Thanks for the post title, Cousin Faith.
Leigh Greer, this post's for you!
Becca's doing well. She's up to 1020 grams - that's 2 pounds and 4 ounces! John's giving her her daily bottle right now. She's up to 15cc's on her feeds, which is more than she's ever had! She's just under full feeds (which will be somewhere around 18cc's), and she's back to getting a bottle once a day (after a weekend off to let her catch up on breathing). I forgot to mention in my last post that she had come off the vapotherm, but since then, she had to go back on it. Now she's off of it again, for now at least. She may have to go back on it, but there is a massive vapotherm shortage in the NICU right now, so we're hanging out with the nasal cannula.
Let me try to help you make some sense out of everything I just said. I have been avoiding explaining the intricasies of her respiratory care because I cannot manage to wrap my brain around it, but I'll give it a go. All you friendly medical folks out there can clarify for me if necessary.
The highest level of respiratory support involves being intubated and connected to the ventilator. There are a couple of kinds of vents that I've seen around here. Some of them basically breath for that baby, and others send quick puffs of air at a really high rate. I think some of them are cued by the baby's attempts at breathing, and others just breathe at a regular rate. They are really complicated, and I know very little about them because I never even saw Becca on one, as (thankfully!) she was only intubated for less than a day (when I was still chained to my bed in the recovery room). So let's not worry any more about them.
Becca quickly moved to vapotherm, which is kind of a modified C-PAP that is delivered through a nasal cannula. It looks basically like a regular cannula (not the fighter pilot mask that you may have seen some folks wear to sleep), but it gives a continues flow of air at a rate of x liters per minute. The "vapo" part is that the air is humidified (even more so than most nasal cannulas), which helps keep things moist. When she first went on vapotherm, she was on something like 3 liters per minute. Eventually she weaned down to 1/2 a liter, and they switched her to oxygen "from the wall." That happened before we moved over to the children's hospital. When her infection popped up, though, they had to put her back on the vapotherm so that she wasn't working as hard to breathe. They almost had to intubate her (again, not because she wasn't breathing, but to give her some support while she was feeling so puny), but she stayed strong enough not to have to do it. After her infection, it took longer than before (or so it seems to me) to wean down again, but last week they were able to take her off the vapotherm and switch to a regular low-flow nasal cannula. Then, like I said, she had to go back on it, and now she's off it again. Pirate ship, anyone?
After you come off vapotherm, you get hooked up to the wall (literally), from whence is delivered either pure or blended oxygen. Becca's on the blended version, meaning they can control the amount of oxygen in the air that is blowing through her cannula. They can also control the flow. At the moment she's on 1.5 liters of flow, with her oxygen level at nearly 40% - which tells me that she's likely to be back on the vapotherm as soon as one becomes available. She's "satting" high, meaning that the level of oxygen in her blood is high (which is good, unless it hangs out too high for too long, which can damage her eyes - weird, I know), but she's usually on around 25% (room air is 21% oxygen), so it looks like the cannula isn't cutting it yet. The air from the cannula is humidified a little bit, but not much, so if she continues to require this high a flow for a while, drying her out becomes a concern as well (but not a big one, I think).
Before she goes home, she'll have to be off of all of it. I think some babies are sent home on oxygen, but since she doesn't have any structural issues or (at this point) chronic lung disease (from being on oxygen too long), she really shouldn't need to be discharged on oxygen. Overall, she's done very well with her breathing, but she has consistently needed some sort of flow (or pressure), even when she's been just on room air. Theoretically, she should be growing out of her oxygen needs soon (as in, a baby born at her current gestational age probably wouldn't need much - if any - support), but she's not there yet. As usual, she'll tell us when she is. And I'll be thrilled to mark that off our "to do before Becca can go home" list. Then she's got to take the bottle and hold her temp. But we're getting there. I don't see her going home by the end of the month, though, like we had started to think might be a possibility (though a very optimistic one). So she's made a lot of progress, but she's got more to do...and my patience is running short. But we'll take her whenever. She's a keeper. And I love her!
Becca is so cute!!!! All of you are in our prayers. We are thrilled to see her growing. She is a fighter!I love reading your blog and keeping up with Becca.
ReplyDeleteCome on Becca!!!:) I can't wait for the time when you can enjoy her at home. I am so proud of you, Nancy and John, for all the stuff you are handling right now. You are amazing....never forget that.
ReplyDeleteLove you!
I thought I was the only one who said "cousin Faith"!
ReplyDeleteGlad to see Rebecca continues to do well. I know it is frustrasting to see her improve but still know she has a ways to go before coming home, but focus on the doing well part.
You did a great job on your respiratory lesson! I am so glad she is back on feeds and still growing like a little weed. She'll be home in no time. You may know this, but she seems to be having one fantastic ride through the NICU and though it may seem like big set-backs to you, hers are so minor that you truly are blessed and all these prayers from everyone are working. Keep being such great parents. You are doing a fantastic job already!
ReplyDeleteWhat a fighter she is! I already admire Becca's will to get through all of this stuff, and I admire the 2 of you more than you can imagine!
ReplyDeleteThanks for the update. I haven't heard how she's doing in a while. I was starting to worry. Love you all. Maybe see you in a week or so? Give my amazing niece a hug from me.
ReplyDeleteNancy, I am really not surprised at the spunk your beautiful girl-you know I have a biology back ground and that whole genetics think-with a mom like you and a dad like John she really had no choice. What I am looking forward to is when she is two-hehe.
ReplyDeleteLove and prayers from San Antonio.
Christi
Becca just keeps getting cuter with every picture! You look pretty good yourself! I'm changing my prayers for you guys to include slowing the pirate ship ride down to a tolerable pace for you and John. I know all of this is hard and yet your spirit continues to be a blessing to us all.
ReplyDeleteI love her, too! NICU is a world unto itself, huh? All the stuff you have to learn. And the pirate ship is a perfect analogy. Whew! Please know that I think of and pray for you guys all the time and can't wait until Becca is home! Love you all!
ReplyDeleteThanks Nancy! You are awesome! And, what a great explanation!! Great job-- you are well on your way to being a nurse! ;-) Can't wait to see y'all again-- Friday! I'm praying for you all!!
ReplyDeleteLove,
Leigh <
I can't imagine how hard this is on you all. I have seen my fair share of NICU babies for PT and even though Becca started out so behind she has done better than I ever expected. She really is a fighter! My bible study is very in tune to her progress and she is always in our prayers!
ReplyDeleteYou are all amazing. I know that it must get hurrying up and waiting. We love you and keep you in our prayers daily.
ReplyDeleteGo, Becca go!!! I love reading updates about your itty bitty!!! She's such a doll baby! :)
ReplyDeleteYou guys are in my prayers!
Nancy and John, I've been following Becca's amazing journey via Debbie (my sister) and my mom and your website. My mother-in-law and sister-in-law were visiting us at the time we got news of Becca's birth and are also following along from Florida. My guess is that besides all the people you know and love there are many many others that you don't have a clue about who are cheering Becca on. Lots of love and give her a kiss from all of us.
ReplyDeleteSusu Mobley Floyd
Nancy and John- I saw Itty Bitty’s picture on my friends refrigerator and asked about you all. My story is a bit different, but I ruptured at 20weeks, stayed in the hospital on bedrest and antibiotic for 9.5 weeks. Ashton, my son, was born at the 29wks, but weighed 4lbs 5oz( very big for his gestational age). He spent 4 months in the NICU. I totally relate to what you are going through. I’m sure they have told you that Itty Bitty will take steps forward, then have a slight set back then take off again, which I’m sure you are already riding the roller coaster. I do want to make sure Nancy that you have a “pump” bra. This is where you can be hands free while pumping, so you can at least eat, read, and not feel so tied down. You will not believe what a difference this makes. I pumped for 14 months, glad I did it, but it is very time consuming and then frustrating when they can not take it. If Vanderbilt does not have them, you can purchase one at Centennial Women’s Hospital on the 1st floor in the Mothers store on the right hand side (10 minutes from Vanderbilt). Would love to share and help you through this tough time. My home email is Facchinello@comcast.net. Work number is 615-344-2473. My son came home on oxygen (on oxygen for 21 months) and later put on a feeding tube at home. Remember it is hard to suck and swallow when you can’t breathe. He is now 41/2 years old and doing AWESOME!! Love and Prayers, Michelle
ReplyDeleteBecca is so pretty! Congratulations on your beautiful baby girl. Please let us know if there is anything we can help with in L-ville. Brian, Mandy & Sarah E.
ReplyDeleteYou are all in our prayers. I am Lynn Beach's wife. I have just read your amazing blog. I can't even begin to imagine all that you are going thru. I think I would have to be committed somewhere. Hang in there and thank you for sharing. She is beautiful. Take care and God bless.
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