Packing to leave

Wow, it feels like we were just packing for Cincinnati Ohio! Here we are again, a little better prepared for our trip, a little more knowledgable for how the hospital and teams run, but twice as nervous. We've never had such good news as we did during our last visit, this trip will either validate Annabelle's current EoE status or dismiss our current treatment plan. Our biggest fears are how Annabelle will handle the procedures she is about to endure. It makes me nauseous to even remember what she was put thru last time, I cringe knowing we are headed back to do it again :( 

Last night I spent having coffee with two other EoE mommies. The three of us stick together close. Our babies are all on different chapters of the same book; they're equally suffering and as a a result, so are we. It's hard to complain or find someone that can listen and understand our fears and EoE moms. The two of them also go to Cincinnati for treatment, so it's exciting that one of us is headed back. We maintain a three way text conversation of support and venting. It's an outlet we need, and was so nice to spend one of my last nights in richmond with them. 

Today Annabelle and I snuggled together, slowly packed bags and planned all kinds of exciting things for Cincinnati. I couldn't bring myself to actually pack bags until the kids were in bed. They are excited I think. As far as they are concerned, we're going on a family vacation, it just so happens to be in Cincinnati where Annabelle will have to see her doctors. I'm letting them run with that idea, and I also pray we are able to make it as fun as we can for our family. Heck, we're losing more money than Disney would cost! We better have some sort of fun!! ;) 

Our car is packed. The kids are snoozing and clothes are set out. We will get on the road around 3am in the morning. I promise to keep the blog updated while in Cincinnati, I'll try to post every day, as we have appointments every single day begining Sunday. 

Thank you all for your continued prayers, here we go!! Answers for Annabelle, again :) 

Sissy wants to go to Cincinnati OH too!

Annabelle and Madelynne are typical sisters. They fight, argue, love on one another, they bicker over nothing and the next minute they are playing house and Belle is the baby. They're sisters, 2 1/2 years apart and every bit of sassiness we hoped they would be together.


When Annabelle is sick though, the chapter in their little lives turn and as parents, we see a side of our daughters that we couldn't have taught or raised if we tried. The love they have for each other is indescribable. When Annabelle was at her worst, we would have to console Madelynne in the middle of the night and wipe her tears because she was so so scared Jesus was taking her sister away from her. Madelynne has watched and assisted in things that are vital to her sissy's health, that no child ever should. The first few years, when both girls were younger, we kept Madelynne distanced from her sissy and told her little about what was happening. Her mind wouldn't be able to grasp everything that was going on, and the best for both girls was to preserve there smiles and laughter and encourage as much normalcy as we could. Eventually, Annabelle began spending more time in the hospital than she did at home .. and when that happened, mommy too spent time in the hospital and away from Madelynne. We started to explain things the best we could. We had Child Life talk to Mady about her sister when she would visit her in the hospital, they would tell her all the tubes and wires she would see and explain to Madelynne in words that she understood, about her sister's status and condition. We have purchased books and spend as much time as she needs to answer her questions about Annabelle, anytime she is worried about something or confused.

 

In July, when we took Annabelle to Cincinnati - it was the first time we, as parents, were ever away from Madelynne for so long. It was also the first time she was ever away from her sister for so long. The entire trip in Ohio, Annabelle asked for her sister. In recovery after surgery, Annabelle wanted her sister. On the phone when I would talk to Madelynne, she was worried to death about her sister. My heart sank. Maybe keeping them apart WASN'T the best idea?

Mady wrote this for Belle during surgery:

I know a lot of parents / people / YOU even, will disagree with the idea of allowing the girls together in the hospital. But unless you have eyes in my house, you haven't seen how much the two of these girls depend on one another when something goes wrong. When one child is sick, the other is worried to death if they're ok. When Annabelle needs her tubey changed, Madelynne is right beside her singing in her ear and telling her it will all be alright. We don't shield them from whats happening in our home and in our family around Annabelle's condition. I have always made that promise to myself and them that I will never lie to them about what's going on.

NOW, of course during the most excruciating appointments and procedures, we do not allow Madelynne to be present. During surgery and recovery, Madelynne CANNOT be present, nor would we allow it, mostly because Annabelle is so incoherent, she doesn't understand who anyone is anyway. But for appointments, procedures, IVs, tube feeds / changes, skin testing etc. Madelynne is allowed to be right beside Belle if they choose.

So we are planning our trip to Cincinnati and will be leaving next weekend. We haven't spoken much about it in our house because we don't want to upset Annabelle, but when we do, both girls question whether or not Madelynne is going to go. Of course she isn't, she will be in school and Belle will be in the hospital - of course Madelynne will stay behind. But the more they asked and the more I reflected back to our last visit and previous procedures, all I can remember is that each kid missed one another. Is it worse for them to allow Belle to have her sissy with her? What is the worst that could happen? What's the best that can happen?


When we travel and when Annabelle is subjected to series of hospitals and procedures, we strive to keep things as normal as they possibly can be. We bring a kindle that she can watch in the hospital. We have pictures on nightstands so she can see her sissy. We bring our own pillowcase that she likes to chew on and Belle carries her lambie and blanket to snuggle with. If we leave Madelynne for a full week, that will be just as traumatizing for her too - she isn't used to us being gone, and although she does fine with other adults, she struggles when we get back home. Her feelings are hurt and her heart is broken that she was away from all of us. I do understand that. I do understand why Annabelle wants her sissy and I do understand why Mady wants to be with Belle. If for nothing else, they can bicker with one another the entire time - and that, will be 'normal' enough for our family to survive Cincinnati. :)


AK met with Mady's teacher this week. He talked with her a short bit about what's going on and also asked how much would Mady fall behind if we were to keep her from school. Mady is excelling in 1st Grade better than we could have prayed she would. She is keeping up in every subject and even moving in higher work groups to gain even more of a challenge in areas. The teacher had absolutely no reservations about Madelynne and said she would be happy to build us a workbook of school work she can complete while we're in Ohio. That way Mady can have something to do during down times while we're waiting on doctors and tests and she will not fall behind in her school work.


So. Madelynne is joining us in Cincinnati Ohio. When we told her, she was more happy and relieved than I thought she would be. She immediately wanted to start packing and gave her sissy a huge, huge hug. They think they're off on an adventure together.... boy what an adventure it will be!

Two week countdown

I think it’s fair we share an update to you all by now.

Annabelle is doing alright, she’s stable but she uncomfortable. She isn’t in tremendous pain like she’s lived thru before, but she complains of pain nearly every day. She is very fatigued after bouts of playing or running around like a 4 year old does. Annabelle has a stable diet, although we are not certain it’s safe, she at least is being nourished properly. Overall, we are happy with how Annabelle’s health looks. As parents, it’s our own radar that typically gets set off first and then medically the doctors contribute/confirm our worries. For now, we are okay with the way things are going.. but we definitely have some concerns that will be addressed while at Cincinnati Children’s Hospital in just two weeks.

Allergy & Immunology

Over the last couple months, Annabelle has experienced random – fluke – out of the blue allergic reactions that transpire from nowhere. Some reactions are visible and you can see on the surface. Take this particular morning for example, last month she woke up and her face was so swollen she had a tough time opening her eyes. It took several heavy doses of Benadryl and almost three days before the swelling went down. She went to bed the night before perfectly fine. She woke up swollen. We have no idea what caused it.

She’s also had multiple GI reactions to things, of which I believe to be food related. Although I don’t have a clue what food could be setting it off as we haven’t introduced anything new to her diet for nearly a YEAR! Her diet has remained untouched and we only eat / cook within those limitations. The creepy, frustrating part of this disease she’s battling is that one day her body will accept a food without a problem and the next day her body will decide it doesn’t like that particular food. The sudden change in what her body’s immune system and GI system will tolerate can have a profound effect enough to set off the disease entirely, all the way from an allergic reaction to a EoE Relapse. You cannot predict if/when her body will change it’s mind on what is considered a ‘safe food’. You can only play safe, keep everything the exact same and pray you can eventually add new foods and they also be safe.

Our appointment with Allergy & Immunology will follow our visit with Gastroenterology and her surgery. Based off the discussions with her GI and the EoE Team in Cincinnati, we will then follow up with Allergy and Immunology to determine a better, safer game plan moving forward. Objectives for this appointment:

1.       Determine the cause of the spontaneous allergic reactions

2.       Confirm or deny safe foods that she is already eating

3.       With fingers crossed and prayers answered – If Annabelle is still in remission like she was in July, hopefully – HOPEFULLY we can add another food to our diet. We will need this Allergy and Immunology appt to guide us and tell us which new food is safest and most logical to add. (personally… I would love for the kid to have some/any kind of dairy. Dairy will open a whole new world for her. Secondly, eggs. At least baked eggs so she can eat baked things).

I’m not certain what the specialist will choose to do, testing wise, while we are there. Typically, it’s just a lot of allergy testing and lab work. Perhaps we will also do Patch Testing if were there long enough.

Neurology / Psychology

It wasn’t too long ago that we watched Belle, day after day after day experience heart-wrenching seizures and no one could explain where they were coming from. We sat in ER’s for days and nights on end when her body temperature would drop below 94 degrees and then climb above 104-105 within the hour. Doctors from hospitals all over couldn’t help us figure out what was going on. We paid cash for Brain MRI’s when insurance wouldn’t help, I drove to Johns Hopkins when Richmond was out of answers.. but we gained very little. All we knew was that each time Annabelle came back to us after a seizure, was a blessing. But each time her little body was subjected to the temperature fluctuations, seizures and drugs – more and more damage was being caused. Our doctors told us during one of our last visits that while we need to keep our prayers strong for no long-term damage, we need to be
cognoscente of it. They told us that we may not see the effects of damage until she is school age and she begins to drift off from her peers. My heart is breaking during the last several months as I am watching my baby girl do just that.

Our doctor, our nurse that works with Annabelle every single day, her preschool teacher and AK and I have all witnessed and share the same concerns with Annabelle. I’ve met with her school and while in many ways Annabelle is like the rest of her friends in her class, there are notable differences that cannot be ignored. Her teacher has expressed the differences she sees in Annabelle compared to her classmates. Her attention span is like a nat. You have to redirect and remind her what she is doing constantly. We have the same frustrations at home. I can give Annabelle a piece of paper and ask her to color the picture blue, within minutes she is cutting it with scissors bc she forgot what I asked her to do… and that’s if she can even focus long enough on the paper. She will get up during class and walk away, not knowing what the instructions were. And if she isn’t agitated and detached – she is drifting off and laying her head down on the desk for most the day. Her teacher expressed how tired she seems a lot of the time. While other kids are playing games, she may choose to go lay down by herself instead. The exhaustion is part of the disease and I know learning and getting to school takes more of a toll on her little body and energy levels than other kids, so that part I am not worried about. But the drifting away and remaining focused does bother me. It’s also a red flag on the education scale. It’s already been determined that Annabelle will likely not be ready for Kindergarten next fall like she is supposed to be (oh boy will she be HEARTBROKEN!) but we do need change in order to help her focus, learn and grow in school.

Annabelle’s nurse has mentioned for nearly a year about neurological concerns she has when she’s working with Annabelle. AK and I also see many things that are disturbing and simply do NOT fall into the category of “typical 4 year old”. Her smile is sideways, her eye left eye is droopy and doesn’t blink at the same time as her other eye all the time. She physically reaches up to make it blink at times … Annabelle says “My eye is silly mommy”. Our doctor is requesting we consult with the Neurology Team while we are in Cincinnati in a few weeks and we agree that the timing is probably right for Annabelle.

We’re scheduling a Neuropsychological Evaluation with the Neurology and Psychology Team… the tricky part is the scheduling. The appointment she needs is a series of three seperate appointments; Initial Consultation with the Neuro-Psychologist. Second we meet with the team of Psychomotrist who will conduct the several hour long testing. We have been playing phone tag for WEEKS and really struggling to get anyone to commit to a date on the calendar. Our biggest fear is that they won’t be able to work us in during the week we plan to be there. We simply cannot afford multiple trips. We don’t have the time off work or the money to spend driving the roads (forget flying, that cost is out of the question!), hotel, food etc. Our fingers are crossed that we can nail down an appointment time very soon.

Gastroenterology

Finally GI. Boy oh boy do we have plans for this team. As I mentioned before, our biggest concerns are what is setting off reactions and whether or not those allergic reactions were stemmed from the disease or made an impact to it. In July, our prayers were answered in the form of a true miracle – Annabelle for the first time in her life, was clear and in full remission from Eosinophilic Esophaghitis, Eosinophilic Gastritis and Eosinophilic Colitis. (These are NOT all her diagnoses, these are just the ones we scope for). Our GI specialist couldn’t believe how beautiful Annabelle’s GI system looked, nor could we. Because she had recently been taken off all medications and prayers were so strong during that time – we decided not to deviate from the treatment plan and we would just continue doing exactly what we are doing (no drugs, same foods) and perform another Endoscopy 16 weeks later. So here we are, ready to either confirm or deny that Annabelle is still in remission and that all foods she is eating are safe and that the floods of drugs are NOT necessary to be part of her diet. The other possibility is that we will fail this scope and find the disease active again in her GI system. If that’s the case, something will have to change with her treatment plan. We will either lose foods, or we will resort back to drugs and steroids for treatment. I don’t want either… and I guarantee Annabelle agrees. So for now, keep your prayers strong that she is still clear from active eosinophils and we can move FORWARD in treatment with Annabelle and NOT go two steps back!

So far, here is our schedule:

Friday, November 13^th – Leave Richmond, VA and begin our drive during the night to Cincinnati, OH. Annabelle gets car sick and nauseous, we are hoping that driving during the night will help her avoid the nausea.

Saturday, November 14^th – have fun. The only thing Annabelle remembers (or cares to remember) from our last trip was the Cincinnati Zoo. I do have to say, the zoo is the best zoo I have ever been to and a lot of fun. We promised Annabelle we would go back and we will. Our goal is to make Saturday a fun, comfortable day for her. We will play and have fun, we’ll have dinner and get plenty rest Saturday night.

Sunday, November 15^th – 1030am. Admission to the hospital. We will be admitted where Annabelle will spend the next two days undergoing series of GI Prep / hell, while receiving plenty fluids to keep her hydrated, Zofran to keep her from being so nauseous during the procedures and hopefully some play therapy to distract her.

Monday, November 16^th – 9am appointment with Dr. Putnam and the Eosinophilic Esophaghitis research team. We will review the last 4 months, discuss game plans for the days surgery and potential plans moving forward based off the surgery and pathology results.

330pm – Surgery Time

Tuesday, November 17^th – 930am Allergy and Immunology. This appointment is in a sister hospital about 45 minutes away from Cincinnati Children’s. We’re already praying that Annabelle is comfortable and stable enough for the drive to the appointment and back.

Thursday, November 19^th – Pathology results come in and give us the news whether or not Annabelle is in remission or the disease is active again. Depending on those results, will tell us our treatment plans. Thursday is the day we hold our breath!!!!

Friday, November 20th - Sometime during this day we are PRAYING we can coordinate for the NeuroPsych Eval and appointments.

Friday evening, drive home during the night.



Meanwhile, our schedule is: Exhale and get our notes, books, paperwork, records and bags packed. We will tell Annabelle next week what is happening.. there's just no reason to worry her and upset her so soon.

On a happy note, she has been having fun lately, playing dress up, going to parties at her school. We went apple picking this past weekend at Carter Mountain and Halloween Saturday she was princess Elsa, although she apparently got into the character of her sissy and pretended to be dead-princess-elsa. Silly, silly little girl. She's such a bright, fun loving, free spirited child!

It's getting chilly outside!

It's the time of the year that scares the snot out of us. Perhaps literally.. Germs are everywhere and Annabelle, for the first time ever, is in preschool. Aka: The Top Germ Exchange. 

Her school is doing a great job at keeping the germs at bay and also communicating with us when someone is sick. We've had to keep Belle at home a few days bc the exposure was just too risky. Annabelle understands. When she does go back to school, she wears a mask. 

The rest of our family is battling our own germs. Let me tell you, living in the same home with a child w/ very little immune system, while you're sick and still parenting = nightmare. AK and I have both been sick the past week or so, all the while Belle is fighting a cold for the third week in a row. (3+ weeks for a cold is common for her immune system) We're practically bathing in clorox and praying the winter germ season is kind to our family.

Annabelle is doing well otherwise. It took her several weeks to recover from her birthday. We still do not know if it was the birthday cake, exposure to another food or something she ingested in general - but her immune system reacted, and violently. She steadily lost weight and we've struggled for her to put it back on. She's experiencing allergic reactions more often now than she has in years. (allergic reactions being completely outside of the disease itself). You can tell that Annabelle isn't well. She complains of her tummy hurting almost daily but we don't know what to do to help her. We cannot go back on medications that we know would help her because we are still in the middle of a food trial.

While we are not 'excited' to go back to Cincinnati Children's Hospital in a month, as a parent, I am relieved that we will gain another look into how Annabelle is progressing. It worries me when she doesn't have medical care but every 16wks. She's NEVER gone that long between visits before. But anything more frequent just isn't possible for our family. Annabelle is strong and doing so well. I haven't told her that Cincinnati is upcoming. We are going to get thru Halloween and have some more fun and then we will begin talking to her about it. She's getting older and wiser with each visit. Her little body is consumed with fears and sometimes realistic expectations about the upcoming hell. It's hard to soothe those worries in a 4year old baby.. as a parent, learning how to coach her thru them and talk to her on a level she will understand at that time, is so difficult and ever-changing. Meanwhile, we laugh, play, learn and have fun. Annabelle is dancing and doing gymnastics and loves every minute of it. She is a walking miracle and completely blessed by the outpouring prayers from all of you, thank you so very much, for every minute of prayer in which you share my baby girls name.

Allergic reactions and losing weight

Bombshells for Belle was a blast. We had a great time, the kids played, they were filthy dirty. Friends and family came out to support us and the event carried on despite the promise of awful inclement weather. Annabelle made some new friends as did we. We cannot thank Bombshells for Belle enough for all their hard work and efforts in pulling together such a wonderful event for Ms. Annabelle!

Since the event though, we have had a tough time. Annabelle woke the next morning experiencing an awful allergic reaction. I passed her in the hallway before I left for work and with a split second glance at her face, my stomach fell to the floor and I dropped to my knees to look at her more closely. Her face was terribly swollen everywhere, from her ears, eyes, cheeks, chin, mouth etc. It was bright red and hot to the touch. I called our doctor and her response "What has she been exposed to?" ....well.. the day prior was Bombshells for Belle so really, the sky is the limit! My stomach sank even faster. I knew I should have kept a closer eye on her, I KNEW I should have made her wear a mask the entire day. I was so mad at myself .. but none of that mattered now. I gave Annabelle a strong dose of benadryl and headed into work. The day moved as I sat on pins and needles while the nurse gave me updates nearly every hour on how she was doing, her breathing and what the swelling/redness looked like.

It took several days for the reaction to finally go away. Then, yesterday (Saturday), another allergic reaction developed. This time I KNEW she hadn't been exposed to anything out of the ordinary. Her mouth, lips, chin etc were red, splotchy and swollen. I have no idea what is making this little girl react but it's frightening me. She hasn't had visible allergic reactions like these in years - and now two in only a week.

Also, to add insult to injury, Annabelle has lost TWO pounds in only two weeks. For any parent of a tube-fed child, seeing a number DROP on a scale is one of the most nauseating things to watch happen. You don't know why it's happening, you feel like you're doing all you can but your child's little body just can't keep up. Fortunately for us, I may know what is going on. I stopped tube-feeding Annabelle during the nights to give her more comfort, rest and also allow her to sleep better and in big girl undies (this is quite a treat). It's uncomfortable for her to remain hooked and tethered to an IV pole all night, her stomach hurts her when she's being tube fed and potty training during the night is just impossible. Allowing her to end her tube feedings at night was such a reward for all of us. I felt that she was eating enough during the day and now at 4yo, she had enough nutrients and a balanced diet to thrive without needing the tube feeds. Apparently I was wrong. Her appetite for some reason has been poor, she's more sleepy than ever and she's rapidly loosing weight. Back to tube feedings we go :( Poor Belle. Let's cross our fingers and hope this fixes things.

If she doesn't begin to put the weight back on soon and these allergic reactions seize, we will be headed back to Cincinnati much sooner than November 16th!

Bombshells for Belle

Oh my goodness, Oh my goodness - the day is almost here!

BOMBSHELLS FOR BELLE IS TOMORROW!

We have been stalking the weather all week and Virginia weather just isn't very promising or abiding by the forecasts - they're calling for some rain but we have no idea what to expect. The good news = We will have plenty room indoors and indoor activities so don't fret over the rain, we totally have a backup plan ;)

Annabelle is heading to bed right now (thank you to the sun going down super early these days, she is completely fooled by the time, hehe). She cannot wait for her big, big event tomorrow - she has no idea what to expect but she's talking all about it... im pretty certain she thinks it's a birthday party. lol

This week has been a little hard on Annabelle. Her stomach, undoubtedly has been bothering her, to the point we've had to assess her tubing / feedings / venting a lot more lately to provide her some relief. She's developed some granulation tissue around her stoma (gtube site) that is typically a sign that her immune system is active and responding to something (that's bad. really bad). For right now, I don't see any outward signs of a relapse taking place, but our prayers and precautions are remaining strong just in case.

This weekend has been the perfect opportunity to relax and reflect while the overcast skies remind us to 'slow down' and 'take a deep breath'.
Life is beautiful.
Life is short.
Life is difficult and nothing is promised.
Annabelle has survived her body's battles for four years now, FOUR YEARS. Not one of those days have been easy, but they've each been a blessing. Not one of her surgeries, the thousands and thousands of medical debt, the sleepless nights, the tears of her big sissy that doesn't understand what is happening, the countless slammed doors in our face - not one day was easy. But goodness it was a blessing that I never knew was intended for our family. I never knew our families struggles and pains would lead us to where we are today - FLOODED with love from family and strangers. FLOODED with generosity that wants nothing more than to give and help another family in need just as strong as we do the same for others. This world is so much bigger than a home's four walls. What you do today impacts families and those all around you every day. Today was a perfect day to reflect on our own family, how much of an impact Annabelle has made on other's lives, how much she has shaped our family to love and support a whole new world that we may have never known. How much Annabelle's life circumstances could amount to an event like tomorrow's "Bombshells for Belle". Just absolutely amazing.

We are too giddy to sleep. My heart is bursting from my chest with the excitement and thrill of seeing everyone and showing you all just how amazing, strong and heroic our sweet baby girl truly is.

Please, tell everyone about Bombshells for Belle and come out any time tomorrow to say hello. The event is from 12-5pm ... they will have raffles and floods of prizes, great beer, hula-hoop contests, classic cars, cotton candy, great music and awesome people all day.

I look forward to seeing you all. And as always, thank you so very much for everything you've done for our family and your continued prayers as we fight to making a life for Annabelle that she deserves, a painfree, promised long life of smiles, (tantrums), giggles and love. :)

Year 1 After Diagnosis:

Year 2 After Diagnosis:

God's purpose for your life is far greater than your pain

We can hardly keep our heads above water lately. Sports have begun, we balance cheering, dance and gymnastics. A new school year has started, in which we now have three kiddos all in different grades. Annabelle is growing and thriving in all new ways for our family, her energy is thru the roof and her opinion and sas is never-ending. The older kids are adjusting back into their school routine (early bedtime, early mornings). Everyone is cranky and tired. It's the same transition in everyone's home right now with school-age kids. And it SUCKS! It has it's fun moments, but overall, it's a bear to get thru.

My stress and anxiety is thru the roof so I decided I needed some time out of the house. A friend and I made a trip to hike Old Rag Mountain. Yes, the mother and woman in a household of 7 that hardly has time to breathe, let alone exercise - thought it would be a good idea to HIKE A MOUNTAIN! I did it though. The solitude was so rewarding, I felt alive, powerful, strong, fearless and free. I needed the crisp mountain air and burn of my muscles to ground myself back into my happy place. Standing on top of Old Rag Mountain was everything this mommy of a special-needs little girl needed.

I got home and I couldn't move. What in the HELL have I done to myself? My family laughs at me as I try to walk, or attempt the stairs. I moan and groan with every step. I hiked over 11 miles of one of the most strenuous mountain hikes in the state in exactly 5 hours. I am a warrior...... a dumb, aching, goofy, warrior.

Still though, our house moves in a fast pace. The family gave me Sunday off to do the hike but Monday morning was back to normal. Work at 6:45am, meetings, practices, we still have sports, dinner still needs to be on the table and nothing on our schedule allows for a tired, aching momma. All I wanted was sleep. I counted every hour on Monday to the moment I would be able soak in a hot bath and fall asleep early. I got into my comfy clothes and we ate dinner early. We did homework and read books early. I dressed the girls in their jammies early and then made my way to my bedroom. Heaven. My happy place. I was writing off anything and everything else I am responsible for taking care of this evening, because I am taking a bath and going to bed!


And then, my phone beeped. I hesitated to look. "Its probably just an email Ashley, don't look. It's probably nothing.. it isn't ANYTHING more important than a hot bath and your bed Ashley, don't look."

But then I looked.

"Any pointers on placing an NG-Tube? A friends 4mo just recently had one and pulled his out tonight and the parents are too afraid to put it back in"

If you were in my bedroom you would have seen the defeat sweep across my face as my head dropped to the floor and I cut the bath water back off.

I responded, "Absolutely. Do they want to call me? If they live close I will go help them if that is what they would like. My cell is: xxx-xxxx"

When the poor mama called me, I could hear the exhaustion in her voice over the phone. I remember the first time Annabelle pulled her NG-tube out at home. We were too scared to put it back in too and I asked our next door neighbor to come over and do it for me. Tube feeding is terrifying and you've never felt so alone and helpless as you do when you're home and are ill-equipped and medically uneducated to understand the ins and outs of tube feeding. Hospitals do NOT do nearly enough to educate the parents on how to care for a tube-fed child. We have learned 99% of what we know by making mistakes, troubleshooting at 2:30am, phoning a friend etc. One thing hospitals never told us though, was that the tube feeding world is full of parents just like us. Confused, frustrated, heartbroken, scared and lonely - we move together though and care for one another and each others babies as if they're our own.

I changed back into real clothes and made a trip to the medical closet in our house to grab some supplies. I remember when we were sent home, we had NOTHING to get us started. We didn't know which products were helpful and which weren't. We didn't have the right supply we DID need and we didn't know where to even begin. I grabbed a handful of all my favorite products for NG-Tube feeding and even a few fun things too, like Feeding Friends stickers, and headed out the door. I got to their house around 8:45pm. With a coke in one hand and medical supplies in the other.

They didn't have 1/4 of the medical supply they needed/deserve. The poor little baby's face was quickly on it's way to being raw from the tape and the tube they gave to take home didn't come with the right pieces for placement. I felt awful but SO grateful that I was there to help. All the things I packed to bring them were needed. The tape, the skin barrier, the ointments, adhesive remover, syringes, etc. Before we got started I shared some secrets for taping the tube down to keeping it secure. We talked about troubleshooting the tube and ensuring its placed correctly, the feeding pump and any questions they had. When the time came for us to place the tube, the momma left the room. I could see the heartbreak in her eyes and how her mommy heart just poured for her baby boy that was having to go thru all this :( It broke my heart more than I knew possible.. to see someone else wearing the same devastation across their face as I have worn. I wanted to take this perfect stranger in my arms and tell her it would all be ok. I could see how strong she was being but I could feel how broken she was for what was about to happen.

The little boys daddy stayed in the room with me to help. Daddy was the one in the family appointed to "learn how to place the tube and fix it when something is wrong". AK and I have assumed similar roles. We divide what each person can handle and who can do which part of all this the best. He knows the things that I cannot emotionally handle and I recognize the times that he cannot be present because it's just too much. It was comforting to see that balance in another home too. The daddy was also visibly concerned and worried, but he was strong and confident. No one spoke much, there just isn't anything helpful or enlightening to say when you're faced with painfully shoving a tube down an infants nose/throat.

With mommy in the other room and daddy holding down the sweet babies arms, we got started. I placed the tube in the opposite nostril than was he had just been using. It went into place without any issue at all. In fact, I don't know that placing a tube on Annabelle was EVER that easy. My hands were visibly shaking because I wanted this to go by so fast for the baby and his parents, I wanted to do everything right for them - I prayed my NG-tube placing skills were still on point from nearly two years ago!

After it was placed, the tube immediately dripped with gastric fluid because I forgot to close the end. Daddy picked him up and I began to clean the mess, "Im sorry about the mess! But, do you know what this means?"
Dad said with a smile. "It's in his stomach?"
"That's right! We're all done!"

We taped him up and I let his big brother pick out a super cute feeding friends sticker, he picked out the Lion (I believe) and I cut it out for him to place on his baby brothers little face to hold the tubey in position. Before I left I gave him a little kiss on his forehead and made the parents promise to give me a call if they have any questions or worries at all - I am happy to come by ANY time.



The drive home felt so fast, I forgot to turn on the radio.
I found myself smiling ear to ear and my heart bursting with love and joy. What an awesome feeling to have the skills, knowledge, experience and confidence in something that can help another family in such a way I could ease their worries and fears by my own experiences. I have seen and felt their pain and here I was, able to do God's work and take that away from them. My mind wasn't filled with all the things on my to-do list for the week, I didn't blink at the thought of all the running around I have been doing and I completely forgot how sore my body was from the hike. All I could think about is how strong, beautiful, honored and happy I felt in that moment. There is no way anything on this earth could have brought me down from that feeling.

I got home and walked up the stairs and back to my bedroom. AK had drawn me a fresh hot bath and greeted me with a hug. It was really late and I should have been tired enough to collapse, but I wasn't. All I could do was smile. He gave me a kiss on my forehead and told me how proud he was to have a wife that serves others at a drop of a dime. Likewise, I am proud to call him my husband.

 When you realize God's purpose for your life isn't just about you, he will use you in a mighty way.

For years we have questioned why God was challenging us, putting us thru this hell, torturing our little girl and running our family thru the ringer. Little did we know that we would be where we are today. Just last week Annabelle saw a little boy at Chick Fil A with a trach, he said "mommy! He has a Tubey in his throat!" I said "yes he does Hunny, people can have all kinds of tubeys." Annabelle walked over to him and showed him her tube, she then reached for his hand and said "we are Tubey buddies" they exchanged a smile between one another that was such a connection, I didn't know a toddler could share! The dad smiled at me and I smiled back. There just are no words - I walked away in awe, as though I had just seen something miraculous happen between two kids that need one another in a life that certainly proves to be unfair at times. And here my daughter is befriending a little boy and taking his hand to make sure he knows he isn't alone. 

Our family has taken a very very long time to get to this point, but we're starting to see just what this whole life / tragedy thing works. Would I have signed up for this? Absolutely not. Could I have ever found happiness and fulfillment in a way I am now? I don't think so. Annabelle's journey has shaped our family and our perspectives in a way we could have never done on our own. We are so thankful, we are blessed, we are honored for all we have been thru .. If it's purpose is this, to help others. To serve others. To relieve the burden and fear from another parent in the middle of the night. To remind another 3 year old that he isn't alone. If that is what this journey is about - wow. Just wow. 

What a blessing and honor it is. 

At the end of our lives, we will not be judged by how many diplomas we have received, how much money we have made or how many things we've done. We will be judged by "I was hungry and you gave me something to eat. I was naked and you clothed me. I was homeless and you took me in."