$0.00
Just GRACE-ing us with her presence
May 21th, 2022 | EP. 11 – Just Grace-ing us with her presence
Note in advance: There weren’t a whole lot of changes over the week 5/13/2022 through 5/21/2022. This blog post will capture a few details about grace but mostly it’s a blog with a lot of rants and jargon from Tommy. So if you are looking for more direct details about Grace’s status, please stay tuned for our next blog coming shortly, which will be a video blog about Grace’s statuses and approvements.
Welcome back Gracies Gang. Each and every one of you who have signed up for Gracies World blog posts, and even those who haven’t and are just reading this for the first time; know that Abby, Grace, and I consider you a member of the Gracie Gang Army. If you don’t want to be a member of the Gracie Gang Army, then… well…. consider yourself ‘conscripted’ by the great magistrate; Sir Thomas Taylor. SO now you have to be a member of Gracies Gang Army by order of LAW! Unless you are a Purdue grad. It was a tough decision, but ultimately a unanimous vote to keep all Purdue grads out of the Gracie Gang Army. Something about Cootie Shots and circles and dots. I don’t know. I don’t make the rules. I just enforce them. Haha, I’m just kidding. Purdue Grads. Welcome aboard.
In all reality though… this is Gracies World! A world where dad is wrapped around her finger. What my baby wants… MY BABY GETS! When she says jump; I say ‘HOW HIGH?’. Better watch out Gracie Gang Army, You’re in Gracies World now. Like a black hole amongst a vast solar system, the moment you meet this fine specimen of a young, yet mature, newborn baby girl and hold her for the first time while locking eyes; you are absolutely done for; the gravitational pull is just way too strong. There is no escaping the reality of your fate that you will, indeed, forever be wrapped around Gracie’s finger yourself. Don’t say I didn’t warn you.
Well, anyway, those of you who are still here reading (a post with an intensely worded introduction where an IU grad fired shots at Purdue grads in a light-hearted attempt of being a cool dad in front of my daughter by acting tough and not allowing a group of individuals to be a part of Gracies Gang Army with the full understanding that I’m completely being a Keyboard Warrior and that I would never say something like that in person) I wanted to share an explanation of the feature photo above. My wife made the observation a couple of days ago; when Grace is wrapped up the way she is in the photo above, she looks kind of homeless. Kind of like she should have her hands grasped around a styrofoam cup with the words: “SPARE CHANGE” written on the side of the cup while Grace shakes it up and down so the coins (that she conveniently placed in the cup before hitting the streets) makes a loud jingle noise to elicit attention towards said cup that says: “SPARE CHANGE”. I imagine Grace would be a little more traditional with her go-to homeless phrase: “Spare some change for the homeless, God Bless”. Quick, straight to the point, and courteous. Speaking of homeless… I see, now more than ever, more and more homeless people are on the streets (which in all honesty is sad for sure). I also notice, that fewer and fewer people give change (probably because our Government has made it practically impossible to have any spare change/cash on hand these days).
[ speaking of homelessness, I highly encourage each and every one of you to read the following book (click to order today):
Michael Shellenberger, the author of San Fransicko, also happens to be running for Governor of California. Fun fact, I (Tommy) am related to Michael Shellenberger, as he happens to be my Dad’s cousin. I’m pretty proud of that fact. Anyways, his book ‘San Fransicko‘ talks about the homeless encampments in California. He also gives his thoughts and insight through years of research on how to help solve this progressive California issue strategically and efficiently. ]
Back to my previous homeless rant before I so quickly got distracted. Like, who are the people rolling down the windows of their car, where the person asking for spare change is standing at a traffic light in the middle of a major intersection with oncoming traffic from all angles expecting someone to give them free money? All I’m thinking is two things at that moment in time… 1.) Whatever you do, do not make direct eye contact with the person asking for change. better yet, just keep starring straightforward…and 2.) When is the red light going to turn green? Unfortunately, that is just the sad reality. Isn’t it kind of hypocritical of me to say all of that and here I am trying to raise donations for Grace Elizabeth Heart Warrior Foundation? Isn’t that the same thing as having a change cup, just in digital form? I digress. Let’s move on, all this homeless talk is really ‘bumming‘ me out. hahaha – Whew, and the dad jokes are on Fleek today baby! #ZIIINGG
Alright. Let me catch my breath real quick. While I do that, check out this interesting intro video I’m working on to be what might become the intro to a Gracies World VLOG series??? Maybe, just maybe.
We made it through another successful week. For the most part. Grace’s vitals continue to be really strong. So much so, that Grace is no longer on supported oxygen but instead, breathing all on her own. Mom and Dad are just tickled pink. Tickled we are… because Grace, even being off oxygen, is stronger than she was while on oxygen. #winning.
However, there has been something that keeps recurring from time to time. Children with HLHS tend to have some stomach lining issues which can turn to infection and/or cause them to have blood in their stool sometimes. Unfortunately, Grace has had this happen a couple of times. The last time she had blood in her stool was last week. That being said, the doctors decided to take her off feeds for a little bit to help her stomach reset. Now, Grace has been feeding for the past 3, maybe 4, days. The amount of milk she is getting is nowhere near what she was getting previously (75ml of milk an hour), compared to now (25ml of milk an hour). I suppose the next logical question you are thinking about now is: how much does she weigh? Has she gained any weight? Lost any weight? — The answer to all 3 of those questions is: “YES!”.
Yes, she had gained weight previously. She was actually at about 8lbs 15 oz before they stopped her feeds. Yes, she has lost weight. Due to the stoppage of her feeds. Finally, how much does she weigh? The answer is Yes. Most of the time, the hospital scale can’t get a read because Grace is tossing and turning every time they put her on the scale. What can I say? She’s a mover and a shaker, just like her Daddy. That a girl baby Grace. On the reals though, Grace is now back in the high 7lbs / low 8lbs region. #StraightFactsNoPrinter.
Well, technically, a printer was involved this last week while dad was at work. As you all know, or don’t know depending if you’ve read my previous blog posts, dad has been going back to work Monday through Thursday afternoon. To be honest, at first, it was kind of a relief to go back to work after Grace was born because I was scared. Scared of being helpless and not knowing. That stressed me out a lot. I mean a lot a lot. I didn’t really want to deal with the real-life situation and being around the hospital day in and day out just left me kind of bitter. So I used work as a kind of an escape from reality.
It took me a couple of days but I finally got over my little self-pity party. Moving forward to today, all I want to do is spend all day every day with Grace as she brings so much joy, love, and (you might find this surprising) laughter into my life. The way she stares at you sometimes and her facial expressions. It is really funny. Unfortunately, though, bills do need to be paid. “HEY SIRI…. What are responsibilities?” Now, if we can only get Grace home to our house. I’m ready to throw stuff around the house with her and build blanket forts while watching Saturday morning cartoons. Most of all, I’m ready to take her to the lake and ride my tandem bike with Abby and add a little extra cart with wheels that can connect to the back end of our tandem so Grace can ride along as well. Also can’t wait to take Grace on the boat. Super pumped.
Until then, I can at least reflect on photos from this past week. Here, let me share some with all of you as well. ***Warning, viewing photos of Grace may cause Cuteness Overload***
Ok, that’s enough cuteness for one day. Don’t want to spoil our future appetites.
I do have 2 more pictures for you though. The first is a picture of our quaint Ronald McDonald room before we demolished it with all of our clothes and other junk. Also, the second picture is a blue sweatshirt with a hole in it. Why is this interesting? Abby had just bought the blue sweatshirt and we totally missed this gaping hole. In need of a seamstress. Is anyone here any good with sewing and willing to help a brother out? It is a really cool Michigan sweatshirt. I need to be cautious and very specific on how I word this next phrase: I’m a fan of the color of blue that was chosen for the sweatshirt (not to be confused with: “I am a fan of the blue team”). Would love to see this sweatshirt get a second chance at life.
Welp, I do believe this concludes my blog time. Much love to all of our Gracie Gang Army members and take care. Until we meet again, I shall leave you all with the old Arabic adage that says:
“As-salamu alaykum“
(Ahh-Suhh-laa-muh-lake-um)
Translated this means: “Peace Be Upon You”
“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.” – Isaiah 43:2
Sincerely,
-T.Daddy and the VIP’s