Bye Bye ICU

EP. 4 – April 6th, 2022

Grace Elizabeth is closing in on almost 1 month of her beautiful existence. Welcome to day 20 of Grace Elizabeth. I suppose the Doctors and Nurses felt like they wanted to give Grace and her parents a 20-day present. Well, kind of a present. Maybe a little extra worry added on the mom and dad side of things, but definitely some excitement for Grace. As of yesterday, Grace got to move out of ICU on the 10th floor, and up to her very own villa on the 11th floor. Her vitals, stats, and overall health have been increasing over the past couple of days and the Doctors felt comfortable in letting baby Grace bask in the finer things of life; which includes a little more freedom.

Now, Grace is still connected to some IVs (not as many as before) and is still being fed via tubes through the nostrils, but she is enjoying the view from the 11th floor a little more than the 10th. It’s not quite as loud either. Which I think is nice. Additionally, she has been opening her eyes more and more each day. According to my wife, she tends to be more alert later in the evening (That’s Greeeeaaattttt! [dad said with sarcasm]). I suppose that means dad is going to get to have a lot of late nights ahead of him.

Side note***: I (dad) have been going back into the office at work during the week, which started last week for the first half of the week. This week, I will be at the office for the first 4 days (Monday through Thursday). I will be back at the hospital Thursday evening where I do not plan to let Gracie out of my arms until Sunday evening when I head back home to prepare for another work week. Well… unless she gets a messy diaper of course, then I’ll lay her down on her bed for a quick change and then promptly have her back into my arms (pending whether or not I win the tug of war with my wife for who is going to hold Gracie). Grace is a great cuddler. I freaking love my baby girl. Also, I have changed her diaper twice so far and the learning curve from the first diaper change to the second diaper change was exponential. Heck, during the first diaper change, she sneezed and a single projectile flew out from the south side about 12 inches nearly hitting my arm, but fortunately, it whizzed right past my arm. [Dad joke time]: That really would have STUNK’. Although, by no means, would I consider myself an expert in the art of changing diapers. WHEEWWEEE, I knew babies were messy but I wasn’t prepared for exactly how messy they actually were. Keep in mind, that she is on limited food intake and mainly liquids. So if they are this bad, I can’t imagine what they are going to be like when she starts bottle feeding, or even more, eating solid foods. YIKES!

Moving forward, and keeping in mind that I am back home and working from the office, I have been reliant on my wife for updates, pictures, Facetime visits with Grace, and just comfort knowing Grace is doing ok. Big shoutout to my wife Abby for sharing opportunities to see Grace while I am away. I know it’s not easy to be attentive with a baby and try and communicate everything that is actually going on but Abby has been really good at multi-tasking with Grace and me. I just wanted to brag about my wife a little bit and give her some mad props for sharing with me as much as possible.

Grace has been getting stronger every day. As mentioned, the doctors felt comfortable enough to let Grace leave out of the ICU. Actually, truth be told, the doctors were ready to move Grace out of the ICU a couple of days ago, but they said there were no other rooms available. So we were limited on where we could go and it just worked out better to keep Grace in the ICU until something opened up. Just goes to show the magnitude and scale at which families are impacted by CHD or other complications. There are a lot of families/babies here at Mott Children’s Hospital and that kind of makes me sad to think about it. Just knowing our situation and the heartaches and struggles of not really knowing quite what to expect is hard. I can only assume that the other families and babies here are experiencing something similar as well and that just isn’t doesn’t settle right. You know what I mean?!

However, nonetheless, we are thankful to see Grace getting stronger; and the ability to be able to grow with her on her next adventure into a new environment is exciting to see. The picture at the top of this post is the first time Grace has gotten to be in an outfit. Currently, all of her outfits need to be buttoned up to allow for cord management. You know, when Abby and I first found out the sex/gender of our baby (which we believe there are only 2 genders – male and female) we were excited to pick out our baby girl’s first outfit. Actually, I was a little taken back at first, I fully anticipated, as a dad, that our first child was going to be a boy, and Abby and I already had a name picked out (William Thomas Taylor). As time went on, I kept getting more and more excited about having a girl. I’m a daddy’s girl now and Grace is a Patty’s Girl (having been born on St. Patty’s day). That’s pretty cool to think about. So anyway, we were excited to pick out Grace’s first outfit. I mean, what new parent wouldn’t be excited to have that perfect outfit of their newborn baby girl so they can share a really cute picture of their newborn girl with the world?! So we picked out Grace’s first outfit and it is Totes Adorbs (totally adorable for you old school people). Have a look…

Cindy (Grandma – aka Tommy’s mom – aka the best egg bake casserole maker – aka Lake Wawasee legend – aka the bomb dot com) offered to press it all nice and neatly for Abby and I. Cindy did just that and it turned out great. Unfortunately, I’m not sure if we will ever get to use it. I know it’s just a materialistic thing, but it sure touches our hearts because Abby and I were so pumped to see her in this outfit. We are hopeful and still would like to get some photos of Grace in her sweet little tutu skirt outfit (sorry – but not sorry – I’m a dad and only know guy things, I have no clue what girls would call this outfit). It’s small things like this that kind of eat away at Abby and I.

We start to think about other things that we might miss out on with Grace that we have seen other families around us experience. First, it’s just a dress, but what next? Grace still has about 2 more months, give or take, here at the hospital. Being a first-time dad, I only know a few things about babies. I don’t exactly know when some of the development things happen or should start taking place. For instance, Tummy Time. When do we start doing Tummy Time? It’s hard because she is in a hospital bed with cords all around her tummy and chest. I always imagine my baby crawling like a G.I. JOE army soldier on the ground while on his/her tummy. Or perhaps, the ability to move our baby from the bed to the changing table. Right now, we only get to change her on a hospital bed, and that kind of sucks. I know it’s a small thing but it’s the small things that ultimately define us as individuals. All I want is for Grace to have every opportunity as any other baby. So it’s just hard to think about stuff like that and really, I know I say this a lot, but really it just goes to show how lucky and blessed we are for those of us who are in full health.

Anyways, I suppose I’ll start wrapping this post up. All-in-all, Grace is getting stronger each day and has recovered well from her first surgery. She has blue eyes right now (Do they change? Can someone research for me if baby eyes change color over time and let me know?). She is so funny as you watch her with her brand new frog binky. She loves her new binky. She also loves sucking on her thumb. Definitely a thumb sucker. Grace usually ends up with her thumb, or almost her whole hand, in her mouth. Then she will try and pull her nostril tubes out. That’s when mom and dad have to step in and say: “No no Grace. You need to leave those in so you can get big and strong”. Grace definitely seems to have a playful banter to her, despite being on some drugs that might make her feel a little groggy sometimes. Grace really really really really loves this noise machine that plays baby music and makes it look like an artificial turtle and fish are swimming around in the ocean. When that toy comes on, she can’t look away. She just stares and sucks on her pacifier for minutes on end when that thing is on. She’s quite intuitive and rambunctious.

Also, Abby has been coordinating with the physical therapist. Abby does exercise movements every day with Grace to keep her limber. I’m reminded of the old movie (Karate Kid), and/or the hit new TV series: “Cobra Kai” on Netflix. If Grace was in karate, she would definitely be at “Cobra Kai” Dojo because Grace likes to “Strike Hard, Strike Fast”. She’s quick and sneaky with her arms and legs. Watch out. I wouldn’t want to have to chase her down the street after she tee-peed your house. No way you’re catching Grace. That’s what I love about our baby girl Grace. She always keeps us guessing and on our toes. We love you Grace! Thank you for being strong and for being the most beautiful girl I have ever laid my eyes on (shout out to my wife Abby for the good looks).

Thank you all for following us on our journey. Many blessings to each and every one of you on this rainy Michigan/Indiana day.

Sincerely,

T-Diddy and the Dolphin Dancers