Support Registry Update

There and back again: An abrupt readmission after discharge

Ben & Hope Crelin's Twins, Prayer & Care photo
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Ben & Hope Crelin's Twins, Prayer & Care
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Readmission after discharge

Simeon was discharged from the hospital Monday afternoon … and 72 hours later was readmitted. Why? The first night home Simeon displayed acute and very significant desaturations (yes, we barely slept as we were monitoring him ourselves and adjusting his oxygen requirement to get him to safe levels). After three nights like this and several phone calls with doctors (including the middle of the night!), Simeon was directly readmitted. We’ve ruled out any active viral infection as he has none of those symptoms. 

Investigations are being made into the multifactorial reasons as to why Simeon is displaying these acute desaturations, and this raises the possibility of moving up the timeline for the open heart surgery. We’ve been told that until we have the heart surgery, Simeon will remain in the hospital. 

Thankfully for this stay we’re now in the Heart Center, for which we are so grateful. Instead of Simeon being in a NICU pod, he now has his own room with a parental bed (pullout couch) next to him for Ben or myself. That means Simeon never has to spend another night without us. Ben has been taking the lion’s share of the hospital nights this go around while I’m home at night up with Calvin. 

Yes, it has been whiplash to discharge and urgently return within 72 hours. It was personally very distressing to us seeing Simeon's instability at home and being confused and second guessing ourselves since we were just told we’re all green lights for him to be home for a while. And we are so weary of being in the hospital. We are spread so thin at this point. That’s now 6.5 months of Simeon’s life and 7.5 months for the family. And yet, we are SO thankful that Simeon is safe and back in the hospital getting the best care he can get for all of his needs.
 
Pray

  • Please pray the heart surgery can be done as soon as possible and also according to whenever is safest for Simeon. 
  • Pray for accurate data for diagnosis of his acute desaturations, discernment on the part of Simeon’s care team, and availability for surgery as soon as possible in the CVICU. We want to be home as soon as possible with Simeon, and we trust the Lord for His timing.
 
Abundance
 
In all these things, the word the Lord keeps bringing to mind as I pray (and cry) in desperation is “abundance.” In our trials, we have experienced the abundant grace and compassion of the Lord. And in many ways we have concretely received his grace and compassion in very tangible ways through you all. Thank you to so many of you who have been holding us up in ways near and far. You all and your love are part of the abundance we have from the Lord, and we want to thank you again, and again.
 
A hymn that I've been returning to often as I sing and rock Simeon or Calvin is “He Will Hold Me Fast” by Matt Merker. We had this hymn sung at our wedding just after we had exchanged vows, and we modified the lyrics from wherever it says I/Me to We/Us. This hymn is so honest that it’s not “if” we face trials, but rather “when” we do so. We do not hold ourselves fast. The Lord does. Because we have been bought at such a cost, He will surely return to raise us to endless life. And though we have to walk by faith at present when the days seem gloomy, one day all will be turned to clear sight. We believe these words more earnestly now than we did on our wedding day. The modified words to the hymn are as follows:
 
When we fear our faith will fail
Christ will hold us fast
When the tempter would prevail
He will hold us fast
We could never keep our hold
Through life's fearful path
For our love is often cold
He must hold us fast

He will hold us fast
He will hold us fast
For our Savior loves us so
He will hold us fast

Those He saves are His delight
Christ will hold us fast
Precious in His holy sight
He will hold us fast
He'll not let our souls be lost
His promises shall last
Bought by Him at such a cost
He will hold us fast
 
He will hold us fast
He will hold us fast
For our Savior loves us so
He will hold us fast

For our lives He bled and died
Christ will hold us fast
Justice has been satisfied
He will hold us fast
Raised with Him to endless life
He will hold us fast
Till our faith is turned to sight
When he comes at last
 
He will hold us fast
He will hold us fast
For our Savior loves us so
He will hold us fast

Photo: Simeon and Calvin are infatuated with one another whenever they are together!

Ben and Hope Crelin
about 2 months ago

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Comments

Matthew Gemp about 2 months ago

God Bless your precious twin boys! They were “womb mates” from the beginning and it shows in this photo 🩵🩵 Continued prayers for your strength as Simeon’s heart surgery comes closer 🙏❤️

Snaque Rollo about 2 months ago

What a precious precious picture! They are definitely communicating! Prayers now from Montana that all will happen in our Lord’s time. Stay strong! Faith Filled, Fear Free! Snaque in

Amy McCarty about 2 months ago

Oh, that photo brings such joy! God knows what is best...sounds like all will get more healing rest with this new setup. Focus not on the months of separation, but the years you will have together once this trial is over. ❤️🙏

Alana Massey about 2 months ago

Loved the pic of them together…so precious…praying for the heart surgery to be scheduled as soon as possible, and for your strength as a family. May God bless you. 🤗🙏

Liz Arthurs about 2 months ago

Thank you for this update and the beautiful picture…and all the words to the hymn. I pray for you with both tears of compassion for the disappointments and tears of joy for how our Father is holding you fast. ♥️

Linda Shelton about 2 months ago

Oh, what a beautiful picture! They’ve known each other from the beginning and now can see face to face. How fun it will be to watch them grow in love. Blessings that Simeon is back in his own room where you can spend private time with him. I pray the surgery can be performed asap. God will be with ALL of you! Linda Shelton

Janet Young about 2 months ago

I am so thankful to the Lord that you no longer have to second-guess yourselves at home. That would simply have been unbearable. The wonderful care at the Heart Center, along with a private room at night for both you and Simeon, is definitely an improvement. Thank You, Lord, for Your goodness and provision. We also pray that an earlier date for Simeon's surgery will become available. Amen.

Rachel Hodge about 2 months ago

What a beautiful photo. We will hold you all in our prayers and pray for all the needs that Simeon has together with your anxieties and needs. We pray God will hold you and give you peace, strength, hope, love and wisdom xxxx

Lesley DiBello about 2 months ago

I love this picture of your darling boys. Continued prayers for all of you but especially sweet Simeon. I know God is holding you in His arms through all of this. Peace, prayers, hugs, and love to all of you.

Philikent32 about 2 months ago

I read these verses from Isaiah 40 just before reading this update. "He tends his flock like a shepherd, he gathers his lambs in his arms and carries them close to his heart, he gently leads those who have young." Praying for God to continue to be holding you close to his heart and to gently lead and guide you whilst Simeon is back in hospital 🙏

Cathy Robertson about 2 months ago

The words to the song you shared are so beautiful, timeless and pure truth. The picture of the boys together .. my heart just felt it!

Janet McClintock about 2 months ago

I wonder what the twins are thinking when they can lie close together, especially after months apart. Love this picture of the them! Praying the Lord will encourage you and continue to uphold you both, each day, hemmed in prayer. Thank you for the updates.
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