A few requests

My thoughts are with you guys and I hope for the best. 

Thoughts and Prayers to you and yours.  Modern medicine can be pretty miraculous.

We're absolutely with you. Let me know if there is anything wifey and I can do.

I’m sorry to hear about your daughters health troubles. 

About home birth,  do what makes you and your family safe and happy.  My wife had all this guilt because she had an epidural.  Nobody needs that noise when they got a little one to care for. 

Very sorry to hear what you are going through. Thoughts and prayers are with you.

Sorry to hear this.   Prayers with your family.

Our thoughts an prayers are with your family.

Please keep us updated when it will be helpful for you to do so.  We're all thinking of you.

Peace and strength to you and yours.

Sending her some of my medical good fortune and karma. 

So, things have slowed down and we’re settled to the point where we can at least catch our breath for a minute. Still very scared, but we know we’re on the right track. Below is a small background, skipping over a bunch of stuff and hitting the important parts.

Our daughter was was born in the [overall] third ranked hospital in Illinois. For reference, fourth is a tie between some place called “University of Chicago“, and a lesser known one. So we’re in a very good hospital. About five minutes after birth, our daughters oxygen starts to desaturate. They whisk her off to the NICU. After about 24 hours, we are told by the Cardiologist that they’re not comfortable with the heart function, and recommend that we transfer to a different hospital that has ECMO (look it up). The hospital we are at does have ECMO, but not for pediatric patients (and certainly not for neonates). When one of the top hospitals in the 3rd most populated city in the country tells you you should transfer, you listen. 

We transfer, and the new hospital—the lesser known 4th ranked in the state—happens to be the premier pediatric cardiac center in the state for everything up to transplants. Initially, the docs don’t think she will need ECMO, but after a day they change their minds. 

We don’t know what is wrong with the heart. The pregnancy was fine, the baby was well developed (9lbs, 9oz! 22in!), and there is nothing wrong with any of the hearts anatomy—this is after ultrasounds, x rays, angiograms, etc. But the fact remains that the left ventricle is not pumping well enough. Normal function is about 53% ejection fraction. Hers, when she was put on ECMO was about 12-13%. Our hope was that after 4-6 days of essentially resting the heart we would see marked improvement. We didn’t. We saw improvement, but it was miniscule. At day... 5? They drained some fluid around her heart (side effect of one of the meds), and while improvement increased, still tiny. 

We were starting to talk about next steps, which involve another transfer to a hospital that does transplants. She’s a good candidate. This is all still a week or 3 down the road, but we were not seeing improvement to realistically believe anything but a transplant was in her future. 

Until Today. Today is day 9 on ECMO. Today, on the echo, there were two views. One view showed an ejection fraction of 33%. The other view showed one of 50%. This happened in the last 24 hours or so. We are thrilled—now, instead of prepping for a transplant, there is a shimmer of hope. A transplant is still probably the most likely end game here, but now we are seeing real improvement and if it continues, we may be having a very different conversation. Just one echo, and only one view of it, but this is reason for cautious optimism. 

Yay!

Still in our prayers.

Hopefully she continues to improve, thank you for the update.  Remember to take care of yourself and mom too.

Glad to hear the good news! I hope her progress continues. 

Great news, the human body is an amazing thing, hope she continues to improve. Glad to hear that your family and friends have gathered around to help you guys out. We all need help from time to time, consider your family blessed that you have that community available.  Keep positive thoughts, we'll keep sending love and prayers to you and your family.

Hope is a wonderful thing! 

Awesome to hear good news! Do you best to be strong for momma and the little one. Modern medicine is amazing.

I hope things continue in a positive direction for all of you!

z31maniac said:

Awesome to hear good news! Do you best to be strong for momma and the little one. Modern medicine is amazing.

It really is. “Hey, we can’t figure out what the hell is wrong with the heart. Everything is normal except it’s function. We’re searching for the cause, but in the meantime, we’re treating the symptoms as best we can, which means PUTTING HER ON AN EXTERNAL HEART SO HERS CAN REST”

For reference, here is a picture of her  

Holy geez that's crazy. We are sending all the good vibes we can in your direction!

Wow, thanks for the update.  I'm glad it is good news!

I was just thinking about you guys this morning. Super good news for sure!

Toyman and I are saying prayers. Ours may have arrived early but they were healthy. Hang in there and keep us updated.

I'm a little late seeing this, but will definitely ad you, your wife and your little one to the "prayer list".  I also wanted to second the plug for RMH.  My sister's kids have/had (my niece passed last year) a progressive illness which requires several weeks of medical treatment at a time several times per year, in multiple different locations.  I can't imagine where they would be without RMH. 

An interesting side note, a lot of RMH locations accept the "pull tabs" from aluminum cans and recycle them to help pay some of their bills.  It's something you can do that literally costs nothing and serves as a reminder of your own good fortune.