Home Sweet Home

What an amazing and exhausting last 4 weeks!

After exactly 3 months in the hospital Asher was discharged from UVA Hospital on the 16th of October. There are no real words I can compile to truly express how it feels to have our family of four at home together. Ryder has seamlessly stepped into his roll of big brother. Without even knowing what Asher has gone through, he has also taken it upon himself to be his brother's keeper. He does not like it when Asher is crying and he cannot make sure he is okay. If there is a paci around that Asher does not have, Ryder makes sure Asher does not go without. To see the purest form of love blossom between my two boys is indescribable. I knew being home with both our children together would be sweet, but man did I have no idea just how sweet it would be.

Now I'd be lying if I said I didn't miss having night nurses! ha... my sleep surely was more frequent, but I would take a lack of sleep over a hospital stay any day! Especially since Asher's 92 day hospital stay consisted of:

6 days in the NICU

76 days in the PICU

10 days in the IMU

1 open heart surgery (BT Shunt)

1 heart catherization

1 contrast enema

1 colon resection

3 bouts of Necrotizing Enterocolitis (NEC)

6 intubations - totaling 14 days

6 picc lines - two surgically placed

9 echocardiograms

103 xrays and ultrasounds

87 days on IV drips

400 blood draws

11 blood transfusions

70 days of IV liquid nutrition

WEEKS of drug withdrawals

100+ therapy sessions

Asher is so resilient and we are over the moon to have our family of four together at last! We are so thankful for the whole staff at UVA Hospital for taking such phenomenal care of not only Asher, but of me as well. There was not a day that went by that the staff did not check on me and make sure that I was doing okay. With covid restrictions and the distance from home, it was nice to know that there were people there checking on me too.

We are so lucky to still have an incredible team of doctors and nurses while Asher is going through his interstage period. (interstage: the time between open heart surgery #1 and open heart surgery #2) In preparation of going home with Asher, we were given a scale, a pulse ox and an iPad so we could confidently track Asher's health from home. We weigh Asher once a day and also use his pulse ox once a day to check on his blood oxygen levels. The information we collect then gets inputted into an app on the iPad that Asher's interstage nurse at UVA is able to see in real time. We also input every diaper change and how much he eats every day. Giving Asher's team all this information lets everyone keep a close eye on him and how his body is handling his shunt while we are 2 hours away from the hospital.

We are also very lucky to have a wonderful pediatrician and pediatric cardiologist here in Roanoke that also keep a close eye on Asher during this time. Every week Asher is seen by a doctor, typically it's the UVA cardiologist one week, the Roanoke cardiologist the next week and our pediatrician the following week. That is on repeat until his next open heart surgery. It is a lot of traveling back and forth to appointments, but Asher is thriving at home and we could not be more proud.

This past week we took Asher to the cardiologist at UVA and had the discussion of next steps. It was determined that Asher would have his pre-op heart cath done on December 8th and then we are looking at a mid-January to early-February Glenn Procedure. (open heart surgey #2) I can't believe we are already talking about a next procedure and next surgery when it feels like we just left! We knew the time between procedures would be short and I am just thankful that we have the ability to get through the holidays and have a little bit of normalcy at home a little longer.

I will try to keep this blog as up to date as I can over the next two months and I'm sure as we settle into a good routine here at home that will be a little easier than it was this past month. Garrett and I will never be able to thank you all enough for your prayers and support. Asher has been doing really well at home and we know that God heard every single one of your prayers!

As always, please keep an eye on Asher's instagram page for some photos in between blog posts. In the meantime, enjoy this video of Asher's 3 months at UVA!