Sorry you've had to wait so long for an update! Enjoy the pictures of our non-jaundiced baby! She's beautifully pale & white, just like us other pasty-looking people! No more icky orange/yellow! May has been a trying month. It looks like this baby will not be getting the hang of breastfeeding so I think I'm hanging up my hat at trying. This is a very difficult decision for me as I've really enjoyed nursing Riley & Shelby, but we need to be able to get on with our lives and not have me so tied up with pumping all the time. Her feeds are challenging enough as she still can't use a regular nipple and has to use this. She saw a speech therapist about 2 weeks ago. We found out that she has a strong suck, but cannot handle that fast, or moderate for that matter, flow of milk. In fact, the newborn "slow" nipples are too fast for her, too. We have to help regulate the rate of her feeds with the special nipple we use. This week she had a swallow study done as she is still having trouble with her feeds. It showed possible reflux and that she has a delayed swallow. We are hoping that with time and maturity that her swallow improves. She is eating enough, though, and growing, so that is good. It just takes a while and a lot of effort to feed her. We're just having to re-learn some things as the other 2 girls breast fed. Having a bottle-fed baby is a learning experience for us. Earlier this week she weighed in a little over 9 pounds. Can you believe that?!?! At 6 weeks, she is finally the size her cousin William was at birth!!! Poor Aunt Heather!
Shelby is doing fine health-wise. Behavior-wise she is a bit of a challenge these days as she is exercising her ability to say "no" and be a stubborn 5-year-old. Last Friday she had a check-up in Chicago with the orthopedic doctor for her spondylolisthesis. He is saying it is a stress fracture for her and wants to monitor it with x-rays every 6 months. On her 5-year anniversary of her Kasai procedure (and diagnosis of Biliary Atresia) she'll go to liver clinic in Chicago and have an ultrasound to check on the cyst(s) in her liver. Please pray that they haven't gotten any bigger. She hasn't had to be seen by this particular doctor for a year. GO SHELBY!
Miss Riley is looking forward to summer break although she loves school immensely. I think she is excited about warmer weather and swimming. She keeps devouring books and will require frequent trips to the library this summer to keep her content. She is quite the author and illustrator. I'll have to post one of her stories on here sometime.
Everyone have a safe & happy holiday weekend!
Yesterday Avery & I met with Dr. Deutsch for her MRI results. All looks great with her gray matter! There is some small areas of bleeding, not in the brain, but between the dura and the outside of her head (I think I got that right). Most likely that is from brusing during her birth. He said that there was probably more and that it is already resolving on its own. It is not an issue right now, but, at the recommendation of the Neurologist he consulted, she is to have another MRI in a month. They just want to make sure those areas aren't getting larger. He was very impressed at her weight gain (14 oz.) since he had seen her last week, how much better her color was, and how much more alert she was. He admitted that he was quite concerned last week after we left that Avery was headed for a feeding tube.
Now the challenge is keeping up her intake while getting her back to the breast. Any suggestions? I'll welcome any. Wish us luck!
Thanks to all who have sent well-wishes and prayers Avery's way. Her blood and urine tests came back looking pretty good. Monday evening's ultrasound of her brain was cancelled by the radiologist. He thought that an MRI would be a better test for what Dr. Deutsch is looking for. Tonight at 9 p.m. Avery had the MRI done at Rockford Memorial Hospital. Dr. Deutsch (and us) wanted it done without sedation and it was a success. I got to go in the room with her and she did not move a bit. I guess that's one bonus of having a sleepy baby. She is perking up a bit, though. Her feeds are going a bit smoother (and quicker) and she is sending things out the other end on her own, too. She still needs to be awakened to eat, but also gives us wonderful awake, calm, and alert time. She is, as of today, back to her birth weight of 7 lbs. 10 oz.!!!! Go Avery!!! Tomorrow she goes for a weigh-in at the Pediatrician's and I'm sure he'll be pleased with her progress. On Friday she sees Dr. Deutsch and hopefully we'll have the MRI results by then. Please keep the prayers coming. Thank you.
