Abby was born in June 2012 as a healthy full-term 6 lbs 13 oz baby girl. We were so excited to welcome her into the world, the past
Her feeding struggles did not start right away. Actually we were so excited because she was the perfect baby, she was eating great, and sleeping all night pretty much from day one. Then at about 6 weeks old, everything changed. Abby began refusing the breast and breast milk via bottle by screaming her little heart out, turning her head, arching her neck and kicking and swatting like crazy. What in the world!? So as any mama would do I started to go down the list of what could be bothering her. I quickly took everything I could think of that would be bothering her out of my diet (dairy, soy, veggies, beans, garlic, onions, spicy, etc etc etc) but still, 6 weeks later my days were still filled with a very very unhappy baby and a stressed out overwhelmed mama. On top of the elimination diet, I tried different nursing positions, different bottles, you name it (these were things the pedi also recommended we try!) The only time I could get her to nurse was either when she was extremely sleepy or in her sleep (there goes my plan to not nurse to sleep!!).
Finally, after exhausting all our options of trying to figure this out on our own and having a baby who was gaining very little weight, I started taking videos of her attempting to nurse and sent them to my pedi. Right away she said it looked like silent reflux (acid reflux without all the spit up). So, at about 4 months old, we started her on Zantac. We didn't see too much of a difference, but okay in our heads we thought, maybe it's helping a little. Right about this time Abby's night sleep went down the tank. I guess I should also mention that she was one of those babies that would only nap when being held. I had told myself that I would not be one of those moms...well when you're little helpless baby is in pain, you will do just about anything.
The first month of being on Zantac, Abby still was barely gaining weight, she gained maybe 3 oz's that month at most. We requested to see a GI (gastroenterologist) at this point since we were still struggling with her feeds. I should mention that she also completely refused a bottle since 6 weeks old, breastfeeding to sleep was her only way of eating. Around 5 months old the GI suggested we start solids, maybe she will take to solids better. Initially she would eat great, but we saw her interest and desire to eat begin to decline. And she continued to only gain 0-3 ounces per month. She had fallen completely off the charts and we were told that she is Failure to Thrive. What? Our baby girl is failing to thrive...huh!?
Over the next few months we had a number of tests done.. an upper GI, endoscopy, abdominal ultrasound, EEG, EKG, Echo, Head Ultrasound, blood tests, stool tests.. you name it! All was coming back mostly normal. She was anemic, but this was due to her lack of eating. We also learned that she has delayed gastric emptying which was really tough to diagnose since she was not a big vomiter. But since we started pushing solids, we noticed that when she would eat a good amount, that night she would be throwing up and throwing up. Around 8 months old we started giving her erythromycin to help her stomach empty faster and her throwing up seems to have stopped.
We have also taken her to Nuerologists, Cardiologists, Occupational Therapists, Dieticians, etc - we have gotten no where. We thought maybe Sensory Processing Disorder, but the OT ruled that out. The OT at Stanford that we were seeing actually wrote us off saying, good luck, babies who have no desire to eat are the hardest! She suggested shoveling food into her mouth as quickly as possible, giving her high fat foods, etc - but thats all well and good IF we could get her to open her mouth!! Abby's MO has been almost complete food refusal - she turns her head, gets tight lipped (so tight I can't even pry it open!), pushes us and her food away, spits food out and starts fussing and crying. We can usually get a bite or two in, but after that, forget it!
Abby is now 10.5 months old and only weighs 14lbs 9ozs - her pattern of gaining 0-3 ounces continued until just this past month when we started to see her lose weight. NO NO NO!
We have been praying that the Lord would completely heal her from this and we will continue to do so! A special thank you to all our family and friends who have prayed along side us!! As this has continued to go on, we have gotten to the point where the doctors have said if we don't see significant weight gain in the next few weeks, more drastic measures will need to be taken. Our GI suggested we look into the Los Altos Feeding Clinic, a world-renowned Feeding Therapy Clinic, and its right here 30 minutes away! The bad news is that they do not take insurance, however we are currently trying to find out if we can get reimbursement from our insurance company. The cost will likely be in the $10,000-$20,000+ range! Abby will be going in for an evaluation next week or the following.
The good news is that other than the food refusal, Abby is developing great - she engages with us, she waves and claps, crawls and cruises and loves to dance. Though we struggle on a daily basis, we know that God has a greater purpose for this all and we look forward to seeing his plan for Abby's life!
More to come as we continue on our journey!
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