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

Wednesday, January 9, 2013

The new latest on Seth :)

It's always changing! His virus panel came back negative today, as did his swallow/aspiration test, so we are thanking God for those good results. He is still having a very difficult time not gagging and vomiting when taking a bottle, even as just the first few drops go in, so clearly he will be needing a lot more time before he'll be able to get all his nutrition by mouth. The decision in rounds today was to go ahead with the g-"peg" which is less invasive than a g-tube but will still allow us to feed him directly through his skin into his tummy. The neonatologist was going to try to schedule it as early as later this week. We'll let you know when we know!

I was with Seth for more than 2 hours today, a precious time as always. He is SO HUGE! He has big ol' jowls and pudge everywhere! He is increasingly relational, and a few times today it really seemed like he was on the verge of smiling (again, we all have to wear masks, so he doesn't get to see smiles much). The nurse said he smiles in his sleep a lot! He is such a cuddle-bug, loving every one who visits his room, looking very interested in his surroundings when picked up and given a different vantage point.

He likes to hold up his fuzzy blond head, but it's a LOT of head to hold up so is quite wobbly - which does not deter him in the least! He's still loving his mobile and its beautiful music (truly, it's a great mobile!), and I noticed he picked one particular flower-shaped part out and followed it around almost the entire circuit, even moving his head to keep track with it. I love him so much.

The babes at home are precious and smiling and "talking" and laughing. They crack themselves up. :) I love them all so much, too!

Beautiful pink-cheeked Marcie is, as always, the most vocal, with intonation and everything, turning her head and body to see what she wants to see, and still sleeping a lot - except when we want her too, of course!! We are trying so hard to keep her awake longer periods during the day, otherwise she wants to chat and smile the night away, when none of us really feel like visiting. :) Gavin was up with her for a couple of hours the other night and said, "It's a good thing she is so cute!"

Handsome, strapping Will is the most placid and cuddly overall, loving nothing more than to be held close when he's sleepy, but when he has a "felt need" he lets loose with a sudden, bone-tingling scream that shocks all our systems! "Where there's a Will, there's a wail," I wrote on our whiteboard out in the living room. Despite his capacity to wail, he is the only one who will lie completely at rest for a long time on the changing table, play mat, or in the bathtub, happily cooing, talking, smiling and looking, with his thick limbs at ease. (Other times, though, he flails around and plays like the others constantly seem to.) He loves to sit straight up in our laps and calmly look around, checking out the world. They all seem to love bobble-heading around, and it never ceases to be adorable!

David is the most devoted to the heads-up/looking around position, perhaps because he is the boy with the smallest head and has been home 3 weeks longer than any of the others. He doesn't seem to miss a beat. He is very active, perhaps the most of all 5. He is the most vocal boy. He is also the most laughing baby so far with the most ready smile for anyone in view, even if they/we are not looking at him. Sometimes he coyly ducks his head with a huge grin when we talk and smile back at him. He LOVES to watch Isaac make faces and noises and dance around in front of him. But when he's tired he starts to act a little frantic and wants nothing more than a tight swaddling and being laid in his [now recalled] Fisher-Price cradle. His eyes droop shut immediately.

Gracie is the embodiment of adorable tiny-ness. Everything about her is plump, perfect and tiny - except her eyes, which are huge! She loves to talk to the animals in the mobile over one of our big swings, and she'll "tell us all about it" when sitting up in our laps and holding her head up like a big girl. Her fists go straight up as soon as she is un-swaddled after sleeping, and she gets a very serious furrowed-brow expression of concentration when she is feeling disturbed in her little person. Her wail is truly impressive, given her size, but she only uses it as needed to insist on food when hungry or demand soothing when it's time to sleep. She is as pink as a rose, a blessed thing to see as she is off oxygen all day long now.

We have Grace's pulmonology appointment today. We pray we can discontinue her oxygen and medications altogether. She certainly SEEMS to be thriving!

Please pray for us between 6 and 11 pm our time. It's overwhelming then, especially for Gavin as he's trying to work full-time now, comes home tired, and is the main parent responsible for Isaac's school work, eating, bath, bed, story time, etc. When he finally gets Isaac to sleep he has to face 4 fussy babies: the proverbial "witching hour" is more like 5 hours at our house! He also has to get up early in the morning to get Isaac ready for school and there on time, no matter what the middle of the night feedings and baby care have been like (thank God, it's usually not much of an issue, bless volunteers!). I don't know any man who would love this schedule and its demands. I am SO proud of him! What a loving daddy and husband he is, and what an incredible work ethic he has!

On that note I'll sign off. Love and gratitude to all of you who are encouraging, blessing, praying, working, and LOVING babies along with us!
Carrie

9 comments:

  1. You are both incredible! I love all the descriptions!! What a treat for all of us today to get this special post. I love you and continue to pray!

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  2. Carrie, thanks so much for the very detailed description of each of the babies. I miss them and can't wait to get back in March. I had my Tdap shot yesterday as mine was about to expire.

    Love to all,

    Gail Boemker

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  3. I concur with the rest of the comments. The descriptions, the actions and what each and every baby and Issac are up to was precious. Thank you for continuing the blog along with all the responsibilities you have. God definitely picked the right parents for these 6 kids! I have enjoyed since Day 1 (and a little before) reading all the updates and progress. We continue to pray here in West Chester, Ohio.

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  4. Adding my thanks for this great update. Good news certainly blesses my day, too. Think of you all often during the day, and pray when I do, but will try for extra prayers during the 'witching hours'. Can't imagine how all that pandemonium plays out - hope you two get a little time away now and again to save your sanity.

    THANK YOU, Lord, for Your continued blessings. Please be with little Seth as he undergoes tests and procedures, and keep him safe and bring him through with flying colors. Your mercy and grace amaze us, Lord. Thank You for all You are. Amen. NKL

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  5. Yes! Aunt Jonelle agrees that it is so much fun to hear details about my nieces & nephews since I can't experience them in person. Thanks for taking the time to do that! We love you and pray for you often (and Mari waves from a distance...).

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  6. Thanks for the update - I loved reading about each baby's new tricks! Praise God for helping you through those long nights via love and baby cuteness. :-) I'm praying he will sustain you and keep those little ones growing just as they should!

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  7. Still Praying in Dayton, Ohio.....oh how I would love to be there to help with the babies!!! Thank-you too for all the updates.. I just love hearing about the little things the babies do...I pray for the medical team to continue to have the wisdom form God, to do the best for Seth,,I pray for all the Babies as they grow and develop... prayers for all the wonderful help sent by God to help this special family... AND ESPECIALLY for The Special Dad and Mom You have chosen, to be the parents of these special little Babies....
    God Please give them all they need to get through each day with You by their side..God Give Gavin some rest in you, and fill him
    with Your Peace the passes all our Understanding... Amen

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  8. So glad to hear a decision has been made regarding Seth's feeding tube...another step closer to getting that chubbykins home with his siblings. It's so amazing how each little one has their own personality, likes and dislikes. While all born at the same time they are indeed little individual people! I will pray particularly for Gavin, for some rest of mind and body and continued patience!

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  9. Ah "witching hour", we know that one all too well! We still "witch" a bit here, but it's really only from about 6:00-:6:45 at most. It DOES get better especially when you can drop those middle of the night and late night feeds. When we finally started doing our final feed at 8 pm it was as if we got a bit of ourselves back! Your sweeties are not too much younger than ours so it will happen before you know it. In the mean time, hang in there! Great news about ditching that oxygen and making progress with Seth.

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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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