Well, Kaylyn's home is still at the hospital. We were hoping to be home for good this week but it looks promising for next week! Kaylyn has been losing weight and having a very hard time keeping her food down. The diagnosis is reflux. She has had terrible heart burn all week and burning in her throat. Kaylyn felt much better today and is starting to eat like she was down in Michigan.
The highlight of the week was getting rid of her oxygen! That is a HUGE milestone for Kaylyn! On Monday night after I left, she ripped the tape holding the nasal cannula in her nose off her face and threw it over the edge of her crib. Poor little girl has to tell us everything! She had done great without it all week! That means no monitors once she is ready to be home!!!!
Kaylyn failed the hearing test that was done on Monday. The test that was done recorded brain wave activity when sound was produced through a rubber tube taped in her ear. The sound produced was a single frequency. Dr. Carver visited with Dr. Klein about the results. They plan to do a multi-frequency hearing test when they can get the proper equipment to see where the trouble is. Dr. Carver would like to have this done before she goes home. That will be nice so we will not have to drag her to another appointment after she gets home. (the less exposure to germs the better.)
The nurses are giving us a crash course in infant massage over the weekend. Being as we are unsure of her ability to hear or see, we want to utilize her sense of touch as much as possible. We have homework (lots of reading) to do before we have our first practice session tomorrow night!
Please continue to pray for Kaylyn. She is such a tough little girl--she has come so far! We want to thank everyone for their kindness, support, and prayers! We need them right now!
Kaylyn had a wonderful weekend! She was able to eat with comfort finally. We are still having some issues with keeping it down, but it gets better each and every day.
Kaylyn loves to be awake now. She kicks her legs and swings her arms constantly. She also loves massage! She even let me work on her face yesterday with no objections! (even around her eyes)
Dr. Carver told us yesterday that the plan will be to room-in at the hospital Wednesday night and go home Thursday, as long as things keep going alright and she starts gaining weight. (She was 5 lb 4 oz last night.) Hopefully in the three remaining days at the hospital we will get the hearing test done.
We are so blessed to have a wonderful daughter and supportive family and friends. Please continue to keep Kaylyn in your prayers!
HAPPY 4 MONTH BIRTHDAY!
Kaylyn had a great day again today! She was interviewed by the KMOT news team and will appear on the news tonight at 10:00. Of course she was so excited she slept through the whole thing!
Dr. Klein, audiologist, was in to visit with me today about Kaylyn's hearing test. She said there is definitely some sound there. She said that Kaylyn can hear the highest and lowest frequencies but appears to have significant hearing loss at any of the other ranges. Hearing aids will help Kaylyn make up for the hearing loss. She will be fitted for them around Christmas time. We were very happy with that outcome!
Going home day is soon approaching! Kaylyn now weighs 5 lbs. 12 oz. She is eating very, very well and growing like a weed. Mommy and daddy will spend the night with her tomorrow night. Thursday morning we will go straight from the hospital to the clinic for her first RSV shot. She will receive one shot monthly with the hope that if she does get any kind fo respiratory infection (which of course we hope she does not) she will be able to fight it off a little bit better! It sure will be nice to be at home as a family!
Thanks again for all the kindness, support, and prayers!
Kaylyn Rae is finally home!!!!! She is enjoying some tummy time on mommy lap right now. Daddy had to give her a tour of the house right when we got home! One thing we discovered during our night at the hospital is that Kaylyn is quite the night owl. One member of our family got a lot of sleep and two got hardly any. I'll let you guess who slept---here is your hint: HE snored all night! It was exciting just to listen to all her little noises and watch her every movement. She is quite a special girl!
She loved her car ride also. Right now, it is probably just the right distance. She sucked on her pacifier the whole ride and listened to classical baby music.
It was hard to say goodbye to all our friends at the NICU. We will miss them all so much! We received the best care in Minot and want to thank all our nurses and doctors from the bottom of our hearts!
I will keep updating the web page throughout the year. Please continue to keep us in your thoughts and prayers! We still have a lot of teaching and learning to do with Kaylyn's eyes and ears.
Kaylyn's picture is on the Trinity webpage. www.trinityhealth.org
Click on baby bites and find her name!
We had a wonderful day and night. She is pure joy!