She’s Back Baby

May the 4th be with you, 2022 | EP. 9 – She’s Back Baby

Much like Michael Jordan in the late 90’s when he left the Chicago Bulls (supposedly on his own accord) to pursue a horrendous, short-sighted, baseball career only to make a comeback with the Bulls; SHE IS BACK BABY! #DAAABULLS – The only difference is that she is not coming back as #45, but instead, #1 in our hearts! Always has been, always will be! Grace, post having, for lack of better terminology, a ‘virus’, has been seeing her best vitals and stats to date! Hmmm? Take a moment to pause and re-read that previous sentence. I did not make a mistake: “GRACE… HAS BEEN SEEING HER BEST VITALS AND STATS TO DATE!”. I find that very interesting. You know, because… well the hospital clearly told us Grace has a ‘viral infection’ and her surgery had to be pushed back a… FULL MONTH [I shouted in frustration].

Like, Really?! It also doesn’t help when you hear that your surgeon, that is going to be performing the heart surgery, is out of the country. By all means, I don’t care what people do for a vacation or where they go, but if I find out that because the surgeon left the country and the hospital has some sort of policy in place that stipulates surgeons have to quarantine for a certain amount of time. Well then, I am going to be pretty mad. Not mad at the fact Abby and I, who tested negative, got kicked out of the Ronald McDonald House. Not mad at the fact that Abby and I, who tested negative, now have to be quarantined in a room with someone who tested positive (apparently). Not mad at the fact that Abby and I, who tested negative, can’t do laundry at the hospital anymore. Not mad at the fact that Abby and I, who tested negative, can’t even have the hospital food brought to our room anymore while it sits down at the nurse’s station; where it sits for an extra 45 mins and finally reaches our room at a temperature that is slightly above freezing. Not mad at the fact that Abby and I, who tested negative, now will have to pay for another month at the hospital, while we figure out how what we do with our jobs to accommodate Abby’s maternity leave coming to an end by the time Grace’s surgery happens.

Sorry, please bear with me as I go on a tangent and vent a little bit here…

NOPE! None of the above reasons are why I am a little heated. Although, all very valid reasons if I do say so myself. Instead, I am very disappointed in the hospital because the longer this surgery is postponed, the harder it will be for the development of Grace post-surgery. This is what it is all about. It’s all about Grace and giving her the best quality of life. I’m her dad and will do everything in my willpower to make sure she gets the best quality of life. I am disappointed that the hospital refused to do another viral test directly after her initial results (which, my wife and I asked for several times). I am disappointed in the hospital because they were very forthcoming in the beginning about the importance of having the first surgery (Norwood Operation) as soon as possible for developmental purposes. The hospital has seemingly contracted amnesia and is now telling us that it is ok if the surgery is delayed and that development will not have any significant change by delaying the operation another month (which is the 2nd time it’s been delayed – over 2 months altogether).

I am so disappointed that I physically told one of the doctors: “We want another viral test done immediately. Heck, at least tell us you will do another test, leave the room, don’t do a darn thing, come back to the room in a couple of hours, and blatantly lie to our face and say Grace had a positive test again. That would be better than just telling us you can’t do another test.” #BOGUS. At least then we would feel that this situation was a little more serious. But come on people, wake up. Does the phrase; “actions speak louder than words” ring a bell? Grace is the best she has been yet. Even crazier, it wasn’t even 12 hours, post her viral diagnosis, Grace was doing her best. As of today, May 4th, 2022; Grace has been doing amazing, growing, and getting stronger since that initial viral analysis (about 11 days now since the infamous viral was first mentioned). So, I don’t know, just needed to get that off my chest and rant a little bit. If nothing else, writing out my frustrations helps me (selfishly) to move on from the situation and put it behind me. Sorry to all our readers out there, I truly try not to write about things that may have political ties. Let’s just move on to another subject.

This concludes my tangent rant and venting therapy session. Kudos to those of you who are still reading at this point.

Now that we have established Grace has been doing great. We can really jump into the fun and exciting things that Abby and I have been experiencing with Grace’s growth. For starters, we are coming up on 7 weeks now with Grace having graced us with her gracing presence. She is tracking with her eyes and moving a lot. So much fun, when she is awake. Actually, a lot of fun when she is asleep too, but slightly more fun when she is awake because she is starting to smile. Dad likes to tickle baby Grace right under her itty bitty chin. Every time, Grace does a little smirk / slight smile. #PRESH. Also, I’m pretty sure she just discovered that she has a tongue. Let’s just say, if you were ever curious how many licks it takes to get to the center of a Tootsie Pop, Grace can get that answer for you pretty quickly. It’s in. It’s out. It’s in. It’s out. Grace, just make a decision, will you?! Is it in or is it out? — Prepare yourself because here comes a sexist remark: that’s how I know she’s a girl, she can’t make a decision. — I also feel like I need to keep her away from the ski slopes for a while.

Grace has also been finding her voice a little more. Now, I’m not saying Grace whines a lot or anything, I’m just saying she is starting to make more random noises. It’s actually pretty tough for Grace to make noises, because she has a feeding tube going through her nose, down through her esophagus, but it is still really really really really really cute when she makes noises. She’s so sweet.

Ahhh… CUTENESS OVERLOAD. I can’t take it anymore. Love this little girl of ours. Grace, you are so much fun and bring so much joy to mom and dad. We can’t wait to bring you home. Real quick though, pulling daddy’s chest hair, kind of hurts a little bit. You’re getting too strong. Whatever! I don’t mind. You do you, baby girl.

One thing I enjoy doing is taking all of her stuffed animals (Sorry in advance, I don’t currently have a picture of all her stuffed animals. Maybe next post.) and placing the stuffed animals around her bed and acting like we are in the VIP section of a super-elite night club. I’ll turn on some music. Lately, it’s been SUM 41, Tenacious D, John Mayer, Ben Folds, Linkin Park, DJ Tiesto, Marshmello, and Martin Garrix. I don’t turn the music on too loudly. I don’t want Grace to develop too much rage in her life at this moment in time. While the music is playing, we will do physical therapy. I’ll move her arms and her legs. I’ll get her on her tummy for some tummy time. I’ll sit her up and do some crunches with her. Gotta get that core strength, you know?! Prior to doing her workouts, I’ll give a shout-out to all of her stuffed animals, just so Grace can associate the mumbles and ramblings of her weird dad and get connected with my voice. Really, I think I just like hearing myself speak. It’s actually pretty entertaining for Grace when I give a shout-out to our new stuffed animal friends. #OneLove

Actually, you know what? Pardon me while I give a brief shout-out to some notable stuffed animals at this moment in time.

• Little Victor – Teddy Bear 1 – VIP Room Personal Security Guard – Upper left of bed
• Stryker – Teddy Bear 2 – VIP Room Personal Security Guard – Upper right of bed
• Mr. Elephant – Fuzzy Elephant – VIP Room Front Door Bouncer – Upper center of bed
• Baa-Baa White Sheep – Small Fuzzy Sheep – VIP Room Front Door ‘Name on List’ Checker – Upper center of bed
• Mr. Lion – Fuzzy Lion Head Hand Toy – VIP Room Back Door Bouncer – Lower left of bed
• Ms. Unicorn – Unicorn Binky – VIP Room Guest – Left side of Grace
• Mr. Kermit – Frog Binky – VIP Room Guest – Right side of Grace
• Peter Rabbit & Peter Rabbit Jr. – Fuzzy Stuffed Rabbits – Night Club Patrons Not Allowed in VIP Room so that The VIP Attendees Feel Like They are More Special – Bottom Right of bed furthest away from Grace
• Honorable Mention (Coming Soon): Mr. Koala – Koala Binky – VIP Room Guest – Location: TBD

Look, I don’t want to brag or anything, but Grace and I roll pretty hard these days with a pretty rambunctious crew. We are bad to the bone. Honestly, we are the talk of the whole 11th floor at Mott Children’s Hospital. So we got that going for us. Which is pretty cool.

[ Brace yourself with this next story. If you don’t want to hear about diaper blowouts please feel free to skip past these next couple paragraphs ]

Something that isn’t cool is Grace and her diaper blowouts. Holy smokes! Dad had the opportunity and the pleasure (speaking sarcastically) of changing a blowout. As soon as I ripped that diaper open, the smell had me tearing up and almost on my knees. When I finally came to my senses and regained my balance, I began going to work only to have Grace streamline more stankiness across the bed. It nearly hit my hand. Fortunately, it just missed me. I felt like the matrix dodging bullets. I step back up to the plate after that and again, here comes more stankiness. Diaper changes are like a battlefield. Shots coming from every which direction. I’m getting discombobulated. My wife is on the other side of the battlefield, nonchalantly breast pumping. I’m yelling: “HONEY, I need you, get over here, things are getting crazy.” “Put the pump down, this is a biohazard emergency and I don’t know what the heck to do.” Honestly though, for some of you baby veterans out there, what is the protocol for these sneak attacks? Leave a comment on Grace Elizabeth Heart Warrior Facebook Page Post below:

Ok… Ok… let’s calm down here and collect ourselves a little bit. Those last few sentences were pretty fast-paced and action-oriented weren’t they?! Well, you might think the buck stops there. It doesn’t. This little girl is like the energizer bunny. She just keeps going and going and going. 30 seconds go bye from the last stank attack. Surely she is done. Right?! WRONG! I have a new diaper underneath her and just starting to wrap it around her and I must have pressed the wrong button because all of a sudden here comes the waterworks. This time, dad was unable to avoid this very clever attack. I can’t just yank my hand away. You have to keep in mind, that Grace is hooked up to a lot of very important cords and lines. One false move could have some pretty detrimental side effects. So Dad just calmly and slowly moved his hand, taking it like a champ. At this point, this was sneak attack #3. Some say the third time is the charm. Not Grace. After I washed my hands, I came back to finish up the job. Diaper changing is no small task. I treat a diaper change like I do my full-time job mantra: “All or Nothing, there is no in-between”. I started this job, and by golly, I’m going to finish this job one way or another. No matter how many hits I take, I’m going to keep getting back up until SUCCESS! Easier said than done because Grace, for a 4th and final time decided to sneak attack again with another round of stankiness. This time her bed sheet took the blunt force and had to be replaced.

All-in-all, a simple 30-second job, turned into 14+ minutes. 4 sneak attacks. 2 changing pads. 3 diapers. 11 butt wipes. 2 hand washings. 1 very distraught father. 1 happy baby.

Side note: No stuffed animals were harmed in the making of this dirty diaper(s) change

[ For those of you who decided to skip the diaper changing blowout. You can now reconnect with the blog post following this statement ]

Being cooped up in a single room for days on end, it’s pretty easy to get bored. My wife and I certainly find ways to entertain ourselves with Grace. However, my favorite thing to do is just hold Grace in my arms. It’s a very delicate process to bring Grace from bed over to the reclining chair in the room. One thing, in particular, is her IV line for Prostaglandin (not sure how you spell the drug name so don’t throw shade at me — oh never mind, auto-correct made it right for me. All good), but that drug goes through an IV to Grace’s heart that actually enters through Grace’s right knee and the IV line is sutured to her knee for extra hold with a lot of different medical tapes over it. If that IV gets pulled out too far, the drug will not hit Grace’s heart. That drug is very important as it is keeping Grace’s heart alive essentially by building tissue in her heart. You know, hold on, let me research what that drug actually does real quick.

So yeah, the doctors have emphasized A LOT about the importance of that line. If it comes out, Grace has a matter of minutes, or maybe less than that to get it back in properly, or else the outcome would not be good at all. Unfortunately, over these past few weeks and all the movement of Grace, her Prostaglandin IV line has actually started getting loose a little bit. Now, my wife and I pretty much freak out at the thought of moving her lines to hold her in our arms. That kind of stinks to have that on the back of our minds, in addition to everything else going on with Grace’s situation. So if you are reading this, and feel inspired to say a quick prayer about Grace’s Prostaglandin IV line that it stays in place, please take a moment to pause right now and pray. Thank you in advance for your prayers and support.

Please don’t worry though, because this past week at the hospital, we had a superhero day. Grace, really wanted to participate, but she isn’t quite big enough for her superhero costume. She is very strong, just not big enough quite yet. But when it comes to Grace, what our baby girl wants, our baby girl gets. So we thought we would let her try on part of her superhero costume anyway. Ehhhh, at least we tried.

Lastly, I want to give a big shoutout to my Mom and Dad. This past weekend, Abby and I were able to get out of the room for a little bit for a field trip. We had to check with the principal at the hospital and make sure our parents signed our permission slips before we go [he said jokingly with sarcasm], but we were successful in being able to leave the hospital for a little bit to grab a late lunch with my mom (aka Grandma – GiGi – Cindy) and dad (aka Grandpa – Mark). We went to a pretty cool restaurant called: Zingermans Roadhouse – Ann Arbor, MI. Pretty sure we all got their chicken mac n cheese. We enjoyed the experience and food. Definitely hit up Zingermans next time you visit Ann Arbor, Mi. Anyways, it was a nice treat to see family. Still, no one is allowed to visit baby Grace, which is always heartbreaking. Nonetheless, it was great seeing my mom and dad. Thank you grandma and grandpa for coming to see us. Also, I want to thank all of our family members for their behind-the-scenes support and efforts while Abby, Grace, and I are at the hospital. Even though Abby and I aren’t the greatest communicators, we truly do appreciate all of the support we have received and want to say thank you to our immediate family Moms, Dads, and Siblings. Thank you for all of your support and love. We love all of you very much. Thank you.

After the weekend was over, dad got to head home to the new house for a couple of days. I started organizing Gracie’s room a little bit. We are going to do a nautical/beach/lake/surf theme for Gracie’s room. It wasn’t really a joint decision on the room theme. Dad pretty much knew it was going to be nautical from the moment I found out we were pregnant. Thanks, babe for letting me have my way. This is just the start/work in progress, but here is a sneak peek of what is to come.

Well, that pretty much rounds out everything I can think of for this post. If I happened to have forgotten anything, I’m sure my wife will let me know. #NotABackhandRemark #StraightFactsNoPrinter. If I did forget, I’ll just add it to Gracies’ next post.

Oohh.. omg… how could I almost forget. I almost died laughing this past week when My wife made this awful deep bellow or Grunt, that sounded like a robot with a low voice. While at the same time, falling back to the floor on her butt like the old lady from those “Help I’ve Fallen and Can’t Get Up” commercials. Abby squatted down trying to load something or grab something out of the mini-fridge in the room and hit her head on the top of the fridge. No one was harmed but the manly, yet deep tone, noise she made as she was falling backward was hilarious. Just wanted to share that because I’m never going to let that one down. If you see me in person, ask about it, and I’ll reenact the scene with pitch-perfect, drama-filled, accuracy.

Ok, now I am done. Thank you all for following Gracie’s World Heart Warrior Journey. As always, we love you all very much and are very thankful for each and every one of you who has helped support us through our journey.

THANK YOU.

Sincerely,

T-wiggles