But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Monday, December 31, 2012

Hooray for Seth!! And another big prayer request for him

I cannot wait to get this little guy home! Last night I got to give him part of a bottle and he did great! Not great enough to come home yet, by any means, but the therapist was happily surprised at how well he did and how calm he was with his mommy.

I got choked up talking to him, thinking back to how very, very sick he was, and how a couple of times we thought the Lord might be taking him imminently. My gratitude is just overwhelming. Once again, thanks a million times over for all your prayers and thoughts and concern! It's indescribably wonderful to see him so happy, fat and healthy. He still works at breathing much more than his siblings at home ("retracting"), but he just looks and looks into my eyes or at the pictures on the wall or the lights in the hallway, can follow an object and even turn his head to do so, and just does the same things they do at home! I even thought I caught a little smile once in a while. And his cannula is like Gracie's, so no more big ol' apparatus on his face, although he still has the stomach tube going in his nose.

Which brings me to the prayer request: The medical staff is trying to determine if it's better to (1) send him home with the tube, (2) put in a gastric "button"/stoma through which to feed him directly into his tummy, or (3) get him to full bottle feeds.

The problem with the first option is he is gagging/vomiting up his tube twice a day on average, which requires care replacement and verification that it is in the right spot (and not down his trachea into his lungs!!), plus increases the risk of him aspirating some of the milk into his lungs as he coughs and sputters, which of course can lead to aspiration pneumonia. Needless to say, pneumonia in his compromised lungs could be deadly.

The problem with the second option is that the surgery to put in the stomach button/stoma/hole will require he be re-intubated, i.e., a machine will have to breath for him and he'll have a tube down his trachea again, which will cause some damage to his already machine-damaged lungs, which of course could set him back. They hate to do that as he's doing SO well right now. However . . .

The problem with the third option is that it may take him a LONG time to work up to full bottle feeds, both because it's a lot of work for him to breath and suck and because he has a strong gag reflex very common in babies who have been intubated for so long.

The neonatologist coming on duty for the next two weeks will be the one to make the decision, in consultation with the other specialists and us, of course. We would love, love, love to have Seth home during the first half of January, but we don't want to in any way rush him or do anything harmful. So please pray for wisdom and for God's favor to continue to rest on our little blond boy! I keep praying the staff will LOVE him. I think they do.

He is so pudgy and has more hair than all the other babies combined; it's just bleach-blond so can hardly be seen in photos. I will try to take some good ones today. :)

All the others are thriving, despite minor colds again. Thank God the rest of us are well, including Isaac! I love to see his faith in asking you all to pray, and I love to see the Lord's answer. It's good to have the usual goofy, energetic Isaac back again.

Love and gratitude - to God be the glory, as always!
Carrie


Some older pictures of Seth from this past week and the week before (sorry if they are duplicates):


How CUTE is this pudgy shoulder!?

Now the others at home:
Will smiling and kicking away!

Marcie on Christmas day "all dolled up" (thanks Shauna and Sharon!)
Gracie's turn to be the dolly I got to dress up! Thanks to Jan and Diana for this headband.
It was a warmer day that day, before Christmas, hence the bare legs.

Will seems to enjoy group baths in the big tub the most


David, helping hold his own pacifier. He's starting to do the same with the bottle!
He loves to smile and giggle, and both he and Will are really into cooing.




15 comments:

  1. Wow, in tears here! Tears of joy for Seth! What a way to finish out this year and move into the next. I pray for God's wisdom to be passed on to Seth's Doctors and patience to his Mama and Daddy who just want this bundle home....what a wonderful post update! I'm also very happy to hear Isaac is doing better and getting back to himself. The babies all look beautiful, happy, healthy and so loved! Happy New Years to your family! Praise God.....praise Him!

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    Replies
    1. Yes.....Praise Him indeed!

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  2. Dear Lord, You have loved Seth longer than anyone, and we know that You can bring him to full health, if it be Your will. We pray now that You will guide and direct all involved so that the best decisions are made regarding his care. And, prayfully, we ask that You allow the doctors to work Your miracles and that very soon Seth will be able to go home on full feeds and breathing well. Thank you for all Your blessings and how well David, Will, Gracie and Marcie are doing. Please continue to send showers of blessing upon the Jones family and all who are being Your hands and feet and helping to care for this sweet family. All praise and honor are due You, Lord. Amen. NKL

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  3. We nearly lost Lily at 23 weeks (we made it to 32 weeks!), and of course I prayed, but one of the things I grew to accept and understand was that the answers to your prayers might not be as direct as you're expecting. In my case, the answer to my prayers, which were "Lord Jesus, please care for this baby, cradle her and love her and keep her safe. My body has failed her and she needs you." the answer was my doctors and midwives. Through them, the wonderful work they do, God and Jesus answered my prayers! So while all of these answers has a trial you have to work through, I'm certain God has heard your prayers, and through the talents of the doctors and midwives caring for your precious boy, I think you'll get the right answer for you, Seth and your family.

    Sarah M.

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  4. Thank you Lord for blessing Seth and continuing to help this precious boy. Also for being with Isaac and healing him. Is it only me or do you think Will looks like Isaac in the picture of him in the tub? Much Love to All. Aunt Fay

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  5. God is good!

    June S.

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  6. Thank you Jesus.. such great news about Seth.. Praying he is home quickly. Love all the pics.. Happy new year.


    ERIKA

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  7. I had such a wonderful time helping out last night! The barbecue was awesome, and I'm so glad we were able to give them all a bath. I hope they went to sleep for you! When Seth is home things will really get going! :)

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  8. I had twin grand daughters born 8 weeks early. I can't make a fair comparison to your situation, but do understand the trials you are going through with them. God is so good. From the morning my daughter-in-law went to the hospital at 4:00, we began to pray. By 5:00 A.M., I started making phone calls to my family, who notified their church families, and to my church family. Within hours, multitudes of people were praying for our little Madeline and Caroline. From the second they were born, they didn't have the first health issue. While they were in the NICU in Plano for five weeks, there were two babies in their wing who did not make it. It was heart breaking to know that these little things had such a short, unimportant life in the world's eyes, but our God knew different. He called them home to be with Him. Our prayers did not fall on deaf ears and we know that. Anyone who does not believe in prayer can not possibly believe in God. Maddie and Caroline will be 16 months old on the 14th and we celebrate each day. I am their primary care giver and they are my sunshine. Each day is a gift from God. Although they were in vetro babies after 10 years of infertility and a year of fertility treatments, God, showing his sense of humor, is blessing us with their baby brother whose birthday C Section is scheduled for February 4th. I'll have three under 17 months old to love and cherish each and every day. Thanking God for your story, your testimony and your precious, precious gifts. He is so good to us!! Our prayers for Seth's complete healing will continue. Jackie

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  9. God all of these babies are very special ,,and we thank-you so much for the healing work You have done in their little lives'....But God Seth has always been extra special to me,,and I Pray for your continued healing in Seth, Please give the medical team You have picked for Seth, Your knowledge on the next step in Seth's life and when and how Seth can come home safely..In Jesus name we pray...Amen from Dayton Ohio..I love seeing all the pictures!!!! Maybe when there is time we can see a video ????

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Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

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