Help Hadley Eat

About This Cause

UPDATES BELOW



Hadley is a 6 month old little girl, who is currently NG-tube dependent. Since birth, Hadley has dealt with a severe food aversion, bad reflux, and vomiting. At around 2 months old, she started refusing every meal, so we took her to her pediatrician, who in turn admitted her to the hospital for refusal to eat and failure to thrive. The doctors performed tests, kept her for observation, and consulted a variety of medical specialists, but all the results came back normal. Since the doctors were unable to pinpoint a medical problem, they turned towards treating her symptom of failure to thrive (malnourishment) with the placement of a nasogastric (NG) feeding tube. For the past 3+ months, Hadley has grown dependent upon the NG tube and has eaten very little by mouth.



In the last couple weeks, she started eating a little bit of pureed solids but often refuses to drink most of her prescribed formula and has even begun vomiting very frequently (probably due to heavily concentrated formula). We know that Hadley does have the ability to eat by mouth but chooses not to. Her doctors think her feeding aversion might be a behavioral problem that she developed because she associated the pain from reflux with food. Her gastroenterologist wants us to consider having surgery to place a G tube directly into her stomach and to wrap her stomach so that she can't vomit again. This however, will not solve a behavioral problem. We have been cautioned that tube dependency can take years to correct and that we must start when Hadley is young. Time is not on our side. We refuse to give up on Hadley.



Hadley is receiving weekly occupational therapy sessions to help with her feeding issues and physical development. While therapy has been helpful, progress has been slow at best. Currently, after discussions with her doctors the plan is to enroll her into an intensive feeding program to avoid surgery. There are intensive feeding programs available, but unfortunately Hadley does not qualify due to her age. Through research on the internet, we found an intensive 10 day program (tentatively scheduled to start in December) suitable for Hadley through Spectrum Pediatrics. This program more than 90% success rate. Their methodology, which has recently received positive attention in medical journals, is to stimulate hunger and let the child learn that eating is normal and healthy. They do not bribe or force the child to eat, unlike other programs we have looked into. Several families who went through Spectrum's program (only after having tried other feeding clinics/programs) said it was tough but, worth every penny because their babies are now eating and thriving on their own.



Unfortunately, because the program is so new, they are not a part of any health insurance network. After talking with our insurance company, only a portion of the occupational therapy costs will be retroactively reimbursed. The remaining cost of the program as well as housing expenses and travel are up to us to cover. Please prayfully consider a gift or donation to help pay for the program. When we learned about the tube weaning research and that a program was accepting new patients with no waiting lists or age restrictions, we were very excited, especially with the success rates! When Hadley’s NG tube was placed, we immediately started researching the topic online and only found horror stories (NG tubes eventually turning into G-tube surgeries, and years and years of therapies and feeding problems with set-backs). Hadley gives us hope every day, all we ask is that we give her a chance. We know she can do it. She’s made such a great progress already.

~-~-~-~-~-~-~-~2 Week Update~-~-~-~-~-~-~-~



We recently received Hadley’s evaluation results back from the Spectrum Pediatrics team, where they identified her as an ideal candidate for a tube wean. Just prior to the program, Hadley pulled the tube out herself. After discussing this and the evaluation results with her doctor and therapist, we have proceeded weaning Hadley from her tube; however, via a modified tube-wean program (instead on the intensive program initially planned).* After more than half of her life being NG-tube dependent for all of her nutrition it was scary making the jump. During the tube-wean process, a child can lose up to 10% of their body weight, and because of this Hadley will be under very close observation. We’re aware of this risk and it worries us, but the alternatives are potential invasive surgery(ies), and years of hardships and intensive feeding therapies.



After the tube was out, Hadley stopped her frequent vomiting altogether. She also even showed us that she could sit on her own (we weren’t sure if this was because she decided it was finally time for her to start sitting or if the tube was causing her pain or discomfort). During the first couple of days Hadley took between 25-30% (give or take) of what she is expected to eat by mouth. Hadley’s dietician has told us that she needs 675 calories a day to maintain adequate growth; however, during her weaning from the tube, it’s important that Hadley learn the importance of what hunger means as she develops her relationship with food. We are under strict orders to stop counting calories, not concentrate on how much she eats, and not to weigh her every day. However, this has been very hard for us because we’ve been keeping close track of her intake and weight since she started having feeding troubles before she was 2 months old. We are ready to put our trust in Hadley and make the leap with her into this new “normal.”



* Because we have agreed that a "modified" tube-wean program is in the best interest for Hadley, we no longer need to raise funds for the initial estimated costs for the intensive feeding program, but rather will go towards an hourly rate 6-month treatment program.

~-~-~-~-~-~-~-~1 Month Update~-~-~-~-~-~-~-~



Hadley has been tube-free for one month. Every day still presents itself as a challenge; however, we have learned many new things about Hadley and her abilities. While working with the Spectrum Pediatrics team, we have been encouraged to not weigh her or to pay close attention to her intake. We are supposed to look at Hadley and how she is doing; for example, is she happy and content and playful or is she upset and fussy? These are to be our cues and not the volume she consumes. This has been very difficult especially in the beginning—but now it is getting easier and actually is very liberating after so many months of obsessing over her eating. Now, on a good day she will eat 25 oz of formula and two solid feeds. On a bad day she will eat 12 oz might accept 1-2 solid feeds. Hadley still continues to reject some of her feedings and will not eat unless she is asleep (dream feeding).



To date, she has not finished one bottle while awake. Her therapists do not seem to be too concerned about this right now and just want to give her time to retrain her muscles and for her to relearn that the bottle is a positive thing and to be OK with eating again. She also still struggles with reflux and getting her medicine dose since we can no longer just give it through the tube. As far as her weight goes, we weigh her once a week and so far she has not lost any weight but she has not gained any either. We know this will come with time and that she will just be on the small side. It does hurt a bit when we are out in public and people guess her age at 2 months behind or say things like “she’s so little!” We know they mean well, but we are just sensitive to it.

We will leave this update with three things we have learned about Hadley this month:



1.) Hadley will eat solids out in public. We previously thought we would never get her to eat out in public (we still can’t with the bottle) but with encouragement from her therapist Heidi, we attempted to feed her one day at a local restaurant. This discovery has made us very happy as now we don’t feel so homebound. Yay Hadley!



2.) She has finally starting to show signs of huger. The first several weeks Hadley never showed us that she was hungry so we usually fed her when she got sleepy as we knew she only dream feeds. But recently she has begun to show us when she gets hungry. It usually accompanies her being sleepy but her hungry/tired whine is distinctly different that just her tired whine. When she does this behavior and we offer her the bottle she leans forward and grabs ahold of the bottle and brings it to her mouth. We are floored!



3.) We can feed Hadley in her room with no distractions. In the early days of her tube wean, Hadley often had to be distracted by watching her favorite TV show, Sofia the First (side note: she ADORES Sofia…I know she’s 7 months old…I can’t explain it). Her therapists were initially alright with this distraction because it meant she would accept her bottle. However we were becoming concerned that this would snowball into a behavior that we could never break so we began trying to feed her in her room with the lights low and her favorite white noise machine on. We also employed a few exercises that her therapist, Brie, taught us. She has started to be OK with this but still struggles sometimes so we have to have her pacifier on hand to calm her down if she gets a little too distressed about her bottle. Our DVR has gotten a nice break from all the Sofia reruns!



We continue to work with Spectrum on a weekly basis. Hadley also sees an Occupational Therapist at home once a week. She is also being closely monitored by her pediatrician who receives input from her Gastroenterologist, Dietician/Nutritionist, and Geneticist.



We will continue to update as Hadley progresses on a separate blog that we will set up soon.



Thank you for all of your support and believing in Hadley!

