PRAYERS NEEDED FOR DEE!!!

Fisher's Mom

Mother Superior
Super Site Supporter
Look at that little face! She is just incredible, Dee! You would never know that she was so seriously ill just days ago. I can't believe how alert she is. She has a beautifully shaped head, too, Dee. Ooooh - I just want to kiss those cheeks and smell that precious baby smell. (Next time you take pics, can you take one of her little feet? There is nothing sweeter than tiny baby toes. LOL)
 

Deelady

New member
Frustrating update on Maya.....it looks as if she will most likely be in the hospital for at LEAST a couple more weeks! After going through a serries of tests and scans it is showing that half of her diaphram is weak and they believe because of that, when she feeds some of the milk is entering into her respitory.
She has been doing awesome in breastfeeding (MUCH better than the bottle!!) which has blown all the nurses and doctors away!!! BUT because of this new found issue we have to stop the breast feeding until further notice so they are able to give her thickened milk. There is a slight chance she may have to undergo another surgical procedure...but we have to wait to see how other things progress before we will know if this is necessary.
One step forward....two steps back!! :(

For the most part other than that, everything else is looking very good. She is VERY alert and very interactive with us....such a content little girl :)

Please keep the prayers going for her!!!
Love, Deanna, Percy, Ayla, and of course Maya!! :)


Oh and here are the feet pics per your request Terry ;) :D
 

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Adillo303

*****
Gold Site Supporter
Gorgeous - absolutely gorgeous - You keep on bein a mom, percy keep on being a dad. - We'll keep on praying.
 

Fisher's Mom

Mother Superior
Super Site Supporter
Awww, Dee, I am sorry Maya has had this little set-back. I sympathize with you so much. One of my sons had a similar situation - an uncoordinated epiglottis. It was a scary nightmare for quite a while. I hope they reach a decision on a treatment plan for Maya soon so she can go home with you.

Her little fingers and toes are so precious! (I think you have a future pianist there, Dee. Those fingers are soooo long and delicate.) Ayla is the very picture of a doting big sister! What a lucky child Maya is to come into such a loving and happy family!
 

joec

New member
Gold Site Supporter
Constantly keep you in our thoughts Dee and please keep us informed.
 

Deelady

New member
Thank you, my friends (wiping away the tears) I'm really trying to not be discouraged. I try to remind myself at all times that she is in good hands at the hospital and is protected by the power of your prayers......but I expected it to get easier, and not harder. I was just so sure we would be bringing her home this week, not at all expecting for them to be saying that there was a posibility of her having to have another operation!

Well I guess all there is to do is just keep on keepin......Thank you guys for your support! As I have said before....it helps more than you can possibly know!!:kiss::heart:
 

buckytom

Grill Master
i'll be sure to say another decade for maya today, dee. you and yours are in our thoughts and hearts.
 

Mama

Queen of Cornbread
Site Supporter
She (as well as your whole family) has been and will continue to be in my prayers Dee.
 

Doc

Administrator
Staff member
Gold Site Supporter
More prayers and good thoughts coming your way Dee. :thumb:
Such good pics. Thanks for sharing. I hope Maya is home safe and sound with her loving family real real soon.
 

QSis

Grill Master
Staff member
Gold Site Supporter
I am sending a blanket of positive and healing energy to wrap around Maya, Dee!

Lee
 
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Deelady

New member
Hi guys....sorry I haven't been around much. Have had my plate full here.
A bit on what has been happening....

She will be in surgery today to get a Gastric tube put into her stomach, I will no longer be able to feed her by breast or bottle. She will most likely have this in aprox a year or at least until she starts solids. The reason she has to get this is because when they were either removing the mass from her heart area there was damage done to her nerves in her left vocal cords and her left diaphram....or the mass itself damaged them from pressing on it.
At first they believed it was because of her weakend diaphram that was causing milk from her feeding to enter into her respitory system, so they had put her on thickened milk. A week later they tested her with a swallow test again and she failed again even after they thickened the milk to a honey consistency. :( So with further tests they realized her vocal cord was damaged as well and that this was more likely the reason for the milk entering into her lungs.
They were suppose to do a simple procedure today to put in the gastric tube by just entering in through her stomach area but after more x-rays yesterday they realized that because her diaphram is too high from not working correctly, that has moved her organs around a bit and her colon is in front of her stomach blocking their access to it. So they had to upgrade the simple procedure to a full surgery in order to enter into her from the chest area again and go down into her stomach :(
After the surgery today, most likely thurs, I will have to go through 2 day training in order to learn how to feed her by syringe and care for her at home. She will also be on oxygen for a while still...a very low percentage but for some reason they have been unable to wean her off of it.

Sorry for the mini serries...just wanted to keep you in the loop ;) Oh and to top it all off...Percy is suppose to be leaving for Iraq today. :sad:

It amazes me what these tiny babies can endure!! I pray she continues to be such a fighter!!

And Thank you everyone for your positive thoughts and prayers, they have gotten us SOO far!
 
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Fisher's Mom

Mother Superior
Super Site Supporter
Awww, Dee, I am so sorry. Your baby girl has been through so much already! Please give her a kiss from Aunt Terry. And big hugs to you and Ayla and Percy.

I have known quite a few kids with feeding tubes, Dee, and while it sucks not to be able to feed her the regular way, you can do this. And a couple of years from now, it will just be a distant memory. But for now, remember that you have friends here to lean on and we want you to do just that. You and little Maya are dealing with seriously rough stuff here and we want to help you through. Please call me if you need anything - even if it's just to cry or vent!
 

Deelady

New member
Thank you Terry :) :) And I will most definately give kisses from auntie :D

I feel pretty confident about being able to handle the tube but it does bum me out about needing to do it and not being ale to feed her the traditional way...but what can you do other than accept and move on. but they did mention something about therapy I can do with her so maybe theres a chance I can get her through this even faster than they expect. We'll see.
 

QSis

Grill Master
Staff member
Gold Site Supporter
Awwwwww, Dee! That bites! But the fact that all this is being done to FIX what's wrong is encouraging!

Besides, she's way too cute to be in any serious trouble!

And, Ayla --- what a doll! She looks like a camera ham, too, LOL!

Positive energies continue to flow to you and your lovely family!

Lee
 

lilbopeep

🌹🐰 Still trying to get it right.
Site Supporter
any update on the surgery yet?

you are in my thoughts and prayers. will there be anyone to help you dee after percey leaves?
 

Mama

Queen of Cornbread
Site Supporter
She is soooo beautiful Dee! I'll be praying that all goes well with the surgery and that she will have a speedy recovery. I pray that Percy will be safe while he's gone and will return to you and the girls as soon as possible. In the meantime, it looks like big sister Ayla will be more than happy to help take care of her little sister.
 

Deelady

New member
Thanks guys :)

Well the Dr just called a little bit ago and the surgery went well, she is in NICU for recovery until tomorrow.
Percy ended up "missing" his flight because he wanted to be here just in case as well as couldn't bear the thought of being so far while Maya was in surgery:wub: That was a great relief.
So we are both celebrating and exhaling with a glass of wine! :wink:

And yes Peeps, my sister in law lives not too far from us as well as a nurse will be coming once a week in case I have questions after she comes home.
I'll have alot to learn this coming week but I dont mind as long as I have my little girl to learn it all for!! :wub:
 

Fisher's Mom

Mother Superior
Super Site Supporter
WooHoo!!!! This is the best news! I am so glad Maya came through well and that you and Percy are together tonight. Thank you for thinking of us tonight, too, and posting this update. Hugs to all of you.
 
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