Monday
--Mike went back to work. We were both sad that he spent his whole two week vacation in the hospital and that he only got a weekend at home with Tyler before he had to go back to work. I was also nervous about taking care of Tyler without Mike’s support. To help ease the transition, my mom and dad came down from Manteno. They helped out with the cooking and cleaning and helped take care of Tyler so I could catch a couple hours to nap here and there.
--Tyler had his first pediatrician’s appointment. He weighed in at 7 lbs. 3 oz. (up from 6 lbs. 15 oz. when he discharged from the hospital on Friday). The doctor said he looked very healthy upon physical examination.
--I got a call from the genetic counselor at the Children’s Hospital in Peoria. She said the geneticist wanted us to bring Tyler in for an appointment Thursday to discuss the borderline abnormal fatty acid deficiency on his newborn screening. They drew some additional labs at the end of Tyler’s hospitalization and the geneticist wanted to go over those results as well.
Tuesday
--We kind of celebrated Halloween a few days belated by dressing Tyler in one of his two Halloween onesies. I never did get around to getting him a great big pumpkin to pose next to but we still got a couple cute pictures.
Tyler and his Mummy
"I love my Mummy!"--My mom and dad babysat Tuesday evening so Mike and I could get away for a dinner alone. Granted we only went to Chipolte and Target to pick up diapers, but it was nice to have some much needed alone time.
Wednesday
--More rest throughout the day to try to catch up on all that sleep I lost. I was somewhat successful!
Thursday
--We took Tyler to the geneticist in Peoria. It’s all very complicated and I don’t even know that I have the details right but basically Tyler had a borderline abnormal result on his newborn screening for a fatty acid deficiency called very long-chain acyl-coenzyme A dehydrogenase deficiency (VLCAD). Basically it’s a disorder that prevents the body from converting fat into energy during times of prolonged fasting or illness. Symptoms typically present themselves during infancy and include low blood sugar, lethargy and muscle weakness. None of the pediatric hospitalists acted too concerned with the result and our pediatrician said it’s not too uncommon for a premature baby to have a borderline abnormal result. However, they explained that because Tyler did suffer from complications early in life, it was a good idea to get some additional testing done to rule out this disorder sooner than later. So while Tyler was at the hospital, they drew blood to repeat the newborn screening and they also took extra samples for a diagnostic workup. At our appointment, the geneticist informed us that the blood sample drawn for the repeat newborn screening was insufficient and basically gave us no new information (great…my confidence in the health care industry is really going down the tubes at this point). However the diagnostic lab results indicated that Tyler’s levels had normalized for this VLCAD condition but that another level was elevated for a similar condition. So they repeated that particular lab (poor guy had to have more blood drawn) and they are also going to do some DNA testing to determine if Tyler has any mutations in the genes known to cause these disorders. We should get the results back within a month. The good news is the geneticist did not act too overly concerned (he agreed that he looked very healthy upon physical examination) and he did not recommend any sort of medical intervention at this time; just to keep feeding him every 3-4 hours to prevent periods of prolonged fasting. Our little chunkster had already gained 6 oz. in 3 days—up to 7 lbs. 9 oz. at that appointment!
Wednesday
--More rest throughout the day to try to catch up on all that sleep I lost. I was somewhat successful!
Thursday
--We took Tyler to the geneticist in Peoria. It’s all very complicated and I don’t even know that I have the details right but basically Tyler had a borderline abnormal result on his newborn screening for a fatty acid deficiency called very long-chain acyl-coenzyme A dehydrogenase deficiency (VLCAD). Basically it’s a disorder that prevents the body from converting fat into energy during times of prolonged fasting or illness. Symptoms typically present themselves during infancy and include low blood sugar, lethargy and muscle weakness. None of the pediatric hospitalists acted too concerned with the result and our pediatrician said it’s not too uncommon for a premature baby to have a borderline abnormal result. However, they explained that because Tyler did suffer from complications early in life, it was a good idea to get some additional testing done to rule out this disorder sooner than later. So while Tyler was at the hospital, they drew blood to repeat the newborn screening and they also took extra samples for a diagnostic workup. At our appointment, the geneticist informed us that the blood sample drawn for the repeat newborn screening was insufficient and basically gave us no new information (great…my confidence in the health care industry is really going down the tubes at this point). However the diagnostic lab results indicated that Tyler’s levels had normalized for this VLCAD condition but that another level was elevated for a similar condition. So they repeated that particular lab (poor guy had to have more blood drawn) and they are also going to do some DNA testing to determine if Tyler has any mutations in the genes known to cause these disorders. We should get the results back within a month. The good news is the geneticist did not act too overly concerned (he agreed that he looked very healthy upon physical examination) and he did not recommend any sort of medical intervention at this time; just to keep feeding him every 3-4 hours to prevent periods of prolonged fasting. Our little chunkster had already gained 6 oz. in 3 days—up to 7 lbs. 9 oz. at that appointment!
--Grandma and Grandpa Breclaw went back to Manteno but we want to thank them for coming and helping out so much! Tyler had lots of fun spending some quality time with Grandma and Grandpa!
"Thanks Grandma and Grandpa! I miss you already!"Friday
--Tyler had a little trouble keeping his temperature up after he peed on himself 3 times within a 5 minute period, resulting in an impromptu bath. I noticed he felt a little cold afterwards and took his temperature to find he was right at 97.5 (the pediatrician wanted us to call if it got below 97.5). The good news was our little peanut was able to warm up to 98.6 within 15 minutes of being bundled up and held tight! It gave us quite the little scare (déjà vu anyone?!) but we were relieved that Tyler could regulate his temperature on his own.
--Alyssa and Emma came down to meet Tyler! Emma seemed to have lots of fun exploring a new house and pulled out every one of Tyler’s toys (the boy DOES have rattles and rubber duckies galore)! I hadn’t seen Emma since her first birthday party a couple months back and it was super cool seeing her so independent and curious and exploratory! And of course I always enjoy Alyssa’s company and appreciate her support! And Tyler was super excited because Emma was nice enough to let him borrow a couple of her favorite playthings (her Bumbo, activity mat and tummy time mat)! Thanks Emma!
--Alyssa and Emma came down to meet Tyler! Emma seemed to have lots of fun exploring a new house and pulled out every one of Tyler’s toys (the boy DOES have rattles and rubber duckies galore)! I hadn’t seen Emma since her first birthday party a couple months back and it was super cool seeing her so independent and curious and exploratory! And of course I always enjoy Alyssa’s company and appreciate her support! And Tyler was super excited because Emma was nice enough to let him borrow a couple of her favorite playthings (her Bumbo, activity mat and tummy time mat)! Thanks Emma!
1 comment:
We had a great time meeting Tyler...he's such a cutie!
Have fun today with him...you're a great mom!
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