1.25.2015

3 Months Old (and some exciting news!)

This little lady is 3 months old today! She weighs 7 pounds on the money and we were told tonight that she'll (hopefully) be home by the end of the week! WAHOO!!! It's hard to believe it's finally happening! They told us we need to bring in a car seat tomorrow or on Tuesday so they can have her do a car seat test before we bring her home. They'll put her in the car seat for an hour or two and if she can sit in it safely without her stats falling at all, then she's good to go home!

Yesterday Carlee had a minor little surgery (hopefully her last) to have a central line placed. This is what we will use when we bring her home to deliver her TPN. We will be trained this week on how to administer that to her and how to calculate how much she will need daily based on her oral feedings. We will also be CPR trained. We're feeling a little overwhelmed at the thought of having her cares (aka: life) in our hands when she comes home, but we're sure once we're trained we'll feel much, much better about things. There's no way we're bringing her home until we both feel totally and completely comfortable.
This is how Carlee looked yesterday right after they placed her central line (the line going into the yellow circle). The line going into her arm is what the hospital has been using, but that has now been removed. The central line is what we will feed the TPN through until her intestines can start absorbing enough nutrients on their own through her oral feeds for her body to grow and thrive.

These are the cute signs the hospital has been making for Carlee to mark each month she has been there. They are so cute, but we are glad we won't be seeing any more of these (knock on wood). We are so beyond excited to finally get our little angel home!

Now we need to buck up and get Carlee's room ready (gasp!). I know, I know.... it's probably shocking to hear that her room isn't put together yet. We've had it on our to do list for weeks, but our lives have been a whirlwind lately and finding time has been hard because it involves swapping a bunch of big pieces of furniture between two rooms. We planned to get it ready yesterday, but then Mike ended up flying out to Arizona to be with his granddad, who is on the verge of passing away (I will post about Mike's amazing grandpa and Mike's experience visiting him soon) and Carlee ended up having her central line surgery, so it didn't happen....yet again. Hopefully we can find time to get it put together bit by bit this week. If not, she may be spending her first few nights in a box (only kidding about the box, but the article in that link is pretty interesting).

We may not have Carlee's room prepped yet, but we are prepped with a freezer full of meals! Mike and I spent last Sunday afternoon getting tons of freezer meals made so that we'll be able to focus solely on Carlee when she comes home without the stress of having to cook, which will be so nice.

The next chapter in Carlee's life is about to begin...yay! It is still filled with many uncertainties, but we are looking forward with hope and faith. We have witnessed so many miracles take place through this experience so far (I'll have to dedicate a future post to sharing some of them) and we know many more are yet to come. This experience is changing us for the better and we are so grateful for it. Yes, it has been hard, but amazingly it hasn't felt hard because we have truly been buoyed up by our Savior. His atonement is real.

Favorite quote this week:
"We are not obedient because we are blind. We are obedient because we can see!"
-Elder Boyd K. Packer

Life rules.

1.19.2015

Recovery

Carlee did awesome in surgery and is recovering so well. In surgery Dr. Lee & Dr. Meyers took down her jejunostomy, attached her remaining small intestine to her large intestine, and created a little belly button for her. Dr. Meyers told us her jejunum measures at 31.5 cm and has grown 6 cm since the necrotizing enterocolitis. Even with the growth, there still isn't much there so she will have short bowel syndrome (aka: short gut) and will probably need to remain on TPN for 1-8 years depending on how well her intestines do at absorbing the nutrients her body needs to thrive and grow. Only time will tell.

This photo was taken two days after surgery. She looked absolutely miserable and it just broke my heart to see her that way. She was so swollen and didn't even look like herself. She kept yanking on her breathing tube and just hated having that back down her throat. She was still in a lot of pain and had a constant morphine drip to help her feel somewhat comfortable. The hardest part for me was not being able to hold or comfort her, especially when I could tell she was trying to cry but couldn't because of the breathing tube. All I could do was wipe away the tears streaming down her cheeks. It was heartbreaking!


But a few days later, she was doing well enough for me to snuggle with her again. By that point she had been extubated, she was starting to have bowel sounds, and she had even started pooping for the first time ever! I've never been so excited to see poop in my entire life! They had stopped her oral feeds for a week to allow her intestines time to heal, so she had to have an Andersen tube down her throat to suck out her gastric juices during that time. She hated that thing and kept gagging on it and trying to pull it out, but thankfully it didn't have to be in long and her throat is finally free of all tubes. Yay!

A week after the surgery Granny Goose visited and got to hold Carlee for the very first time. Carlee is her 16th grandchild and 6th granddaughter. She had a nasal cannula again for a couple of days while they weaned her back to breathing room air. She is now breathing room air beautifully and is completely off all meds.

And this is how she looks now! This is the first time she's been unencumbered by all the hospital adornment so it's been fun to finally see what she actually looks like. She currently weighs 6.5 pounds and is allowed to eat up to 25 ml every 3 hours by mouth. They give her 30 minutes to eat as much of the 25 ml as she can and then whatever she doesn't eat, they adjust her TPN to compensate.



Carlee absolutely LOVES listening to music. I play her music on my phone every time I visit. One of the songs we always listen to is "Glorious" by David Archuleta because I just love that song and she loves it too. Above are two little clips of how she looks when she hears music. Her eyes get big and she just looks all around and then eventually doses off to sleep.
And this is Carlee in her happy place, snuggled up close to mommy. They still haven't set a date for us to bring her home yet, but we are hoping it's within the next few weeks. We sure love this little cutie and feel so blessed to have been chosen to be her parents.

Favorite quote this week:
"The struggle you're in today is developing the strength you need for tomorrow."


Life rules.

1.08.2015

Surgery Day

The day we have been waiting for is finally here! Today Carlee gets her tummy put back together! Her surgery is scheduled for 4:30pm--but she's the last one of the day, so depending on how the day goes, it may get pushed back to tomorrow. We are ready. Carlee is ready. We know she'll do great!

Carlee now weighs 6.1 pounds. All of the nurses that have cared for her all comment on how huge she looks compared to when they last saw her. As you can see from the picture above, she is totally off oxygen now and is breathing room air beautifully! Her hematocrit was low yesterday, so they gave her a blood transfusion last night so she'd be all prepped and ready for surgery today. In the "take down" surgery they will be removing her jejunostomy and connecting her remaining small intestine to her large intestine so she'll be able to finally start pooping out of her bottom like a big girl.

We came across this hat in the NICU that says "Gastroschisis Baby - Some Assembly Required" that I thought was the most adorable thing ever. Carlee's little body has taken quite a bit of "assembly" but we have been so amazed at how well she has progressed and how wonderfully she is doing. Prayers most definitely are being answered.

Carlee has started to bottle feed and I've been able to feed her several times. They only give her 5mL in the bottle, which is only about a teaspoon, but she is doing so great with it. After her surgery, they won't feed her any breast milk for about a week to give her intestines a chance to heal, but then they'll start her feedings back up again.

 Carlee's current feeding plan.

Mike and my dad gave Carlee a beautiful blessing last night and we truly believe and have faith that Carlee will be just fine. We know that our Father in Heaven has a very special plan for Carlee. We feel it every time we hold her and look at her precious little face. We know that Heavenly Father has Carlee's best interest and our family's best interest in mind and that she will heal and turn out exactly the way Heavenly needs her to be in order for her to fulfill the plan He has for her. We love her and appreciate your continued faith and prayers for her so much!

Favorite quote this week:

"Always remember that your present situation is not your final destination. The best is yet to come."

Life rules.

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