What a week!
As I mentioned before, after weeks of trying to get the Happy Baby to eat enough, we decided to go ahead and get him a feeding tube so that we could bust out of the hospital.
Tuesday morning, the 3rd of July, was crazy.
Not only was it the day of the Happy Baby’s surgery, but also it was the Happy Buddy’s 3rd birthday.
So the Happy Hubby and I went from balloons and Mickey-shaped pancakes with one son in the morning to holding hands in a waiting room while our other son underwent surgery.
Trust me, I did not plan that schedule.
Thanks to your faithful prayers, I felt the greatest sense of peace as they worked on our precious little one.
They placed a feeding tube in the Happy Baby as well as took a muscle biopsy from his outer right thigh to help with the further genetic testing.
I shared on Facebook that I have never particularly cared for the word boring, but I was eternally grateful to hear the surgeon use it to describe the Happy Baby’s procedure. 🙂
His recovery was a little traumatic for me… I hated seeing him groggy and in pain… And because he had to undergo anesthesia, it set us back a little in the way of his respiratory strength. Anesthesia slows everything down in the body and since the Happy Baby’s muscles are already impaired, he needed some oxygen support for several days following the surgery.
The picture above, though, is such a sweet gift to me as it was one of his first smiles post-surgery!
Yesterday the doctor came in our room and said 3 things needed to happen in order for us to be able to go home.
1. The Happy Baby needs to get off of oxygen.
2. The Happy Baby needs to tolerate his feeds.
3. The feeding pump equipment that we will be taking home with us needs to be delivered to the hospital.
The Happy Hubby wrestled with the insurance company to make sure the medical supplies were covered – they finally got delivered late yesterday afternoon.
The Happy Baby has only spit up a few times. Normal baby stuff.
But his oxygen is still kind of in limbo. The doctor last night finally decided to do a chest X-Ray to see what was going on. They saw some spots in his lungs as well as some air under his diaphragms (probably got in there from the surgery).
I tell you! It just never seems to end!
If these last few things get resolved (and don’t turn into a greater problem, like pneumonia), then I think we are going home.
I feel so hesitant even typing that. Maybe I should just start having our mail forwarded to the pediatric ward. 🙂
No. One way or another, God will bring us home. He is just continually calling us to this season of more trust, more surrender, and more hope in His great plans for our Happy Home.
Dude, I sincerely pray that my next post will be an awesome announcement about our breaking free from the hospital’s death grip!
🙂
“Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.” Romans 8:24-25
It will happen soon!! I am praying for your continued patience and faith that God is working all things for good and that his body will cooperate and pass all the necessary hurdles!
God is preparing you for something wonderful! I can just imagine the inspiring, uplifting messages you will be bringing to moms in the future if you are able to lift everyone else’s heart like this during your trial! I just love your sense of wonder…that God IS doing something awesome! I am so glad you sense His presence with you. Our prayers continue for you and everyone in your family….your spirit continues to amaze me! You know deep in your heart that “God has NOT give us a spirit of fear, but of POWER, LOVE, and a SOUND MIND.(kjv)!” Hang on to that, sweet girl, and continue being that woman of courage God has so beautifully equipped.
Love you so much!
Maureen Breslin
We are praying for a quick, smooth, anxiety-free homecoming.
Dear Happy Home Fairy, I can’t remember exactly who told me about your blog, but I visit it every now and then to see what cuteness you are up to and all the ways you are creating such a happy home for your precious family. When I visited your blog recently and saw that your Happy Baby has been in the hospital, all I could do was weep and pray. Your most recent posts have really hit home with me as our 10 month old also has hypotonia as well as vision and speech delays. When he was 5 months old, we went through all of the testing that you and your family have recently gone through and at 6 months old, we had a muscle biopsy done. He was diagnosed with congenital fiber type disproportion. There is not much known about this muscle disorder so all we can really do is walk this road of uncertainty hand in hand with a God who we can trust will ALL certainty. Please know that this happy family is praying for your happy family. 🙂
You have been so inspirational and strong, we are all feeling like we are (or want to be) part of your blessed family. Praying always. He is simply adorable!! Your whole family is!!! God is so faithful, we know He has great plans for you all!
We are still praying! Thanks for the update, sister. Love, the Koz’s
Yes! It WILL happen Julie! Have faith, I know how tired you are of this emotional roller coaster, but you will have that baby home soon! I feel such a calm writing that. I know it doesn’t really helpYOU that I feel calm, but I do. I can’t explain why I feel so certain, but I just do. So take heart that God will deliver you peace soon. 🙂
Who said, “God never gives us more than we can handle”? You’ll look back on these days and realize that God knows your strength as a family and will hold you in the palm of his hand. Face each day with the resolve that God’s grace will shine upon you. Take each day as it comes and know that you are loved and cared about.
Praying for a breakout sooner than you think!!
Glad the surgery went well and insurance issues are solved — blessings.
What a little doll the Happy Baby is! praying for him and all of you!
Yes, it will be and I can not WAIT to see it!!! 🙂
Praying, praying, praying for Happy Baby’s grand arrival at home! “But let all who take refuge in you rejoice; let them sing joyful praises forever. Spread your protection over them, that all who love your name may be filled with joy.” Ps 5:11 It’s a marathon, but there IS a finish line. You’re getting closer every day! And even when it feels like you couldn’t be more broken, done, exhausted, stressed, fearful, angry, or fragile, God will not give you more than you can bear. He knows our limits. You will not be defeated by this. He will not let despair overtake you (not for long, anyway :)). Joy is coming, and I pray it’s very VERY soon! God is good, all the time, and He is at work in this!
Just want you to know that you are truly an inspiration to me. And….I love that you say “dude!” :0)
beautiful boy! will pray