Going Home

July 19th, 2022 | EP. 15 – Going Home

After 99 days in the hospital, we are headed home! *We actually came home Friday, June 24th, but it’s
been a BUSY few weeks!

Grace has been recovering very well since her Norwood, even after having to go on bypass twice! The doctors and nurses are so impressed with her, after having to be intubated and sedated for twice as
long. Her parents, and of course all of her fans, know how strong she is; but she has definitely proved it
to everyone else!

We are so thankful for Grace’s surgeon, doctors, therapists, nurses, and the entire staff at Mott’s. We
are also very grateful for our care team at home. We will be closely followed by a nurse practitioner from Mott, as we record Gracie’s weight and O2 each night, who will look for trends. We also have a pediatric cardiologist in Kalamazoo, a pediatrician, and a home health nurse to check on Grace weekly. We are truly so thankful for all of the support and prayers thus far. Please continue to think of us as we navigate just being a family of three, juggling Grace’s many appointments, settling into our new home (purchased shortly before Grace’s birth), etc.

In addition to Grace’s frequent medical appointments home and away, mom and dad have been busy keeping up with 6 different medications that are needed until Gracie’s next surgery, the Hemi-Fontan. The Hemi-Fontan is tentatively scheduled for September 27th! Medication is typically drawn through a syringe and injected into Grace through her NG Tube. We do most of the medicines twice a day. Once at 9:00 AM and once at 9:00 PM. There are some additional ones scattered throughout in between those times.

Right now, we are working on bottle feeding. Grace hasn’t been very receptive to bottle feeding, partly because she was previously intubated and her throat is a little sore, but also, she just hasn’t grasped the concept yet. Do any of you out there have any suggestions on best bottle feeding practices? I’m all ears. Feel free to text ‘dad’ and provide some feedback or shoot us a message on the Grace Elizabeth Heart Warrior Foundation Facebook Page. Right now, we are feeding Grace 95ml of mixed mommy milk with a dash of formula for some extra calories. Grace is getting fed 7 times a day, every 3 hours starting at 3:00 am with a break in feeding at midnight so mom and dad can actually get some decent sleep.

Speaking of sleep, Grace is a rockstar overnight. She sleeps all through the night. Freaking love this girl. Also, she had a little vocal cord scratching from intubation while in the hospital, so right now she can’t really talk/cry too loud, but she is definitely healing quickly from that as we notice that she is starting to get louder. Nonetheless, Grace loves her sleep. Mom and Dad, well, we aren’t quite sure if the word sleep is in the dictionary anymore.

A Couple of Announcements and Updates

1.) First off – we want to apologize to anyone that has donated towards our Gracie Gang bracelets and haven’t received them, we have been trying to figure out the logistics of the cost of shipping. Well, we were trying to figure out the logistics of shipping, then dad just got lazy and hasn’t been to the post office to ship. We are looking to ship the rest of our bracelet orders this week. Please be on the lookout for those of you who have donated and have not received your bracelet yet.

2.) Dad has been working with a law firm to establish an actual Non-Profit Organization. We are very close to being fully established. My plan for the Non-Profit Organization is to be able to raise annual capital that can be donated to other families who may experience CHD (Congenital Heart Disease) with a focus on HLHS (Hypoplastic Left Heart Syndrome). Once we are fully established, our “Grace Elizabeth Heart Warrior Foundation” Organization will officially be listed directly with banking institutions where bigger companies and/or donations can be made for tax write-offs. If this is something of interest to you or you know of someone who may be interested in helping support children with HLHS, please reach out to us using the contact form below. Thank you in advance. Also, thank you to everyone who has supported us through our journey. We can’t express enough how grateful we are to have family, friends, and loved ones such as yourself supporting us during these early stages.

3.) We have about 150 Gracie Gang bracelets left. We’ve had several people ask where they can get one. If you know someone who might be interested, or if you are interested in one yourself, please navigate to the following page:

4.) Abby and I are officially moved into our new home with Grace. That being said, I know many of my friends weren’t quite sure if we are able to get out of the house and do anything. The short answer to that is: Yes, we are able to get out of the house with Grace. I only say that because it kind of dawned on me the other day when one of my friends told me he and his wife weren’t quite sure if it was appropriate to ask if they could come to hang out or even ask if we could come over. By all means, if you’re interested in connecting with Abby and me, we would love to have some company. Don’t be shy. However, I must say, if we do hang out, please make sure everyone washes their hands before interacting with Grace. If anyone is feeling a little under the weather, we ask that they do not come over or have us over. At least during the times between Gracie’s surgeries. Grace has a higher risk of getting sick, so we just want to make sure we take all of the extra precautions. Thank you in advance for understanding. That said, Abby, Grace, and I are totally open to hanging out with friends, family, and loved ones. Let’s connect soon.

I believe that is all we have for updates right now. Thank you for being patient since our last blog post. It’s been a lot of long days getting acclimated at home and figuring out schedules while trying to find any ounce of sleep we can get. Things are progressing well these days and we plan to be more active and frequent with future posts. Till then, please enjoy this collage of pictures since we have left the hospital after Gracies Norwood Operation.

Sincerely,

The creators of Grace