And last but not least...we have finally heard the "H" word, Home! Its the first time in our venture here in the NICU that it's been thrown out there! At this point the only thing that is keeping her at the hospital is eating. Due to her heart and also down syndrome, eating from a bottle is A LOT of work. (We'll show you some proof) We talked to the doctor yesterday about doing a G-Tube ( tube that they put through her tummy) so we can take her home sooner. That way we could continue working with her on bottle feeding, but still be able to supplement her with what she doesn't finish, because our biggest goal is to get her to about 12 pounds so she can have her heart surgery. Wayne and I really liked that idea, any thing to get our little girl home sooner than later. She would most likely need to come home on oxygen too, so they have changed her over to the type of oxygen that she would come home on and she's doing well with that.
We still don't know when the day will come that we can bring her home, but at least the ball is rolling in that direction. Now for your viewing pleasure, pictures and video clips of Kaelyn doing all her new tricks!
Make sure to get behind my ears
Ahh, now this is nice, I've been waiting for this moment my whole life
Come on in, the waters great!
Look at my tidy bed, you should have seen it a week ago.
Boy this eating stuff is a lot harder than it looks
Sleeping in my Big Girl Bed
Watch closely, I tried to slip right out of mom's hands
This is the second time mom tried to feed me, after about a minute of sucking I was out cold
29 comments:
She has gotten so much bigger from when I first started following your blog! Good job Kaelyn! I am so glad to hear that you have finally heard the "H" word!! We'll pray hard for that to come true!
Gosh she is cute! She is so much bigger already!
She is growing fast. Keep up the good work Kaelyn. I am happy that home is coming closer for you. We keep you in our prayers.
she's huge, and she loves that bath. Ok here I go again because I've been in the NICU. Her eating shouldn't keep you there. DS kids never eat like they should, they should just send you home with the NG. After she has her heart surgery or even sooner she should be able to drink the whole bottle. You don't need to do a g-tube and put a hole in her belly that she may not need for too long. They didn't even bug me about getting Jax off the NG tube to go home. But about a month after he was home sometimes he would drink the whole bottle. It wasn't until he was intubated for 4 months that we decided a g-tube for him because he would not eat at all by mouth.
Ok, sorry for my rant.
She is getting so big! I can't believe how much she has changed. She is a doll. Isn't it the best thing ever when they start talking about them going home? Good luck with the feedings!
I love this blog. i love hearing about sweet little {getting bigger} Kaelyn. The pictures in this post are so dang cute! I love it! I have been praying for your family and hope that you will all be blessed. If you need anything please let me know.
*Karen Marx
Man, she is so dang cute. I can't wait for you guys to possibly be home. Luv ya lots!
so wonderful! Such wonderful news!
She is getting so big. I loved the first time trying to bottle feed and watch them know just what to do. Pretty amazing even though they don't have much energy at first. Our little man still struggles with it and sleep alot!
I can't wait to follow your story at home. Hang in there because the last couple weeks are by far the HARDEST because you have been so ready to get home.
This is my first time reading and I would like to say you have an amazingly beautiful little girl and what a fighter she seems to be! I'll be praying for you all and hope that you definitely will be able to go home soon!
Oh, and I was going to say that with Taylor, it helped to get her to take the bottle if I held the bottle with my thumb and pointer finger towards the top and put my middle finger under her chin to help support it. If that even made sense... it was a little trick one of the nurses at the A.F. NICU taught me and it worked wonders. She says that it helps them because of their low muscle tone in their jaws.
Congratulations! We are so happy that everything is going good. It is nice to her the home.
I agree with Lacey - have her go home on the NG tube wait until heart surgery and then you will notice a big difference in stamina and being able to drink from a bottle. It really is night and day difference before and after surgery.
We were so glad we were able to meet you last week. We look forward to hearing when she gets to go home. Thanks for stopping by and saying hello to Carter.
Three cheers for the "H" word!
Sounds like you're getting a lot of good advice from the comments :>)
She looks lovely in her bath pics. Squeaky clean!
Yay Yay Yay!!!!
Go Kaelyn!!
Love those bath pics.
She is so cute and had grown so much. I'm so happy for you that your are finally hearing the word "home". What a beautiful little one you have...you are truly blessed.
I am so excited for you guys - finally the 'H' word! Drinking from a bottle too! What a big girl!
Glad to hear she's doing so well. Also glad to hear about the "h" word! She just keeps getting cuter and cuter! I love the picture of her in her "big girl" bed.
HOW DID I MISS THIS EARLIER!!My daughter Caitlin called and said "Mom,no comment from you.Didn't you see the update?"Well,is she not an amazing,not so little,thing.She is beautiful and strong and she is definitely finding her way and you guys are too!As for the g-tube,my take is a little different then a few of the others,only because it was the only way Zoey was going to get out.Mind you,she was REALLY still sick when she was discharged.Not nearly as strong as Kaelyn is even now but the g-tube for us was a literal life saver.I suppose defer to her doctors and most of all listen mainly to what your gut says.That will give you the answer.Kisses to that feisty one.I am SO proud of her and both of you too!!
Ps.love the bracelet in the tubby picture .. honored to see yit.ou wearing
She's a beauty!! Doing great too.{{{{HUGS}}}}}
WAY TO GO KAELYN.....she is FANTASTIC!!!!!! Just look at her she is looking soooooooo cute, she is so special! Well Mum keep the faith and things will only go upwards from here!
I just love her pictires especially her taking a bath!
All is good. I am so happy for your beautiful family.
Love,
Dari
Jeanna! She looks great and beautiful! I hope you can take her home soon! I have really been thinking about you! While in the hospital I thought that I had it rough and then I would think of you and how hard it probably was! But look at you up and about! I probably would have lost all my hair by now but you look so good! We will keep praying!
what a beautiful little girl you have:) im looking forwad to watching her grow:)
OH how adorable!!! Kaelyn is looking so amazing. I think she liked her bath:)
Wow do I live in a cave? I missed this post. It's like the best!!! Home! Now you're talking. she is so stinkin cute, I wish I could just cuddle her. She really looks amazing guys!
YEAH!!! She's incredible Jeana: ) Thanks for posting and all of the pictures and videos. I love them. I hope she gets to come home with you soon: ) I'm sure you miss her so much every night.
It is great to see all of the positive progress. I enjoyed seeing the bath and the feeding. All my love and support to a beautiful family. Joyce
It's amazing what Prayers can do!!! She is a little angel and growing up so fast! thanks for sharing this blog with us. It shows how prayers are answered. We love you Kaelyn!!! you have the most amazing parents... you're so Lucky. Love Aunt Becky
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