Alexander has been our little mystery man from pretty much birth. He was the most sleepy baby I've ever seen and used to scare me by holding his breath at night. His 2nd night in the hospital I fell asleep nursing him, and in my groggy, postpartum haze tried to rouse him as he lay next to me perfectly still...very still. I started to panic thinking I somehow must have smothered him because he would not wake. I unswaddled him, picked him up but he would not wake and would not move. I pushed the nurses button to alert the midwife as I continued to try various ways to wake him, or find any signs of life because the little turkey was holding his breath. The midwife rushed in and I explained what happened. She said let me have him my hands are icy cold, I can wake him. She managed to rouse him enough to weakly nurse and immediately go back to sleep and it was pretty much like that for the next month. When he was awake he was very awake but he slept a lot and never cried to be fed like babies typically do.
I kept him alive by timing his feeding because he would never alert me he needed to eat. Gwendolyn was a very easy baby so I figured lightning may strike twice indeed at least when it came to babies. He was a happy and easy going baby. He did like to snuggle next to me at night and would insist on doing so but was never a great eater. At a month he was already falling on the growth charts for weight but wasn't dipping much for length that is until he hit six months and that too started to plummet but we were getting ready to move back to the US or Australia we really weren't sure where my husband's job would take us. I tried feeding him homemade baby food from whole foods I would ground up in a baby grinder like butternut squash, cooked carrots, peas, the typical foods you pay a premium for at the store but are full of salt and preservatives. It was more work but I wanted to know what my baby was eating. He would consistently refuse any I tried to offer but I was still producing a lot of milk and solid foods weren't critical at that point so I didn't worry too much about pushing that on him but did try to increase the amount of nursing sessions because he'd always fall asleep nursing and had a very weak suck even as he aged. His midwives who would weigh him at the baby clinic were increasingly becoming alarmed and would call our GP who would then dismiss it and insist he was fine or that some babies just slow down on weight gain or grow at their own pace, etc.
We moved back to the US when he was 9 months old. At this point he was starting to show signs that something was really not right but we were in limbo as far as a permanent residence and insurance was in flux for a bit. I just continued to do what I could and as soon as it looked as if our house would close I made an appointment with our family practice doctor we had before leaving to the UK. He referred us to the same Endocrinologist who saw my daughter at 16 months for poor weight gain/failure to thrive. We couldn't get him into even that Endo because our insurance was about to change yet again and the receptionist would not allow us to make an appointment until it did. By then he was almost 14 months and weighed a mere 15lbs. By a year most babies triple their birth weight which should have easily put him over 24lbs. He still would not eat anything except breast milk even though he was presented with table food on a regular basis. His blood work showed his keytones were quite high which made us concerned he may be diabetic which would not be a stretch given my family history of child onset diabetes. The endocrinologist we saw at the end of January insisted he did not get any lab work and questioned whether I was feeding my kids and suggested I make an appointment with their nutritionist. I was upset as I drove the hour and fifteen minutes back from Temple from that appointment and contacted our family doctor to find out why the lab work wasn't sent before his appointment at the endocrinologist who wouldn't follow up with us till the end of the following month. Our family doctor said they did get the lab work and faxed back the lab work along with the other limited chart notes they had on our son since he only started seeing them a couple months prior. They helped us get in to see an endocrinologist who to this day is probably the reason our son is still alive. Dr. Smith at Dell Childrens was literally a life saver. Our first appointment which came less than two weeks after seeing the other Endo came into the room head down reviewing his lab work into the room, looked up at Alexander and walked right out for about 10 minutes. When he returned he took a formal assessment of him and told us we were to see Dr. Heintz at Specially for Children gastroenterology the following week. What I didn't know at the time was that time between when he walked back out he had called to get Alexander in to see Dr. Heintz immediately and then called our family practice doctor and chewed him out for not getting Alexander seen sooner. Our family practice doctor has always been on top of things and it was not his fault that we got stuck in medical bureaucracy so we don't blame him the least bit.
The following week we saw Dr. Heintz with gastroenterology and had a similar experience. He walked in and assessed Alexander and then walked out for quite a bit. He was quite friendly and Alexander was quite taken with him. I told him I just found out I was expecting our third baby and was really worried because Gwendolyn has also had eating issues and it looks like Alexander is following a similar path. I did not realize the gravity till he returned back in the room and told me he preliminary admitted Alexander for that Friday but needed our ok to solidify it with the hospital at Dell Childrens. He wanted to run an MRI and drop an NG tube to help him start gaining weight. I had no idea what any of that meant except none of it sounded good. I asked what the purpose of the MRI was for and he said just to rule out cancer. My heart sank with those words. I knew he was trying not to alarm me and gave us information and tried to reassure me that he'd be ok. I didn't know at the time he wasn't certain that would be the case and would later admit that Alexander would have probably not made that follow up appointment with the first endocrinologist we saw.
We spent that weekend which happened to be Valentines Day weekend in Dell Childrens running a ton of tests and learning all about NG tubes and how to properly drop them and care for them. I was very, very sick with morning sickness and it was a real challenge to keep it together. Jeremy up to that point did not know of our fifth family member but found out on Valentines Day through a book I made of our family in a fun story form for him to read to the kids with the ultrasound on the last page which he did over skype so Alexander could hear it too. None of the tests came back positive for a reason of Alexander's lack of desire to eat. This was just the beginning for us in our journey for answers and a cure for our little boy. We thought the NG tube would be temporary and he'd be off it once he started to gain weight. Little did we know.
It was around this time we learned about food therapy which I never knew was a thing up till then. A speech therapist as referred to come to our home to work with him twice a week but no progress was being made and Alexander was not a cooperative subject. He would take a bit of food to get the reward only to hide it and spit it out once he got what he wanted. We decided to start having him also go to therapy at the same place as our daughter who was receiving speech and OT already there after the owner and therapist who has become a very good friend told me that they could do food therapy with him there and that they had other kids who currently were doing food therapy with them.
He's been there ever since and adores his therapists however we hit a standstill in his progress. His GI doctor wanted us to go to Our Children's House in Dallas but their wait list to get in is very long and we were limited in time due to my pregnancy. After our experience with the first speech therapists we weren't sure their methods were really going to work with him and we also had just found out our daughter was diagnosed with Autism. Just a lot all at once and I was overwhelmed physically and emotionally. I still was reeling from our international move and all the issues we had leading up to returning to the US so mentally I wasn't really able to handle a month long inpatient program. By the time we were to get our initial assessment to even be considered a patient, I was less than a month away from my due date and so we had to give up our spot. One week away from my due date Alexander had his first and hopefully last surgery placing his mic-key button. He tolerated the surgery well after the anesthesia wore off. My normally calm and easy going boy woke up from the drugs fighting and very upset. It was heart wrenching and made me question if we made the right choice. His night nurses were very compassionate and let him sleep next to me that first night which really seemed to help calm him. He was floppy and seemed to be in a great deal of pain till his sister saw him the following day and from that point on he was on his feet and back to being a happy little guy.
We've had the mic-kay button for over a year. It's become a part of our life and we've learned to work around it and it's our family's norm but it hasn't been easy. He's getting older and the things he used to take orally he won't or will only take occasionally and in small insignificant portions. He's almost 100% tube fed. The regression has been alarming and he has failed to gain weight since July despite increasing his tube feeding quantities. It was clear we needed more help. His therapists who have been working with him almost two years now suggested we look to Our Children's House which has both an inpatient and outpatient program for possibly more help than what they could provide since they have more resources and a larger team to trouble shoot these problems. They have a program that focuses entirely on feeding issues and it is well known. We have turned our hope to them to help us find some help for our little boy. We still don't know why he won't eat. Genetic testing turned up no answers just more questions. We even stumped the neurologist. His only hope really at this point is to be convinced the importance of eating and in the right quantities if he is to ever get off the tube and lead a normal life. I am so grateful for the advances in medicine and for the first time I don't feel entirely alone in this particular trial.
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