Doing well at home

Seeing as Aidyn had been tolerating his feeds well and having no problem with bowel movements, he was discharged from Children’s Hospital Boston on September 26th. Upon discharge, Aidyn weighed in at 11.3 lbs (we tend to go by the pediatrician scale at home). His labs indicated his bilirubin levels were normal: total was 1.0 and direct was .3!

To celebrate, we had dinner at Applebee’s down the street from the host family’s home. Joey’s good friend flew out from Indiana a few days prior for support and to meet Aidyn for the first time. He joined us along with my brother, Bert, who lives in Boston. We had a nice time and Aidyn enjoyed looking at all the people and decorations.

Taking in the scenery.

The following day, we flew home to Arizona. Aidyn was a perfect baby in flight. He slept most of the 5 hour and 45 minute trip. Thank goodness for non-stop flights. We have since settled back in to the swing of things at home. Alyssa was a thoughtful sister and bought Aidyn a pooh-bear, a book and interactive nursery rhyme book with a gift card she received. She’s transformed into a happy big sister instead of a worried and resentful one. It helps that she has wonderful grandparents that come and stay with her while we go to Boston. She has been through a lot emotionally and has handled herself better than we expected.

Last Tuesday I increased Aidyn’s feeds back up to 20cc’s per feeding and it seems his bowels are slowing down a bit, a good sign. To my surprise, Dr. Puder gave us a call this morning to check on Aidyn’s progress. This man is always thinking of his patients and never sleeps! He’s amazing!
Yesterday we had our first visit from the new home health agency. I am pleased with the nurse’s professionalism and her nursing skill. I don’t normally do the central line dressing changes myself, but I did yesterday with the nurse’s guidance. She likes to be sure the parents can do them and was happy with how well I did. I told her I wouldn’t mind if she did them most of the time since I was happy with how diligent she was using sterile techniques. Aidyn weighed 11 lbs 8 ounces and his vitals were all good. The nurse was pleased with Aidyn’s surgical incision. She commented that he’ll have very little scarring…thanks to Dr. Puder.

Early Intervention will be starting services next week to help Aidyn catch up to the developmental level of his corrected age. They feel he should receive services because he has been through so much but he should catch up with no problem. We’ll work on tummy time and other therapies to increase his upper body tone. This will help him achieve better tracking, the ability to sit using his arms and adaptive development.

Since being back home, we’ve noticed how much more comfortable Aidyn is along with better, quality sleep. I hadn’t realized how bothersome the ostomy was for him. It’s so nice to hold Aidyn without limitations. Cuddles are much more fun now. Aidyn seems happier, too.