Christmas Miracles

It’s been a while since my last post and I can honestly say it’s because I’ve been spread so thin over the last two weeks. Let me make clear that I LOVE the holidays. This year though, they’ve been a bit more stressful than I’d like! I’m trying to fit in all of our Christmas traditions with Mabel along with celebrating her third birthday, while also driving back and forth to Pensacola every day. If I’m being honest, time for myself has gone by the way side and I’m as tired as I’ve ever been. Somehow, I’m managing. I’m exhausted and I’ve completely neglected caring for myself but I know there’s light at the end of the tunnel. Diets, makeup, exercise and sleep can wait a few more weeks. Mabel has been regressing a bit lately due to our lack of consistency. So I’ve been struggling with some guilt there. I think I’ve gotten us on a bit of a better schedule and trying to spend all of my time away from the hospital with her. On a more positive note, she has been able to experience all of the fun Christmas festivities, had a great birthday party and my boys are doing great!

The boys still have a few hurdles to jump but overall I couldn‘t be happier with their progress!

Brendan:

He has really been a true fighter. He was off of feeds again last week because he kept “dumping“ all of his fluids. He looked so pitiful. He loses his weight so fast when they take him off feeds. He also developed an abscess on his incision site that turned our to be MRSA. He was placed on antibiotics and that has since healed. He’s been through so much, but now he is thriving! He is a chunk! I never thought I would say that! He’s over 4 pounds! He’s almost 2kilos! 2 more kilos to go before they can put his intestines back together. Poor guy has been on and off feeds his whole life but I think they have finally figured out that plain breast milk is what he prefers. He’s big enough now where he can be held swaddled!

He had a trial with no cannula. He managed without it for 48 hours and did really well until they took his caffeine away. Without his daily ”coffee“ he gets tired so they put him back on his cannula. Still on room air, but it gives his lungs a little push so he can expand them better.

He’s almost to full feeds, although they feed him continuously at a slow speed so that his GI tract is constantly stimulated. They took him off TPN (his IV nutrition) so now his PICC line is only in in case of emergency. Hoping we dont ever need it again!

We’ve been able to bottle feed him the past few days and he’s SO good at it! Way better than his brother whose been working on it for over two weeks! They both have their own strengths! 😊

Major Milestones for Brendan:

Great ”no cannula” trial

Off of caffeine

Bottle Feeding so well

Gaining Weight

Tolerating Feeds

Goals for Brendan:

Gain to 4 kilos so his ostomy can be reversed

Adapt to being off of caffeine

Work on breathing so he can get off of his cannula

Continue tolerating feeds so he can move to timed feeds

Come Home!

Wright:

Wright has moved up to the third floor! He’s now considered Level II. He’s off of his cannula and has been breathing on his own for a while! He’s 5 pounds 9 ounces! He’s doing great breathing except for when he eats. He still doesn’t have the hang of bottle feeding and holds his breath. He does really well breast feeding and latched for 5 minutes today. Baby steps!

As soon as he gets the hang of bottle feeding, he’ll be ready to come home! Praying that is soon although I know he’s in the best hands where he is now. Major Milestones for Wright:

Level II

Moved to a bassinet

Breathing on his own

Consistently gaining weight

Breast Feeding

Bottle Feeding

Goals for Wright:

Get off of caffeine

Stay awake for bottle feeds

Breathe consistently while bottle feeding

Come Home!

During this ”season of life“ and this Holiday Season I am so very thankful for my faith. God has given me so much strength and taught me so much. Most importantly he’s allowed me to extend myself grace in this stressful time. I know with his unfailing love and my family’s unwavering support we will get through this. I will look back sometime in 2020 while surrounded by all three of my children and wonder how the time went by so fast. It may seem like forever now but in this life, it’s just a chapter. We’ll just keep turning the pages!

I will forever be thankful for all of your prayers and support. With your support I’ve found a strength I’ve never had. I know God’s listening! My family is thriving and I couldn’t be more in awe of the power of prayer!

MERRY CHRISTMAS! May you all be as blessed as I feel this Christmas!

So much love to you all!!!