Gracies First Christmas PT. 1

January 3rd, 2023 | EP. 18 – Gracies First Christmas PT. 1

This is only Part 1 of Gracies’ first Christmas (Part 2 will be coming soon and we have a very special announcement in Part 2 that we want to highlight as we had a very unexpected Christmas gift that truly left mom and dad speechless).

In this episode, Gracie gets discharged on Dec. 19th (just before Christmas). Mom, Dad, and Gracie couldn’t have been more excited. Additionally, we were very thankful for C.S. Mott Children’s Hospital and The Ronald McDonald House in Ann Arbor as they heard Grace was being discharged just before Christmas. Grace has quite the reputation at the hospital in Ann Arbor. If I were to speak on behalf of the nurses, I think they would all agree that Grace, if she came to a fork in the road where one path is really easy and the other path is probably the most difficult path ever, has a knack for taking the more difficult path keeping everyone on their toes. Grace is certainly on a first-name basis with all the doctors, nurses, and staff. To be honest so is Abby. Not only that, but I (dad) called the food service hotline (this service gets used A LOT by mom and dad), and the food service people on the other end of the phone knew exactly who I was when they said: “OOOHHHH, you must be GRACIES dad. What can we get you today?”. They also know Abby on a first-name basis. None-the-less, Grace is a freaking rockstar here at the hospital. Keep in mind, this isn’t a small hospital by any means. I think that says a lot about Gracie’s hypnotic grasp of everyone she meets. Anyways, Mott Children’s Hospital and The Ronald McDonald House invited us to Santa’s workshop at both locations to pick out a couple of presents for Grace. We are very blessed to be a part of the Christmas gift-giving extravaganza with Mott and McDonald’s house. All in all, Christmas was a success. My wife and I really felt very humbled and also felt like we were at home here at the hospital and McDonald House when they invited us to these Christmas holiday events to help families who don’t necessarily get an opportunity to shop for their loved ones. Now, Abby and I only have Grace, but what was really neat and special to hear was that Mott Children’s Hospital would allow families to pick out 5 gifts, not just for patients at the hospital, but also for every child in the family. How amazing is that?! #MindBlown

However, selfishly, the best gift of all was Gracie got to be home for her first Christmas. It was truly a Christmas Miracle. Thank you to our team of doctors, nurses, case workers, and staffers that helped make this all possible for Grace to have a very special first Christmas.

So, yes indeed, mom and dad got to bring Grace home for Christmas. However, the days of being home that led up to Christmas, let me tell you (from dads perspective), were very very very very very very very very very very very very (times 1,000) – overwhelming. Even though we got to come home with Grace, we also got to come home to a very intimidating schedule. Why is that? Well, let’s not forget, Gracies 2nd heart surgery was unsuccessful, so she is technically still on the Norwood. Basically, Grace has a shunt in one of her Arteries that helps power her heart. The shunt is very crucial and it is vital that it remains operational. On top of that, Grace has a clot in the lower half of her left lung. All of this means that it’s not as simple as just coming home with Grace but there are several medications ( two times a day and sometimes 3 times a day) and even a shot (administered twice daily) that mom and dad have to give Grace. Hold on and let me do some calculations here….. Yeah, Grace at one point was on upwards of 13 different medications given 2 – 3 times throughout the course of the day. On top of that, Gracie is being fed through her NG tube (this is a tube through the nose that goes directly to the stomach), and she feeds every 3 hours. Each feeding takes about an hour and a half (roughly). Add to that, Grace is teething and she had also developed a very severe diaper rash (mmm mmm mmm… this has not been pleasant for Grace). Thankfully our hometown cardiologist prescribed some “Magic Butt Cream” to help alleviate the rash and pain, this seems to be helping.

Back to the topic of overwhelming. I say it was overwhelming because mom and dad had been at the hospital with the help of nurses and doctors. Coming home, it was now all dependent on us as the parents. Keeping up with Grace is 24/7 (as with any kid I am sure) but adhering to her med and feed schedule while trying to maintain any sense of normalcy with our jobs has proven to be very disruptive and difficult. Let me emphasize, Grace is and never will be a disruption in our lives, she is an absolute blessing. When I say disruptive, I mean our attention spans to focus on any specific task is rather difficult. It certainly took a couple of days of to get used to the new environment and schedules. I have to say, mom and dad probably average 4 hours of sleep at night and maybe an additional 2 hours of sleep throughout the day. Not a lot of sleep here at the Taylor household. Well, not a lot of sleep for mom and dad at least. One of the hardest parts of my day is giving Grace a shot in her left thigh in the morning at 7:00 AM and in the right thigh at 7:00 PM. Grace, much like everyone I’ve ever met, does not like getting a shot. The shot is the most important medicine though… and NO, for all you college kids out there, it’s not the type of shot you would want:

This shot is called: ‘LOVENOX’ and Lovenox is a blood thinner medicine that is helping making sure Gracies Clot in her left lung doesn’t get any worse, and it helps alleviate any future clots, and perhaps most importantly, helps her SHUNT stay open. You can imagine the importance of this shot.

actually, here, let me show you her meds list:

All of the meds, except for the Lovenox shot, are administered through her NG Tube. We then flush her NG Tube with purified water. Initially, when we first came home with Grace, she was having a hard time adjusting and was vomiting a lot during or after her feeds. She slowly began to acclimate to her feeds which was nice. Also means we didn’t have to wash as many pajamas and blankets. Lord knows how dad has a severe allergic reaction towards washers, dryers, and folding clothes. I’ve been meaning to see a doctor about it, but my wife insists it’s all in my head.

As Christmas rolled around, Grace was eager to see her cousin Hadley (whom you would have seen at the end of the video featured above). It was nice to see family. I wish I could say we caught up on sleep but to be honest, the show still goes on with meds and feeds, it’s just a little easier doing them with family around for comfort.

Now you may have read that there will be a Part 2 coming soon. I am working on a special video for that one and when I have the video done, I will be able to share Part 2 of Christmas. Truly, it was a big shock for my wife and me (in a Good shock kind of way – no need to worry about this one). I will say, there are some amazing individuals and companies out there that… wow, words can’t describe. I’ll leave it at that. You’ll find out soon enough.

In lieu of time, let’s keep moving forward. So Christmas happened and it seemed like it happened all too quickly. Before we knew it, it was just Mom, Dad, and Grace sitting peacefully at home again. However, that did not last too long. As some of you may have already noticed from our social media accounts (click here to follow our Facebook account) & (click here to follow our Instagram account) & (click here to follow our YouTube account) – we are currently back in the hospital at Ann Arbor.

At the beginning of last week (Dec. 26th, 2022) – Grace had a pediatric appointment to get her 9 month immunization shots. I don’t remember the names of all of the shots, but one of the shots was the Flu Vaccine. Additionally, she had blood cultures drawn. After all of that happened, it wasn’t but 2 days later Grace was diagnosed with the FLU. We knew she was sick as she had a temperature as high as 103 at one point. Clearly not good. Especially not good for a heart warrior baby. We called the doctors immediately but they said to continue monitoring her closely and make sure if the temp continues to rise to bring her in immediately. Poor girl. If it’s not one thing, it’s another. On top of that, her blood cultures came back and it showed that her blood thinner medicine was very very low. Meaning, the blood thinner medicine wasn’t working, which puts Grace at a very high risk of clotting or her shunt wearing down and not working. It was Thursday, Dec. 29th at 9:45am that Mom received a phone call from our Cardiologist in Kalamazoo, that we were to bring Grace into Bronson Hospital immediately (this is where our cardiologist in Kalamazoo is based). Dad was back at the office this particular day. Talk about being scared. No one wants to receive a call that it is imperative for their child to come to the hospital immediately. As you can imagine, my mind was racing, as well as my truck racing to get back home to pick up my daughter and take her to the hospital.

Once we got to the hospital (Bronson Hospital in Kalamazoo), it was clear that Grace had low blood oxygen levels. We were there for the majority of the day. As evening rolled around, our cardiologist informed us that she was going to transfer Grace over to Ann Arbor as our cardiologist didn’t feel comfortable with Grace being at Bronson in her condition. Bronson is not specifically a pediatric cardiac hospital, so they felt it would be better to have her admitted at Mott Children’s in Ann Arbor where they have more technologies, meds, and capabilities with pediatric cardiac children. Conveniently for Bronson, they said we needed to go via an Ambulance because Grace needed oxygen. So my wife and Grace rode in ambulance over to Mott Children’s. However, the odd thing was, the ambulance people didn’t even have Grace on oxygen during the ride. SOOOOOO… why couldn’t mom and dad just drove Grace to Ann Arbor ourselves??????

Well, we made it to Ann Arbor safe and sound. Over the course of the next 2 – 3 days, Grace’s vitals and stats got better. So much so that the hospital was going to discharge us on Sunday, January 1st. to come home. In fact, they did discharge us to come home. But, remember when I said Grace likes to take the path less traveled when there’s a fork in the road? Well, she did just that. Just as we were leaving, Grace had a poopy diaper with blood in the stool. Waahhh Waahhh. That said, the doctors wanted to keep her for a little bit to see if she would have another bloody stool. Of course, Grace had another bloody stool. Which is where we are today. Still at the hospital waiting to be released (at the time of writing this: January 3rd, 2023 – 1:18PM). Our hopes are to be able to be discharged for a second time tomorrow (January 4th, 2023).

Please continue to Pray for Grace as she recovers from the FLU, her intense Butt Rash, and that her Shunt can continue to stay strong with no additional Clots in her body as well.

Sorry for the abrupt ending, my parents just got here. Gotta Go. Thank you to all of you for your love and support with Grace. Hope you all had a great Christmas and a very Happy New Year.

Sincerely,

Taylor Family