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, October 1, 2012

pulmonary hypertension, PDA, infection and eye exams

Hi everyone,

How's that for a subject line?! It's been an interesting day. Also a lovely one, as we got to hold all our babies but Seth, and I got to be with Seth during his echocardiogram and for a long while afterward, stroking his temple and singing to him. He seemed really comfy and happy. He looked at me for a while, then went to sleep, and his oxygen saturation stayed good the entire time. Thank God he wasn't so "touchy" today and handled his exam so well! He is SUCH a precious little boy. It satisfies me deeply to be able to touch and kiss him and smile into his sweet eyes.

The results show that he has pulmonary hypertension again, so he is back on the full dose of nitric oxide - he had been weaned to 12 ppm; is now on 20 ppm. His PDA was tiny, thank God, but the nitric dilates all blood vessels so it's likely the PDA will also enlarge as they treat the pulmonary hypertension. It's such a tightrope walk and roller-coaster! I don't even really know how to pray except for healing. Obviously the Lord doesn't need me to pray for all the right things in order to do what's needed for Seth. Sometimes it really does seem as though our prayers are just groanings, and we depend on our Triune God's wisdom, love, intercession, power and sovereignty. Thank you for joining us in prayer; a HUGE encouragement!
Seth all bundled up after his echocardiogram

Seth's sweet profile. He's 4 lb 13 oz tonight.

A huge praise is the good eye exams on the "older" three babies (A,B,C; aka Will, David, and Marcie). No evidence of retinopathy yet. David's blood vessels have grown out to zone 3; Will's and Marcie's are still in zone 2. None of the retinas are fully developed yet, but they will continue to until the babies' actual due date in early-November and beyond.
David is Daddy's Allstar! (so are the other kids, of course!)

LOVE the camo pants! And the faces. David is king of faces.

I got to tandem nurse David and Will today! They did great - SO CUTE!! Will was really not interested at first, but when David joined him on the nursing pillow he looked at him and latched on just as David did. It was so funny, like he was actually competing! Will is 6 pounds even now! David is 4 pounds 8 oz; 2 oz less than Marcie. Come on, David, man-up!

Will snuggled in after his feed. I want to kiss and cuddle him NOW!
As much as I want them home, though, I realize I need to enjoy the freedom I have while I have it.
Marcie keeps forgetting to breathe and having low heart-rate episodes. She is too old to get the caffeine early preemies receive to stimulate breathing, so she's needing higher airflow still from the cannula. We pray she'll get better at regular breathing.

If David is king of faces, Marcie is the princess of poses

Big yawn! Daddy is holding his little girl.
"I'm perplexed . . . why did you put me down, Dad?"
(So sweet: thank you for the clothes, Wanda! Too bad Gracie is so tiny still; otherwise she could match.)

Gracie is so sweet, doing well on a lower setting on her CPAP. She is still 3 pounds 8.8. oz. She is well-loved and often commented-upon because she has such big eyes and is so alert - not that you can tell from this picture! See the posts from when she was at Children's to get her PDA ligated. :)


Love and gratitude,
Carrie


11 comments:

  1. Dear Lord, we come again to ask for Your Healing for Seth's lungs. We know that we are encouraged to not give up, to continue to ask, and wait on Your answers, and to accept Your Will. It is difficult, Lord, to wait now, when Seth so greatly needs his lungs to overcome the damage they have, so that he can grow and develop as he should. But, Lord we know that You are in control, and whatever the answer, we will praise You.
    You know the desires of Carrie and Gavin's hearts and how much they love this little child, please hear their pleas and all of the others which have gone up and bring a miracle to Seth.
    Thank You so much that the other babes continue to improve, and that the eye exams went well. Be with each as they have their own issues, and continue to bless them all.
    Lord, please continue to give Carrie and Gavin the strength they need as they go through this journey - they are relying on You and have great faith that You are and will provide according to Your Will. Thank you, Lord. Amen NKL

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  2. I love the pictures, as always. So happy to hear four of the babies are doing so well. I pray off and on all day every day for Seth to receive a miracle. He is such a precious boy. They are all sweet little reminders of God's love and caring. Please take care of yourself Carrie. I know what the NICU takes from you and I pray for you every day as well as your entire family. Thank you so much for sharing your amazing journey.

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  3. Love the pictures!! I see a lot of Isaac in those sweet little faces. Prayers for all of you.

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  4. Carrie and Gavin,

    I am so impressed by how you are handling everything regarding these little precious ones! I was such a mess with Caden (born weighing 4lbs. 14oz.) and just down the hall in the NICU for only 4 days, and you are enduring so much more. You amaze me. All of your babies (Isaac included- though I know he is not a baby) are so precious. Though I haven't commented before, I just want you to know that I am lifting you all up in prayer. I pray that you will continue to have the strength and rest that you have/ are getting now, and that these babies will continue to progress, if only in the littlest of ways. I don't know how you have the time or energy to even write on your blog and post pics, but I have enjoyed them, and it helps me to know how to lift you up in prayer. You are loved and lifted up! ;) In His love, Stephanie (Truitt) Carbajal

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  5. We pray for you and your little ones and for that big brother each day. At Monday Morning Meetings in the JAARS Aviation Dept. We keep the others informed as to how things are going. We thank God for the wonderful parents that he sent these precious babies to.
    Blessings,
    the bergs
    and all the JAARS folks

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  6. Beautiful pictures! Prayers continue....

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  7. Such peaceful, and much loved Babies..so content to be with Mom and Dad...They look like they have no cares in the world, and are resting in the arms of OUR Loving Father...Carrie and Gavin too, I can tell you also are in the arms of God, You are a witness for Christ, by sharing your strength, your faith,and your joy, of loving interacting with Isaac and all your Babies....It's also a witness for Christ, when you share your tears and frustration,,,and even in your tiredness you update thousands of people who have come to Love the babies, and are praying for your family, when you need your much needed rest.....My Prayers continue for Each Baby for their own particular need,that God alone knows what they are, and what they need to be healthy enough to go home... And yes Carrie God has given this special time to physically heal until The Babies are stable enough to come home... And For the "Little Fighter Seth" who has a special place in My heart(and many other too),,That I Place him on the
    Alter of God.. Praying Only You Mighty Father Knows What Seth's needs are, and we Don't Understand what is going on ,but we believe he is IN YOUR LOVING ARMS,and YOU ARE IN CONTROL.....Amen.....I think It was so so cute about Will and David Nursing!!!!! From Dayton ohio

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  8. First-time poster, but I've read since the babies were born -- learned about you through my aunt, who works at BI in Grand Rapids. You are amazing. You have such great attitudes. When my oldest had to spend 3 days in NICU, I was a mess. I am praying for all of the babies and you as well.

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  9. My precious babies get cuter everyday. Praying every day. Kisses to All. Love you!

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  10. Such a cute baby! This reminds me that I have not been in for an eye exam in forever. I really need to do hat. I have been wanting to do this for a while, but my week has been so crazy. Thank you so much for these great pictures.

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  11. Hello! I will be looking forward to visit your page again and for your other posts as well. Thank you for sharing your thoughts about eye exams in your area. I am glad to stop by your site and know more about eye exams. Keep it up! This is a good read. You have such an interesting and informative page.
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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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