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

Sunday, November 11, 2012

Sunday 11 November update

Sorry for the few days of silence.  After Carrie's one night with Will in the hospital on Friday,  it was pretty apparent that he indeed is not ready to come home.  He just really isn't taking his full feedings well, even if he wakes up screaming with hunger.  He tires out too quickly and it really takes a long time to fill him up.

Though we keep saying this, we really think Marcie will likely be coming home this week.  She's doing great and eating well.

Grace, too, is eating well and progressing.  She is actually catching up to Marcie on her feeds, so she might be in the running for being the next to come home! She's still on a tiny bit of oxygen, but it's the type that she can come home on, so that's a praise. Of course, we'd love it if her little lungs grow out of their need for any additional oxygen.

David continues to do well at home, though he's "waking up" a bit more.  He's awake a lot in the evenings and gets a bit fussy.  We're just trying to find out what his needs are and aren't and how to best help him.  It will be quite a job to figure all the babies out as they come home while still attempting to keep them on a schedule. Thank God for His enablement and wisdom!

Seth yesterday was doing very well.  Carrie said it was the first time she had seen him breathing normally without labored breaths.  He was wide awake and alert for several hours and seems to be looking for more "input."  So he'll be spending time in swings or bouncy chairs so he can see more of his world.  The others have been doing the same thing in the other NICU and at home, so it's good that Seth now is needing and getting the additional sensory input.  Today he was moved back to the NIPV (non-invasive pulmonary ventilation) machine from the CPAP because he was not breathing as well.  Though that is a bit of a regression, he was needing a lower percentage of oxygen today.  The roller coaster continues . . . . He sure seems happier and less touchy than he did in weeks past, so that's a praise. The head neonatologist said that he still has very severe chronic lung disease, of course, and advised patience again as we wait for him to heal.

After Carrie's night by herself with Will, getting up to feed and take care of him as well as pumping for the rest of the babies, it became apparent how absolutely critical it is that she get a good night's sleep. Two hours here or there just isn't sufficient at this time as she doesn't have any reserve. Friday was not a good day; she had severely decreased ability to cope with our current reality.  The accumulated stress of having a very sick baby in one NICU plus three others in another hospital and a fussy little guy at home in the evenings, not to mention Isaac, is stretching both of us. We are already SO thankful for ALL the volunteers who are helping us in so many ways, including those enabling us to stay sane by allowing us to sleep more at night once more babies come home. If there is anyone else out there willing to take nights (even if we fly you to Dallas for a time), we'd sure appreciate the help.

Grace and Marcie getting to know each other.

12 comments:

  1. I'm praying especially for Carrie. May the Lord provide ample time for sleep and multiplication of emotional strength and reserves. May the Lord provide plenty of people to mother you as you mother your little miracles. I also pray that the Lord provides everything Gavin needs. I wish I could come to help. As always I'm praying for the babies, Isaac too.

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  2. Yes, you remember how precious those hours of sleep are for keeping your sanity. Praying for you all lots.

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  3. NICU days are incredibly difficult. The emotional rollercoaster is overwhelming, especially when you're dealing with lack of sleep. And it truly isn't understood until you've experienced it yourself. People mean well, but sometimes the comments do hurt especially when you're already overwhelmed emotionally. Praying for grace and endurance for all of you, but especially for Carrie, and always healing for all of the babies.

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  4. "Sometimes He calms the storm.....sometimes He calms His child...." My prayers tonight will elevate Carrie to the head of the list! I pray for your calmness, some peace where you can find it in your crazy world at the moment, a quiet heart so you may continue to hear His words to you and most of all ....sleep....sending all those prayers up along with prayers for your amazing husband, beautiful babies and that special "big brother" Isaac. I'm pretty sure he is just "waiting in the wings" to be such a huge help to you all at home when the babies all arrive! "...be still and know He is God" He will fill all your needs...and calm the storm....

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  5. Praying for the grace you need to carry you through and help you to do the next thing that's needed. Also for the sleep you're able to get to be the restorative kind. To quote a favorite song of mine, "Don't look down, it's too far, just keep a safe hold on my hand."

    (Actually, I find this whole album very calming - maybe you'd enjoy it, too: http://miriammarston.bandcamp.com/)

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  6. I am praying for you all but will especially pray for you, Carrie. I always struggle with anxiety and baby blues post partum, and I've only had 1 at a time and never a NICU baby. ONLY God can carry you through this! Lord, please give the Jones' tremendous wisdom on how to schedule their time, what things are priorities and what can be ignored for now, etc.

    We have 8 children and almost all of them have been fussy and cranky in the evenings for the first couple of months. It is VERY hard but it helps me to remember that it is normal for that to happen, and that they WILL grow out of it in time. I'm guessing you are going to have a lot of crying babies in the evening and while that is stressful, please know that it won't cause any long term problems to them if you can't figure out how to end the crying. I don't know if this helps a lot...it helped me to realize that even if I did my best, sometimes the baby would keep crying -- and it wasn't my fault!

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  7. Carrie, I also wanted to say I am so impresesed you've managed to pump this long. I haven't heard of how many moms of multiples manage to maintain milk supply in the midst of all the stress and exhaustion...it can't be easy.

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  8. Father, lift Carrie and Gavin to Your side, hold them and calm them, and give them peace and rest. You have given them these beautiful blessings, now please help them to cope with all of the ups and downs and needs of their family. Please provide good folks to be their children's care-givers, so that Carrie and Gavin can get the rest they need. We know that we can do all things through Christ who gives us strength, Lord, and we just pray for heaps of strength and merciful rest and continued blessings for the Jones as their babies improve and are able to come home. Thank You for all that You are. Amen NKL

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  9. I love reading your blogs about your babies. I had 3 of my four babies end up in NICU. I am sure someone has said it but in case they have not, remember the NICU is a noisy environment, give him some white noise, put a loud ticking clock near his bed, something to continue to noise. He might need that. Also, in the NICU, he was probably on a pretty strict schedule, even in the evening hours where they were required to wake him up to feed him and do tests. This might take some getting use to on his side and it might take a while. Finding a good lovey might help. God bless.

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  10. The NICU is so stressful, allt he ups and down difinitely take their toll. Having multiples is stressful, no matter how much you love and want them, it is stressful. Rest is so very important for both parents. I am amazed every day how wonderfully you are both handling all this. You may not feel very impressive some days, but you are and I hope someone tells each of you that every day. I will continue to pray for both of you, all the babies, and Isaac,too. You are a wonderful family and it is such a blessing to get to follow your journey. Thank you so much ad God bless each of you.

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  11. Having some noise in the background might be a good idea..also maybe some light, when my daughter was in the NICU for only 3 days she came home and after peacefully nursing, would cry for hours...if I would have figure that out back then, she was always with lights and sounds for those 3 days... Know that even when you don't post, there are prayers coming your way,,, you are never without prayers..for the needs we know about and the needs only God knows..Prayers for the both of you, Isaac and all the babies.are there....I do pray for God's Peace that passes all understanding fill Your hearts , minds and bodies...and give you the REST you need SO much..Carrie it's okay to show you weakness, worry and to be overwhelmed... anyone would in your situation...God knows you are doing all you can and even more for your Babies, and he will help you along this journey... Have your moments of crying for that's how the Lord helps us release our stress, and helps use move forward... And Lord please provide all the help they need for the strength they need to do your will.. Prayers Always form Dayton ohio

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  12. Thank You for sharing the story of your 5 beautiful babies! I am a Mom of 4 and live in Vancouver, British Columbia and check in regularly to see how they are doing. Best of Luck!

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

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