Grace Happy Place Smiley Face

May 14th, 2022 | EP. 10 – Grace Happy Place Smiley Face

Today, we are coming at you with a 2-part series. The first half of this blog features Abby (Mom) giving an update about the status of Grace. The second half of this blog features Tommy (Dad) just bringing, as promised, pictures of all of Gracies stuffed VIP animals, as well as, pictures of Mom and Grace. There may be some random things as well. Thank you all for your love, kindness, and prayers.

Really quick, before we jump into this week’s blog, a couple of announcements. First, thank you to all who have donated. Abby and I are still on the hunt to hit a goal of ours. If you would, and feel inspired to do so, please share our GoFundMe below. This will help go a long way as Baby Grace still has at least 3 heart surgeries ahead of her.

Additionally, Grace Elizabeth Heart Warrior Foundation is now offering “GRACIES GANG” wristbands. Grace Elizabeth Heart Warrior Foundation is now taking pre-orders. All profits from every wristband sold will go towards the Grace Elizabeth Heart Warrior Foundation. We are asking $5 for each band with the option to add a donation with the order. We have ordered a limited supply and expect them to sell out pretty quickly. If you are interested in a unique way to show your support for Grace Elizabeth, pre-order your “GRACIES GANG” band today. Wristbands will be ready to ship by the end of May 2022.

This concludes our weekly announcement. Now on to Gracies World Blog Post. Thank you in advance for all of your support.

Grace has had a BUSY week!

It started early Tuesday morning with an Atrial Septoplasty. The procedure was to further open up the septum between the two chambers of the heart. They enter in the groin and go all the way up to the heart with a marble-sized “balloon” and make a few passes between the chambers to widen it. This needed to happen because Gracie’s atrial septal was shrinking due to her surgery date being pushed back. The doctor came into Gracie’s room on Monday to explain the outcome they were striving for, all of the potential risks (talk about SCARY, they were many!), and ultimately get Mom’s permission and signature to perform the procedure. Dad was able to come up Monday night and be at the hospital for the procedure. They explained Gracie would be sedated and the procedure would take a few hours, and then she would likely sleep ALL day due to the anesthesia. They said she would likely need to go back down to the ICU for a few days; as this typically makes babies very sick as it will increase their blood flow, which she could have a hard time getting used to. Long story short, Gracie was back in the room within an hour and did not sleep much the entire day. She did NOT need to go to the ICU, and has responded so well her oxygen has been slowly weaned from 4 liters to 1 liter. Gracie girl is SO strong!

The procedure went SO well, but we, unfortunately, found out the PICC line they use to draw blood from stopped working in the process. That meant it would need to be rewired and restitched in her leg. On Wednesday, she had to get an IV so they could transfer her main heart medicine, prostaglandins, as they PICC line would take at least 15 minutes to replace, and that medicine can not be out of Gracie’s body for that long. After they poked Gracie a few times, they finally got a working IV. Then the team of doctors were able to rewire Gracie’s PICC for a third time.

After they rewired the PICC, the X-Ray team came to ensure the line was in the correct place. The X-Ray showed Gracie had a small blood clot in her leg. They told us clots were unfortunately pretty common in these medically complex kiddos. The solution to her healing, though, is getting two blood thinner shots a day; which is very painful for little Gracie, and very hard for Mom and Dad to watch and see our sweet girl crying in pain.

Friday morning, Gracie had some blood in her stool. The team of doctors immediately put her NPO (nothing by mouth) while they ordered an X-Ray of her abdomen. Blood while your on blood thinners can be a pretty serious issue, especially for little ones. Thankfully, the X-Ray looked to be normal; but the doctors still have Gracie NPO for 48 hours, taking antibiotics, and getting x-rays every 12 hours as they like to be VERY careful in these situations. We are writing this Saturday, May 14th evening. Gracie is very hungry and angry (I am sure we all would be with no food!) so we are hoping she gets the green light to eat tomorrow morning!

Sincerely,
Abby

Alright, Dad here, coming at you as promised with pictures of Grace’s VIP room stuffed animal pictures. Some of the stuffed animals had the day off, so I was unable to get their picture. They may have had the day off and gone to the spa (aka washer and dryer) to get some rest and relaxation so they could be refreshed for the start of the coming week. Isn’t that how it always goes though? You try to get a company-wide picture and there is always 1 or 2 that can’t make it for some reason. Classic. Anyways here are some of Gracie’s honorable VIP room mentions.

However, Grace’s favorite VIP attendee has to be her mom. Grace simply can’t get enough of mom snuggles. It’s no coincidence that when mom is holding Grace, Grace’s vitals jump up to really strong and positive vital numbers. Grace love’s being held by her mom.

You may be asking, what do mom and dad do when we aren’t holding grace? Great question, because most of the time we don’t really know what we are going to do. Fortunately, this week, we had some decent weather and mom and dad were able to get outside for a couple of walks. Ok, before I say what I am about to say, I just want people to know that this next sentence is exactly how I know I am no longer in my youth and that I’m getting older. The hospital has planted some really nice flowers and they are very bright and vibrant. — Now does that sound like something a young adolescent would say? No?! Exactly. I’m officially a dad with comments like that.

Speaking of being a dad… When does a DAD JOKE, become a DAD JOKE??

Answer: When it becomes AP’PARENT‘

Anyways, here are some pictures of the beautiful flowers. P.s. I don’t know my flower makes/types so don’t ask me what kind of flowers they are. Thank you in advance for your understanding.

Also, we just came off of Mother’s Day Weekend. So seeing these flowers was quite the treat. Helped make it feel more like Mother’s Day. My wife also received Flowers from family members. So that’s pretty cool. Have a look. Don’t mind all the mess and chaos behind the flowers. Those are just random elixirs, schematics, and drawing plans for Grace and me to take over the world. Muah ha ha ha haaaa!

ALERT BIG NEWS SECTION

This week, we also got some really great news with regards to visitation rights with Grace. We are no longer limited to 1 person being able to visit. The hospital has lifted the rule of only 1 person, outside of mom and dad, being able to visit. Previously, once you had 1 person listed, you could not change who that person was and it could only be that person who visits, due to the hospital’s rules and policy. What a terrible rule. Anyways, we are now allowed to have 4 visitors at a time. Additionally, it no longer has to be the same 4 visitors, it can be any 4 visitors at a time. This means, there can be no more than 4 people in the room, and when those 4 visitors leave, we can have a whole new 4 visitors. This is very exciting because now all of our family members can come and visit Grace. They can hold her and give her all the love she deserves. I, for one, am very pumped about this. Oh, and Grace has been cleared by the doctors that she can have visitors now that she has been quarantined with her cold for 20 days (🤦‍♂️ SMH). Perfect timing. Expect the hospital to be overflowing with Gracies Gang this coming week and weekend. Super excited about that. I know both my family and Abby’s family are super psyched and antsy to come to see baby Grace. I mean, just look at her, how could you not be excited to hold the next top model for Baby Gap and/or GQ.

Real quick, I understand I am kind of all over the place with my comments, but that is honestly how this previous week went. Just kind of sporadic. Actually… come to think of it… ‘SPORADIC’… that’s a great word to use for Grace Elizabeth. This little girl is getting to be quite the active little girl. She’s been moving her arms and legs more and more every day. She tracks with her eyes so well. She also turns her head from one side to the other very well. Perhaps, the biggest thing she is really good at is, PULLING HER FEEDING & OXYGEN TUBES OUT OF HER NOSE SPORADICALLY! I’m sure it’s really annoying having that always in her nose, but she doesn’t quite have, nor is she capable of, the understanding of the importance of those tubes. Soooooooo dad had to bring some gloves/mittens for Grace to help keep her from pulling out her tubes. Grace, we love you! This is for your own good. Let this be your first example of the phrase: “Parents Know Best”! That’s right. And don’t you forget it. Especially when it comes to dating boys. Your dad, whether you believe it or not, knows best. So just keep that in mind.

Lastly, before I end this week’s blog post (which is like 8 days late technically), I just want to say how proud I am of Grace for her strength and resilience. Keep being strong Grace. Mom and Dad love you more and more every day. It’s hard to believe that we love her so much today, how could we love her anymore tomorrow? But it’s true, with each passing day, our love for baby Grace grows stronger and stronger. It’s such a cool feeling. Thank you to everyone who has helped us in our journey so that Abby and I can focus on being Christ-centered loving parents first and enjoy these moments at hand while we put our worries behind us. Thank you all for the prayers. Thank you so much.

Sincerely,
T-Bone