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

Friday, October 5, 2012

Update/Pictures Friday Oct 5th

Hi again,

Seth handled his transfer to Children's very well, praise God, and appears to like it there. :) He is in his own room with the top off his isolette, so it's more of a bassinet set-up. We took in pictures, blankets, hats, preemie shirts, etc. so he could have a more personalized space, see our smiling faces when we can't be there, and look extra cute. (Thanks Sarah, Shauna, Doris, Sandy, Aunt Joanne, Manns, Joan, Limbo Links ladies, Arlene, Carly, and others I know I am forgetting! He's so big he's already outgrown the hats from some of you!)  We also have the recording of my singing, talking and praying to leave there for his listening pleasure. He could only tolerate about 10 minutes of time with us today, but he really LOVED the time initially as evidenced by his oxygen saturation going up to 100% without the nurse touching any settings on his oscillator. After the 10 minutes he started de-saturating and went to sleep, so he was politely ushering us out. :) He looks great, so that was encouraging to us.

The comprehensive echocardiogram reveals a real answer to prayer: his pulmonary hypertension is being effectively treated without at all enlarging his PDA (which is just classified as "trivial"). The blood flow around his heart and lungs is not being affected by either issue currently, as I understand it. Oh, I hope and pray God heals him! The doctors are going to start weaning his nitric oxide (the treatment for pulmonary hypertension) very gradually and see how he does using repeat echocardiogram investigations.

His lungs are still very sick, of course, necessitating the heavy dependence on the oscillator, but we're grateful they've been able to wean the settings some. He still requires a lot of pressure to keep his lung tissue open, likely due to the surfactant gene mutation as well as the scarring that's already occurred due to oxygen and machine use. So the focus is to treat the lungs and wait and hope he can grow faster than this mutation and injury can hold him back. He's now 5 lbs 1.5 oz!

The other kids are doing well. Will had to be put back on cannula because he wasn't able to keep his oxygen saturations in the 90%s without a small amount of oxygen, and now that he's such a big boy he needs more oxygen for his growing body! He's 6 pounds 4 ounces. Gracie is 3 lb 12 oz, David is 4 lb 10 oz, Marcie is 4 lb 9 oz.

Gracie and Marcie are still having periods during which they forget to breath and drop their heart rate. We pray they outgrow that soon. Both are still on high-flow cannula and a bit of oxygen, Gracie more than Marcie. David is the only baby not on any breathing assistance at all. He's also the best eater, although the past few days he's not been the best nurser, despite starting out so eager. Will wins the nursing prize, hands-down! David loves his bottle too much, but honestly it might be nice to have babies that prefer the bottle. It would be hard if all were clamoring for my attention. :} Will hears my voice and starts rooting around. So cute!

The other babies are such a blessing to hold and cuddle at a time when I can't hold and cuddle Seth much at all. That doesn't take away our sadness about Seth, of course, since we only have one Seth and love him as dearly as we do his siblings, but at least there is lots of outlet for my maternal cuddle instinct and Gavin's desire to hold his kiddos. He's a great dad! He's pretty nuts about the babies. :) He's also incredibly involved with Isaac, playing with, reading to, and parenting him, all of this in addition to working parttime at the Center near us. He loves having the chance to labor with his hands and get projects done for various departments there. I am very proud of him and grateful for him!


David in his adorable hat from Shauna

Marcie smiling for the camera

Will is done eating and supposed to go to sleep now

Precious Seth

Gracie-kins

Our oldest son won Student of the Month last night at exactly the same time as our "youngest" son was being transferred to Children's Medical Center for more intensive evaluation. What a strange mixed day of sadness and joy. We are SO proud of Isaac, and he is so proud of being the big brother . . . times 5! Thanks for the awesome shirt, Lynn! He wanted to wear it again today. :)



Isaac LOVES his teacher!

I'd better end this very long post. Thanks for caring, reading and praying. We'll keep you posted as able!

Love in Christ,
Carrie

13 comments:

  1. You have to be so proud of Issac! He is a handsome young man. Although tough to have Seth at a different hospital it sounds like he will have great care there, prayers will continue for him. The other babies are beautiful, good to hear they are doing well...although you don't know me I wanted to thank you for updating when you can. It seems I check in here before bedtime to see how everyone did during the day...I feel like I know each of those precious miracles! LOL....prayers and blessings to you all...

    Melana
    Lake of the Ozarks, Missouri

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  2. Yea Isaac that is so great! With all goinig on and he gets student of the month that says so much about yall as parents - way to go all of you!! I will say that this morning as I was reading your post my heart broke and I do not know what words to say to comfort your family. I have added the babies on our prayer list long before they came into this world and will continue to ask for prayers. Father we lift David, Will, Marcie, Gracie & Seth up to you and we ask that you would wrap Your loving arms around these precious babies. We ask that you send peace, comfort, wisdom, healing, and strength not only to this family but also to all the care givers and doctors. Lord you know what these babies needs are and Lord we know that You are there for us when we ask. We know Lord that everything is done in Your time and we ask for blessings on this family. We know that you are the Great Physician and through You all things are possible. We ask that you be with Isaac Lord and give him comfort, your love and understanding as he sees what his little brothers and sisters are going through. We pray this in your loving name. Amen Julie - Texas

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  3. Congratulations Isaac!!! that's terrific, Great Job!!! Gavin God Bless you, and may you continue to find God's Strength to walk on this journey with him.... Carrie, God is taking care of Seth, with his Love and Protection,when your not there,,and him having your voice and picture there, will comfort him,,, And I pray that God gives you the Strength, Love, Joy and his Peace that passes all Understanding,as you go from both hospitals....The Pictures are so Precious as always,,,I never realized how much Seth had grown!!!God Is really working in his body in ways we are not aware of.... Seth rest in God's arms so you get stronger everyday!!! And Gracie and Marcie,and David and Will,,as you are held in Gods hands and your Mom and Dad arms and may you improve your Breathing and Gain more wait...We ask this in Jesus Name Amen ......From Dayton ohio...P.S. I called in to the Christian radio station yesterday to ask for prayers for your family especially Seth...

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  4. Carrie, Coming home from working in the NICU each night, I love reading your updates on your precious babies. I care for ones with the same ups and downs and there is no greater joy than seeing premies SOAR...and grow...and GRADUATE!! Its just amazing. Seeing your precious 'party of five' growing and progressing is exhilarating! Im sad to hear Seth is struggling...have not seen this surfactant gene mutation before. But I am certainly praying and believing along side of you that he will overcome the odds and pull through with flying colors, as our merciful and Great Physician deems it so! Its wonderful to read the itty bitty details of each day and see all the great photos you post. You're truly amazing to keep such great updates and photos coming! BLESS YOU dear ones as you trust and rest and hope in your ABBA Father every baby step of the way. Oh how He loves us!
    Laurie Smoak, San Jose CA

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    1. Wow, great to hear from you, Laurie! Thanks so much for writing!

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  5. Father, You are the lover of our souls and the creator of our very beings. We come to you today, knowing that you are hearing our prayers and will answer them according to your will. We pray you will have mercy on Seth and heal his lungs and allow him to have a beautiful life proclaiming your glory. Thank you that David, Will, Marcie and Gracie are doing so well, but as they each have their own health concerns, we pray that you will heal them as well. We praise you that Isaac is doing so well and reaching his own milestones. And, we lift up Carrie and Gavin - it is only the beginning of this journey, be their strength and support and raise up others to help carry the load. Thank you for your mercy and continued blessings. NKL

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  6. I cried when I read that Isaac won Student of the Month! Congratulations, Isaac! I am so proud of you! You are the best big brother, and your brothers and sisters are blessed to you have you. Praying for God's healing hand on Seth, and for strength and joy for all of you. Love you!

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    1. I can see why you cried, given that you've been in on the "Isaac wants to be a big brother" journey since the beginning. Love you too!

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  7. Will is already getting figured out the-"ha,you thought I was tired and going to go to sleep BUT I am really WIDE AWAKE&READY FOR FUN!!!

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  8. Replies
    1. Thanks! I do too. :) Congrats on your darling little girl! Miss you, Carrie

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  9. Congratulations Issac!

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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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