Gracies First Surgery (Remix)

Monday, March 21st, 2022 (4 days after being born), our baby girl Grace Elizabeth was scheduled to go in for her first open-heart surgery at the University of Michigan – Mott Children’s Hospital. For those of you who are just joining us, Grace Elizabeth was born with a Congenital Heart Disease (CHD) called ‘Hypoplastic Left Heart Syndrome’ (HLHS). With this in mind, the first original open-heart surgery that was planned has been postponed. Unfortunately, since Grace was born, she has continued to have a high heart rate and really low blood pressure.

Due to the high heart rate and low blood pressure, the doctors have decided that the best course of action would be to post-pone the original (Norwood Operation) and instead, focus first on controlling Grace’s heart rate and blood pressure. To do this, the doctors are going to put 2 bands on Gracies Pulmonary Artery. One band on the blood flow entry to… and one band on the blood flow exit from the Pulmonary Artery. In doing so, the team of doctors, specialists, and nurses believe that this will help constrict Gracies’ blood flow. With the blood flow being constricted at the Pulmonary Artery, this should Bring Gracie’s heart rate down because she is not having to pump as hard. Additionally, this will bring up Gracies blood pressure because there is a narrowing of the Pulmonary Artery (with the addition of the entry and exit bands that are going to be added).

For those of you with children, I’m sure you can all relate to the feelings, emotions, thoughts, and unknowns when it comes to having to have any type of surgery for your child. If you don’t have any children, take it from a first-time dad; it was and is very daunting. I would give anything to trade places with my baby girl. My heart breaks as I have to sit by on the sidelines, feeling helpless, as I watch this perfect example of beauty, which, God has created through Abby and myself; go through so much in such a short amount of time. It really changes you as a person, and a parent, to see your child being challenged so early on in life.

So leading up to Grace’s first surgery, we didn’t even know they were going to add this additional Pulmonary Artery surgery until an hour before surgery was scheduled. Truth be told, surgery was scheduled for 12:00 PM. Then it was pushed back an hour. Then another hour. Then another hour. At this moment in time, my wife and I were getting more concerned about the surgery (well, more than we already were). Additionally, I’ve been so consumed and passionate about starting a non-profit for Grace Elizabeth (Grace Elizabeth Heart Warrior Foundation) I was up till 7:00AM the night before working on building a website to:

• 1.) Update family and friends with a resource to for them to connect with us with prayers and support.
• 2.) To help try and take my mind off all of the stress that feels like is neverending. (Maybe stress isn’t the right word to use because Grace isn’t a stress on our life, she is an absolute blessing – so I don’t know, just trying to find ways to stay strong for Grace because she is staying so strong for mom and dad. We love her so much. I mean, the moment I held her for the first time, she had me wrapped around her finger. Freaking love this girl. (Dear Grace – MOM & DAD LOVE YOU)

Unfortunately, due to COVID, we are unable to have any visitors at the hospital. That is just soul-crushing in a whole different way because Abby and I both know how much Grace is loved by friends and family. To be able to have the opportunity for grandma and grandpa to come to see Grace and hold her and be in her presence; would be such a blessing. I know my mom and dad have been praying every night over Baby Grace and are extremely excited to see her and hold her. Yet, here we are in this COVID reality crap. Makes me want to puke just thinking about it. So many choice words I could use right now. Anyways, a lot of you here know how important Grandmas and Grandpas are to your lives right? Much like God’s love for us, our moms, dads, grandmas, grandpas and even great-grandmas and great-grandpas love our kids unconditionally. From the moment I became a Man (early on in my life if I do say so myself), the talks with my mom and dad about me having children in the future, I quickly realized how excited and happy they would be to have a grandbaby (Especially a Girl Grandbaby because my mom had all boys). Outside of the Daughters-in-law, my mom is finally going to get to have a baby girl who will grow up and veto all of the guys in every decision-making process from here on out.

I guess I say all of that because it is really heartfelt for Abby and me that we can’t even have our own moms and dads with us in the hospital. I know it would be really comforting to have them there with us and joy for Grace as well.

Ok, I tend to go on rants. Enough with the emotional outpouring; let’s get back on track.

It wasn’t until about 2:30 or 3:00 in the afternoon that the doctors finally told us they were ready for surgery, but we were not going to do the original surgery, instead, they wanted to do a remix with getting Gracie’s vitals to a calm state. So immediately, my wife and I were overwhelmed with the thought of having to have additional surgery. Scared is the first emotion that came to my mind. I just wanted to cry but I also felt I needed to be strong; not just for Gracie, but for my wife as well. There were a lot of tears being shed. As you can imagine, a lot of emotions. Having to hear this additional surgery was happening at the same time they are taking our baby girl on a Stryker hospital bed from the 10th floor down to the operating room with Mom and Dad walking behind Grace. That was hard. I can’t speak for my wife, but to me, that was the hardest thing I’ve ever experienced in my life. I realized how wasteful I’ve been in my own life… how much more I could be doing having been raised as a healthy individual from birth. Sitting around, playing video games in my free time??? Like really???? What the heck am I doing? I owe it to my daughter to be healthy and hard-working and so much more.

As Grace entered the elevator down to the operating room, Abby and I were unable to ride down with her. We were instructed to sit in the family lounge on the 10th floor during the 1.5 to 2 hour Pulmonary Artery heart surgery. Midway through the surgery a nurse came and updated us on the progress; she said: “Grace is doing well and surgery is going well, there was a little hiccup but it was only minor and she recovered quickly.”. Of course, the only thing we latch onto as parents was the phrase “…a little hiccup…”. Nonetheless, it was a relief to get some updates. Finally, as soon as the surgery was finished, the doctors walked into the lounge with us as we were patiently waiting for what felt like an eternity to hear the outcome of Grace’s surgery. They came in with straight calm faces. I’m sure they do this frequently, but to me, I was a little concerned at how normal they looked as they came into the lounge.

It was at this moment Abby and I heard the words of relief we had been waiting for: “Grace did well in surgery and will need to recover for a while.”.

Internally, my thought process was: “H. E. Double Hockey Stick YEAHHH!” – I know it all along. GRACE YOU ARE A FREAKING STUD. YOU ARE SO STRONG. That’s my baby girl. Crushing her first surgery. #ProudDadMoment. LETS GOOOOO!!!! Again, I’ll never get tired of saying this but Grace I LOVE YOU. If you are reading this in the future, you are so strong. You made it through heart surgery, you can do anything you want… don’t ever let anyone tell you that you can’t do something (unless it’s me or mom and you are in trouble or grounded – but I’m sure you’ll be a perfect little angel. Right? RIIIGGGGHHHHTTTT????)

What a weight off our shoulders. The first surgery was a success and we have 3 more surgeries left to go. Mom and dad can breathe for a while. It looks like, Grace is scheduled for the Norwood Operation surgery roughly 4 – 6 weeks after this successful Pulmonary Artery surgery. Thank you to all of you who have shown your love and support for Grace. Abby and I love each and every one of you can’t believe just how kind people are with their words and prayers. Thank you all very much.