February; all the pink and red hearts go up everywhere with cheesy sayings and B and I usually have a dinner date celebrating our "dating anniversary" on the 15th. This month has an entirely new meaning for our family now. February is heart month. Raising awareness and funding for research is key to giving our heart babies more prolonged lives, with fewer surgeries, fewer complications. LONGER more quality LIVES.
Noah was born with a CHD, HLHS. I had the honor of speaking Feb 1st to a group, while I held Noah and shared his story, his strength, and the nightmare we have gone through the last few months.
CHD Awareness (Congenital heart defects); is February 7th- 14th.
Here are just a few stats to let sink in:
1 infant is born with CHD every 15 minutes. It is THE MOST common birth defects and about 1.35 MILLION infants are born each year with it. CHD kills 2x more children each year than all forms of childhood cancer combined.
We are only 6 months into this journey, and our medical bills have exceeded over 2.5 MILLION dollars.
I won't go into ALL the statistics because our journey is far too fresh and to be it is still hard for me to accept the reality of this, excuse my mouth, SHITTY circumstance. This is CHD and it's left a lot of my, now heart mom/dad friends, with empty arms and a broken heart.
Since the day we received Noah's diagnosis, the one little glimpse of hope is that the outcomes and heart surgeries have come so far in the last decade but they are still not good enough and are taking way to many little one's lives. Better technology allows for many of the diagnoses to be found prenatally.
Just years ago, HLHS babies had little options and usually would pass within the first few days of life. And now, "For the first time in history there are more adults than children living with CHD thanks to improved treatment and care."
I will leave the links below to some more stats, and I encourage you to read them, talk about them, post them, become an organ donor, donate blood, fund where and if you can. Many probably will gloss over, as I probably would have before. The day before Noah's diagnosis, I wasn't a heart parent either.
We checked in to the hospital Sunday, February 2nd around 3 pm. Oh, the PTSD and anxiety that came along with "voluntarily" walking back into those hospital doors, hearing the beeps again, and the fear of a "small" procedure with a long list of complications that can happen. Even a small procedure or surgery can be hard on his little heart.
Noah hated getting poked and prodded. He had to get an IV so that he could start getting fluids at midnight since he would not be able to eat. Bright and early, they came to grab Noah around 630 AM. Brandon and I walked down to the OR pre-op and signed the consents. Noah was getting a Gtube, and another small procedure to help prevent him from getting the recurrent UTIs. He went back around 730AM and was out around 1030AM.
The Gtube placement went well but they said he was bleeding and oozing quite a bit so they didn't feel comfortable moving forward with the second part of the procedure. It was unfortunate as we wanted to get it all taken care of and not have to have another future procedure with sedation etc but we were happy he was okay. The also decided to put him back on milrinone of .5.
He came straight to the CV ICU with his new G button, an arterial line, INTUBATED, and back on milrinone. He has an incision under his belly button where they went in with a camera to place the Gtube.
Thankfully they extubated him pretty quickly and he did well but stayed on oxygen until later in the day. The main goal was to keep him comfortable. His blood pressure and heart rate were elevated but later throughout the night they came down and stabilized. We took him OFFFFF milrinone around midnight and he has done so well. We also removed his art line and oxygen.
Due to the oozing from his Gtube, they decided to not feed him overnight and give him more time to heal. This morning he tolerated his first feed and today we will be getting out of the ICU and moving to the step-down unit. I still can't believe that once we walk out of these doors, we can go HOME HOME in a couple of weeks! God is so good.
Thank you for all the prayers, we are so grateful!