hard just thinking about it. Together we will make it happen, WITH Annabelle we will find a diagnosis. We just have to continue jumping thru the pathetic healthcare's hoops to get there.

Wednesday, September 25, 2013

Happy 2nd Birthday Annabelle


I don't know how to begin to write this post.. I don't know how much detail to share with perfect loving strangers that are following my daughter's journey. I want to keep this post about Annabelle and the celebration of her second birthday, but it's taken me almost a week to write because my heart and mind cannot stop sobbing. I never knew her birthday would come with such a flood of emotions. I never knew how hard of a wall I would hit and that it would take days and days to recover. Ive never been so bitter and disgusted with the medical world and heartbroken watching my little girl. Our family has been delivered the very worst of the last two weeks and they happen to have fallen around our little fighters birthday. So here is my attempt to share with you all the high level, happy highlights of our weekend with Annabelle Grace. 

Friday, September 20th. Happy Birthday Annabelle!

Thursday night when I laid her in bed and hooked her machines to begin the night feeding, I found myself sitting on the floor with my chin resting on her mattress watching her. AK literally almost had to drag me out of her bedroom, "This is the last day of our baby being 1! She will be 2 the next time we see her!" I was so proud of her as I watched her sleep, but at the same time so sad to reflect on her last 'year'. I could feel the sensation of sadness filling my body but I pushed it away.

Friday morning I was awake and ready for the day far before she woke up. When Annabelle ran into my bedroom, I smiled and turned around and immediately began to sing and dance like a crazy person, "Happy Birthday to youuu! Happy Birthday to youuu!!!....." Annabelle looked at my with a horrifying expression, literally screamed and turned around and ran away! .. I ran after her singing and scaring her the best I could. We finished our birthday song with plenty tickles and giggles. Of course she had no clue what this all meant, but I was determined to make it a happy day for the family. Mady sang to her over and over and before we knew it, the morning was wrapping up as everyone made their rush for the door to part in their separate ways.

Friday was a stressful day at work for me. In the midst of working, I received a phone call from Johns Hopkins. As soon as the number appeared on my phone, I smiled and jumped with anticipation. The conversation quickly led my stomach to drop so fast I wanted to be sick. "Im sorry Mrs. Bishop, your insurance company, both United Healthcare AND Medicaid have continued to deny genetic testing with Annabelle. We cannot schedule her and our physicians cannot continue any testing.. Im sorry". The conversation was much longer and I pleaded for help, resources, other ways to work around this, I even discussed the possibility of moving forward as a cash paying patient and from the tone of his voice, that isn't even an option as you have to have enough cash up front to begin the process... there is no way I can produce the amount of cash that they are discussing. If we do attempt to proceed as a cash patient, the process changes and the consult will need to be reassessed with another physician - to get on the books to begin this process, will take us into the middle of 2014 at the earliest. She'll be dead by then without help. The rest of the details are enough to make you sick to your stomach and I refuse to type them. I hung up the phone and stared at the wall in a daze. I continued to blink to move my mind from what just happened and refocus on work and I struggled. I felt like my entire life just took a sudden shift - a drop 50ft down faster than you can blink and I don't know what to do. My stomach was empty, my heart was POUNDING thru my chest and I looked down to see the hives spreading all over my arms. It's my daughter's birthday, and what kind of news is this?! I was disgusted.... but still, I was at work and needed to stay productive the best I could for the day.

When I got home that evening, I swept Annabelle into my arms and sang to her over and over. I needed to cry but I don't like my babies seeing that.. it makes them feel helpless as if they've done something wrong. I like to wear a smile for Annabelle, always. AK wouldn't be home for a while so I decided to get in the shower with Annabelle. I love holding her skin next to mine and standing in the hot shower together. She lays her head on my shoulder as the water hits her little back and I can let tears fall without anyone knowing. I enjoyed that time with my baby girl. I kept talking to her about being TWO and how much I loved her, how happy I was and how much of a blessing she is to her daddy and me. Annabelle understands far more than anyone gives her credit for. She is extremely intuitive and absorbs so much around her that you wouldn't expect. AK and Mady arrived home and Madelynne was BEYOND herself with excitement about the big surprise that night. She knew we would be going somewhere fun and couldn't wait! I told her to go pickout a princess dress of her choice from the playroom and get ready to go. We dressed Annabelle as Princess Jasmine and then packed all her things to make it out the house and an evening around feedings. I feel like we have to pack half our house to leave these days.. but I try to do it as discretely as earthly possible... any effort to pretend there isn't a tube on my daughter's face and she isn't so sick is my #1 goal.

Disney on Ice - Let's Celebrate!
Annabelle LOVES 'mouse', Mickey / Minnie Mouse. Grammy wanted to do something for her birthday and asked what she would like. I was nervous about the first birthday our family would celebrate without food / going out to dinner (it's what we always do. birthday person gets to pick the restaurant and everyone joins). If Annabelle can't eat, darnit we'll go to a show instead! It was a great idea and worked out perfectly. I couldn't thank grammy enough. She is my rock lately and keeps my head held high and spoils my girls rotten when I can't.



Both girls had a WONDERFUL time at the show. I was beyond impressed at how much they enjoyed the characters. To be honest, I was impressed at how well the show was myself. Annabelle only became restless after intermission and once we hooked her up to the pump. She runs a fever every time she is on the pump, and she gets so sleepy - if she isn't in her bed, she's restless. Still though, she was wonderful and never whined or complained. Both girls had a wonderful time and Mady was in complete awe :) I felt so blessed Friday night. It was the best distraction from the day's news. I didn't even tell AK yet, I couldn't. I didn't know how to say the words out loud and I knew he would get upset and mad and there isn't anything we can do. I didn't want that distraction, burden or worry to ruin our daughter's birthday evening or party..



Saturday. Party Day! 
"You're the Apple of my Eye"


The only food that is safe for Annabelle right now are apples. I couldn't figure out how to plan her a birthday around no food or a cake, and then it occurred to me that I COULD serve apples.. apple juice.. apple chips.. etc. I'll make it an apple party! Apple Of Our Eye! It was perfect.

Saturday morning was a struggle for Annabelle. She didn't rest well Friday night and she was miserable most the morning Saturday. I was becoming so worried about her for the party and prayed she would take a restful nap. My anxiety was rising Saturday morning also. I needed to tell AK what Hopkins told me and I knew it wasn't going to be a pleasant conversation. I needed to start getting my house together and packing things for the party, but my mind couldn't concentrate. I literally felt like I was walking around in a fog and separate from my own life. I needed to put my game face on though. I needed to smile on behalf of my daughters. I needed to make the most of the day for everyone and I did. I gave myself a pep talk in the shower and begged myself to pull it together and relax.. we loaded the van and dressed the kids as cute as they could be and finally started to make our way to Carytown, Cartwheels and Coffee for the party.

I wanted to be there early to setup and have everything ready because I knew my nerves wouldn't be able to handle anything last minute. I was so anxious to get the day finished. When we arrived, the girls quickly began to play and the laughter started.

With each little friend that joined us for the party, the noise level grew. and grew. and grew. and grew. It quickly turned into complete stimulation overload in my head but I looked around and everyone smiling, and the kids running and playing and laughing and knew I was the only one feeling this way. "My God Ashley, what is wrong with you?! Then it hit me. Like a flood or a sky high brick wall it hit me, "Annabelle did it. She made it to the birthday we didn't think she would. She is playing and laughing.. but dependent on a feeding tube. Dependent on medications up the wazoo. She doesn't eat anything beyond apples. All her systems are being affected so very quickly and ...... insurance has pulled the plug to continue to help her. It's cheaper to bury Annabelle than it is to spend the money to waste the time digging for a diagnosis when she may not make it to the diagnosis anyway. Omg, so is this the last birthday my daughter will have? Is this the last party I throw for Annabelle? Is this the last time I sing her song? Oh my God - please let this day slow down and please help my daughter!!" I felt so alone in the most crowded, loud room of Carytown. My mind was flooded with the reality of what was happening and I couldn't slow it down. I found Annabelle in the room and decided I would attempt to make myself look busy so people wouldn't speak to me as I watched Annabelle and refocused to how blessed and grateful I am. She ran over to her sissy and surprised her from behind with tickles. Both girls gave the biggest belly laughs and continued to run and play. My heart slowed down a beat.. I exhaled and decided that would be my focus for the rest of the day. WATCH my girls and let them be my comfort during this day. I can get thru this...










Soon it was time to do the birthday 'cake' and begin opening presents. Annabelle needed a feeding so it was perfect timing to have all the kids join and start doing other things so Annabelle could be stationary for her feed (and, I could snuggle her as much as I wanted).



The 'Cake' was made of cardboard boxes and within each 'slice' of cake that he kiddo choose, there were prizes inside. Some prizes were toys, bouncy balls, stickers, stamps etc. It was my best alternative at finding a way to keep the 'cake' tradition in a birthday party and blowing out candles, but something that even Annabelle can enjoy since she cannot eat cake. It was a hit. The rest of the kids enjoyed apples and apple juice as Annabelle started to open gifts.







As soon as presents were finished, the party time allowance was wrapping up and my wonderful friends went to work to dismantle the party in record time. They loaded my car as I sat with Annabelle because she was hooked to her tubie and then I paid for the party. I was so grateful for all the friends that joined us for Annabelle's birthday. The overwhelming guilt that I felt after everyone was gone was intense, that I didn't get an opportunity to thank everyone individually enough. Annabelle did wonderful though. She loved every bit of playing with her friends. She ran around and played her little heart out until she crashed from sheer exhaustion, lol. But she did wonderful. At the end of the day, I think all the kids were worn out and had fun. That's all that matters.


Once everything was wrapped up and our final bags were packed, I told AK we needed to go.. but of course life happens and Mady needs to potty. I told AK again, please, I need to get out of here... Mady was going potty so Annabelle decided to make one last lap around the play area for some last minute giggles. My patience was gone and I felt like I would unravel. I reminded AK again to leave.. Mady couldn't find her shoes. Finally I looked at AK and grabbed him, "I am NOT kidding, I am so serious when I tell you I. Need. To. Leave. Now!" He looked at me terrified. I've never said anything like that before but he could feel my arm and hand shaking like a leaf when I grabbed him, he knew right away something was wrong and told me to go outside and he would have the girls in two seconds and meet me. The car ride was miserable. Every time Mady would touch her balloon and it made the noise, my skin curled and I would yell at her. Annabelle was struggling and needed a nap so she cried and apparently dug at her skin until she made her legs bleed. I needed to escape and just run away. When we finally arrived home, I laid Annabelle in her bed to rest while Mady found a comfy place on the couch. We unpacked the car and I exhaled. Friends joined us for dinner and provided the girls with friends and distractions and I retreated to my bedroom to 'clean'. I needed to be away from all the chaos, the noise, life. I needed to exhale and my friend knew that. She sat on my bed as I cleaned and we just talked.. she listened and I complained and let it all out.. I needed to do so. Annabelle was beyond exhausted after a short bit of playing and went to bed without a fight. We started her feed around 8p and she handled it very well.


Around midnight Annabelle woke up, screaming. She was miserable and terribly upset. AK and I struggled to figure out what was going on. Poor Mady couldn't sleep over Annabelle's crying and so I carried her downstairs for a distraction and change of scenery (btw, this isn't as easy as it used to be.. gathering Belle and heading downstairs now involves tubes: feeding bags, pumps, machines, IV cart, etc.) We gave her another dose of Omeprazole in hopes that maybe it was only her reflux that was bothering her. After a while she started getting sleepy and we laid her back down. I tried to relax and go to sleep without any luck. I tossed and turned and stared at the wall with wide eyes. Annabelle woke up again, crying, and we repeated the long process. Again I laid back down and tried to get to sleep. Annabelle this time, bless her heart, fell out of the bed(!). In our house, when Annabelle falls out of the bed, it seriously sounds like a tree fell on the house upstairs, or Mady fell from the top bunk. She apparently hit her face on her IV cart when she fell and hurt her chin. What a miserable way to wake up :( Belle was having such a bad night and I had yet to get some sleep.. both of our frustration levels were running out. Finally I managed to fall asleep... I drifted into the worst dream of my life... a nightmare of my worst fear...

My dream:
Annabelle is doing well from the tube and thriving finally. She is starting to speak and walk and act as a normal little girl should, but the diagnosis process is taking far longer than we expected. Annabelle's health starts to fall again and the seizures reappear. My biggest fear begins to play in my dream: Annabelle has a seizure and will not wake up from it. We rush her to the hospital and she slips into a coma. While in a coma, we watch her systems continue to collapse faster and faster until the doctors join us and ask us to make a decision on Annabelle's behalf. I remember in my dream yelling, "This isn't real! Wake me up! This isn't my life, this has to be a nightmare! Wake me up!" AK is holding me and trying to explain, 'hunny, this isn't a dream - we've known this could happen... we need to help our daughter as selflessly as we can. We need to do what is right for her and Mady and the rest of us. She deserves to be in a better place!'. I was so upset in my dream and kept begging for it to all stop - but it wouldn't. I wanted to escape the reality but I couldn't. Finally my dream carried me to Annabelle's funeral and I saw my baby girl in a casket. She was dressed in comfy clothes, with her Gigi (pink and white PBK embroidered blanket) draped over her and Lambie tucked under her arm.

Sunday
The imagine of seeing Annabelle laying there was enough to catapult me out of my sleep and sit me straight up in bed. I grabbed the sheets and opened my eyes as fast as I could and then it hit me..... I was going to be sick. I ran straight to the bathroom and couldn't stop vomiting. I was shaking like a leaf but there wasn't a tear in my eyes, I was in complete shock and beyond ill. There's no way in hell I could go back to sleep.. I didn't even want to go back into the bedroom. I made my way into the kitchen and tried my hardest to drink something without luck. I tried eating something without luck. I sat on the couch in a daze and watched the sun come up and my house begin to come to life from the darkness of night. Finally I decided that if I was going to be awake, I might as well start cleaning and be productive, the best thing that could happen is that it could distract me! I scrubbed, and scrubbed and scrubbed everything in my kitchen. I was SO happy when I heard Annabelle's pump start to go off that I was allowed upstairs to see her finally. I wanted to wrap her in my arms so tight and feel her warm skin and watch her breathe. I unplugged all her tubing and gave her a kiss. Then I climbed in Mady's bed and held her until both girls were awake. It was Sunday morning and I felt like I was a walking zombie... walking thru never ending days of hell.

The day unfolded and we set the house up for a small birthday party for Annabelle with only family. I wanted to have the party at the park down the road but the rain had turned the mulch/dirt into mud and truthfully I didn't want Annabelle exposed to any more outdoor allergens. I just crossed my fingers and prayed family wouldn't bring germs into our house and leave them.
 
 The party went well and I found myself a lot more relaxed and less anxious than the party on Saturday. I was still flooded with nervous and anxiety but on a more manageable level. I was at home and in my own comfort zone.. I was also too exhausted to put forth the energy of being a nervous wreck. Annabelle had a good day. She played her little heart out with her cousins and friends in the playroom upstairs. Finally it was time to open presents, and just as we did the day before, I hooked her to the pump while she was sitting on the floor and opening gifts. Annabelle's little expression is priceless when she see's something exciting, she exclaims, "Ohhh! WOW!!!" with a big smile. She is grateful for any and every gift, big or small. I love it. I love watching her little face light up and I love watching her get spoiled as much as she deserves.



I do this constantly.. I was sad to stumble upon a picture of me looking like this, but this is honestly what I do almost all day - I stretch the tension out of my neck literally all day and night. I'm surprised this isn't what 99% of pictures look like that I am in.. exhale Ashley, refocus, collect and paint your game face back on.


 She did very well for most the day. She did get tired as usual but fortunately for everyone she didn't have any upsetting bouts of pain, screaming or needing to go straight to bed. She just lounged on friends and family for some extra snuggles and love.





Annabelle Grace is hands down, the strongest little girl that I have ever met. She has been a blessing in our lives to teach us just how strong we can truly be even when we doubt everything we're doing. Annabelle has taught me to be the best mommy I can to Madelynne and Belle both. She has taught me to show how sisters should love and support one another, how our family will stick together during difficult times. I have unfortunately shown my daughters what it looks like when mommy hits an ugly wall but they also learned how much daddy also supports and loves their mommy when she needs help. I cannot be the only one in our family that is a rock, sometimes even the strongest ones fall apart and it's up to the family to continue pulling us together. 
This was the hardest weekend of my entire life, hands down. But my girls and husband have pulled me thru it. 
This has been the hardest year of Annabelle's life and I have carried her to every doctor I can, Madelynne has snuggled her sissy when she needs it and colors her pictures when we are away and daddy always makes sure she is extra cuddled when he is near. 
This has been the most difficult reality for AK to watch his little girl, both daughters, wife, family, home, jobs, etc struggle because of this nightmare we are living and have been dealt with. He must stay our rock, he supports all of us individually and carries every ounce of the weight in our household that I do not to keep us balanced. He is the second half of me. He knows how to dress baby dolls, do laundry, pay bills and cook dinner while keeping the grass cut and lights on without asking for support. Annabelle's presence in our family is priceless. She was given to us by God and we have all learned from her in more than one way or another. Annabelle is strong, she is more loving than anyone you can imagine. Annabelle is opinionated, feisty, she is a fighter, strong-willed, sensitive and intuitive to everything and everyone around her. I couldn't have raised more incredible kids if I tried. You couldn't pay me enough money to believe that this is my life, these are my children and this is my husband. In the midst of all these things that I am bitter and angry because we've been dealt with - I also could not have been more blessed. We are so very blessed. AK and I are blessed with two beautiful, amazing little girls. We've made it two years with Annabelle completing our family and have grown so very much since September 20, 2011. Happy Birthday baby girl. What an incredible ride it has been and what a joy and blessing I pray it continues to be to watch you grow, thrive and teach us all the things in life that are important.

Thursday, September 19, 2013

Update

Let's hope the last few days have only been a sign of leaving behind the worst days in her 1-year age and tomorrow's birthday of turning TWO will be a new leaf and a happier, healthy and painfree year for Belle. 

She's stopped eating much on her own at all.
Annabelle has returned to the habit of taking a bit of food, storing it in her mouth and then spitting it back out before taking another bite. She doesn't chew or swallow anything anymore. 

She is having an increasingly harder time taking her feeds orally and not dependent on the pump to deliver her required intake. 

She's becoming more uncomfortable and restless at night. While her sleeping spells are definitely getting shorter, she doesn't seem to be gaining actual 'rest' from the times in which she is asleep. She is cranky for the most of the time during the day, she rubs her eyes constantly and needs to stop for a rest between every short spell of playing. I had to drag Belle with me to pickup some things this evening, she walked a short ways and I turned around after taking my eyes off her for a moment and she had pulled a towel from the shelf (bathroom/linens section), laid it on the floor and crawled herself into a ball using the towel as a pillow to try to sleep in the middle if the store floor. (Gross! ... & Sad... )

She's been vomiting a lot more lately and often times without reason that we are able to rationalize. Our house and cars smell like vomit and I don't think it will be leaving anytime soon, no matter how many times we steam clean every inch of upholstery.

The tape on her face is a royal pain and terribly uncomfortable to her skin. I can't find the right method of taping to keep the tube secure without moving and also not tear her skin to pieces. Well figure it out, but I feel so bad for her in the meantime.

On the upside of things, Annabelle is full of energy and attitude. I think she is gearing quickly into the age of two and not leaving a moment of feistiness and attitude behind! She's mesmerized by everything her sister does and is learning so much by following her lead. She loves pretending to be mommy and had a newly found obsession for Mickey Mouse and Winnie the Pooh, I love watching her light up when she sees things she recognizes and enjoys. I adore hearing her attempt to sound out new words, the speech therapist continues to relay the same conclusion after all her sessions "she will not initiate words on her own, she's bright and understands well but the communication is not there for Annabelle, she cannot put two words together and struggles to make a statement longer than broken mumbles and finger pointing." The therapist is wonderful and together we're hopeful that the feeding tube will supply belle with the energy and nutrition to begin learning new things. I believe it will happen soon, Annabelle wants to talk, it's just taking more time... 

Hopkins Update

I finally got the phone call today from Hopkins to schedule our follow up with Genetics. Unfortunately, both our insurances are dying the consult and any further testing. Genetic testing is extremely, EXTREMELY expensive and neither company is willing to support us to finding a diagnosis in this route. (They have also been declining past procedures too.. Brain MRI, Chest X-ray, etc). 
I spoke with a patient coordinator today and together she will work with genetics and possibly out other teams to determine a better coding method to conduct the testing and consults. She was doubtful it will work though.. Otherwise we will have the option to proceed as a cash paying patient. I can't even begin to fathom what kinda cash that looks like, if insurance is refusing to participate! Dear God something needs to happen soon!! 

Tomorrow is my baby girls birthday.. The hours counting down to the time of her birth is filling me with anxiety and joy. I cannot wait to spoil my baby girl tomorrow on her special day. She deserves every bit of it and her big sister and beyond ecstatic to give Annabelle the gift she picked out. :) 

Tonight we have many reasons to feel betrayed in life but tonight I am going to bed with a messy house and a humble, blessed heart for all we have. Ill never loose sight if our blessings..

Update

Let's hope the last few days have only been a sign of leaving behind the worst days in her 1-year age and tomorrow's birthday of turning TWO will be a new leaf and a happier, healthy and painfree year for Belle. 

She's stopped eating much on her own at all.
Annabelle has returned to the habit of taking a bit of food, storing it in her mouth and then spitting it back out before taking another bite. She doesn't chew or swallow anything anymore. 

She is having an increasingly harder time taking her feeds orally and not dependent on the pump to deliver her required intake. 

She's becoming more uncomfortable and restless at night. While her sleeping spells are definitely getting shorter, she doesn't seem to be gaining actual 'rest' from the times in which she is asleep. She is cranky for the most of the time during the day, she rubs her eyes constantly and needs to stop for a rest between every short spell of playing. I had to drag Belle with me to pickup some things this evening, she walked a short ways and I turned around after taking my eyes off her for a moment and she had pulled a towel from the shelf (bathroom/linens section), laid it on the floor and crawled herself into a ball using the towel as a pillow to try to sleep in the middle if the store floor. (Gross! ... & Sad... )

She's been vomiting a lot more lately and often times without reason that we are able to rationalize. Our house and cars smell like vomit and I don't think it will be leaving anytime soon, no matter how many times we steam clean every inch of upholstery.

The tape on her face is a royal pain and terribly uncomfortable to her skin. I can't find the right method of taping to keep the tube secure without moving and also not tear her skin to pieces. Well figure it out, but I feel so bad for her in the meantime.

On the upside of things, Annabelle is full of energy and attitude. I think she is gearing quickly into the age of two and not leaving a moment of feistiness and attitude behind! She's mesmerized by everything her sister does and is learning so much by following her lead. She loves pretending to be mommy and had a newly found obsession for Mickey Mouse and Winnie the Pooh, I love watching her light up when she sees things she recognizes and enjoys. I adore hearing her attempt to sound out new words, the speech therapist continues to relay the same conclusion after all her sessions "she will not initiate words on her own, she's bright and understands well but the communication is not there for Annabelle, she cannot put two words together and struggles to make a statement longer than broken mumbles and finger pointing." The therapist is wonderful and together we're hopeful that the feeding tube will supply belle with the energy and nutrition to begin learning new things. I believe it will happen soon, Annabelle wants to talk, it's just taking more time... 

Hopkins Update

I finally got the phone call today from Hopkins to schedule our follow up with Genetics. Unfortunately, both our insurances are dying the consult and any further testing. Genetic testing is extremely, EXTREMELY expensive and neither company is willing to support us to finding a diagnosis in this route. (They have also been declining past procedures too.. Brain MRI, Chest X-ray, etc). 
I spoke with a patient coordinator today and together she will work with genetics and possibly out other teams to determine a better coding method to conduct the testing and consults. She was doubtful it will work though.. Otherwise we will have the option to proceed as a cash paying patient. I can't even begin to fathom what kinda cash that looks like, if insurance is refusing to participate! Dear God something needs to happen soon!! 

Tomorrow is my baby girls birthday.. The hours counting down to the time of her birth is filling me with anxiety and joy. I cannot wait to spoil my baby girl tomorrow on her special day. She deserves every bit of it and her big sister and beyond ecstatic to give Annabelle the gift she picked out. :) 

Tonight we have many reasons to feel betrayed in life but tonight I am going to bed with a messy house and a humble, blessed heart for all we have. Ill never loose sight if our blessings..

Wednesday, September 18, 2013

I want my life back.

Annabelle shocked us all yesterday and took all her feedings orally during the day. This marks the first day that she didn't require any bolus feeds and thank goodness, because we also didn't have a tube to offer it if she needed one! All her medical supplies was finally delivered shortly after lunch time.

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. 

Annabelle deserves to have someone that will protect her, fight for her, comfort her from all the bad and make her feel better when she's scared and hurting. As her mommy, that is supposed to be me. Instead, I am forced to drive her to hospitals, hold her down for every procedure and now straddle her while she can't move and inflict the pain onto my child. This isn't right. This isn't the way parenting is supposed to be.. parenting is hard and sometimes you do things that you don't want - but this is a completely different level of life. Absolutely no child should live like this! Not one! This isn't fair! Annabelle needs a diagnosis immediately. We need help so we can stop all this madness. We need a diagnosis so we can find the very best doctors and treatment plans possible. We need insight and direction to know which path we are walking down and how to find the light at the end.. Annabelle has fought long enough, she doesn't need to go thru more - it's time. 
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.

Tuesday, September 17, 2013

Goodbye are the days of REM sleep

AK and I are so tired. We are beyond exhausted with no opportunity of finding sleep anytime soon. Fortunately, he requires much less sleep than I do. I am cranky if I don't get at least 7hrs of sleep, somehow he can wake up with a smile after only 4-5hrs.. I don't understand it but thank god for it!

Here is a high level outline of what our days look like:

9:00am - Annabelle is required to drink 4oz between 6am and 9am. If she doesn't drink 4oz, it must be delivered thru the tube as a bolus. The feeding needs to take place BY 9am, meaning 8:30a the feed should begin if it's going to require to be bolus-ed.

9:30am - 11am - Nap. When she wakes up, quickly encourage her to drink the required 4oz.

Noon - 4oz needs to be met or delivered as a bolus.

1:00pm - 2:30pm - Nap. When she wakes up, quickly encourage her to drink the required 4oz.

3:00pm - 4oz needs to be met or delivered as a bolus.

6:00pm - 4oz needs to be met or delivered as a bolus. Absolutely no feeds after 6pm, beside dinner / juice / water if she wants on her own.
Give Omeprazole and flush tubes.

**This completes the days requirement of 16oz x day.

7:30pm - Bathtime. Bedtime.

8:00pm - Begin nighttime feed. The goal is to start the feed after she is already asleep, fingers are crossed she falls asleep by 8pm when the feed needs to begin. 
Feed rate begins at 20ml x hour.

9:00pm - Adjust Feed Rate to 30ml x hour

10:00pm - Adjust Feed Rate to 40ml x hour

11:00pm - Adjust Feed Rate to 50ml x hour

12:00am - Adjust Feed Rate to 60ml x hour

1:00am - Make a fresh batch of formula and change her bag. Continue feed at 60ml x hour.
Sleep.

6:00am - End nighttime feed. Shut down pump. Disconnect tubing from Annabelle. Give Omeprazole and flush tubes.

**This completes the continuous nighttime feed and meets the requirement of 20oz x night.

This schedule is ideal and we attempt to follow as closely as we possibly can. Making Annabelle sit during her bolus feeds can be difficult because she is connected to either the IV pole or backpack that weighs her down. The tubing kinks constantly which requires you to pull your hair out while simultaneously digging to find the problem.. Fix it and wait for Pump Error # 9236420 only 15 seconds later. If Annabelle vomits, that ruins the entire plan for the day - we then proceed into figuring out if she needs Pedialyte vs Formula - slow rate vs. normal bolus. All night feed of formula vs. fluids etc. It's a royal pain and we are completely winging it as we go!

Last night for example was a new curve ball. When AK went upstairs to wake Annabelle and disconnect her tubing - he realized that at some point she pulled the tube out on her own. The pump continued to work and instead of giving Annabelle everything she needed all night, it pumped her mattress with the formula instead. We have absolutely no way of knowing whether or not she pulled the tube after 1a or 5min before AK walked in the door.. meaning I don't know if she received her full nighttime feeding or not! Oh the frustration!

Do I need to put the tube back in? Of course I do! Can I? Of course I can! ... but not without a tube. Here's the catch - our insurance company will only pay for us to receive 1 NG Tube x week, regardless if she pulls it out or not. I can't place the tube once it's already been used. This morning she is Tubie-Free. We get our first shipment of Medical Supply today and hopefully our new tube will arrive and I can place it before she needs a bolus feed. That means I am praying to all the God's she takes all her feedings orally until the tube arrives via UPS. Otherwise A: she won't be meeting her feed. B: I'll be taking her down the road to the local hospital and having them place the tube using one of theirs. I've called the insurance company and they will not budge on the amount of tubes they will provide us. I'm not happy. I tried to explain, "I am taping this tube as much as I possibly can, but she is TWO years old! The tape doesn't hold worth a crap .. the tube moves if she breaths, coughs or sneezes - I understand how it falls out so easily." It's also not weighted which means it's more likely to coil up around her stomach and able to come back up vs a weighted tube that will sit a the bottom of her tummy like an anchor and not move around so much. Insurance of course won't shell out for a weighted tube. Tis' the constant battle of my life!! 

Thoughts that cross my mind daily: 
-We will never sleep again.
-I will likely be wearing vomit / stomach bile on a daily basis for the rest of my life.
-If laundry was a burden before, I had no clue how lucky we were until now!
-We'll be broke forever.
-Our castle just got 50x smaller. We need storage to host all this stuff and have completely run out of space!
-We will NEVER sleep again.
-I hate insurance companies.
-Hurry up Johns Hopkins, we need answers soon!



Newly added items to the ever growing list of things we are learning to invest in:
-Mattress protectors.. a lot of them
-Extra sheets.. Annabelle (both girls) are spoiled rotten and have grown accustomed to only wanting to sleep on the softest of soft sheets.. I take the blame in spoiling them as babies.. now it's biting me in the butt.
-Insulated Feeding Bag so we don't have to change her bag at 1am each night.
-Syringe Rolls / Storage for all the syringes we have to travel with. (1 for medication. 1 for checking stomach contents. 1 for flushing tube before and after medication / before and after a feed).
-A smart bag of some sort to organize and travel with all these accessories needed to feed my kiddo when I have to actually leave the house.