Striker approved

Some of you may have seen my other thread in Team https://www.ar15.com/forums/General/i-need-a-miracle-Daughter-is-in-the-NICU-update-12-sept/75-2660569/.  For those who don't, what follows is a quick synopsis of the whirlwind of our life:.

About two months ago, my daughter, Eloise, was born a month early, we knew she would have some issues, but had no idea about the hand we would be dealt. We knew she would be coming into this world with Downs Syndrome and we knew she would likely need at least a week or two in the NICU. What we didn't know has sent us down a path of pain, anger, sadness, despair and hope.

My wife went in for her normal weekly checkup, and it turned out to be not so normal very fast. Eloise failed the first non stress test. They gave the wife some food, but Eloise failed again. My wife called me to tell me she would be having an emergency C-section that night or tomorrow AM, and together we picked that night at 7pm in hope for the best outcome. I arrived with our 8yr old son at about 430pm, and we went to quickly get some snacks. By the time we get back to the room there are 5 staff members there, and Eloise's heart rate is around 80bpm when it should be over 140bpm. The doctors tell us we are going now and rush my wife out of there for an immediate emergency c-section. The last thing my wife remembers before being put under was hearing "she's crashing" and a different nurse saying "I am so sorry" as she shoves a catheter into my wife.

The next hour was a little crazy, and I don't remember much at all. My wife's C-section went fine, however Eloise had to be revived. I was told she would be transported to a different hospital with a higher level NICU and would be going on a 72hr cooling protocol. I was told Eloise was very floppy. My wife ended up coming out about 90min later and her first words were "How is my Daughter?" All the staff turned and looked at me to answer. I told her Eloise needed a transfusion, and to be revived, was intubated and was going to a different hospital. We really had no idea how bad things really were.

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The next day I ran into work just to button up some things then ran over to the NICU. This is what I walked into.

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Then the Doctors showed up and he told me how bad it really was. I was told she is showing little to no brain activity and will likely only make it 5 days. I then had to make the hardest phone call I have ever had to make. I had to call my wife who was still admitted at the other hospital. I had to tell her what the doctors just told me. The hospital gave my wife a pass to come see Eloise, and my wife was discharged the next day.  And we prepared for the worst case that our daughter wouldn't be coming home. Telling our son that his baby sister might not come home was the 2nd hardest thing I've had to do.    

Eloise made it to day 4, she was off the cooling protocol and got an MRI. It wasn't looking good. She has a ton of brain damage in the following areas: the Midbrain, PONS, Basal Ganglia, Cerebellum and Medulla. The areas that are damaged control eye movement, movement planning, hearing, consciousness, movements, sensation of face, face movements, tears, taste. balance, swallow, voice, sensation from limbs, movement control, tone of trunk, movement control, executive function, emotions and behavior. The Doctor told us, she will never live a normal life and that some parents in our shoes would have let the child go in peace. My wife and I thought about it and decided to see how Eloise does for a few days. Then she started to move some on her own. Her will to live and fight was a light in the darkness that had consumed our lives, and gave us hope.

About two weeks later, the decision was made to remove the breathing tube as she was showing signs of progress.  Unfortunately developed pneumonia and had to be reintubated. She recovered from the pneumonia after  and they decided to remove the breathing tube again.   Unfortunately this time she developed a staph infection in her lungs along with pneumonia, and had been intubated again. Last week we made the call to get her a tracheotomy and a feeding tube. She needs a stable airway and an intubation cannot be a long term solution. It is now confirmed that Eloise will also have cerebral palsy.

So what does all of this mean? Elose will be coming home. We don't know exactly when, but we do know she will need a few things in place before that happens.  I have no idea how much of these immediate expenses insurance will cover.  One of the top priority items is a standby generator and automatic transfer switch to support her ventilator, because without power she cannot breath. We will have to refit her room to accommodate her life support systems, and possibly a new stroller to accommodate her portable systems.  In addition we will need to hire an in-home nurse so she has 24/7 coverage.  My wife is a stay at home Mom so she can provide care during the day, but at night she will need someone watching over her.  Down the line we know we will have to retrofit our house for her mobility needs, and that a mobility vehicle will be in our future.  These costs will not be covered by our insurance.

We really don't fully know what is in store for all of us.  We know that the road ahead will be rough and Eloise has a lot against her, but our family is on her side, and we will fight for her.  She proves to us that there is something there and she's not giving up. We see that she gets mad, she gets happy, and she looks where there is sound.  This is a good sign.

I don't expect you all to completely fund my family, and asking for help is not something I ever envisioned doing, but anything is greatly appreciated.  I'll be keeping this updated and fully transparent.  

https://www.givesendgo.com/EloiseNICU

Donation bump

In and bump.

bang

clang

bumpski.

Bump

Bump. Eloise is beautiful.

Bump for a beautiful and precious little girl.

Hit.

Prayers & donation.

GOD be merciful.

When is the maid coming?

It's too dusty in here.

Hit and bump.

I’ll be praying for her, for you, and for your family. Life is precious, all life.

Make sure you tell the power company, Fire and EMS about her issues.  Supposedly they have a priority list for certain criteria.

Prayers sent.

Thank you for the opportunity to help.

Donated.  I wish you well.

Hit and Bump

bump

Bump and prayer

Bump, continued prayers.

Done, praying for your family.

-P

Bump.  Praying for yall.

Surgery for the trech, feeding tube and nissen fundoplication is on thursday.
This is needed to be able to bring her home. It will still be a while, but everyone at the hoapital is very happy for us and they think we made the right call.

The genersoity yall have shown my family is astounding. We can't thank yall enough.

Donated, bump, and a reminder of the 2022 Arfcom St Jude brick inscription,

"Real superheroes live in the hearts of children fighting big battles. Love and Hope, ARFCOM."

Here's one of our own with a big heart fighting a big battle.

🧸❤️

Y'all are in our prayers. We're about to have a baby girl any day now. Due date is tomorrow. Godspeed my friend; stay strong and lean on the Lord.

OST for payday.

Me too Tony.

 Hit and bumped

Bump for the night crew

A question for you, if you care to answer.  I saw the part about a whole house generator.   Would a computer non interruptible electric backup machine work temporarily instead?  It would be a lot less expensive and quicker to get up and running.  If power was lost, it would give you time to get a small and less expensive generator running to provide power.

Not tying to be an ass, just wondering how you could best make things work.  I can't imagine the financial burden you are in.

Prayers again sent.

Bump for donations! 🙏🏻

No worries at all, if yall are donating, I feel you have a right to know. The full house auto switch generator is a very strong recomdation from the complex care team. Eloise will be on a ventulator to keep her alive. Right now its unknown how long she could support herself with out a ventualtor. I have watch her get bagged twice so far to keep her alive when her airway failed. We will very likely have an UPS too. I have worked on UPS powered PCs before and I had just enough time to save my work before the PC shut down. I dont think that would be enough time to get a smaller generator on and pluged in and it isnt a risk I want to take.

I’m very sorry to hear about your daughter OP. Hang in there. I went through a similar situation with my youngest daughter a few years ago. Unfortunately she ended up passing away at about 18 months, but before that it was 18 months of constant doctor appointments and pt, ot, everything. It will never be easy, but you just have to take things one day at a time.

Look into Medicaid asap. Her disabilities should qualify her. We had insurance through my job, but couldn’t have done it without Medicaid. They basically picked up whatever insurance wouldn’t cover including all her equipment (respirator, oxygen, feeding pump, formula, custom stroller and seats, and several other specialty machines). They will also cover home health nurses. We didn’t use one as much as we could have, but it was a nice option sometimes.

Praying for you and your family.  My daughter is 7 weeks old and we just got out of our second hospital stay with her on monday.  The day after she was born she was rushed to the NICU with low O2 and pulmonary hypertension. Fortunately she recovered in a week, but that was the scariest moment of my life.  

I know you have a lot going on and technical discussions are probably the last thing on your mind, but depending on power requirements there are much bigger battery packs with UPS functionality than the small computer units you are probably used to.  I don't know how much a standby generator costs, but something like this combined with a traditional inverter generator for the house or just her room might serve your purposes and free up funds for other necessities.  There are also even bigger battery packs then that one, but the bigger they are the more expensive they become. Not trying to argue/antagonize or anything, just passing on information.

I was thinking of the costs also.  I know that his family is facing a seemingly an endless number of expenses and was just throwing out ideas that might help, at least in her early years.
I had an older computer one that the internal batteries lost their ability to hold a charge.  I wired a pair of external marine style batteries to take their place, and it will last for hours now.
The time frame to purchase a small machine would be a lot quicker than a whole house generator and auto transfer switch.
I know this is off topic, and is said to be more of a bump than anything else.
Your still in our prayers.

TTT

bump. hit. Were pulling for you sweetie.

A friend of my daughter has special needs and IIRC they used Medicare to make their house wheelchair friendly.

Donation sent.

When our daughter was born, she coded twice, was in the NICU for five weeks.  She was intubated for 7+ days.  It looked much like your daughter's photo in the NICU bed.

The doctors told us that she would never be normal.  She would have all of these different conditions and illnesses, developmental delays, etc.

While it has been a bumpy road at times, nearly all of the things the doctors anticipated did not develop.  She became a case study of Johns Hopkins to help medical professionals better assess newborns like her, and to teach them about approaches to treatment and outcomes.  

Right off the bat, our daughter, who was told she would never be normal, ended up being just that.  She will change the lives of kids who have yet to be born and continues to influence doctors and nurses today and beyond.  That is not normal--that is profound.

I'm not saying you will wake up one day and everything will be "normal".  Your normal will change now.

Your wife will struggle with this.  She will feel guilt, remorse, doubt--none of which are warranted but it will be her reality.  Support her.

What you will have is questions, doubt, fear, frustration, longing, etc.  That is the worst.  You will want to fix everything but you'll find yourself powerless--you can just minimize the potential struggles.  Don't internalize.  Talk about it. That will help you deal with everything.

What I hope you will also have is renewed faith, trust, and a deeper appreciation for life and love.  You will be a stronger man for all of this--and a better person because your perspective has now widened and continue to evolve.

I'll pray for you, your daughter, your wife, and your family.

Holy shit. I have a child that was diagnosed with leukemia and we've been battling it for over 2 years. As hard as that has been, I can't imagine what you're going through.

Prayers for your family.

Wife and I are in and also praying for baby Eloise.

Is there a way to pin this and make it a sticky?

@striker

Brother you and the wife are special people with a Kingdom focus.

Passed it on to my large family and asked them to share.

praying for your family right now.

The power company I work for will put a special seal on the meter that is white with a red cross and we dont cut them at all...definitely contact them OP and explain the situation. they will work with you

TTT

She just headed off to surgery. Should last about 6hrs.

Eta. I cant thank yall enough for everything you have done of Eloise and my family. I will adress the comments later tonight