Praise to the Lord

Praise to the Lord
Citizens (a band that plays worship at Mars Hill Church)

Verse 1:
Praise to the Lord, the Almighty, the King of creation!
O my soul, praise Him, for He is thy health and salvation
All ye who hear, Now to His temple draw near;
Sing now in glad adoration!

Verse 2:
Praise to the Lord, Who over all things so wondrously reigneth,
Shelters thee under His wings, yea, so gently sustaineth!
Hast thou not seen how thy desires have been
Granted in what He ordaineth?

Verse 3:
Praise to the Lord, O let all that is in me adore Him!
All that hath life and breath, come now with praises before Him.
Let the Amen sound from His people again,
Let the Amen sound from His people again,
Let the Amen sound from His people again,
Gladly forever adore Him.

Praise to You, Lord!! Praise You for Your faithful presence in our lives….

With the exception of a trip to the ER last week that ended up resulting in just an adjustment to the setting of one of her shunts, she is doing absolutely amazing! She had a full day of cardiology and neurosurgery clinic appointments yesterday, and came out shining!!! Her heart continues to show no signs of rejection, her vitals are rock solid, her drug levels are really close to being perfect, and she was even able to come off of a dose of her diuretic
(diuril), so now she is down to a single dose of diuril every day, and that is it for diuretics!!! She is off of her prednisone and making great progress
with weaning her hydromorphone!! And to top it off, her MRI showed beautiful changes to her ventricles!! Both shunts are working wonderfully!! Hallelujah!! Thank you Jesus!! Her next neurosurgery appointment is in 3 months!! Thank you, Jesus!!! We are just blown away by her progress-it is miraculous!! Praise to You, Lord!!!

In occupational therapy, Poppy is working on neck and core strength. Unfortunately, we are currently on a bit of a break from binky training 😦 Ever since the recent hospitalization, she has not been interested in her pacifier. Even just having it sit in her mouth makes her gag and vomit 😦 I still try when it seems like an ok time, but no luck. Her OT said this is very common for any baby who has been in and out of the hospital like Poppy has, and the hydrocephalus doesn’t help matters. With that though, she does have a nice swallow, praise Jesus!! This is not always the case-this is a huge blessing!! So we get to try some sweet potato puree next time!!! She’ll be 5 1/2 months at that point and maybe she will like it? So until her next appointment, we are working hard at building her neck and core strength up! Praying she’s a fan so we can start to test her tummy!

I was hoping in a while, after she is able to show us she can tolerate a little something in her tummy without vomiting, that she would be able to transition to a g-tube (a port that is surgically put into the stomach used for hooking up feeds for kids who aren’t able to consume enough calories to grow by mouth) as she learns to enjoy eating orally. But, I learned at her neurosurgery appointment, that because she has 2 shunt systems that each have their own tubing, her space around her tummy is full of tubing!! You should see an x-ray, it’s nuts!! This makes her getting a g-tube very challenging. I’m told it’s possible, but that her shunts would probably have to be reworked. And yah…that’s not worth it. Pretty sure if her shunts are finally happy, we are not messing with them!!! This really bummed me out, because I think the majority of her gagging problem comes from having that awful yellow ND feeding tube down the back of her throat!!! Who wouldn’t gag?! I was really excited for her to eventually earn a g-tube so we could really get her excited about eating orally. Ugh…bummed, but really, should I even be surprised? This is how she rolls…God will guide us through the frustrating trials of feeding…He will.

Even as I finish typing this, all about this..my disappointment about her not probably being a g-tube candidate, I am convicted…so so humbly convicted. Seriously, Christi? Poppy is home, she is doing amazingly well…..we are soaking in the family time and getting to know her well. Just typing those words, “getting to know her well,” makes my eyes well up.

A few months ago, before Poppy got her heart, another family from MT was here with their baby boy. We had gotten to know each other during our stay in the CICU. Their sweet baby boy had the same diagnosis as Poppy (HLHS), and was doing awesome at home. They were there for his Glenn (the second procedure). All was expected to go really well. He didn’t end up making it home with them back to MT, rather, he went home to be with Jesus. It was gutteral sorrow that consumed me when I found out…I was there late that night at Poppy’s bedside…I read the update on facebook and I just lost it! I lost it!! I grabbed our nurse and body shaking, head bobbing, I sobbed all over her shoulder. Even though I thought I had really ‘gone there’ in my head of what that may be like numerous times with Poppy, it wasn’t until then that it hit me…things really can change in an instant and as much as I thought I had accepted this possible reality- I had no idea and still don’t- there’s no humanly way to and thinking, I really can’t even imagine being the mom and having my baby go on home before me 😦 But…the comfort to us who believe…he is no longer in pain, he is with Jesus…

This family…they are a beautiful and amazing Jesus loving family. They came back to the CICU to say goodbyes..and I remember his mother saying to me, that she’d be praying that Poppy would get her heart, that we’d get to take her home, and that we would “get to know her well,” because they had gotten to “know their son well” in those 6 months they had with him, and they were utterly beyond words grateful- their looks of grief, joy, love and sorrow gave it away. What a true honor and gift to get to meet them and what a tremendously humbling experience to be witness to.

Those words give me goosebumps and bring tears to my eyes every time I think/say them. What an unexplainable blessing to be able to “get to know her well…..” Those words will forever mean so much to me.

Tonight, Poppy has friends, just down the street in the CICU still waiting for hearts. They are so so critical…I am not exaggerating when I say that they NEED miracles. Oskar and Adrian are desperate…the doctors are doing everything they humanly can, but things are looking bleak…I know God is bigger…and I know anything is possible with God…and ultimately, may His will be done.

We are on our knees fervently praying for God’s will to be that these families get to bring their babies home, and get to experience the tremendous unexplainable blessing of getting to “know them well.” Please, Jesus, surround them with Your grace, and peace, and loving presence as they wait on You.

On Facebook:
To follow Oskar: Oskar’s Adventures
To follow Adrian: Choo Choo’s Heart Travels

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9 thoughts on “Praise to the Lord

  1. The sparkle in her eyes and face get brighter with each new set of pictures you post. You are an absolute inspiration! Praying for Poppy!

  2. How awesome Christi! She is so cute with her little smile! And Crosby… what a kid! 🙂 I’m so happy for you all and your post was beautiful. Praise God indeed! You have a beautiful family.

  3. Praise to the Lord! I love that song! And I will continue to pray for you, for Poppy’s friends, the donar families and ones like them who have their time cut short to “know them well”. There is NEVER enough time this side of heaven to spend with our loved ones. But on the “other side” there is no greater feeling than to be with Jesus! (And I cling to that truth.) I continue to wear my bracelet…never take it off actually. Visited with some people in Glacier Park about Poppy…they were from Bozeman. And last night during the Bible Study at the prison, we thanked God for Poppy’s progress and the glory her life is bringing to God. I love seeing the pictures…they are all so precious. Love You All!

  4. What a awesome report i get a big smile on my face at all the progress Poppy has how great is the work of the Lord. What great pictures keep them coming. God bless you all….Poppy keep up the great work as well..Praying for Poppy and the whole family…. From Montana ” God’s Country ”

  5. What a little dolly!! You have such beautiful children! We continue to pray for all of you, and I stand in AWE at your strength, your endurance, and your ability to praise God through the good times and the bad. He is good!

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