Back To The Basics

October 23rd, 2022 | EP. 17 – Back To The Basics

Hello again. Welcome back to the Gracies World Blog series where we frequently infrequently give updates on everyone’s favorite ‘G’ and our go-to girl: Grace Elizabeth. All jokes aside, we try to keep up with our blog at least once a month. Lately, it’s been hard to put cognitive literate words from mind to blog given our current circumstances. Mentally, mom and dad are exhausted. Previously, after we came home from our 99-day stay with her ‘Norwood Operation’, all we wanted to do was spend as much time with Grace while we had her in our new home; knowing that only a few short months away she would be coming back to Ann Arbor C.S. Mott Children’s Hospital for her Hemi-Fontan surgery. Given all that, we hope you can forgive us for the lack of posts. Although – for any of you who are new and/or are unaware that we have a Facebook page – We do, indeed, have a Facebook Page. You can find our Facebook page by searching: Grace Elizabeth Heart Warrior Foundation – or – you can click the button below.

Please feel free to drop a like and a follow. We do tend to update more frequently on our Facebook page due to the ease of accessibility. Plus, dad (aka ME – aka Tommy – aka TZ – aka Tommy Pickles – aka YourGoToGuy – aka smellyroadapples_onthe_road_1@hotmail.com) is kind of a blog post and website SEO perfectionist. Creating a blog isn’t just words on a page, it’s important that the page can be found by Google. We then edit all our photos and videos to be the appropriate size and the right file format. Once said photos and videos are uploaded to the backend of the website. We then update the alt-tags, meta description for the post and photos, as well as, the focus keyword phrase, and proper H1, H2, and H3 title tags. We, then, make sure that the blog has outbound links to other sites of similar and/or relevant context, as well as, significant inbound links from valid and secure sources (websites). Following that, we want to make sure the email that goes out and updates our subscribers that a new blog has been posted is accurate and easy to view/read. Lastly, before anything gets sent, dad makes sure mom reads it first. Grammatically, mom tends to have a better eye than dad does 9 times out of 10. However, I do use the plugin: “Grammarly” – a free online writing tool that helps with spelling and punctuation. Highly recommend you all use this plugin if you aren’t already. (Note*: This is not a paid promotion.)

What the heck is going on? Is this a post about the latest updates on Grace or is dad trying to acquire more clients for his marketing agency? I suppose, now that I mention it if any of you are looking to hire a marketing agency with over 10+ years of experience with very competitive pricing, my services are available at Tacktical Marketing. If your interest is peaked, check out my services and previous works and case studies by visiting: https://tackticalmarketing.com/. Feel free to reach out to me by filling out the contact form on the site, or connect with me here on Grace Elizabeth.

Alright… Alright… enough shenanigans. Time to get serious. I think we were talking about how frequently we post updates about Grace. We wish were more active in keeping everyone in the loop about our little heart warrior, sometimes we can’t because we just don’t have much to update. Which is kind of weird to say as I sit here and say it in my head a couple of times. I mean my goodness, Grace has been through ‘5’ open heart surgeries in the first 7 months of her life.

There is always something changing and evolving it seems. Truthfully, speaking for myself, some of the things I might consider minor with Grace might be considered bigger in the eyes of others. I don’t know, that’s just me thinking out loud. All I really know is that Grace is pretty freaking awesome and that is ok by me. There are other times when Abby and I are just worn out and just don’t feel like talking. Physically and mentally, we just get worn out. Maybe I shouldn’t say worn out because I don’t think it conveys the right message. Perhaps a better phrase might be: ‘we get weak’. I say that because I don’t care how weak I become, I’ll never be worn out from spending time with my daughter. Grace makes me a proud dad. She is really strong and very resilient, and VERY PRETTY.

Grace one day, when you read this, just know that with each and every beauty mark (or as the medical field would say: scar) dad thought: “My goodness, just when I think Grace couldn’t be any more beautiful, here you are with an arrogant smile on your face like you know you’re strong and you’re looking at me then, —“BAM” — you bat those little eyelashes at me and of course, I melt faster than a Hershey’s bar that has one bite out of and got left in the back seat up by the head rest and is visible from the back window in a dark navy blue 1990′ Chevy Caprice with tan cloth seats (not the good cloth seats either, the cloth seats that smell all musty with some of the hideous orangish-yellow macaroni colored foam showing and makes the car all hot and stuffy kind of cloth), all the windows are up, with silver trim, the kind of silver trim that is absolute scorched earth when you first get in the car and your arm accidentally hits the silver trim because you got careless and forgot how hot it is and yet it happens every time, with a half drank 1-liter mountain dew bottle in the cup holder on a hot summer day in Nevada. Now that’s hot. I wouldn’t want to be a Hershey’s bar in that car. That sounds hot just writing it. Yikes. Anyways, what I’m trying to say is, you make my heart melt. I think each and every one of your beauty marks is exactly that, Beautiful.

Sheesh! Get to the good stuff already. Give the people what they truly want to hear and why they’re here…

Grace Elizabeth Update – 10.22.2022

I believe the last post we finished off by saying Grace had to go back and redo her Hemi-Fontan surgery (this would be the surgeon’s second attempt at doing the Hemi-Fontan) because of some obstructions in her arteries. Grace did well during the second Hemi-Fontan surgery. As time progressed over the next couple of days she wasn’t getting good blood oxygen to her lungs. So they did a couple of echo-cardiograms, chest x-rays and various other tests to try and figure out why. Turns out one of her pulmonary arteries wasn’t having good blood flow. In particular, the left pulmonary artery. This was a bit baffling to the doctors as she had a bit of clotting in her left pulmonary artery. Grace had to have a heart catheter done to remove the clot. About a day later, she had the heart cath completed and it was a successful removal of the clot. Unfortunately, Grace still wasn’t getting good blood flow. Fast forward a couple more days and back to the cath lab for another heart cath. Grace got a ‘stent’ put in her left pulmonary artery for the second heart cath. At this point, one would think the blood flow would pick up some, but still, it wasn’t getting that great of flow. When they did another heart catheter, heart catheter #3, they saw the stent was pretty heavily clotted. Welp, back to the drawing board. There really aren’t a lot of options, because if Grace can’t get good blood flow to her left pulmonary artery, she wouldn’t have enough oxygen to adequately support her lungs without a lot of strength and energy and her having only 1 ventricle.

If Grace can’t sustain her Hemi-Fontan surgery, what do we do?

Well, the doctors feel the best course of action for Grace would be to undo her Hemi-Fontan surgery and revert back to her Norwood surgery. While reverting back to the Norwood surgery, they also replaced the stent, and they put in a ‘shunt‘ which is required for the Norwood operation. The shunt was also in with her previous Norwood, only this time, it’s a little bigger. The Norwood surgery went ok. One thing the doctors said is that the Stent and the Shunt are leaning up against each other, which they mentioned could be a concern but right now they don’t feel it is currently. So Grace is now the same as she was leading up to her first Hemi-Fontan surgery. The plan is to let Grace recover and grow (at home) for another 3 – 4 months and then come back to the hospital and try the Hemi-Fontan surgery for the third time. The thought process is that they are hoping for Grace to be bigger and stronger, and her left pulmonary artery would be bigger and stronger to allow for proper and adequate blood flow. When that time comes we can analyze it in more detail. Praying for good blood flow to her left pulmonary artery over the next couple of months.

As of today, 10-23-22 – Grace is now off of her ventilator. She also had a brain scan that came back with good news as it did not show any irregularities. Now that Grace has had her brain scan tags removed the captain has officially turned off the seat belt sign and given the command that Grace is able to roam about the cabin as she pleases. In other words, Mom and Dad can finally hold Grace. It seems like it’s been FOR-EV-VER since we last held Grace.

Holding Grace brings us a lot of joy, but it certainly isn’t easy. It’s actually a pretty lengthy process to get Grace from her ICU bed (oh, yes, we are still in the ICU bay but hopefully we can move from the 10th-floor ICU to the 11th-floor Recovery soon). It’s a lengthy process because the bedside nurse needs to have additional nurses come over to the bed. Together, the nurses hold all of Gracies IV lines, PICC lines, Drainage Tubes, Oxygen, Feed line, various body monitoring sensors, and that always annoying pulse ox (I say annoying because we have a pulse sox reader at home that we have to check daily with Grace and that stinking pulse ox can never get a good read and it just beeps at us for like 40 minutes straight. Sometimes I just want to take that beeping pulse ox machine and throw it out of a 10+ story building then hope a piano falls on top of it. AAARGGGHHHHH).

Anyways, while one nurse holds all of the lines, there is another nurse that picks up baby Grace. Then, while all of that is happening, Abby and/or I have to pull out the hospital bed from its normal position and replace it with a standard issued, fully pleather, hospital reclining chair that is truly hit or miss on comfort. Normally, if we were in the comforts of our own home, I would say (with great respect to our atmosphere) burn the chair immediately. However, when we are in the hospital and nights become days and days become nights, and mom and dad are mentally and physically worn out, I could sleep on a bed of needles just to get some much-needed rest, so in this particular instance, it’s actually pretty comfortable relative to our environment. Truthfully, who really cares about comfort features for guests? As long as the patient is comfortable and growing, I think that is what is most important. Once mom and/or dad have settled in the captain’s seat, the other parent goes and gets a pillow and a small table to hold belongings next to the seat. The nurses then gently lower Gracie into our arms where she currently just loves snuggling into our arms and pretty much sleeps the whole time. Grace knows we are holding her and she feels pretty comforted in our arms. She also likes having her arms and hands up in the air. Right now, she is slowly being weaned off her meds so she is still a little out of it. Though, she does have her alertness moments. Feels good to have Grace back in our arms. To put into perspective for you parents out there who have kids, don’t take it for granted to give your kids some love and snuggles. It’s really easy to get caught up in the game of life. Actually, I am going to transition to images and videos of Grace here shortly, so now would be a good time to pause where you are at and go give your child a big old hug, high five, fist bump, words of encouragement, and some good ‘hearted’ love! While you’re at it, Abby, Grace, and I would love to see your family. If you’re interested and willing, we would love to see family photos of all of our friends, family, and Gracie Gang Supporters. Feel free to direct message our Grace Elizabeth Facebook page with a recent photo of your family so we can share it with Grace when she gets older, to show her all the love and support she received when she was in the hospital.

GRACIE LOVES HER COUSINS, AUNTS & UNCLES

Some of you may know that 3 weeks after Grace was born, Abby’s sister, Alyssa and her husband Jake had their first child. A beautiful baby girl named Hadley. Hadley and Grace are pretty close. They’ve gotten to play together a couple times. It’s pretty surreal. I can tell they are going to be double trouble when they get older.

Additionally, some of you may also know that my brother Mike and his wife Jewelz have a son named: TIMA TZ. However, they also had their first baby girl named: Milla (mee-luh) on August 26th this year. Grace and Milla haven’t had much interaction yet, but they did get to go out on the boat together once before Grace had to keep things pretty low key before her Sept. 27th surgery. However, I’m sure they’ll be two peas in a pod when they get older.

I can’t forget about Gracie’s other aunt and uncle(s). Abby has an older sister Amanda who lives down in Cape Coral, Florida with her husband Jeff. (Side note*** Please keep Amanda, Jeff, and all Floridians in your thoughts and prayers for a quick recovery after hurricane Ian – Additionally, if you live in, near, or around Cape Coral, look up “HOOKER MARINE” website <– or –> Facebook – “https://www.facebook.com/HookerMC” – this is Jeff’s company and they specialize in: Docks, Lifts, Covers, and Seawalls. I would say they are the go-to company for any of the aforementioned services).

Lastly, and certainly not least, Abby has a younger brother Jimmy who is now an uncle of 2 beautiful baby girls. Jimmy attends Trine University (Angola, IN); on a scholarship for the football team as a QB. The kid has quite the arm. He’s not too bad of a Golfer as well, pretty competitive between myself and jimmy when it comes to golf. Jimmy, this is an open invitation to call me up, and let’s go hit links whenever you’re ready. I also want to make it known that I say that statement in hopes that my wife sees it. That way, I have some leverage. I mean, if Jimmy calls, I’m practically obligated to go right? It should excuse me of any complaints my wife may or may not have with my obsessive need to get out on the course. Pretty sure that’s how this all works [he said with a sarcastic tone]. Anyways, here’s a dope pic of jimmy with his mom after they crushed Anderson College.

MORE GRACE ELIZABETH PHOTOS & VIDEOS

The following photos and videos are of Grace amidst her time here at C.S. Mott Children’s Hospital from 9/27/2022 – to the present (10-22-2022). (Note** In the photo gallery, there may be some photos of Grace post-surgery that may or may not be uncomfortable for the viewing audience. I will make sure to put those photos at the bottom of the gallery for those of you who wish to skip past those images. I also created a button that will skip you past the graphic section and take you straight to the videos.)

Photo Gallery:

If you want to view the pictures, keep scrolling past the white space below.

This is the end of photos. For those of you that stayed to view the heart surgery photos, keep scrolling past the white space below to view videos. Just want to be mindful of those who chose not to see.

Video Gallery:

Short Time Lapse of a Typical Grace Day post-surgery (no music or sound)

7 Straight Minutes of Grace in Slow Motion – Music Credit: Stranglehold by Ted Nugent

This concludes Gracies World Blog Episode 17: Back To The Basics. Thank you to each and every one of you for your prayers, support, donations, and love. My wife and I want to sincerely from the bottom of our hearts thank each and every one of you. We wish we could do it in person (RAINCHECK???). One day we will be ready to introduce each and every one of you to Grace. For now, I’ll leave you with this video from Tim Tebow. I was inspired by this video because it touched my heart when I thought about how Grace, all though a few setbacks will have one of the greatest comebacks in history. Mom and Dad love you, Grace. Goodnight everyone.