Amelia update

kittyh8r

After her emergency surgery, she has had a rough recovery. She has had a stridor that has kept her fr growing and getting better. She has been given a few sedation meds to help her with staying calm, because when she gets worked up, it's incredibly difficult to calm her down. No amount of morphine was calming her and it puts her heart at risk to be so worked up.
Friday she finally had a meltdown that caused about 15 doctor and nurses to rush in and rush her to the OR to do a bronchoscopy. They saw that her vocal cords her both paralyzed from the surgeries and ecmo going in her neck. She was barely getting any air when she took a breath. That's why it was so hard to wean meds, the more awake she was, the more aware she was of the difficultly to breathe. Her doctors said that she was suffocating and that it's a miracle that she has made it this far with the physiology of her heart right now. Her lungs weren't getting adequate oxygen and were getting sick, so now she has pneumonia. They decided to do a trachoscopy. It's not ideal, but just in the 4 days that she has had it, she has been a completely different baby. Much more comfortable and happy. She failed a swallow study so will likely need a gtube. They are actually considering letting us go home in a few weeks, whereas the plan was to stay until she was ready for the second stage heart surgery in April.


My heart is so happy to see her much more comfy. I can't tell you how difficult it is to watch your baby in so much pain.

Thank you for you t&p's they have done their job (: This is a picture from this morning.


Eta: words are hard. Please ignore the typos and terrible grammar.
I'm on mobile.

JillSandm

She looks so sweet! Hugs to you - is so hard to see our babes hurting!

TXmamatobe

She is so beautiful and such a fighter. Praying for y'all!!!

KFED103

Thank you for the update on your precious girl. I'm tearing up thinking about what you are going through. All the love and strength in the world coming your way right now

KFiori1

KFED103 said:

Thank you for the update on your precious girl. I'm tearing up thinking about what you are going through. All the love and strength in the world coming your way right now

My thoughts exactly. She is so beautiful!

frankierokx

She has such a beautiful little face. My heart and love goes out to you and your family.

clhathaway

All my t&p's to you and your little. I hope she gets well soon and can go home!

jy725

She is a beauty! Thinking of you two!

musicnmoon123

I'm so sorry for all you and she have had to go through. Poor baby! Glad to hear she's feeling better. Here's to more of the same!

adawn1981

Beautiful girl. Praying for her and thinking of you all.

tyedyeme12

Praying for your sweet little girl. Glad they are figuring things out! Praying she will continue to get better.

swirl25

I'm so sorry you are on this tough journey. Your little one seems like she is a real fighter - T&Ps she keeps it up! Wishing you and your family all the best.

babymonster30

You are both so strong and brave! My heart goes out to you and your family. She's so gorgeous.

Brandi81012

She is absolutely beautiful, I am that she is doing better since the trach was placed. You are so very strong and I send all my thoughts and prayers to you.

74dragonfly

Oh Emma! Big hugs! I'm sorry Amalia is having such a rough time. It sounds like she is a fighter and is getting great medical care. Hang in there. You are in my prayers!

gcama85

Thinking of you and your family! She is beautiful.

rkcaraway

My thoughts are with you. Caitlyn got a g tube on Wednesday. If I can answet any questions for you, please let me know.

liz429

Thoughts and prayers are with you and your family. She is a very strong girl surviving all this. And so do you! I could not imagine having to be in your shoes.

Ark2013

She's a beautiful little girl. I'm so sorry for all that you guys are going through. Fingers crossed she gets to go home soon. My T&P are with your sweet girl.

jenohouston

Thinking of you and your family, big hugs

melco19

Sending lots of prayers for your sweet baby. You both are so incredibly strong.

BoothBaby

oh wow, I am so sorry that she has been struggling, but I'm really glad that she has made progress already. I'm continuing to send positive vibes for a speedy recovery for her. Hang in there mama!

mrsbamtastic

Sending lots of healing thoughts to Amelia.

thebobloblaw

You're in my thoughts and prayers... I can't even imagine. Stay strong!

bubblesmtu

Poor sweet baby- I can't even imagine . Thoughts and lots of prayers to your little girl and you.

[Deleted User]

The user and all related content has been deleted.

shoeflypie

You, your beautiful baby Amelia and family are in my prayers. You are the strongest person.

lilypienmessimy

I'm so glad you updated us, I've been thinking about Amelia and praying that she's been doing well. Amelia is so strong and I'm so glad she's more comfortable now, I'm sure it's so hard to see her in pain. I think about you guys often and pray that you will be able to take her home soon! She's so adorable, lots of thoughts and prayers headed your way. (((Hugs)))

malos3

She is absolutely beautiful! I hope your she gets better and is able to go home. Prayers for you and your family.

mightymousy

Oh wow *HUGE HUGS* lots of t&ps, glad to hear they might let her go home!

Mac2588

She is such a fighter, bless her little self.

playball13

She is so cute! I'm glad she is feeling better. I hope she continues to improve.

AwaitingAAmiracle

I frequently think about you and Amelia. I am so sorry you are having to go through this bu happy to hear that she is doing a bit better. Will keep all of you in my thoughts and prayers.

lifesaverz

Oh my goodness, so glad she is doing better! Poor thing, I'm sure that would be so heartbreaking to watch! I hope her recovery from here on out goes smoothly!

ChuggingWater

You continue to be in my thoughts and prayers.

myeverything1203

She is a very strong, beautiful girl. You and your LO are still in my T&P's..I hope all goes well and you are able to bring her home soon you too are a very strong mother, I'm glad they caught all of that and were able to fix it

aundrea1225

What a beautiful and strong fighter. Hang in there. I hope everything gets a lot better for you all. T&P!

MissyC979

I'll continue to think about you all and hope things continue to improve.

katieh704

She is adorable! Continued thoughts and prayers for LO and your family

KateVA

I can't imagine how hard all of this must be. I think of you often. Xoxo

amberpro

She is beautiful! And such a little fighter. I'm so happy she's getting better. I'll keep sending prayers. Glad you posted... Amelia has been on my mind.