Post-Op & Diagnosis Update

We've been home since Saturday evening and things are going .. well .. as well as can be expected. It's been the hardest adjustment for our family so far, and the steepest learning curve I have had to climb. We've been thru a lot in this family following Annabelle's lead, plenty medical supply and random routines have changed our home but this time it's been a leap of a change.

Annabelle is handling things 10x better than any of the rest of us likely would. She is still quite sore and is very cautious when doing things. She is terrified to situp from a laying down position.. I keep reminding her to roll over to her side instead of using her tummy to sit. When she climbs to our table, she forgets about her tubby when getting down and always snags the tube on the chair - which results in screaming. The natural instinct for a child with a tube hanging out their tummy and it hurts them, is to pull it out - and this is Annabelle's reaction, every single time. She used to acknowledge her NG Tube easily, she would point it out, show people and talk about it. It was present, there was no hiding it and even if it hurt her, it was in the open. The G-Tube has dramatically changed Annabelle's tubey perspective. She is very nervous about it, she does NOT like anyone to look at it, she doesn't want to talk about it and if you grab the first piece of supplies, she cries hysterically and begging "Noooo! Please!!" The whole process is still so new & the soreness is very present. We will find our groove soon and the pain will start to subside.

Our current routine is.... freaking nuts.

Belle is sleeping in the bed with me, and AK is sleeping on the couch. She is having a hard time at night and staying comfy without hurting her belly. She needs to be vented more often at night for some reason, and the Farrell bags just aren't doing the trick. In a great world, we would be racking 24/7 bc that seemed to be the best method but it's also the most stationary and messiest method.

During the day, we are feeding by pump every three hours, for one hour total at 100ml x hour. This process looks a lot like:

• Gather supply
• Now calm Annabelle down because she just realized what you were doing. 
• Make a new concoction of formula.
• Prime and prepare the pump
• Calm Annabelle down and avoid a tantrum & trip hazard around your ankles.
• Vent Annabelle with 60cc syringe 
• Change dressing around gtube
• Clean surface area around stoma (site) and remove all crusty, goopey, gross stuff.
• Calm Annabelle down again bc this hurts her like HELL
• Re-tape her extension tubing to her tummy.
• Re-apply dressing around gtube. Tape again. 
• Again, calm her down because this also hurts like hell.
• Finish venting. Place contents back into her tummy.
• Hook up pump
• Administer all necessary meds. 
• Flush tubing from meds to clean med port.
• Begin feed.

During feeds, sometimes Annabelle's tummy fills again with gas/air that cannot escape, so we pause the feed to vent her manually vs using the Farrell bag that should be doing that for her.. but don't. Sometimes the feed rate is too high for her tummy at that time and it causes pain, so it's hard to gauge what is going on or what needs to be addressed. Sometimes the feed makes her nauseated and she vomits. Most the time, feeds make her very sleepy, which makes her irritated that she cannot get comfy bc of the tube, which turns into a fighting-sleep-in-pain-ticked-two-year-old.


Up Side Of Things
 
The new formula regimen in finally fully in place and on the outside seems to really be working better than before. If you want to try to comprehend what we've done, here it is:

1. 40 Scoops BCAD1 (180gm)
2. 4 Scoops Anamix (20gm)
3. add water to make 40oz formula (24 calories / oz).

This is much more than she was previously getting. Before, we were making her formula at 15 scoops BCAD1 to 20oz water.

This diet now provides Annabelle with 976 calories / 32 gm protein x day.


Down Side Of Things

The consultation that was scheduled for today did not lead us with many answers. I spent quite a while on the phone with our doctors and they were disappointed to not gain much new advice from the consulted team. The intentions were all well, but they simply have never heard or experienced what we are with Annabelle. They all decided we will call this the Metabolic Annabelle Disease. I agree it's cute, but Google doesn't give me information on how to treat this Annabelle Disease, and that ultimately is what we need.

For right now, we have a band-aid of a treatment plan. We have absolutely no explanation for why what were doing is working, but it is.... kinda.. almost.. well..... it's working until we have to react to the next swing of irregular labs and make alterations again.

We need a diagnosis. We need to figure out what specifically is wrong with Belle so we can safely treat this disease. The one good part that was delivered from today, is that the consulted team agreed with 100% certainty, that whatever this is, is definitely Metabolic. So there, we at least have something semi narrowed down. It's related around Amnio Acids, possibly Organic Acids, its potentially an Inborn Error of Metabolism of some sort, we just have no idea which one. Something is not being absorbed, created or working properly within her system therefore everything is falling short.. each time we try to place a bandaid over what we believe is the biggest / loudest / most pronuonced issue, we seem to launch a new set of problems in reaction. We keep getting a little closer with treatment, but haven't hit the nail on the head yet. With every treatment plan we *think* is logical, we are still shooting in the dark, because we have no idea what is truly the issue.

Our doctor purchased a new computer over the weekend.. this now allows her to speak with physicians in other countries and translate between languages, I chuckled at her determination but I couldn't thank her enough for her efforts. Thank the heavens for our doctor! Thank you!

I myself, am looking and fast and as hard as I can within the United States to find Research Centers/Hospitals that have a focus in Metabolics and these diseases. I do not want a darn good Doctor, I want someone that is willing to investigate this on a research level. If Annabelle had something that were already printed in a textbook, we wouldn't even be having this conversation. Clearly this disease isn't recognized or big enough yet, that is our brick wall.

So we are trying our hardest, working our fastest and trying to move thru life.. thru December.. thru every hurdle life continues to throw our way so we can find a diagnosis and answers for sweet Annabelle. She deserves nothing less. She deserves to begin the New Year with fresh hope. It's a stretch goal, but as a parent, that is ultimately my goal. I want answers.... yesterday!

 

How are we? We're tired. But I do think you all deserve a tiny insight on our lack of being involved with friends and family lately. We're so detached from the world, that at times during the chaos, we feel lonely. We have a flood of people around us I know, but I pray you all do understand why we just suck as people during these last several months. You deserve better of us as friends and family... we;re trying, I promise. We're just so tired. Our days are crazy and finding a nurse is like finding a needle in a haystack. That's ONE of the many current battles: Annabelle gets 16hr x day of in-home nursing care.. but the trick is finding a company with a nurse (we like) that can do the job, wants to do the job, can travel and be here for the little pay we and the company can afford, but a company that also participates with our insurances. AK and I both work full-time and making that happen and keeping our jobs is going to darn near kill us.

Our schedule is insane too.. here is the VERY high level of what is going on in our home during the days, this doesn't include therapy sessions for Speech Therapy and OT, this doesnt include nursing visits for post-op, doctors visits, consults, labs every week or every other week, life in general, happy times, sad times, extra bath times because a tube has leaked/exploded on everything, grocery store run or just life in general.


7am - Stop nighttime feeds. Manually vent. Administer morning medications. 
8:45am - assemble supply
9am - Change dressing and begin bolus feed 5oz over the course of 1 hour.
10a-10:10a unhook Belle from feed.
10:30a Manually Vent
11am Manually Vent
11:45am assemble supply
12pm - Administer noon medications and begin bolus feed 5oz over the course of 1 hour.
1p-1:10p unhook Belle from feed. Get her ready for a nap
1:30p Manually Vent while she's asleep
2pm Manually Vent while she's aslep
2:45pm assemble supply like a ninja to be sure not to wake her
3pm - Change dressing and begin bolus feed 5oz
4p-4:10p unhook Belle from feed.
4:30p Manually Vent
5pm Manually Vent
5:30pm Take a bath/shower. Administer nighttime medications
5:45pm assemble supply
6pm - Apply new nighttime dressing and begin bolus feed of 5oz
7p-7:10p unhook Belle from feed.
7:30p Manually Vent and get ready for bed.
8pm Manually Vent and PRAY she's asleep and you do not wake her.
8:45pm assemble supply
9pm - Begin continuous nighttime feed of 20oz over the course of the next 10hours.
12am - Pause pump, manually vent, begin feeds again (do NOT wake the baby!)
3am - Pause pump, manually vent, change diaper, begin feeds.



I am not complaining by any means, please, whoever you are, do not take it that way. This is our life, and by any means is it easy or welcomed. But we know it could be 62049610x worse. We are so very blessed to have these routines, family and friends that love us, each other, a home and lights that *somehow* are staying on. We are very busy though, we are stretched thin but want you to know that we are so very grateful to have each and every one of you. I promise, my heart is worn on my sleeve and every person that has reached out to our family deserves a heartfelt, hand written note to share with you how blessed and humbled we are by your generosity of kind words, prayers and support. That is the way we carry our family, I would love to have the time to individually thank every one of you but please know that in our hearts I am pouring our love your way just as much as you're pouring yours towards us. One day soon, I hope to be able to do something for Annabelle and bring everyone together, I would love to host an event where I can hug everyone as tightly as I have wanted over this last year, and you do the same for Belle. She LOVES a big "SQUEEEZEEE" from anyone willing to give her hugs and kisses. She is a sweetheart and I know would love a fun day to spend with every one of you. In the meantime, please keep praying for us and understand just how much we love all of you but are so very busy at the same time. 

Day 4 post surgery.

Were still in the hospital and I have no clue what to expect from today. Annabelle should have been able to leave yesterday but she wasn't making progress as the doctors expected she would. I think her energy levels are being directly affected by this new nutrition issue were simultaneously having, which is preventing Belle from trying to move around and recover from the surgery. There are several goals that we need to make today if we are able to go home.

1) Sit up. Get up. Move around

Annabelle has literally laid in the bed for almost 4 straight days now and cries her little heart out if you try to convince her to get up and move. I made her move around a little yesterday and pulled her out of the bed to sit in my lap (that looked a lot like the same laying position.. But at least she was away from the bed). She did well moving but she spent the following several hours in significant pain and nausea. Annabelle HAS to try to sit and move soon.. I cannot take this kid home and strap her into a carseat if she can't even sit yet. 

2) Accept bolus feeds at our goal rate.

We're used to setting her bolus feed of 6oz to nearly 200ml x hour. We are currently only able to achieve 4oz and pacing it at 100ml x hour. 

3) Transition from racked venting to Farrell bags to vent her tummy. 

I really do not want to go gome and making a fort around my house with open tubes to vent Annabelle's tummy.. Utilizing a bag to contain the mess and horrid smell is much much preferred lol

4) Manage pain a lot better!!!!

We've even off morphine since early yesterday morning, but she is dependent on taking Motrin constantly and is in screaming pain and paralyzed without it.. I think the pain and fear of pain is what is preventing her from trying to get up and move around.

5) Bowels need to pickup.
She is still hardly moving anything in her GI system. Hopefully the length of time being off morphine will allow her system to pickup a bit and we can see some progress today. I think this too is a key player in how uncomfortable she is.. But really, what do I know?!

6) Get off IV fluids and meds

Annabelle hasn't eaten or drank anything more than sips of apple juice since Tuesday. Each time she drinks juice, we have issues with her feeds, venting, nausea etc. She doesn't have an appetite at all.. Which is anything but Annabelle but at the same time, I don't think I would either in her shoes!

Then of course there is the mile long list of things I need to accomplish as well: home health, medical supply changes and schedule shipment, find supplier for the new formula, follow up appt with Metabolic Lab ASAP, find a nurse and home health service ASAP, insurance, new prescriptions, dietician consult in home when we get there. 

Mady had a sleepover with my Grammy last night and is already asking to have another.. Personally, if I had my choice in it all, we would go home today before this ice storm hits with our entire family together. Fingers crossed we can get home today. Annabelle has a LOT to accomplish between now and then.. But I really don't want to be on the roads when the weather gets terrible.





UPDATE: We're walking! YAY! Discharge will be this afternoon :)

Amnio Acid Chaos

So here's what's going on outside of surgery.

Annabelle moved to a specialized formula about two months ago called BCAD 1, it removed essential amnio acids from her nutrition and based on her labs, this formula should not work. Like a miracle & unexplained by all her doctors, it's working like a charm on the outside for Annabelle. She is thriving for the very first time in her life. She is growing for the first time, talking, walking, eating with an expletive, gaining weight, understanding and communicating with us, her GI system is actually working and she's sleeping like a normal two year old. Everything looks wonderful, she's bouncing full of energy and happy, she never stops eating. 

We need to start working with a genetic dietician to get a better understanding and diet planned around this new nutrition were using. The problem is that we're working kinda backwards and a dietician cannot give us a perfect game plan without any diagnosis or explantation as to why this treatment is working in the first place. Our metabolic dietician asked two weeks ago that we repeat Annabelle's amnio acid labs to gain an updated perspective for how she's handling the formula. Those results came in this week... 

To try to explain in detail what's happening is incredibly hard to understand, even for me and I've been doing hours and days of bio-chem research and studying every element of amnio acid chains and what they all mean. I've itemized her diet and broken it down to a science and the pieces are all over the place.. Still not providing any explanations for what we're seeing.

Annabelle's Amnio Acid levels were before normal or slightly below, 6 weeks later, they are beyond thru the roof. Certain levels should be in a 20-45range: Annabelle's were 18 before and are now 777. The coinciding level that should follow it's lead and be equally as crazy high, is 31. Some levels are very low, but the vast majority are thru the roof. Monday was a hard day for us, Monday was a very very frustrating day for Annabelle's team. 

We've come a long way since Mondays news and have made many contacts. Doctors that are leading Metabolic research in CHINA have been contacted.. Converting emails between the languages has been quite the adventure for my doctor. 

A Genetic clinic for specialty metabolic pediatrics at Children's Hospital of Phildelphia (CHOP) has agreed to discuss Annabelle's case and reviewed yesterday. 

The research center in VA is currently leading our direction and we've made progress yesterday afternoon. 

Here's what we *think* is happening.

Branched Chain amnio acids are extremely low. Because they're removed from her nutrition, the body has no way of getting them.. The result is that Annabelle's body had begun breaking down its own cells and muscle to produce the amnio acids her body needs to survive. It's an ugly process, but incredible at the same time to see what the body does to preserve itself and will deteriorate itself at the same time. 

The issue is that her body is deteriorating at an astronomical speed and we need to figure out how to slow the process as quickly and safely as possible. The problem is that our options on how to do this are limited, and by limited, I mean - we have no clue what is safe or where the problem even is specifically to fix it.

We're working with two incredibly specialized centers in Richmond. They are working at lightening speed with our metabolic dietician. Together everyone has come up with our *fingers crossed* safest plan and change of her diet.

We are continuing on BCAD 1 and adding an additional formula called Anamix which contains protein. Both formulas are not nutritionally complete but together we hope they will provide what Annabelle's body needs to stop hurting itself, at least until we can determine a better plan. 

Mixing this new concoction is seriously as intense as a biology lab experiment. It involves so many measurements, gram scales, various measuring cups, temperatures ratios and expiration time lines. I wish I could write what making her formula involves but it would take an hour and just make your eyes cross. Fortunately, I have the nurses making it for us right now and they will share their secrets before we leave as to how to uncomplicate this as much as possible. 

We began Annabelle's feeds with the new formula mix today shortly after noon and so far she's tolerating them. Really, she's slept all day so it hard to say she isn't tolerating them too.. But I try to be optimistic any chance i can get.

Monday is a big day. There is a research clinic in PA for special complex children that study metabolic disorders in pediatrics and they want Annabelle's case. The lead physician and the director of the Metabolic Center, along with several doctors we are using in VA will be on the conference call Monday at 11am. I'm so excited, and so is our pediatrician. She is leading and coordinating this entire operation and I am so proud and honored to have her part of Annabelle's team. She's so amazing, I can't say that enough. 

The next steps on the nutrition standpoint are to give this formula regimen a try, repeat labs every several days and balance the formula intake with her diet she consumed orally and monitor everything strategically. I pray with everything that by following this new game plan, that we are able to narrow down some pieces to the puzzle. We do know, for sure, that Annabelle's health and presentation is directly correlated with her nutrition. We just need to piece together that part to figure it out. 

Call me Ashley, mom, chemist, biologist, doctor, nurse, er tech, nutritionist, geneticist, gastroenterologist, allergist, endocrinologist, neurologist, dietician, wife. I respond by any of the above mentioned names, unfortunately I only make the salary of the "Mom" position ;)

G-Tube Surgery

I know everything happens for a reason, but sometimes I really wish I knew what that reason was. 

This week has been so very hard for my family, in more than only Annabelle's surgery. In a sad way, it was a blessing to have the strongest members of our family together yesterday. We were all together for Annabelle, but we sat next to one another in front of St. Mary's Chapel, and there couldn't have been a better place for us all to be that morning during this tough time. Please, say a prayer for all of us, an open prayer for my families strength as we climb a huge mountain of pain.

 
The morning began in Pre-Op where Annabelle was unusually happy and full of herself. She was in a great mood, energetic and laughing as she played tag with herself around the waiting room at 6am. Nurses were in and out, AK navigated Annabelle and I conquered all the same repetitive questions. First admitting, then the Pre-op nurse.. Anesthesiologist.. nurse anesthesist.. OR nurse.. another OR nurse.. Surgeon.. his team-mate.. etc etc etc. Then there were the lovely nurses who came by to chat just because they thought Annabelle was the cutest thing to see bright and early in the morning (I have to agree), they asked questions and I continued answering them all the same. "When was her last seizure? What are her allergies? Is she on any medications? Which doctors does she see? What is her diagnosis? Why is she on this diet? ..... ughhhh shoot me."

A nurse joined our room because Annabelle's case caught her curiosity. Her grand-daughter is also a mystery diagnosis and her heart immediately melted when I told her "We can't find a definite diagnosis yet.." She said to me "Oh hunny, that's the hardest thing for a mother.. the medical world is cruel and cold when you cannot find answers for your baby" My jaw fell to the floor and I thought this woman was myself speaking those words! Her and I spoke for a few minutes and she stopped me mid sentence, "Let's pray", I smiled and agreed. She kneeled on the floor and took Annabelle into her arms and held her, she prayed and AK and I knelt down to the floor beside and we all bowed our heads. At the very end, I peeked my eyes at Annabelle and to my surprise, she was deep into prayer with this wonderful nurse, Annabelle had her little brow scrunched and her eyes tightly closed. She wasn't moving or squirming, she was a 2yo listening to the prayer for healing, direction, the right doctors, strength and courage. It was amazing to be part of. Afterwards, we all said Amen and I gave her a huge hug. A few minutes later I handed my daughter over to anesthesia and she was gone. The small waiting room was instantly quiet and still as I could hear Annabelle crying around the corner while they carried her away from me. My stomach sank, and there wasn't anything we could do about it but put one foot in front of the other and follow thru with the day we knew would come.

Upstairs, AK and I joined my grandmother and mom in the waiting room. The next 3 1/2 hours spent waiting were three hours I don't want to relive. The OR kept us up to date nearly every hour as things were progressing smoothly, but life for our family was still upside down. I stared at the chapel that haunts me. Only a few months ago I watched those chapel doors and couldn't bring myself to enter thru them. I knew at that time that I didn't have anything to say to God that is christian of me, I was so angry, bitter, mad, worried and felt alone. Today things have changed. I now know that there is no way I could have survived this journey with Annabelle without someone carrying us half the way. However, today I looked at those Chapel doors and I truly needed help. I hit a wall. Our family needed prayers answered and there were many, many things that I was finally willing to say to him. I walked inside and only made it two pews before I broke down. So much for wearing makeup that morning because it was all washed away within a matter of minutes. AK finally joined me after quite a while and together we struggled to piece together where life was for our family and to continue to dig for hope for our baby girl.

The morning just wouldn't end. Finally I got a call that the surgery was over and within minutes I was allowed to join Annabelle in the PACU. AK and my family couldn't follow but I didn't blink, I hurried the gentlemen down the hall to usher me to my baby girl.

She was hysterical. I have seen my Annabelle upset before, scared, anxious, fighting mad, and in pain.. but nothing compares to the intense pain she was suffering after this surgery. There were two nurses struggling to hold her down as she was screaming and fighting with all her might to pull the tube out of her tummy. She was like a furious octopus! I pulled the hospital blanket off her and wrapped her immediately into her own 'gigi' (blanket) and picked her out of the nurses arms. They continued giving her pain meds but nothing seemed to be calming her down. At some point her surgeon was paged and he joined our area in the PACU and assessed Belle, he immediately ordered something stronger and once it was administered, she was out. She would occassionally wake back up for a moment to scream and tug at the tube, but she would quickly wimper her way back to sleep.

Dr. Lanning (surgeon), explained how the procedures went in the OR. He discovered once he was inside and scoping her abdominal cavity, that Annabelle actually had a Hiatal Hernia that was the cause for the persistent reflux that has gotten worse over the last 6mon vs better like we would expect. The hernia blocked the diaphram, esophageal sphincter and flap to close her tummy from being able to function properly. Dr. Lanning made the repairs addressing the hernia and then proceeded to do the Nissen, he said the hernia had caused such damage in that area to her esophagus and stomach that it couldn't possibly heal on it's own or ever function properly. For this, I am so grateful to have Dr. Lanning doing this procedure and proactively addressing Annabelle's 'reflux' concerns. He was two steps ahead of us and I didn't even know it. The rest of the surgery went well and the G-Tube was placed after her stomach was secured in it's new position. 

It was quite an intense roller coaster while in the PACU, between the discussion with Dr. Lanning and managing Annabelle in my arms, I am so, so, so very grateful AK or my family didn't have to see any of it. As a mother, I never want to see my child in that condition again either, but I have seen her struggle more times than I wish to recollect - I have a very good gauge on Annabelle's pain levels and yesterday takes the cake for the wost I have ever seen her.

After an hour in the PACU, we moved to the Pediatric ICU Unit. Moving Annabelle from one bed to another was excruciating but with another dose of pain meds, she was able to relax fairly quickly. She was asleep, whimpering between every breath and moaning when she had the energy, but she was asleep.

The day was spent alternating between Torodol and Morphine every hour and a half.. within minutes of her needing another medication, she was moaning and crying for help. Until 4pm we had a tube to gravity drain liquid contents off her tummy.. of course in the midst of her fighting to pull the tube our from pain during one episode, she knocked the tube over and spilled all the delicious tummy juices in the bed. I don't need to offer details to tell you how nasty that was ;) After 4pm they racked her G-tube to hang above her in the bed to continue allowing fluids and air to release from her belly and stomach. At 8pm we began her feeds, extremely slowly at 12ml x hour.

The afternoon was managed well until late in the evening when air began moving around her tummy. Between the morphine making Annabelle jumpy, which resulted in her crying out in pain - or the air in her stomach, unable to escape making her arch around screaming.. it was quite a difficult several hours for Belle. Soon she was able to sleep and once she was comfortable again, she managed well thru the night with going 6hrs between doses of morphine vs every 3hr.

4am began the next series of pain episodes and these lasted much longer but didn't appear nearly as intense. At one point, while I sat wide-eyed at 4am watching the traffic on the roads, my heart stopped as Annabelle sat straight up in the bed. I moved like a silent ninja as fast as I could out of my blanket and chair just in time for her to realize what she had done and the pain to hit her.. that was all she wrote. I hit the panic button at lightening speed and together a nurse and I calmed Belle down and held her down until she stopped trying to pull the tube out of her tummy. 7am she was finally comfortable once again and she remained awake for quite a while.. albeit silent and monotone while watching the ceiling, but she was awake. Shortly before noon she actually spoke! It was so refreshing to see my little girl coming back to me.

We had a wonderful friend visit who has navigated this G-tube journey already - her little boy was so amazing and cautious when "playing" with Annabelle. They showed each other their matching tubies in their tummy and he called her is "Tubie Buddy", I melted.

The day is complete chaos and I haven't slept more than a broken hour total.
I have made more phone calls, arrangements, pulled so much hair from my head and forced a fake smile across my face for my daughter, it isn't funny. I am a southern sweetheart thru gritted teeth at many things I disagree with in his hospital, but overall, things are well. Annabelle is tolerating her feeds, they're still being administered extremely slowly but it appears she's taking them in.. while being vented of course. She cannot roll over, pick her legs up or sit up yet of course, she can hardly lay in a reclined position. But she is managing her pain more comfortably without morphine, so that's a good sign. She is still very crampy, there is a LOT of air leaving her tummy thru the tube but it's making her nauseated. I just asked for another round of Torodol and that immediately made the nausea worse. We started Zofran thru her IV in hopes she will be able to get some rest very very soon.

Begin our hospital commute. It's surgery day

The anticipation before a procedure day always eats me alive, yesterday was no different. Fortunately this time I kept myself insanely busy and distracted with work and couldn't be more grateful for the distraction. As always, there are so many phone calls and confirmations before surgery, and in Annabelle's case it also involves speaking with floods of dieticians that don't quite get her allergies and dietary restrictions. They also don't carry her formula in stock, so that responsibility stays on me to supply our own while we're in the hospital. Our worries were shifted abruptly Monday when we learned our abnormal labs came back. I will explain those in another post, the details are so very scattered and juggled between an array of doctors right now that trying to explain their meaning would be like typing Chinese... Which is coincidental since it's actually a doctor in China that is being consulted on the case :) anywho, keep the prayers generated there for answers soon and I will explain later.

Madelynne left last night for a sleepover with her grandma, we needed to be at the hospital at 630a and leaving our house in showing condition for another prospect buyer to purchase our home.. So having less people in the house at 6am this morning was best. Annabelle was as sweet as can be yesterday. We had a lot of packing and things to do so ak and I stayed busy, Belle took a fun bath that drenched the bathroom floors and fell asleep within seconds of her sweet head hitting the pillow at 7:15p. I wondered around the house with a nervous stomach and finally couldn't be away from her any longer.. I curled next to her in her bed, on the bottom bunk between Lambie and the wall and watched my baby girl breathe, twitch around and dream.

One thing that I didn't realize would hurt so much, is seeing her perfect, undamaged, soft little belly. I love her soft skin, I love how warm and smooth it is, I mostly love that on the surface, she looks so amazingly normal and that gives me a sense of hope when I can believe on the inside she is equally as beautiful and not flawed. This morning I will hand my daughter over to a surgeon once again, and her body will forever be changed. Never again will we be able to see her sweet little belly without a tube, or maybe even one day left with the scar that marks this journey that life is taking her thru. It hurts worse than I considered. It's a tangible marker that I will not be able to look past, it's a permanent scar and she is only two years old. Lord help me the day she's trying on bikinis with her friends at 13 and melting down at her body's imperfections. I hope she owns this tube, I hope she is young and resilient enough that she takes pride and confidence as she grows and lives this life she was dealt. Is it the end of the world? Absolutely not. But as a mother, this life is anything you want for your baby. When you learn you're bringing a child into this world, you say "as long as they're healthy", that has never been a more honest statement. I want so much more for my daughter..  I love looking thru her eyes and she knows no different. That humbles me and breaks me at the same time. 

Annabelle somehow escaped from her room this morning at 4am. She joined us in our bedroom dragging her pillow behind and climbed in the bed, "mommy, daddy, oh hi! Mouse, please?" Who doesn't smile at that? I'm so happy she woke early this morning,  we all needed the hour early snuggle to love her in the dark quiet of our home before what this day will bring.

We're a mile from the hospital. Annabelle is snoozing in her carseat and 93.1 is playing every heartbreaking song. I'm wearing my superwoman underwear, Annabelle is wearing her Super Tubie shirt and AK is breathing deep to prepare himself to care for us all. Prayers for us today, please. Prayers for skilled doctors, safe anesthesia, smooth procedures and little pain in recovery. Prayers for a successful Nissen, prayers the surgeon finds no further damage and concerns with her bowels. Prayers for a perfect button placement and new tubie. Prayers for patience and floods of love to carry us today. 

This article was sent to me the other day and I couldn't agree more with the writer. It's an amazing article and very honest. I wish I had read this before I discovered it's truth on my own. 

http://m.huffpost.com/us/entry/4350876

We won't miss you, NG-Tube

Before starting a new NG Tube, we always begin with a pep-talk and small prayer. Lots of kisses, apologies and "I love you so much baby girl, I promise it will be quick"

I have fought with everything that I have to avoid placing a tube in my daughter for feedings. Something about the inability to be able to nourish your own child is painful for a mother to admit. Finally I knew I needed to place my selfish perspectives behind me and recognize that my child needed help, help that I could not provide her on my own - help that I could only provide with the assistance of a damn tube.

A feeding tube has saved Annabelle's life. There's no easy or low-key way to say it. I never knew how malnourished she was until she was placed on a tube. Now on one hand, what we are putting thru her tube isn't quite the safest thing to deliver to her, but she's nourished, she receives all her medications without a fight, she is thoroughly hydrated after vomiting spells. The feeding tube has been an ugly, unwelcomed, blessing in disguise. I am grateful for it. But I also have never been so happy to see the NG Tube go away.



We will not miss you for a second Tubey. You're being replaced with a button, because Annabelle is so freaking awesome, she deserves TWO belly buttons! How cool is that?

• No more tape across her face. 
• No more bloody noses. 
• No more pep talks before tube changes where I fight tears back and Annabelle's pleads "NOOooooo Mommy!! Pleaseeee!"
• No more holding her down to place a new tube.
• No more holding her down to change the tape.
• No more holding her down to check placement (constantly).
• No more catching the tube on something that pulls her little neck/head.
• No more runny noses.
• No more droopy eye from the side of the tube.
• No more constant coughing from irritation.
• No more choking while eating.
• No more prednisone / antibiotics with every single tube change.
• No more ripping skin and tape off her face, nearly daily.
• No more leaking ports that result in

• Bed sheets changed daily, if not more.
• Changing clothes 2-3-4x a day.
• Furniture and carpets being cleaned daily.
• Carseats being uninstalled/installed constantly.
• HOUSE THAT REAKS OF STOMACH BILE / FULL STOMACH CONTENTS!
• No more painful stares from strangers.
• No more judgement from adults in public.
• No more questions from curious and scared children who see the tube.
• No more anxiety every time Annabelle see's me assembling new tube supplies.
• No more stress that the tube has moved and I cannot guarantee it's placement.
• No more wrapping the tube around Annabelle's neck during the night from rolling around.
• No more fights with insurance for additional tubes that they will not supply us when we are out.

Annabelle is amazing. She is a trooper and has adjusted so well to being a Tubey-Baby. She gets so frustrated in her cuteness when her Tubey is leaking or stuck on something, "Ohhhhh!! Tubey stuuuuckkkk!! UGHHHH!" She knows how to check for placement, she can open the tube, pull back on the syringe and gets excited when she see's tummy contents, she flushes her own tube and hooks herself up. She knows how to turn on her feeding pump and she knows what everything is called. In a way it's incredible she knows all these things, in a way it's painfully embarassing that she has to know all these things. But this is her life. This is what we do all day, everyday. She's owning her tube and showing us all a thing or two about her own little confidence as a Tubey. Madelynne also owns the proud sister of a Tubey award. If someone stares too long she pipes up, "That's my sissy, she has a tubey because she has boo-boo's in her tummy ok? It's how she eats!" I am so proud that she can answer these questions. Annabelle cannot speak on behalf of the medical device that is taped across her face, but she also doesn't recognize that she's different. Annabelle no longer see's a tube.. and I'm getting past it too. Everyone said I would, and it's taken 3 months, 85 days, and it's slowing beginning to wear on me. I dressed Annabelle in her Thanksgiving Day outfit, she ran into the bedroom to look in the mirror at the bow on her head and smiled so big, she announced proudly, "Ohhh Beautiful!". Nothing can bring tears to my eyes so fast as hearing my daugther's confidence when she has every reason in the world to doubt it. She's so much more resilient than I am, she's so much stronger than I could ever be. I wish I could be more like Annabelle and Madelynne. I wish I could see the innocence in the world as they do thru their eyes. I wish I could become oblivious to all the harsh, crued, judgement and only see a beautiful girl in the mirror wearing a gorgeous bow and not a tube that no one else has to wear. Children are so very amazing.

Placing a tube has never become natural for me. At this point, I don't think I would ever allow anyone else to place it beside myself, but it's still not something that feels natural. There is nothing comfortable about subjecting such pain to your child. The flood of anxiety and nerves that eat thru my body are just incredible. The guilt that I wear is thick enough to cut with a spoon. I always start by snuggling Annabelle so much that she wants to run away, she always has an idea something bad is going to happen when I refuse to put her down and stop holding her. After the tube is placed though, she wants nothing to do with me, she won't come near me or love on me for hours, sometimes a day or two. She is angry with me and I do not blame her.

I assemble all the supply that I will need, and sometimes with the help of Belle.. she likes to cut her own tape ;) I take inventory over and over to ensure that I have everything before beginning. My goal is to move as fast as earthly possible once I begin. I want it all over just as badly as Annabelle does.

My hands shake so badly until the moment we are ready and I put my game face on.
My stomach stays in knots, and I begin to pray and pray and pray that it's a smooth placement, little pain and little blood, and then I pray even harder to verify placement in her tummy quickly.. that's always the longest part and I hold my breath the entire time. If I cannot confirm the tube is in her stomach, it needs to be pulled and inserted again.. and again until I am certain the tube is in it's correct position. There is a chance it can easily be inserted into her lungs instead of her stomach, if that's the case and I attempt to feed her, I will drown her within seconds by pumping formula directly onto her lungs. Confirming the tube is in her stomach though has never been easy for us. It's never been easy for staff at the hospital either. Annabelle's tummy empty's extremely fast (we have her on a medication that does this) so looking for stomach contents isn't always the easiest.

After the tube is placed, we always high-five one another, bump fists and then she runs off.. not to speak to me for a while. I am left with hands that are shaking, and feel as though they've done the worst thing imaginable. Every single time I have placed another tube, I find myself scrubbing my hands viciously for so long afterwards.. as if the hot water and scrubbing will somehow remove what my hands had just done to my daughter. This is something no parent should ever have to do to their child. This is something no child should ever be held down by a parent to do. But this is our life. This tube is saving Annabelle's life, and for that, we do whatever we need. It could always be worse, I know. But this is one of the worst things our family is forced to do, and it's not easy or welcomed.

Here is a video that I found a few weeks ago. I have absolutely no clue how this video recorded. Madelynne had been playing with my phone on my bed as I got everything ready to place another tube. AK was out of town again and this was the first time I had to start a new tube by myself. The first time I watched this video, my heart sank and my stomach twisted...  Annabelle however is so amazing. She hardly fought and after it was in, she laid back with her hands behind her head so I could finish the rest of the process. What 2-yr old does this? Oh she breaks my heart and melts me at the same time. Madelynne is very involved, she wants both to not see her sissy in pain and also to be there to help in any way she can. Our family is anything but a cookie cutter, that's for sure! :)

Today we're Thankful

Everyday we are thankful.

But today, on Thanksgiving, I am heartbroken. It's one of the most incredibly torn places to be. I am grateful and blessed to have both my daughters with me on this holiday, but I struggle saying grace at the table when I look at all the food in front of me and a flood of unanswered questions in my head.

For Thanksgiving this year, I made sure Annabelle had her own filled plate of safe foods that traveled with us. AK packed her meals and spent 30min in the kitchen assembling her make-shift plate while rapidly blinking at the ceiling and fighting tears back with a smile. I couldn't say anything to him, because I knew what the both of us were feeling. Thanksgiving begins the kickoff of holidays, surrounded by food and joyfulness in the air. The season to be grateful for all we have, when really, this year has taken our family thru a silent hell and we are still a long ways from recovery. We are trying, with every painted smile we wear, to be happy in front of our children, friends and family. When the day is over and the house is silent, we fall silent too.. When such an intense roller coaster has taken over your life in the way Annabelle's Journey has taken over ours, it's hard to accept and believe that the ride is over. I think we're too nervous and terrified that we are on the cusp of the next wave. I pray with everything I have that we're not, but I am cautious enough, and have gotten my heart broken too many times to not invest all my energy into that basket of hope. It always fails me. AK and I are there.. on the fine line between faking happiness and completely petrified of the future.

We can't tell months, weeks, or seasons from the next.. I just know that the decor in our home is changing to keep up with what the calendar represents. Maintaining normalcy the best way we can for our children are all that keep us lifted and moving forward. They make wearing a smile easier than doing it ourselves, they keep us laughing more often than ever lately. Life in our home has slowed down... we spend an incredible amount of time at home, doing a lot of nothing and lounging around in comfy clothes with warm blankets. We find ourselves pulling out new toys & board games more often than ever before and taking naps with the kids at random times of the day. I enjoy these moments. The girls enjoy them. It's what the season is about, but it's also what life is about. I realized not long ago that this past year has flown by so quickly, I have hardly taken any pictures of the girls, I didn't know Madelynne could spell and write her 9-letter name on her own.. we've just been moving at such an insanely fast speed that we're forgetting to slow down. Looking back, I truly don't have a clue where I could shave out the time to do so, life has mandated we move at this pace, hospitals and doctors and Annabelle's constant changing condition has mandated we not slow down.. let alone sleep, but it's happened. Life has flown by and we've finally gotten the opportunity to breathe. Breathing is something new and terrifying for our family, we're all getting to know one another again, learn new schedules and make new memories. Many things have always stayed the same, we've always said grace around the table, holding hands each night, we always say our prayers and we try our hardest to keep each other informed on what's next on the calendar and praise one another for accomplishments when they come around.

So this year in our home, we are grateful. We are thankful and we are blessed. Because we've made it. Annabelle enjoyed food on her plate at the table, despite her tubey bag and pump hanging beside her. Madelynne enjoyed her favorite, cranberry sauce with extra ham biscuits, while sitting beside me and showing me everything she wants in the sales magazines. My mother-in-law and I got to spend time together shopping for the girls all evening and AK and I went shopping along while the girls enjoying quality time with my mom for the day. There was a lot of bonding time all around with family and friends this Thanksgiving. We focused much less on the food and much more on the quality of time we have with one another and for that, we have learned just how blessed our family truly is. We are blessed, never ever have we doubted our blessings for a second, we are grateful and humble this year. We have made it this far and we will only continue to thrive thru the rest of 2013. We have road blocks ahead, but only hope and promise for the future.