Three weeks and still going down..

I hate to say, but we expected this to happen.

Annabelle isn’t improving, she’s declining and we are struggling to determine an explanation for it. There are so many variables involved that could explain her current condition that’s fogging our judgement on what is to blame. I hate that we began a new formula during a time she was possibly sick. I hate, hate, hate that. I expressed my concern when we made the change to Elecare, that this isn’t a very responsible time to do this but I also understood why it was so important to switch so quickly.

Annabelle’s cough hasn’t stopped, we’re now at week three of a persistent cough that has turned to choking and retching (trying to vomit). Her temperate has been fluctuating more frequently, and when it does, it happens very rapidly. I am very reluctant to offer any medication beyond her prescription meds, in fear it will irritate her temperatures and their erratic movement. She’s becoming more and more lethargic. She is laying down more frequently – laying on the couch/bed, not to be confused with sleeping, because that isn’t happening. She isn’t resting well. Her nights are completely variable if she is up crying in pain, screaming for help, moaning because she’s uncomfortable or if she sleeps the night thru and is groggy when woken in the morning. 

Madelynne’s birthday was this past weekend and we all had a wonderful time. We started Friday with Mady's spa day and Annabelle enjoyed herself a haircut beside her sissy. Saturday was party day! Annabelle however arrived at the party and persistently asked to go ‘Na-night’, AK laid her in the bed and she slept most the party away. She did wake towards the end of the party and tried playing for a short bit but it didn’t last as usual. She retreated back to anyone's arms that were willing to hold her and snuggled as she watched the party carry on. That evening she spent her time on the couch with no energy and cuddling with her ne-naw (my mom). Life moves on around Annabelle. She is the elephant in the room and we all watch with worry and pouring silent prayers as we see this beautiful two-year old unable to live the life she deserves. I live for the moments of watching her smile, laugh, dance around and have fun – but they never last.. not anymore at least. She only has enough stamina to play for a maximum of 30-45min and then spends the next several hours depleted of all energy and terribly uncomfortable. 

Sunday I made sure Annabelle stayed home with a big set of plans: rest, rest, rest. Do nothing but rest and sleep the day away. She did just that. 

Monday unfortunately wasn’t a better day. While I spent the weekend with silent worry while watching my daughter continue to decline, I wanted another perspective.. I wanted our nurse to spend some time with her, I wanted a second opinion, a skilled second opinion from someone who also spends a lot of time with Annabelle. It wasn’t a very good report. I missed several phone calls from our nurse that afternoon while I was at work, each message explained that Annabelle isn’t well. She’s very uncomfortable, nauseated, lethargic and even her stats are declining. We began a Pedialyte drip thru her tube Monday afternoon and have continued to push fluids by tube since she will not drink much of anything on her own. Her appetite is practically gone. We were challenged with the goal of three meals a day and two snacks to ensure Belle gets the calories / nutrients she needs but we haven’t been able to make that goal yet. Saturday she ate maybe a handful of food and hasn’t eaten anything really since. Last night I came home with a big, big surprise – I bought her some safe chips and prayed it would trick her into eating something. It worked. She ate about 4-5 of the chips and even a few bites of steamed veggies.. not much by any means but it was something, and for that I pray this is the beginning of a turn for the better. She drank maybe a cup and a half of fluid on her own yesterday, so that challenge is raised to two cups today. Fingers crossed!

We just don’t know what’s wrong. With her auto-immune disease in mind, part of me wonders if she’s just trying to recover from a virus she may have caught, or if she’s fighting a cold. Annabelle takes significantly longer than most others to fight anything that requires her immune system to work hard. My gut on the other hand has a really hard time not associating this with Elecare. I have read this chapter before, I’ve seen this side of my daughter far longer than I ever wished and I know just the moment when this behavior ended – it ended when we stopped feeding her Elecare. I have been told by so many Dieticians, nutritionists and doctors that Elecare is the safest nutrition for her and these side effects should not be associated with the formula. But I have a really hard time not making this connection. I want a REALISTIC explanation for why my child is so darn miserable!

I’ve left messages with our new GI for guidance, I wanted to wait as long as I could to eliminate any other variables that could explain why she’s struggling but at this point I think we’ve hit our threshold. Hopefully we make headway towards helping Belle feel better soon.I have no idea what that may involve, but I know the road we're on isn't working... here we go again - raising, caring and loving a child, completely blind and praying we don't do anything wrong. 

Prayers for answers ... please please please.

We're losing weight.

We had a meeting with our GI again this Wednesday and immediately following, we met with a new dietitian. She has years of experience with Metabolics and Genetics so I felt confident she would be able to guide me the best. Annabelle was doing well, but poor Mady was heading downhill with the yucky tummy bug that took over our house the last week. I was alone with both girls and zero patience for the day. I prayed this time in the waiting room, as I do every single time before we see a doctor and invest more time in their hands and at their mercy – only today, I prayed for patience to carry me thru the rest of the day. Everyone knows their limits. I hit mine.

Fortunately, thankfully, AK took off work early and saved us all! :the angels in heaven sing: We met with our GI and she reviewed the last several weeks with us. She was shocked the genetic team wasn’t able to confirm the diagnosis she was also convinced we were fighting, but this news led her train of thought down another winding path. 1^st , she wants a scope done soon. As soon as Annabelle’s little cough is gone, I’ll schedule an upper and possible lower endoscopy to again biopsy her GI system. This will be our third endoscopy in less than a year. I absolutely hate anesthesia (a fear I am learning isn’t going away) and the recovery after the scope’s. Annabelle always, always ends up with tracheitis (whatever it’s called.. her esophagus gets so irritated and inflamed we end up on steroids each time.. steroids = roid rage = unhappy, uncomfortable baby = no sleep = bitchy mommy. You see how this all intertwines now? Lol) I sadly, am looking forward to this scope for a couple reasons though. Mostly because I have introduced several foods into Annabelle’s Diet without any true confirmation if they’ve been safe or not. This is quite a reckless move with a child with Eosinophilic Esophaghitis and our GI agreed. She understood why I have done so and applauded the well thought out decision. But we both felt it to be the safest option to repeat a follow-up scope and see what our newest biopsy’s are reading at this point, compared to the last over the summer.

Consult With The Dietitian

Annabelle’s lost weight.. a lot. Fortunately, she’s continued to hang on the curve in the 50% percentile but she’s barely thriving. During the past year, she would suddenly start falling on the curve and that is scary (not growing in height or head circumference and losing weight), so maintaining isn’t bad. That being said, she should absolutely be gaining weight and she’s lost L Our goal was to grow at a rate of 0.8cm x month (I believe) and Annabelle’s height only moved at a rate of 0.34.

With her weight dropping as quickly as it is, we opened the discussions heavily into what could be the cause. During the last month or so, I’ve attempted to lower the amount of formula she’s taking by tube feedings in an effort to increase her appetite to start eating more meals of food with substance, like a normal kid would. (All this per the Geneticists & Dieticians orders last month). We lowered her feeds from 40oz x day to approx. 32oz x day. It’s only been the past 7 days that Annabelle has been on Elecare, so I don’t think that could be the culprit to the weight loss this quickly.

Annabelle has been eating a LOT, in my opinion at least. She’s eating more now than she ever has in her life. She eats a huge array of fruits and veggies now and I most recently added in white bread and pasta in an effort to fill her tummy better so she wouldn’t always be begging for food. Apparently it wasn’t working. Even with the amount of fruits and veggies Annabelle is getting, she isn’t getting nearly enough calories or value of nutrients in her meals to thrive. I was starving her L completely unknowingly, doing what I thought was best and as directed by other doctors, here I was again doing what is dangerous to my childs health and completely navigating it blind. THIS IS MY BIGGEST FIGHT / FEAR / PLEA FOR ANSWERS! This is precisely why I cannot stop begging for a diagnosis so I can better understand my own child so I don’t hurt her!

Here’s Our Problem With Nutrition:

The calories  that she were to get from food to gain weight, isn’t safe to be part of her diet. So we’re back to the formula as the main source of nutrition. We increased her formula intake back to where it was before, and also modified the way we’re preparing her feeds to make the formula richer with the fats/proteins/nutrients that Annabelle needs. (Increase from 22.5cal/oz to 30cal/oz) Our feeding schedule has shifted a little and involves more waking during the nights to hand new / fresh bags of formula, but that’s ok. We surrendered the idea of actually sleeping again a long time ago.

In addition to the tube feedings around the clock, we have also challenged her with the following feeding goals:

The goal is to get Annabelle to 1200 calories x day. 

• 8 servings of grains x day. ( 2 servings for each meal and 1 at each of her two snacks)
• 3 servings of vegetables x day.
• 2 servings of fruits x day.
• 3 servings of fats x day.

Annabelle is already failing the challenge from the point, the kid just has no appetite to eat this much! I am failing the challenge by trying to lower the amount of fruits and veggies (used to be 90% of her diet) and adding safe fats and grains. Im scared to death of fats and grains because they are easy EoE triggers. So we’re stuck at a tough place.. we need Annabelle gaining weight and thriving, that comes with eating. We cannot have her 100% reliant on tube feedings, because Elecare scares the begezus out of me and I fear if that is all her little body is receiving, we will end right back up where we were months ago and us losing our little girl.

Right now we are waiting. We’ve modified the formula and are trying our best to trick/beg/make Annabelle eat as much as she can during the day and also crossing our fingers her little cough goes away soon and we can schedule another Endoscopy. Once we have those biopsy results, that will tell us if the foods we have in her diet right now are even safe from an EoE perspective and if we can continue offering grains/fats, or if they need to be removed and we all meet back at the drawing board. Clearly, the goal is keeping Annabelle as safe as earthly possible until we have all more definitive answers.

The biggest downside of our 3 hour appointment, was granulation tissue. I swear I JUST healed it!! Monday evening her tummy and site looked great still. Tuesday morning the nurse said it hadn't changed and looked beautiful. Tuesday afternoon it looked like this. OUT OF NOWHERE!!! The GI wouldn't let us leave without treating it with a Silver stick and burning it off. No words necessary. :(

Possible Diagnosis

The other side of the conversations we were having during our visit was a plausible diagnosis mentioned by our GI. It’s called FPIES, Food Protein-Induced Enterocolitis Syndrome.. similar to Eosinophilic Esophaghitis as it is a body's reaction to certain foods. The symptoms and appearance of FPIES is very similar to what Annabelle has been demonstrating when we were exploring OTC. Lethargy, Blood Pressure, Body Temperature Fluctuations, Pain, Failure to Thrive, etc. It isn't a diagnosis that can be confirmed by testing or biopsy, the diagnosis is made clinically by exploring the symptoms the child has and by a knowledgeable GI that understands FPIES. This is something our GI is considering, heavily, and we will discuss later. My main question that I had was of course, "If this is FPIES, does that mean we will be able to wean away and lose the tube?" My stomach sank when she smiled and didn't answer me. I knew the answer at that time. She explained that children with FPIES usually will not come off their feeding tubes because their diet can never be nutritionally complete without the formula (hypoallergenic, made in a lab, medical food). I hated that answer.

At this point, I am not fully convinced but it absolutely does seem plausible. Mostly, I am just eager and purely focused on Annabelle's nutrition right now, I have little time to think about diagnosis #92340 that will only let me down. I want away from tubes. I want a normal little girl. I want her to be healthy. Mostly, I want to be able to breathe and know that I am not accidentally hurting my daughter in our care for her! I want to be able to take her to a restaurant tonight for her big sisters birthday dinner, and allow her to eat food like a normal toddler. Instead,she'll be wearing a backpack and I'll be forcing her to stuff her belly with more food although she already feels full. Gosh it just all feels so wrong and backwards to what life is supposed to be about! 

Mama's daydreaming for an escape..

Our family is in limbo right now. We're all being stretched in different angles with little solid ground beneath us. There is one thing we all have in common though, we all hate it.


The girls are working thru the adjustment of moving from the only ounce of normalcy they've ever had, their home. They're again sharing a room in a temporary bedroom with 1/10th of their toys/belongings. We have new rules, new schedules and adjustments. Annabelle is struggling thru even more adjustments, not to include the newest complete change in her diet. And poor Madelynne is 4 days shy of her 5th Birthday and battling a fever of 103/104 that won't go away. Our life is upside down.

What do you want to do when life is upside down.. with no end in sight? Well, for me, I want to run. Run to vacation! And that's exactly where my mind continues to drift during this chaotic time in our lives. Five months ago our life was in a ... hmm.... different kind of chaos(?) That was the time Annabelle was her worst. We had just switched her off Elecare and watched some of her very darkest days. AK and I kept Madelynne at school entirely too much - but with good reasoning, to shield her from the nightmare unfolding in our home. Once we began the new formula, our family began to emerge from the clouds. The light began to shine... and we followed that light, all the way to the Sunshine State! I asked all our doctors repeatedly, "do you think it's safe to leave.. I'm worried about Annabelle".. they all smiled and said "Whats the worst that could happen Ashley? She get sick and need a hospital? Or whats the best that could happen? She thrive, live, laugh and play in the sunshine? GO!" That's exactly what we did.





Our family exhaled, in the comfort of the home with some of the best friends that have been part of our lives for so long. Kristy and Matt, with their two beautiful blue eyed baby girls, Charlotte and Adele. We parked our family on their patio and couch, poured a glass of wine and watched all our babies (4 girls to be exact) play, laugh, LIVE and all fall in love with one another. That is the break in life that you need sometimes. When everything feels like it's moving in the wrong direction, nothing is going ok - sometimes you just long for that escape... and boy do I wish we could cash it in again!! We close our eyes..  back to Florida, Sunshine and Disney World we go....

Not all days were great, I didn't promise that. 

But a crummy day walking by the ocean is still better than a day in the gloomy 4 walls of home that we've been trapped in. 

 

Dance with me sissy... Let's twirl !!

 

My heart sank and melted as we experienced how much pouring LOVE Disney flooded Annabelle and our family when we met the characters. I would have never asked for an ounce of individual attention, but before I could recognize what was happening, the cast promptly paused the line for viewing characters. They escorted us separately aside to allow our family time with everyone together for far longer than I could have imagined. Madelynne and Charlotte thoroughly enjoyed the time playing games with characters.. Annabelle wasn't feeling well but she was over the moon happy to finally meet Mickey and Minnie. Mickey was the most intrgued, passionate and loving person. He/(she?) wouldn't stop flooding Annabelle with kisses and warm hugs..

 

 Until we see the next break in the clouds, the light ahead and the breath of fresh air.. we will close our eyes and drift to that happy place. My happy place is seeing huge smiles across my girls faces, watching them love, live, laugh, giggle, run, play and smile. 

We need sunshine and medical miracles in our lives.. I close my eyes to take me there.. I pray it's nearing the horizon..

 

Damnit, we're exactly where I didn't want to be!!

Just when things seem to have been going smooth and well for Annabelle, we change the game on her and it's been less than fun.

I spent a lot of time this week with several doctors and nutritionists, they have narrowed down the most likely explanation for the green residue in Annabelle's feeding bags and tubing. 

Since the formula she is on is missing some of the essential amnio acids and heavier in others, those levels that have been shifting for the last couple months are now so off balanced that they have produced this greenish byproduct that we're seeing flooding from her belly. Certain lab levels are thru the roof, while the others are becoming more and more severity deficient. 

The plan doctors have come up with, is exactly what I have been fighting against for nearly 5 months. 

They want to move her back to Elecare. I'm scared to death.. Terrified is an understatement!

The byproduct I'm seeing is not comforting at all, it's an outward demonstration of how incomplete and unsafe this nutritional method is - however, there is a specific image burned in my mind of my daughter when she was on elecare and more than anything in this world, I don't ever want to go back to that place!! But I don't have much of a choice... And doctors certainly are not offering any other suggestions or options for us to consider.

Wednesday night we began to transition into elecare; 1/3 elecare to 2/3 BCAD/Anamix. Her temperature spiked.

Thursday, same thing. At each feeding she would spike a fever and become very clingy until the feed was over. Thursday morning, Annabelle was in a great mood and we had a wonderful start to the day, by the afternoon she was struggling to keep balance and stay awake. She would have moments of laughing and play but they were followed by immediate rest.. Coughing and choking to vomit, shortness of breath and heavy fatigue.

It's such a tough time, also, to gauge whether or not this is all the formula change or a side effect of this allergy/cold yucky stuff she has going on. I've spoken with our pediatrician , aka god-sent-angel, and she clarified that Annabelle likely sounds to have the same allergy mess that everyone is experiencing in her office. We know from our last allergy testing that belles spring seasonal allergies were horrid and we all anticipated this happening each spring, I just overlooked that from last year and forgot to begin our allergy-meds-action-plan. 

By Friday we were completely changed over to elecare and at that point it became clear that Annabelle's behavior is not part of her allergies. I can for certain relate this patten to the elecare change. I hate hate this more than you can imagine.

She's awake every 2 hours crying, she sounds to be in pain but appears just to be very disoriented and scared, and pleading for someone to stay near her.. When Annabelle is in the hospital or struggling in any way, that's always her fall back behavior, she wants someone directly beside her, she wants to hold your index finger (crazy kid). When she's feeling well, she sleeps alone in silence and complete dark and likes it that way. When she's hurting, she doesn't want to be alone. Our nurse probably has a little to do with this too.. She never leaves Annabelle's side and watches and loves her unconditionally around the clock ;) spoiling her may be an understatement , but the kid deserves it so I'm not complaining.

She's taking a couple naps a day now, and each time waking up very clingy and emotional. She's so much more verbal now than she's ever been, but that comes along with her telling me repeatedly "mommy, love you - love you mommy, Annabelle's sick. Help me mommy. Help Annabelle, please." until you hear those words and have absolutely no way to help your child, you haven't felt crushed and run over with a truck of guilt. I'm deliberately feeding her every 2 1/2 hr with elecare and it's making her sick.... And I have no choice but to continue to do it! I'm so over this hell and illness that had plaqued my innocent child. I'm tired of being the one that has to continuously harm her!!!!! That isn't what parenting is supossed to be about! I get, sometimes we have to do things we don't want, when it's best for our kids.. But i think this is exceeding that rule.i hate it!

It's 10am and she is already back in bed. Mady woke up twice last night vomiting, which then throws ak and I into a panic. Our girls are sharing a room and Annabelle can't afford to get sick - so 2:45am turned into a strategy of isolating mady from Annabelle and ourselves, and getting belle back to sleep, mady comfortable and my nerves at ease from fear. 

At this time, I need to thank my ridiculously incredible side-kick husband, the one who rebounds out of the bed faster than I do at the sound of dry-heaving lol. He changes bed sheets and refills sippy cups while half asleep all night long and still let's me sleep in on the weekends when he's exhausted. Last night was no different, and today were both dragging. Hopefully the girls both get plenty rest and prayers Annabelle can continue holding it all together until our appointment this coming Wednesday. At that time we will reasses the elecare and how it's working (currently: not working in my opinion!) I pray we will be given a better option at that time, Annabelle cannot fall back into the place she was this past fall. 

http://superbabybelle.blogspot.com/2013/11/weve-made-it.html

Right now I am living my biggest fear. We're back on elecare, Annabelle is showing clear signs of fighting it, and mady just brought a virus into our home. Dear lord, put these children in a bubble, please!!!