Thoughts and prayers needed!

LindyT · 12-07-2010, 10:04 PM

Hello everyone

My wife and I had our second child on 11/19. He was immediately rushed to the ICU for pulmonary hypertension, then transferred to a children's hospital. The ventilator was not able to provide enough support and they were forced to do a very invasive ECMO bypass treatment (thank the lord we were at one of the few facilities that had this available) which takes the blood out, oxygenates it and pumps it back in, giving his poor little lungs and heart a rest. He was on that for 6 days then they decided to put him back on a ventilator. The good news is, he did very well once off the ECMO. A bit over a week later, he's doing well with minimal ventilator support.

They've determined that his diaphragm is weak. They tried to extubate, but he was not yet strong enough to carry the burden on his own, so he was reintubated. The thought/hope is that his diaphragm is able to strengthen on its own and he'll be able to go to a CPAP machine (like those used for sleep apnea patients) within coming weeks.

To further complicate issues, an MRI revealed unilateral polymicrogyria - a relatively rare brain anomaly. In short, the neuron transfer that usually takes place during gestation did not happen quite right on the left side of his brain. This could lead to some developmental delays and/or complications on the right side of his body. At this point, there's no signs of anything amiss (apart from the breathing issues, obviously) and the neurologist said an infant brain is very powerful and "wiring" around issues is possible. Fortunately, this was discovered early so they/we can work with him through development to stimulate the impacted areas.

Ironically, we named him Diesel James which has now proven to be a suiting name. The doctors and nurses all think its the perfect name for him - he's strong and has fought the odds several times already.

He's doing well at this point (all things considered) - apart from withdraws from the morphine, versed, etc... (my poor baby boy is an addict at a couple weeks old) - but alert, moves his hands, arms, legs, tracks visually, etc.

We remain optimistic and hopeful for a full recovery, even if there are challenges along the way, but I'd really appreciate any positive thoughts and/or prayers you could send his way.

As an aside... we live a reasonable distance from the children's hospital, so we are and will be in our coach for the next month or so. It's been in the low 20's and so far so good. The hydro-hot is a real lifesaver!

Thank you all for your thoughts; they're truly appreciated.

Dadeaux · 12-07-2010, 10:17 PM

LindyT our prayers and best wishes to Diesel James and you. We went through a life threatening problem with a grandson who spent his first month in an infant ICU, a very scary time for all of us but the good news is that he survived and is now a very healthy 13 year old. I hope you can tell a similar story some day.

God's Blessing to you.

**NLOVNIT** · 12-07-2010, 10:23 PM

We will be thinking of you & the doctors & nurses taking care of your little one. He sure is a little fighter, it's wonderful how he's making such improvements.

Lori-

Midniteoyl · 12-08-2010, 12:51 AM

You have our prayers for strength and guidance..

ftv37 · 12-08-2010, 01:14 AM

My little guy spent the first 4 months in the NICU we lived at Ronald McDonald House
for that time,if it weren't for the Lord and Prayers he would have never made it he is 5 now, prayer works our prayers are with you and yours.

rmmpe · 12-08-2010, 05:16 AM

My sincerest prayers are with you and your tough little guy.
May the Lord watch over him and bring him home to you safe and healthy.

God bless.

JRNOLL · 12-08-2010, 01:16 PM

Our prayers go with you.

**"007"** · 12-08-2010, 01:33 PM

Our thoughts and prayers are with you and your little guy, he's a fighter.

Good man · 12-08-2010, 01:44 PM

LindyT,
Our thoughts, prayers and good wishes are with you and little Diesel James. It sounds like he is a strong little fighter, for sure.
My daughter was a preemie and developed lung complications shortly after she was strong enough to come home with us.
She was admitted in serious condition. The hardest thing for me was to see her strapped to the bed so the IV's could be placed, looking up at us an crying as hard as she could.
I asked the doctors if they would allow her to rest upon my chest so she could hear my heartbeat and be settled. She and I slept like that for 3 days with minimal breaks and she started improving immediately.
Today, she is a beautiful 36 year old school administrator with 2 children of her own. Never underestimate the power of your touch, voice, smell and nearness when your child needs strength.
...And never, ever underestimate the power of prayer.
God Bless you and little Diesel James,
Jim

SuperMike · 12-08-2010, 02:50 PM

Our thoughts are with you from the other side of the pond. I will say to you that "YOU" have for now to be the pillar of your family. We as men will never understand what it must be like for the woman who gave birth to the child, in these circumstances. Inside she must be screaming and needs for you to be strong.

God bless you all and every prayer for a happy outcome.

May the Lord turn his face and look upon you and bring you everlasting peace.

Steve N Sal · 12-08-2010, 03:08 PM

Best to you, your wife and the new little guy. Sounds like a real fighter. You will be in our thoughts and prayers. Have a Happy Holiday Season.

Purplefans & Harvey · 12-08-2010, 03:30 PM

Our thoughts and prayers are with you also. Both my boys were preemies, and we spent time at our children's hospital in Boston, and then the NICU unit near us. You are your sons best advocate. You are his protector. Ask and push for any and all information that you can get. Your family will get through this. Be strong.