My feeds have gone up to 57 cc's. The feedings have changed from continuous to bolus feeds. A syringe is connected to the tube in my nose and it is held above my head. With the force of gravity it goes into my stomach. Hopefully in the next few days they will just be bottle feeding me the breast milk. I am ready to have the tube removed from my nose. The nurses said the bolus and bottle feeds both take about the same time for me to eat. This doesn't make much sense to Mom (or the nurses), so Mom asked the doctors about it. They said they want to make sure I am not "dumping" my milk before going to bottle. They said if I tolerate this well we should be going to bottle very soon. I got to breast feed again and did very well. We monitor my intake by weighing me on a precise scale before and after I breast feed. I have a really bad diaper rash from the enzymes. My bottom skin was actually bleeding. The nurses have made a mix of desitin and this pink calamine like powder that they coat on my skin. It seems to be helping a bit.
Mom, Dad, and I had a nice surprise visit from Cameron's mom, Ms. Debi, today. Cameron is my new friend that has CF too. They were very pleased to have met Ms. Debi. She has provided a lot of good advice and support.
Love, Ben
8 comments:
Good Morning Beautiful Benjamin,
Love the new pictures especially the "kangrooing" one. We are so glad to hear how well you are doing with your feedings - keep up the good work Buddy. So sad that you have a nasty diaper rash. Soon you will be home and your mommy and daddy will take care of you. Love you bunches, God Bless you, Papa Phil & Grandma Carol
HI! I am so happy to see you are doing better. I am hoping you get to go home soon! What beautiful eyes you have!!! All our love.
The Bishop Family
Hello, Little Benjamin, I think I'm your 3rd cousin Diane on your Grandma's side.I'm so glad your doing so much better, its so nice to hear good news.The updated pictures are beautiful looking more like Mom a little like Dad.Bennie you are so blessed to have such wonderful parents & Grandparents the love in your family shows by the words they say about you, You are blessed Love Bob & Diane
Hi Ben! Kangaroo Care looks like so much fun...& the picture is absolutely adorable! I'm glad that your bum is getting a little better, and that you are almost a bottle feeding baby! Very exciting stuff! Big hugs for you!
Lots of Love - Meghan
Hey Peanut Butter! I miss you so much! Emma still can't stop talking about you, just think...once she actually meets you then that will be the ONLY thing she talks about, and she doesn't ever stop talking...I wonder which family she got that from!!! Well I will see you soon, and can not wait. You are getting so big, very good! Keep up all the good/hard work you have been doing! Love you more than you know! Tell my favorite sister and brother in law I love them so much too! With love, Cousin Emma and Auntie Annie!
Hey Ben, sounds like things are really moving in the right direction! A few more weeks of continuous improvement and you'll be home in no time! You're going to love your house - your mom and dad are there, as well as Mickey and Cali. They're not going to like you too much at first, but they'll learn to love you - cats are slow ;-)
I'm hoping you'll be released before May 9 and can come down and make the walk with us. Although you'll probably go home that night wondering who all those crazy people with giant heads were looking at you in your stroller!
Keep latching on - what a thrill for you and mom to bond like that. It makes me want to cry happy tears!
I love and miss you, mom & dad!
Love, hugs and kisses, xoxo, Aunt Carin
Kati,
I love the picture of Ben inside your shirt, how cute. You are such a beautiful wonderful mommy. How lucky did Ben get to have you and Chris for his parents. We love you lots. Aunt Jane and Sara
Ben you are so cute. No wonder with who you have for parents. Your Great Grandma Carla talks about you a lot. Just keep getting bigger. You are beautiful. Tell Mom & Dad we love them too.
Joan & Eddie (from Sarasota Sands, remember us Kati??)
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