Today felt totally like deja vu ala January 2006. When I got to the NICU I spoke briefly with Cole’s nurse to get up to speed. Tobie and the doctor came right over and we were pulled aside to talk about Cole. We looked at some x-rays of his chest. It didn’t look good. It was very cloudy. He did have something going on inside before the surgery. But even if we knew the outcome, the staff would have recommended surgery anyways because it was needed. Cole’s sats between yesterday and mid-afternoon today were terrible. I think everyone was a little freaked out about how fragile he is. I’ll I can say is seeing little Cole like this is a lot worse now than it was just 2 months ago. I’ll summarize everything in a list because so much is going on with the little guy.
1. He was put on the jet ventilator. We really have gone full circle now with respiratory assistance. His blood workup was terrible being on the conventional ventilators. His CO2 levels were crazy high. I’m not sure if this will have any long term affects, (everytime you hear high CO2 levels you think brain damage, you know?) . His latest gas (as of 4 pm) looked great. So that’s a positive improvement.
2. He has been given an art line in one arm. This is similar to the PCVC line he had so many moons ago. It will allow them to get an accurate blood pressure reading and draw blood without having to poke him each time.
3. They are going to start administering steroids to Cole again. They are going to give him hydrocortozine. From what we have been told, this is far less potent than the steroids he was once on.
4. We have to wait for the blood work up to come back, but his films lead us to believe he might have pneumonia. We’ll have to wait for the results before crossing that bridge.
5. They have stopped feeding him. Since he isn’t moving O2 very well, the last place to get O2 would be his stomach and intestines. This is a prime spot for bad things to happen. So for the time being he’ll just get some nutrients and lipids via the IV in his scalp.
6. He did test positive for a couple different bugs. They probably started to colonize when the ET tube was put in. We will know exactly which bugs are in him once the cultures finish growing. Currently he is on a broad spectrum antibiotic.
7. They are going to start the diuretics up again. His films show some fluid accumulation in the lungs. His first round were probably be lasics again.
8. They have given him sedatives so he isn’t mentally alert through all this.
9. This is the worst part (I know how could it get any worse?), they have paralyzed him with drugs. If he were to breathe on his own right now, it would be bad for him because he would be going against the jet and he could possibly make himself toxic. So they have given muscle relaxers that basically paralyze him so he will no longer move or, well do anything for that matter.
So what do we do from here? I don’t know. My gut says something bad is coming our way but we are hoping for the best. The staff say different (which of course is always a good thing). They feel pretty confident he will start to improve in a few days now that they have found the settings on the vent that he responds well to. They will slowly try to wean him on his settings (when we were leaving tonight, they had already had weaned him from 100% to 90% O2). Eventually they will take him off the jet and move him to maybe the conventional ventilator or better yet, CPAP. While Paige was only in Gen Pop for 1 day post op, Cole might be there for weeks. They have even taken our crib away and put Paige into a single bed. I hope she’s not alone for too long because the room looks too big without little Cole.
Oh yeah, Paige is doing great (of course I had to post about her!).
Tobie here: I keep thinking “why is this happening?”. I know I’m not supposed to be thinking that, I should be over those feelings by now…but we’re also supposed to be on our road to coming home by now. It seems bizarre to me that about a week ago I was worried about Cole cobedding in Paige’s crib when I bring them home together because she has pink sheets and I’m not too sure he’s a big fan of the color pink. And now I have to worry about him being paralyzed and sedated so he doesn’t realize he is in pain or discomfort from being on the vent and having more tubes and lines in him than he ever has since birth. I was looking at his body laying there back in the isolet thinking that this couldn’t possibly be happening to my adorable little boy who was so playful and unbelievably cute just two days ago. I can’t hold him when he is on the jet ventilator and I can’t touch him because tubes and monitors and IVs are coming out of every hand/foot/head/body part. The nurses tell me to talk to him and try to touch him, but he’s sedated and paralyzed…so how would he know I was there? It pains me to see my beautiful baby boy in this condition so I think this would just be more hurting for me without any benefit to him. I don’t fully understand the game plan for his recovery and no one is committing to any timelines. I understand the non-committal because every baby recovers differently…but for my sanity I need some timeline. I understand the bacterial infection needs to be knocked out, then I think they are going to wake him up slowly. Cole is such a cry-baby, but in a sweet way..I’m going to be sad when he wakes up and realizes the tube is back down his throat. The doctor has pretty much told us that he won’t be coming home anytime soon, especially with this setback. I feel so helpless and sick to my stomach that this is happening.
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We are praying for Cole & you two.
We are glad that Page is doing so well right now. We hope she doesn’t get lonely either.
~Gina B.
Eric and Tobie,
We continue to pray for all of you every night, and tonight asked for special blessings on Cole. Please know that you remain in our thoughts and we are all pulling hard for Paige, Cole, and both of you.
Deb (seabreeze from TC)
Well, I’ll start the comments.
a. Thanks for posting. I too feel the place you’re at ala January, and am thankful I am privvy to updates.
b. For what it’s worth, and what I know, I agree with the actions taken. Bug(s) confirmed. Divert all energy to killing the bugs, and don’t use it for eating, breathing, or anything else that you can use life support for. This is not a time for advancement, it’s a time for bug extermination.
c. Remember, that Cole has done a LOT of growing since January. He is not much better equipped to handle these sorts of catastrophes. Months of potent antibiotic-laced boob juice, truckloads of love, and punches to the head made him the lean mean surviving machine he is today.
Oh god oh god…
“He is not much better equipped to handle these”
SHOULD BE…
“He is now much better equipped to handle these”
Another chapter from “When Typos Go Horribly Wrong”
I will continue to send positive thoughts your way.
FWIW our Zoe did the exact same thing Cole is doing only she didn’t need the jet ventillator. SHe was on the conventional vent for about a week before she finally came around again. She did not respond well to the anesthesia though. the surgery was fine. They paralyzed her too and stopped feeds for awhile. She also had a ton of BAD episodes where everyone would come running to try to help. I keep meaning to send you her oicture now so you can see how normal she is now. I know it is hard to be stay positive and strong but it is what Cole needs to feel from you right now.
Suzan
I will pray for Cole more than ever tonight and in the following days. May he just take all his energy to get rid of these natsy bugs. I think I may have told you, buy my little Justin had e-coli infection in his blood when he was probably less than 2 lbs. He did overcome get better, but he sure scared us in the process. Thank you so much for the updates. Glad to hear Paige is doing well and hopefully she doesn’t miss Cole too much. Many thoughts & prayers being sent your way.
Angel (from TC)
Hoping and praying things turn around for Cole soon. Infections in babies this small seem to spread so rapidly. But they also respond to anti-biotics quickly, too.
I know its sometimes difficult to be optimistic, but Cole has overcome so much since January and has proven himself to be a fighter. With some rest and a few days of anti-biotics, he will be off the vent before long at all.
I’ll keep you all in my prayers– especially Cole.
My heart goes out to you all.
I am sitting here in tears reliving my Ryan’s NICU experience. Matthew was being discharged and I get to the NICU to pick him to find that Ryan has a suspected infection, in a matter of minutes he went from an open crib and full bottle feeds, to no feeds, pic line, spinal tap, x- rays, blood cultures, head iv for blood transfusion, and an isolette. I feel your pain, sadness, and know how darn scared you all are. Cole is so much stronger now that at birth. He will pull through this with flying colors. It will take a few very scary days and before you know it you will be bringing him home. My thoughts and prayers are with you all.
Hugs,
Chrissy- from TC
Eric and Tobie,
I have been following this blog since it started. I have only posted one message so far, but check this daily. I want you to know that I am praying for your family and especially for Cole right now. I have faith that your family will be together, yes Paige will most likely be joining you at home before Cole, but he will come home not too far after. I guess a positive side is at least he is in a place where this can all be detected right away, rather then out of the hospital not showing signs and getting worse. I will keep praying that both of your babies come home soon. God Bless you and your family.
Thinking of you,
Melissa (Bromont)
Dear Family….my heart was aching learning about Cole’s problems. Cole is a fighter….may God bless him and take away his infection so Cole can continue to fight and prevail. My thoughts and prayers are with you all right now. God Bless and keep you well.
Catherine (Bromont)
I’m sure you’ve heard this prayer before, but it just kept ringing in my ears when I read your post:
“God grant me the serenity
to accept the things I cannot change…
Courage to change the things I can…
And wisdom to know the difference.”
As scarey and hard as things seem, keep sight of the things you can control. The most important of which is the amazing job you are doing as parents. Your actions are teaching Cole and Paige how to be strong and courageous, to have faith, to love, and hold onto each other. You are doing so wonderful - stay strong and have faith that God is taking care of the rest.
Cole, Paige and both of you are in my prayers every day.
-kf
We check you site daily to see how the babies are growing and progressing. We are sending so many prayers for Paige and Cole… God be with you and may god send his healing touch your way… God bless you
The Houle Family
North Dakota
Go PAIGE AND COLE… They LOOK AWESOME…
never Fear Tobie God works miracles. My mother was born blind and was blind until she was six months old. She had damage to both of her optic nerves. They had a prayer service when she was a baby prior to her surgery to have her sutures in her head opened. Before the surgery SHE regained her vision… She is happy and has three wonderful children….
Prayers coming your Way
Triplets4us@msn.com
Praying for your little boy’s safe recovery. And kisses to your little girl.