Yes, it appears that after Olivia has been on what they call full- medical intervention she is still considered FTT. Or failure to thrive. She is still spitting up so much that not only does it irritate her and cause some breathing issues but she has gone from the 50% to below the 5% for her weight. The Doctors have done everything at this point and have given all of the formulas and medications 12 weeks. At this point they think we really dont have any other options and they are sensitive to time, as she is just going downhill fast (weight wise.) She has a pre-op appointment scheduled with the Surgeon in 2 weeks and we will schedule the surgery for shortly thereafter.
We will keep you updated as we know. Its a pretty major surgery where they wrap a portion of her stomach around her intestine to tighten it, making it almost impossible to spit up at all. She will have a 5-7 day recovery in the Hospital when its over... yuck!!!!
I have thought a lot about it, and will continue to do so, and I agree that at this point it really is the only thing that's going to help her.
She is still our sweet tempered baby girl. She's just tiny, weighing 10 lbs. 7 oz. When I told them how happy and good she is they were glad to hear it. But as they watch her falling off her growth curve and track how often she still spit's up the happy part just doesn't weigh in much.
I will keep you all posted in 2 weeks after her appointment with the Surgeon. He's the head of Pediatric Surgery and has done this many times so at least I know I'm in capable hands.
15 comments:
oh wow! I am so sorry you guys and Olivia have to go through this! I am happy you have a Dr. who is familiar with the operation. I can only imagine how much faith this takes. I will be certain to include your family in our prayers as will many many others I am sure.
The only thing that comes to mind at the moment is "that plain sucks!" I'm glad that she is happy and we'll keep you all in our thoughts and prayers. Definitely keep us posted!
Oh my goodness!! Look at all you have had to endure with your precious Olivia! She is the dang cutest thing I have ever seen, 10 lbs. and all. You're in our thoughts and prayers. She's lucky to have such an amazing mama!!
I am so sorry. She (and your whole family) will be in our prayers. Actually Alayna is only in the 10th percentile for weight now so I'm hoping she doesn't fall lower than that too.
I can't even imagine a baby having surgery like that...wow. We will definitely also keep her and your family in our prayers. Thanks for keeping us updated. :)
What a sweet and special girl you have. It seems like it's the especially sweet tempered children that go through trauma. We will keep your family and Livie Lou in our prayers.
So sorry to hear this Jill! I truly hope and pray everything goes well. I'm sure it will :)
man. That's a lot to take in! I hope you know how much you are being watched over and guided during all of this!!! You are her greatest strength and she is so lucky to have you two looking out for her!
We'll be sending our thoughts and prayers your way!
i am so sorry that you have to go through this again! i know it is different than ella but i can't imagine having one child get surgery let alone two. she is going to be wonderful! you are a patient and wonderful mom. heavenly father must think a lot of you.
I am so sorry to hear this. Austin and Taylor both had to have this surgery done, but they had to have a feeding tube placed in to their stomach at the same time because they wouldn't suck. It really did stop the projectile spitting up though. You will be in our prayers. Good luck.
Wow . . . I am just so surprised. I am so so sorry Jill. This must be so stressful. You will be in my thoughts and prayers and I am grateful that she has been so peaceful and happy through it all. Good luck with the surgery. I am glad your doctor is so qualified. Anything with little babies is so hard.
Let me know how I can help! I would love to have Luke and Ella over whenever you need me to. We are praying for you guys.
Jill - I hope everything is okay with little Liv. I'm glad she is in good hands with this Dr. and we are praying for you guys through this. Love and miss you.
I'm sorry Olivia has to have surgery! That is a bummer, but hopefully after it is done, she will start to get bigger and be even happier than she is now! You are in our thoughts!
Jill - I am a good friend of Emily, your sister in law. I'm so sorry you are going through all of this. My two kids had acid reflux and grew out of it. My little boy had it so bad, but I can't say he ever got dangerously small because he was chunky to start with. He refused eating for a long time though and was in a LOT of pain. I found this awesome acid reflux forum, and there learned what medications and formulas work best.
Have you tried Neocate? That is the ONLY formula that worked for Dallin. It took quite a while to make a real difference. Also, Prevacid Solutabs were a life saver. Don't let them suggest any prevacid or zantac liquid medicines because they are usually not compounded correctly, or simply don't work as well. Either Zegerid or Prevacid Solutabs seems to work best. And babies need a lot of the meds and more often then most drs prescribe. Dallin was taking 15mg two times per day. You dissolve the tablets into water and give it in a dropper on an empty stomach, about 30min before eating.
You may have already tried a lot of this, but I just wanted to be of help. If you'd like to email me - if only for support - ask Emily what my email address is so I don't have to post it online. :)
Here's the forum... infantreflux.org/forum/
Here's an awesome website, sort of the leading experts on all of this... marci-kids.com
I hope something helps.
Heather
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