Tubie Conversations

When the GI team from Hopkins joined our room in the Emergency Room, the resident's first question when she raised Annabelle's shirt was, "She doesn't have a g-tube, you ARE tube feeding her, right?" I explained why we hadn't come to that decision yet. When the Attending joined us a while later, he practically jumped down my throat as to why we didn't have a feeding tube in place! He was shocked and visibly annoyed.

I explained my/our position as best as I could..
"When Annabelle was first diagnosed with Eosinophilic Esophaghitis, she was considerably malnurished - she needed help and we knew that but we struggled to find the root cause for her malnurishment until we finally got our diagnosis. I pleaded our GI doctor at the time to allow us an opportunity to help Annabelle thru our treatment plan, but without tubes. He agreed and Annabelle did wonderful! She gained almost 7lb in a little over a month!

Annabelle drinks Elecare Jr. from a cup. We have no struggles to make her drink it - our only struggle is getting enough in her at a time. She's maintained her weight, so what's the concern?"



Here is where I was so, so terribly wrong about my daughters nutrition. The GI team explained to me several critical points that I had been overlooking all this time. They also enlightened me on our current situation and what this means nutritionally for Annabelle right now.

-Yes, she's gained and then maintained her weight from March. But she also has not gained ANYthing SINCE March. She should have continued to gain at a healthy rate and she has not. 

-Yes, she drinks Elecare - but is she drinking enough and how is she taking those feeds? ...Annabelle has never met her intake that we were ordered in March. She is required to drink (and keep down!) a minimum of 32oz x day. Some days she struggles to drink and keep 10oz.

-Do you understand the severity of damage being done to her brain development by staying malnurished?

He handed me an article to read that outlined similar points to what I found here:
The effect of undernutrition on young children can be devastating and enduring. It can impede behavioral and cognitive development, educability, and reproductive health, thereby undermining future work productivity. Since growth failure occurs almost exclusively during the intrauterine period and in the first two years of life, preventing stunting, anemia, or xerophthalmia, therefore calls for interventions, which focus on the very young. 

Whether or not children are well-nourished during their first years of life can have a profound effect on their health status, as well as their ability to learn, communicate, think analytically, socialize effectively and adapt to new environments and people. Good nutrition is the first line of defense against numerous childhood diseases, which can leave their mark on a child for life. In the area of cognitive development, "when there isn't enough food, the body has to make a decision about how to invest the limited foodstuffs available. Survival comes first. Growth comes second. In this nutritional triage, the body seems obliged to rank learning last. Better to be stupid and alive than smart and dead"

When I read the information provided, the first thing that came to my mind was the conversation that morning from the Speech Therapist, "Ashley, she isn't making as much / any progress while I have been working with her. We may need to have OT back involved with her therapy.. I just wanted to give you a heads up."
All the other kids her age.. heck, a lot younger than Annabelle are speaking so well - communicating and I feel like I am talking with an infant everyday. I know something is wrong, we have known that for a long time, but what if the doctor is right? ... what if she isn't thriving cognitively because she really is malnurished? What have I done?  


-I understand you feel as though this decline in Annabelle's health is temporary. We have many reasons to believe this is truly a Metabolic Disease, however, it could potentially take a LONG time to determine a clear diagnosis, let alone begin a treatment plan. Annabelle's nutrition needs to be managed and cared for immediately. 

I thanked the GI's team for their concern about my decision regarding tube feedings and Annabelle, I promised to bring that conversation back to our GI, Dr. Konikoff at CHKD and discuss it further with him.

I pondered the conversation over and over in my head the entire evening. All day Thursday I sat with knots in my stomach and processing so many different explanations as to what was happening with Annabelle.. I kept coming back to her nutrition. In the back of my mind I remember Dr. Young saying, "Hunny.. Elecare isn't a perfect 'nutritionally complete' meal - it will keep her alive, end of story." All I have available to feed my child safely is Elecare, and here I am barely able to do that. Thursday evening I finally called CHKD's GI office and left a message to have Dr. Konikoff call me :( They told me he was out of the office and would have someone call me back. Another doctor called after the office closed and collected our story, she wanted Konikoff to speak with me directly and said he would the next day. I was slightly relieved... I don't even like speaking the words or having that conversation over the phone!

Friday evening around 6pm, Dr. Konikoff called. "Hi Ashley, I have some messages and notes here from both Johns Hopkins and yourself... I think we have some things we truly need to discuss and make a decision on, huh?"

He caught me off guard. My stomach sank so hard I thought I would be sick. I was picking up the girls from the sitter and decided to stay outside of the car and lap my sitters front driveway for the 30min conversation over the phone.
Carrying a conversation with a doctor on the other end, and determining an action plan against everything I have fought for was so difficult. I cringed every single time he said the word, "Tube". I took the words as a personal failure - that Belle and I couldn't do it and now we have to medically intervene. All I can see is more pain and opportunity for Annabelle to be 'different' in her future. I just felt so defeated and sorry for my baby girl. I am losing the fight that I stood up to fight for her :( But was I wrong in doing so? I may have been... that too hurts just as bad.

Dr. Konikoff asked if I would be willing to start the tube tonight (last Friday.. during our 6pm conversation), my jaw fell to the ground, "No! No! I need to process this thought! I think she can make it the weekend! Let's wait until next week, please!" He then asked me about her current condition and how much she was eating, I assured him that I would work with her and get her as much as she needs over the weekend and we would be ok. Otherwise, I promised we would go to an ER and have the tube placed at that time. He approached the conversation regarding our tube options, "We can put in an NG Tube temporarily, or go straight ahead and schedule surgery for a G-Tube. Ashley, understand that while this may be temporary - this will not be a 2-week fix, do you understand that? You need to realize the pro's and con's of an NG Tube..." It was then that I told him, "Dr. Konikoff, let me be honest with you. I do not want this and you KNOW how I feel about a feeding tube. I consulted you as a second opinion because our last doctor wanted to place a tube. However, at this point in Annabelle's struggle - I have every care provider telling me the exact same thing regarding my daughter's nutrition. I trust you and promise that I will not intervene what is necessary for the health and safety of my daughter. That being said, I repeat, I do not want a feeding tube placed and if this is going to be the decision, I think my opinion / decision making and judgement needs to be left out of the action plan. Our pediatrician has stood beside Annabelle daily for months and she too believes it is time to place Belle on a tube. I trust your decision and I trust her's. I believe it would be in Annabelle's best interest if the two of you decide what is best for Annabelle and I will do whatever is necessary from there. Please call her and continue this conversation with Dr. Young. At this point, I think I have done Annabelle enough disservice by putting this off for so long. The two of you will make the best decisions for her. Let me know what you decide."

Dr. Konikoff knew how upset I was. He's known since the day I met him what my position is on this topic but he also knows that I will move mountains at the expense of my own sanity and life to do what is best for my daughter. He thanked me for the honesty and agreed that speaking with Dr. Young is a wonderful idea and would allow me to simply spend time with Annabelle and enjoy my family vs. being part of this next huge step in our journey. He transitioned the conversation towards more uplifting perspectives that I should fill my mind with and not just the scary ones.

• All those days that you count how much Annabelle has eaten and you cringe she hasn't eaten enough. You don't have to anymore. Give Annabelle a cup, what she doesn't eat - put it into her tube. She's now being fed and you don't have to fight her to do it.
• Those days that she seems lethargic, dehydrated and fatigued from her days constant battle - you don't have to worry about her not getting enough to eat or fluids.
• You can administer all her medications thru her tube.
• When she's vomiting, you can put pedialyte thru her tube to rehydrate.
• If she's sleeping heavy and for long periods of time because of whatever she is fighting - do not wake her, start feeding her even then.
• For the first time, Annabelle will be getting continuous feeds, all day, everyday. Living on Elecare is not ideal by any means, but binge eating only once / twice a day is 100% counter productive to her nutrition. Annabelle needs to be receiving consistent feeds around the clock and this will gain you that. She will finally receive everything she needs to thrive. All her nutrition. All day without spells of an empty tummy eating on itself. 
• She will be alive, Ashley.

Dr. Konikoff and I decided that he would speak with Dr. Young Monday (today) and then I would be contacted with our plans. The tentative plan is to head to Norfolk Tuesday and Dr. Konikoff will place the tube once we are admitted and settled into our room. We will then be required to stay at the hospital until Annabelle is able to take all the required feeds by tube/pump. I will be educated on how everything works, setup with Home Health and then we will go home. At a very minimum we will stay in the hospital for two days, it could take much longer depending on how well Annabelle is accepting the feeds.

Annabelle is fighting enough in life. Every morning she wakes up is a struggle, some days she does wonderful and some days she cannot lift her head for more than minutes or hours without needing to rest. She is running out of energy and fight - eating shouldn't be one of her biggest battles, especially when we have options to help her.

I called Dr. Young on the way home, minutes after talking to Dr. Konikoff. She apologized to me for not being more persistent with the need for placing a tube, but said that she agrees with what everyone else is saying and that I need to follow their direction. Her perspective was geared a lot more towards cognitive development and how much Annabelle could potentially thrive when she is finally nourished. I look forward to this. I look forward to seeing my little girl learn and start to embrace life in a new way. This isn't a cure or fix by ANY means, this is not the treatment plan for what has been hurting my daughter but it is a promise of more strength for Annabelle to continue her fight.


My heart is broken into a million pieces. I wish it weren't but it is. I understand fully how important this is and how much Annabelle needs a feeding tube. I know she will do wonderful with everything, just as she always does, and I look forward to settling into our next phase of 'new normal' with a tubie. This has been my personal battle since we began though. I have repeated for months that I will not put my daughter on a feeding tube, and here we are. Andi brought perspective into light when she came to my house to rescue me from sorrow Friday night, she told me, "Ashley - you fought against a feeding tube when she was diagnosed with EoE. It was perfectly understandable that you wanted to give Belle a chance to do it on her own and she did! She did wonderful! However, you need to understand that this is not EoE right now. Whatever she is battling is so much bigger and greater than even the most fierce warrior Annabelle is. THE GAME HAS CHANGED! You are fighting a feeding tube against a battle that you don't even know she is fighting. EoE is a completely different story. No one has failed, but Annabelle needs help and you know that. You did win, you made it thru the darkness of that first diagnosis, but this is now the time to take your first steps into making it thru the darkness of this disease."
I've repeated those words in my head more times than you can imagine, "The game has changed." and it's right. The Game Has Changed and we need to put on our next set of boxing gloves to battle what lies ahead.


I am praying with everything I have for an easy transition for Annabelle and our family into the life of living with a child on a feeding tube. I pray for a painless procedure and the knowledge and understanding of how to care for the little girl in our home. I am nervous I won't be able to do it all - but that is realistically always my fear, and so far, we're still making it somehow so I haven't failed yet. I know I will learn how to do this, I always do. Annabelle will shine when she comes out on the other side, she always does. <3