Gracies First Christmas PT. 2 (Final)

February 20th, 2023 | EP. 19 – Gracies First Christmas PT. 2 (Final)

Welcome back to Part 2, and the final part, of Gracies First Christmas. As per usual, dad is a bit behind the ball when it comes to keeping up with blog posts. Though, not trying to make any excuses, but here is my excuse anyways… Mom and Dad have been extremely busy these past couple of weeks with Grace getting over the flu, and then shortly after that, Grace acquired the Rhino Virus – AKA – Common Cold. Grace has been battling the common cold for about a week and a half now. That being said, when Grace gets a cold, it can be, and is, a lot more severe than the average individual. As of today though, you will all be pleased to know that Grace is recovering, slowly, but surely and has maintained a pretty positive vibe through the cold season. Here, let me show you some recent pictures to get all of you caught up.

Unfortunately, because of Gracie’s status with Rhino Virus, we were scheduled to have a heart catheter performed on Grace at the end of February (Feb. 22nd – 24th) to be precise. In addition to that heart catheter, Grace was finally going to be able to have her ‘NG’ Tube (the tube that goes through her nose) removed. It was going to be replaced with a ‘G’ Tube (a tube that goes in at the side of Gracies lower part of the belly). NG Tubes are not meant to be long-term (long-term in the sense that they are only meant to be used for a couple of months). Gracie is now 11 months old and is still using an NG Tube. Additionally, switching from an NG to a G tube, means that we would be able to start trying to administer food orally. The procedure for inputting a G tube is minor invasive in comparison to many of her previous procedures, but it does still come with some risks. Ideally, having a G tube in place, Grace would not have the irritation of an NG Tube tickling the inside of her throat. This is probably the main reason she doesn’t want to take any food orally right now because it is irritating for her to swallow.

SOOOOOO…. the original plan was to do a heart catheter and the switching out of the NG tube to a G tube all on the same day, that way we didn’t have to put Grace on anesthesia two times, we would only have to do it once, which is certainly better in the long run. We still plan to do it this way, but with Grace having a confirmed Rhino Virus episode here, the protocol for Mott Children’s Hospital (mainly the anesthesia team for insurance and legal purposes) is that we have to wait 6 weeks after a confirmed viral test that has come back positive. That being said, we are now looking at: APRIL 10th, 2023 – for Grace to have her NG tube replaced and a Heart Catheter done.

I don’t want to dismiss the heart catheter by any means though. This is a very serious procedure. Honestly, in my opinion, this might be the most important procedure of Gracie’s life, as it will shape her entire future path moving forward. What I mean by that is the following.

Our heart catheter team will perform the cath. Once completed, they will release the results of the cath to all of Gracie’s medical team members across the board at Mott Children’s Hospital. All of Gracie’s specialty doctors will have a chance to review the cath results and make an assessment. This means her Cardiac Doctors, Cardiac Surgeon(s), Anesthesia team, Respiratory team, Catheter team, Lung team, all doctors related to Grace, and Pediatric Cardiologist in Kalamazoo. The findings they get from Gracie’s heart catheter results will determine 1 of 4 potential outcomes for Grace. Let me preface in advance before I list out the 4 items. Mom and dad have put our faith in God and are praying for option 1 results. We wholeheartedly believe the presence of the holy spirit will provide exactly what he has planned for our future. That being said, here are the 4 potential outcomes (in order of preference).

1. Grace is suitable to go forward with her 2nd heart surgery (she has failed this heart surgery twice so far). Now that she is bigger, we are hoping that she will be able to go forward with the 2nd heart surgery as previously planned. She gets through the 2nd heart surgery, everyone can rest a little easier as Grace will be able to be a little more flexible and enjoy the great outdoors a little more.
   
2. Grace isn’t quite big enough yet, so maybe we wait a couple more months until she is a little bigger so we can try the 2nd heart surgery at that time.
   
3. Grace does have a narrowing in her pulmonary artery. This narrowing is one of the main reasons why she had a failed 2nd surgery (twice failed). That being said, without going into too much detail, Grace may need to have a Heart Transplant.
   
4. Lastly, if she has narrowing in her pulmonary artery, how feasible would a heart transplant be? A new heart would still connect to a narrow pulmonary artery. This in itself could be a big problem as a healthy heart, which was used to pumping to a healthy pulmonary artery, would now be a healthy heart pumping to a narrow pulmonary artery. What happens to a healthy heart that once pumped to a healthy pulmonary artery, but now pumps to a narrow pulmonary artery? Well, in theory, that heart could be thrown out of rhythm, or simply just fail at a moment’s notice. The next question for the doctors would be: How far does the narrowing of Grace’s pulmonary artery go? Well, If the narrowing is too severe, the last option for Grace is that she might need to have a heart and lung transplant. A heart and lung transplant in babies drastically shortens their life span. Even though we (mom and dad) don’t want to think about it, it is important that we understand that this could potentially be an option for Grace’s future. So we need to at least be aware of it.

Being a heart warrior parent can certainly be hard at times, but it doesn’t have to be hard all of the time. Abby and I have found joy in all of Gracie’s accomplishments. No matter how small or big those accomplishments are, we have been able to reflect upon those accomplishments and really take in each and every moment with Grace. As odd as it might sound, Grace and her little itty bitty heart have been an absolute blessing for Abby and me. Well, at least for me (dad), it has certainly slowed my life down a bit. Which, for me, was certainly needed. In a world that is so fast-paced, being able to take a step back and slow down can really help one appreciate so much of what we take for granted. In this case, particularly for me (dad), I had been just go, go, go… with no stopping point. Being able to slow down, I have been able to recalibrate what truly matters in life. Good health (although I haven’t been going to the gym over the last year – this is a work in progress for me), Family, Friends, and being able to spend time alone with prayer and scripture. What more does one need? For me, I have my family (Abby & Grace). God has truly blessed me and I know that he has his hand watching over our family at this very moment and has been since before Grace was even born. Abby and I pray with Grace every night. We know that God is already at work with Grace. We are prepared for what the future holds as we know that God will never put more than what we can handle in front of us. Thank you, God, for your loving embrace and security over our family.

Now, time for a quick transition. Speaking of blessings… we mentioned we had a very unique and exciting Christmas. Welcome to Part 2 of Gracies first Christmas. As you have probably already noticed from the video linked at the beginning of this blog post, we had a very generous donation given to the Grace Elizabeth Heart Warrior Foundation over Christmas. We wanted to give a massive shoutout and THANK YOU to the US Health Advisors – Westshore Tampa, FL team members, and family members, for their generosity and kindness. Thank you to all the family members who helped make this donation possible from US Health Advisors. US Health Advisor matched team/family member donations, with a little extra added to round out this donation to even $10,000. Actually, there were a couple more donations that came in shortly after receiving the original $10,000 donation, so the true total is slightly over $10,000. What an absolute shock for our family to have received this donation.

Thank you US Health Advisors – Westshore Tampa, FL for your generous donation.

It is certainly a true blessing and really incredible to have such an amazing group of individuals, team members, family members, and company to support Grace Elizabeth and her heart journey. My wife and I were truly at a loss for words when we received the donation. I can’t emphasize this enough, from the bottom of our hearts, thank you so much for the donation. Please, all of you at US Health Advisors and your friends and family, know that your donation has made a world of difference in our lives that we will never forget. As soon as we are able to travel with Grace, we would love to come visit your office and meet each and every one of you in person. Thank you so much for the amazing gift.

Now, they have insisted that Abby and I use the donation on ourselves. Abby and I have been about what we would use this donation for in the future. I think we are leaning towards a vacation of some sort. Interesting fact for all of you out there reading, Abby and I never actually got to go on our honeymoon. We had originally planned to go to St. Lucia south of the Florida keys. Unfortunately, we made the boneheaded mistake of getting married during a COVID year and an Election year combined, which made it practically impossible for us to get updated passports in time for our planned honeymoon. We actually planned the honeymoon to take place 3 months after our wedding because we wanted Abby to have a passport with her new last name. Even then, it wasn’t enough time to get the passports updated, so we had to make the tough decision to back out of that honeymoon and try again later down the road.

I say all of that, as I have a sneaky suspicion that we will try to rekindle the originally planned honeymoon. Not 100% sure yet. I should probably talk with my wife more about this before I start making assumptions and getting myself in trouble. Happens more than I would like to admit. haha. If I’m being completely transparent – and please – if you feel compelled to send my wife and me a message on our Facebook page ( https://www.facebook.com/GraceElizabethHeartWarriorFoundation ) – letting us know your thoughts on my idea here: I WANT TO MOVE TO HAWAI’I… There… I SAID IT. I ask my wife weekly, if not daily, if we can move to Hawai’i. I used to live there for a short stint in my life before meeting Abby. I love it. I miss it. I want to raise Grace in the nice sunshine state of Hawai’i. Home is where you make it!

Anyways, no need to continue this rant. I’ve said enough on that topic. However, I can’t say enough about our supporters, friends, families, and loved ones. Thank you all so so so so much for the kindness, support, and love that you have shared with Grace and our family. Although my wife and I may not express our sentiments enough, we have read each and every one of your messages, as well as received your mailings, and witnessed your supporting donations. They have all been quite powerful and moving (in a positive way). Thank you all so much. We love each and every one of you and we can’t wait for you to meet Grace. I know Grace is excited to meet you as well. Give her about 3 minutes to look you over with her judging eyes and before you know it, she’ll have you wrapped around her finger while she makes a happy happy joy joy kick bouncing arm-waving gesture to show you that she is happy to see you. Until our next blog post. Have a happy and wonderful end to your month of February.

Sincerely,

T-Dawg Knight & Family

P.s. – If you’re reading this before March 17th…. Please join us in wishing Grace a HAPPY 1-YEAR BIRTHDAY. On March 17th of 2023, Grace will officially be a 1 year old. That is insane to think it’s been a full year already. Maybe even more insane to think that I have successfully completed 1 year under my belt of being a dad. P.s.s. – I do not own a pair of New Balance sneakers yet, so I can’t fully classify as a dad yet, but I’m sure I’ll pick up a pair of new balances in the short term future. Till then, I’ll continue my dad bod saga and horrendous dad jokes. Which by the way – Did you all hear about the dad that played Peek-a-boo with his daughter??? Yeah… he ended up in the I.C.U.! (get it… I SEE YOU). As cheesy as that is, I can’t even take credit for that one… I heard it from a friend of ours. Shoutout to Adam Craig. Love you man!