A few quick notes

Hi everyone,

I feel brain weary despite an awesome nap (THANK YOU, Mom and Dad Jones and Gail!), so I'll keep this brief.

Bottom line, we don't know what was wrong with Seth. He did not have any signs of respiratory infection, nor were they able to culture anything bacterial or viral. Our initial hypothesis that his tummy was bothering him turned out to be true. He was panting with discomfort, poor kid. With his scarred lungs it manifests a lot more visibly than it would in another kid with normal lungs, hence all the head bobbing and retracting. We still don't know what was/is really wrong with his tummy: he doesn't digest his milk very well despite it being the elemental amino acid formula (which is more digestible than even breast milk if I were to go dairy- and soy-free); his symptoms may have been due to Prevacid overdose after all; we'll probably never know! Just glad to be home. :) I really missed the other kids.

Will rolled over several times today! I think I mentioned David starting rolling a couple of weeks ago. Marcie seems to be getting close, and Seth immediately rolls to his sides when placed on his back. When we force Gracie to do tummy time she just cries. :} David has two teeth, as of last Thursday, and it appears one is coming through in Seth. What?! Isaac didn't get teeth until 6 months! The babies are now 4 months adjusted age.

Okay, that's my baby booking for today. Thanks so much for praying and caring and checking our blog! A few pictures follow.

Love,
Carrie

Marcie (with Lynn) sporting her new outfit from Lynette. Who can resist zebras on the bottom?

(I'm sorry, the majority of the time I can't remember who gave us what anymore! It's terrible! This is a recent gift so has actually stayed in my memory for a few days. Our kids have the most adorable clothes, booties, caps and blankets thanks to many of you!)

We bought 160 jars and 15 boxes of baby food the other day! It's fun trying to spoon that in. Marcie is the "best" at eating solids, though Seth is doing pretty darn awesome at mouthing things, including the baby foods, thank God! He'll probably never take a bottle; he'll just go straight to solids and sippy cups.

From Seth's tummy time this morning at Children's - CLEARLY feeling better! When I was there yesterday he cried for nearly 4 hours straight. Sam was blessed with the fun version of him today. :) Thanks for praying he'd have a better night! The other babies did too, but still not great. (Sorry Lynnette! Hope you got a nap today!) We can't thank God and our friends enough for all the help.

I love this little outfit with matching cap. I'll get a picture of Gracie in it too.
(She was at her helmet appointment.)

And I saved the best for last. ;) Our kids have the coolest Papa in the world. He put these sunglasses from the Weaver kids on and did his best rapper impression with David. Do you love the finger signs?!

Seth's home!

Yes, our blue-eyed boy is back with the rest of the bunch-o-babes as of this afternoon.  As Carrie was the one with him today when the doctors, she has all the details about him, which I haven't heard yet, since Grace and David had appointments that I took them to.  I'll let her fill everyone in on the details when she gets a chance.  I just wanted to let you all know.  Thank you so much for your prayers for him, as always!

Grace and David's appointment was for their helmets today.  Grace is all done and David has maybe one or two weeks left.  It's really amazing to see the before and after 3d photos of both of them.  Their head shape change and  how much they've grown in just three weeks are quite amazing and noticeable!

Gavin

Seth just before being discharged, holding a bunny the hospital gave him.

Update on Seth Tuesday March 5th

Hi all,

Well, the cultures all came back negative for respiratory viruses and bacteria, and Seth is back down to only 1/2 liter of oxygenated air. Turns out we were right when we thought his breathing difficulties (retractions, faster breathing, head bobbing with each breath) were due to his tummy being upset - which at first we thought was due to his new formula, then we thought it was due to the Prevacid overdose. So we've gone from this being a suspected respiratory infection to a gastrointestinal issue, the real cause of which we don't yet know. He's not digesting his food and he seems very dry-mouthed/lipped and hasn't cried any real tears despite crying for nearly 4 hours straight this morning. He is currently off of food for an hour to rest his tummy, then will restart at less than half the usual volume and see if they can slowly increase and watch how he tolerates it. They will also start IV fluids if needed. I am currently waiting to see the GI doc.

Thanks for your prayers and for all the ways in which you help and bless us! One specific prayer request would be that the babies at home would sleep better. They got up about every hour last night -  only one at a time, of course, but couldn't be ignored lest they awaken the others. (Sorry, Deb.)

Love and gratitude,
Carrie

P.S.

Apparently, his current condition has nothing to do with the medication mess-up.  It was just God's way for us to get him to the hospital where we could get him better care than at home.  He works in mysterious ways . . . .

Seth Midnight update

Seth is all settled in the Pulmonology unit at Children's where they think he has a virus of some kind.  They are waiting to get the bloodwork back to be sure, but want him to stay so they can monitor him.  They put him up to 2 liters per minute flow on oxygen, which is more than they would like him to be on when at home, and he is much calmer and more comfortable.  They were finally able to get an IV into his right arm.  His oxygen saturations were fine at one liter, but he was pretty agitated.  Carrie is staying the night with him and we should know more tomorrow at the earliest when we get blood results back.  His chest x-ray looked really good, so that's a praise.  They thought that it was possibly pneumonia, but have ruled that out, thank God.  He's happy and sleeping well right now.

We are so thankful again for the helpers who are staying with the babies to allow us to get to the hospital at a moment's notice and help with so many other things.  This is such a group effort-- amazing!

Good night.

Gavin

Asleep, but still keeping an eye on things.

Seth at the ER

Seth is at the Emergency Room tonight.  Carrie realized this afternoon that we have been giving Seth a medication incorrectly (my mistake due to misreading the label and re-labeling the syringe incorrectly).  Some of the side effects of the mistake seemed to be what we've been seeing the last few days that we've been wondering about.  So, Carrie and Sam have been up there for about 5 1/2 hours by now.  They don't have any specific answers except that maybe he's actually got some other issues that have nothing to do with the medication mistake.  They have tried 4 times to get an IV in him with no success, so the last I've heard is that the "IV team" is coming to give it a shot.

Thank you so much for your continued prayers for our little guy.  He's such a sweet, calm, laid back boy, it's really hard to see him so uncomfortable and dealing with all his issues for so long.

God is good.  All the time!

Gavin

I've just gotta say THANK YOU!

So many of you have been so kind and so faithful in prayer, and we've received so many thoughtful, generous, sacrificial, often extremely time-consuming gifts, we are just overwhelmed and touched beyond words! I am so sorry that I've let lots of thank you's fall between the cracks (just discovered one from December that I never acknowledged, and I bet there are dozens more!), and as much as people say I don't need to thank them or others, I just want each of you to know we appreciate you SO MUCH! I still hope to thank you individually but know I will miss many who have done so much. Our Heavenly Father sees, and may He bless you richly as you've blessed us.

Happy news!: Seth has gained 10 ounces in 3 days!! He's keeping this new elemental formula down so much better! We sure hope and pray it continues. He seems pretty miserable, though, so we'd appreciate prayers that his tummy will adjust to the formula change and he can return to his formerly happy self. He's certainly plenty "regular" so we're not worried that constipation is making his life difficult, but the gastroenterologist says some kids don't handle this formula super well for the first few days. It appears Seth is one of them, despite his being able to keep it down and gaining weight fantastically.

I need to run. Thanks again; we appreciate you so much, and thanks also for continuing to remember to pray for Gina and family as they grieve their precious little boy.

Love and gratitude,
Carrie

(Pictures later. No time tonight.) ;)