She took 2 bottles today; the first one calmed her down A LOT. The nurse and I agree that, although the tube feedings filled her tummy, they didnt satiate her desire/need to eat. She was so much happier after that first bottle. I would have breastfed her, but I had just pumped. But I held her at the breast as she ate, which is almost as nice. And she was happy. Which means I was happy. There is nothing better than a happy baby.
She also exploded into several diapers, leading us to think she has a tummy ache resulting from restarting her feeds. Her movements were not the "gourmet mustard" look of breastfed babies; they were darker and more green in color. The nurse checked for any issues and they came back clear, so it looks like just a sick tummy. Thank God. We dont need NEC or anything else cropping up! So, a sore throat and a sick tummy make for a very unhappy Maya! And a strong Maya! She was quite the girl to contend with today. She pulled her cannula off several times and yanked her OG tube out. When her nurse replaced it with an NG, she taped that and the cannula down very well. Maya has a lot of tape, but hopefully this will prevent her from yanking things off at inopportune times. She also decided to pull her leads off. 3 times. I'm not making this up. She's pissed off at the world right now.
It's great to have my sweet girl back. :)
They got their Synagis shots today. For those who dont know, this is a RSV antibody injection that is given monthly. It isnt a vaccine, rather it is an injection of antibodies to boost up the baby's immune system. This is why it isnt a one-shot deal and must be repeated every 28-30 days. The twins were due to get it right before discharge. To keep them on the same schedule, Maya had hers with Bobby's. He got his while I was pumping and apparently he gave a little cry and then went back to his business. Maya cried and cried. It was just insult to injury at that point. I just held her and felt like the biggest bitch in the world. Not only had she had to go through the whole breathing thing today but then the new feeding tube and the eye drops and then a shot. She was miserable. But it's all over now. And she is resting quietly on Daddy's chest and feeling much, much better. And she has her favorite nurse with her tonight. So life is good.
Our mister didnt have his car seat test last night because of back-to-back deliveries which left the NICU respiratory therapist unavailable. They had him on the schedule for this afternoon, but I guess people are having babies a lot these days! ;) So, he's on the list for tonight... Maya sat up in the swing and satted in the high 90s-100. I have no doubt Bobby will do the same in his car seat. They are looking at Saturday for his discharge date. They wont do tomorrow because they will keep him 24 hours post the Synagis injection to make sure of no adverse reactions. But it looks like this is it for him... I still cant believe it... I am slowly getting used to the idea that she will be there without him but it softens the blow to know that he can go in and see her.
We are really hoping that she comes through the weekend well. I talked to her doctor today and he said that if this protocol doesnt work, then they will call an ENT doctor to look at her. Please let this work... Let her take all her bottles and ditch the tube... Let her pass a car seat test and come home next week!!!
I am so glad Maya is doing and feeling better! I can't wait until you have both babies home! I am praying that will be soon!
Wow! That's a lot of good news for today. I hope Bobby has a happy and uneventful homecoming, and that Maya is able to follow quickly behind him.
By the way. I'm not sure if you've heard about it, but the March of Dimes and Bloggers Unite are holding Fight for Preemies on November 17th (Prematurity Awareness Day). Bloggers are writing posts about how prematurity has touched their lives to help raise awareness. There's more info here:
YEAH! Off CPAP! Maya is such a strong little trooper! I am glad things are looking up again. I hope the next week is smooth sailing.
Michele, all is sounding better for your sweet babies, Bobby & Maya. I'm continuing to pray for them and being able to go home with you. I don't know the emotions you will have on that day over the babies you don't have on Earth with you, but pray strength and peace for you.
Your sweet little Maya has been through so much. Praying that she can move past this and get home soon. I can't believe that you might bring Bobby home on Saturday.
I just can't believe it!!! Lots of new experiences for you and I couldn't be happier. I am so sorry you didn't have the opportunity to do this with Nicholas, Sophia and Alexander but it is about to happen Michele and it is real.
Good job, Maya !
Just so you know, you can actually breastfeed right after you pump as well and you will still have enough for her, plus it will also help the milk production (your body will think there is more demand and will produce more) I now pump almost before every feeding and freeze or save for next day if Im going to school. She will also get more hind milk. Of course our situation is quite different from yours but still, maybe its something to consider? I pump before feeding on purpose so I can get the production incrased
It won't be long Michele. She'll be home soon! Both of them will be.
Go MAYA!!!! She is going to be a force to reckon with once she gets a little bigger. I'm so glad she is doing better and better each day. And Bobby on his way home?? Your little ones are such amazing fighters. Are you in complete shock or what? I wish they could both be going home at the same time - but they are both healthy and doing well. Every small step is a blessing.
Yay for Maya the Mighty! SO GLAD THEY"RE DOING SO WELL! I know I say that all the time, but it's true each & every time.
You know, it occurs to me that bringing the babies home a week apart isn't the worst thing in the world. You'll have time to start getting used to dealing with Bobby full-time before you have to deal with both of 'em. Small consolation, I know, but perhaps it's some consolation!
So happy Maya is doing better!
So glad that she's doing so well - been thinking of you all! Hoping for a great weekend!
What wonderful news all around!
Awh poor Maya...but such a trooper! I can't believe Bobby is about to graduate from the NICU! How awesome! I know he will be looking for her sister though and it won't be long till they are both together at home.
So happy to hear that Maya is off CPAP! Such great news. I'm praying for you that the next few days go well and that you're able to bring your babes home soon.
Wow! It would be wonderful for you to be able to have them both at home by next weekend. I hope that will come to pass. I knew little Maya was a fighter!
Go Bobby! Pass your car seat test with flying colors and go and inspect your home!
Wow I havent read in a few days and SO MUCH has happened. YEAH MAYA!!!! for getting off the CPAP and YEAH BOBBY!!!! No more NG tube.
You all continue to be in my thoughts.
My sweet niece, I am so happy for you. I see that Maya has the strong will-power of her mother. That's a really good thing. I wish I could come with mama and your mom, but I have to work. I pray for each of you and know that God is watching over you, just as He did when you were so small and had to endure the things you did. I love you all!!!
So very glad Maya is doing so much better and that Bobby will be home soon! (today??)
I am so hopeful you will all be able to be home together before too long.
thinking of you and hoping for all good things.
While I know the road isn't easy, I am just so happy for you and Peter. I am happy that the twins are doing so well (again, I'm not saying it's easy). But I'm just grateful for everything that is right. I pray for you guys so much.
Peace, my friend.
I found your blog and wondered if you had heard of the Oley Foundation yet.
We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at www.oley.org.
In particular you might be interested in the
• Tube Feeding Tips page
• Meet Patients Section (try all three links)
• Tube Feeding Complication Chart
If you have any questions or would like to be introduced to another family, feel free to contact me.
Oley Foundation Staff Member
Post a Comment