Everything was perfect, Until September 9th.
Gracie was doing amazing, sure she had oxygen on and off for a little bit but she eventually was completely free of it. Pt and OT came in at least 3-4 times a week to work with her and build up her strength and skill. She was being fed regularly now and all her chest tubes were completely gone. Which meant TUMMY TIME!
If you know anything about tummy time, you know how important it is for core and neck strength in babies.
We also were coming in more regularly as a family which was SO NICE! I would come in every day as normal with Paisley. We'd get there around 10 (since it took me forever in the morning to get my life together) Or we'd end up stopping at target quick to get some cute matching outfits!
Every Wednesday was PT and music therapy. While Gracie was getting in a workout she also had her amazing musical therapist come in and sing to her. She would bring in some fun instruments as well for the girls to be able to hold and play with. She always started with her "hello" song,
which the girls came to love because it was important to keep a routine of some sort.
One thing I learned from music therapy is that babies have expectations. So if those expectations are not met it can be confusing for them. This is why she always started with the hello song because the girls expected that!
It was amazing to see Gracie and Paisley somewhat interacting now. Her physical therapist would sometimes use Paisley to help Gracie with her PT. Wednesday was something that I truly looked forward to, not only did we have both these therapists but I would always match them on Wednesdays and it started to become a tradition; "twin Wednesday". I guess you could say this was one of those "making the best out of the situation" type things.
Now that Gracie was coming along well and getting stronger, it was nice to start focusing on my health as well. I was finally cleared for working out now long ago and I started to dive into it a bit more. While Gracie and Paisley were always #1 I still find times to work out. I was a huge runner before the girls so I was excited to get back to that.
I remember my first run back I was adamant I would do 4 miles. Looking back now it's so funny because that was so unrealistic!! I started my run and as soon as I did I realized I'd be lucky if I could stay alive! LMAO! I ran 1.17 miles, got home, and told my husband to call 911 (kidding obviously) but that was how I felt!
Tim and I then decided to take the boat out one Sunday, have grandma watch Paisley and just try to take a break from all the hospital stuff. I want to note here that this was a very hard decision for me, being away from Gracie was always the toughest decision for me. I knew she looked forward to seeing me every day and I did not want to make things any more tough on her. But I needed a break, and since she was doing fantastic I knew it was okay to do.
We decided to invite our closest friends out with us that day, and since we were so nervous to be around anyone at all because of covid we asked them to go get tested before. Well, that did not go over well. My "friend" said that it was ridiculous of me to ask and she got upset with me. "those tests hurt" was another response.
Me being the people pleaser that I am said "okay, that's fine". IT WAS NOT FINE! She was a nurse working with covid patients. This was not something inexcusable for me to ask.
If you want me to be completely honest, I think she was a selfish little brat.
Her mom caudled her even at the ripe age of 26 years old, it was always her way or no way. There was one day her husband came out on the boat with us and she was working. She MADE him drive home drunk just to make her dinner. I couldn't even believe it! The fact that a grown adult cannot make their own dinner? Sad really.
I tried to make the best of it and just relax. I had to pump while I was out there and since I decided to have a few drinks I dumped the milk. This friend of mine was a HUGE drinker, while I was not. I truly didn't feel like drinking but AGAIN, I did it because she wanted me to.
The next day was Monday and I went to be with Gracie again and I missed my little girl. We had another great day taking walks around the unit and talking with a few other heart parents. I loved wrapping Gracie up in my wrap, putting Paisley in a stroller, and just doing laps. We always walked by one little boy's unit, Mason was his name. He had a lot going on, and to tell you the truth I'm still not sure all the reasons he was in the CICU but I know it was extremely serious. The team would get him into a little motorized car and gear up all of his tubes and whatnot just so he could do a few laps.
This was always so nice to see, the lengths that the team would go to for this little boy! He always stopped by Gracie's room too and wave hello.
I'll never forget that little boy.
A few days later I found out this "friend" of mine had actually been exposed to Covid right before she came out on the boat with us. I was INFURIATED! How irresponsible! This was the EXACT reason why we wanted them to go get tested before being around us. We knew we weren't going anywhere except to the hospital and back. I get it, she didn't know per say but YOU WORKED WITH COVID PATIENTS! She went to get tested and luckily it did come back negative after a few days. While I didn't know what her test would say I was wearing a mask around Gracie because I couldn't chance it. But I also couldn't be away from her again for so many days, and I felt completely fine.
I try not to get too angry over all of this but this person was supposed to be my best friend. Now I look back and wonder why I let her get away with so much stuff!
In reality, I know I let so much slide because I was exhausted, overwhelmed, and grieving everything I had taken away from me.
We finally were able to take Gracie outside for the very FIRST TIME! This was so extremely special and of course, it was TWIN WEDNESDAY! I continued to ask the team about a timeline for going home. Even though I knew to keep my guard up due to so many times before, I couldn't help but be excited that we were getting so much closer! They were also very anxious to get us home but Gracie still had her PICC line and feeding intolerances.
We worked with the speech therapist on her feeding, generally 1 time a day. Gracie just was not interested in bottle-feeding for more than a few mL. It was frustrating, to say the least, but I was happy that she had come such a long way.
Gracie continued to ween off of her meds by this point and still was doing unbelievable but things were still just a little off with her heart and we couldn't figure out what was going on. The main thing that stood out was her lung x-rays. They still seemed to come out a bit cloudy.
Then September 9th, 2020 happened. I thought the worst days of my life were over. But I was so so wrong. It was another twin Wednesday. I had tye-dyed matching Ombre onesies, headbands, and a t-shirt for myself. The day was great, we had therapy and music therapy. We had one of our favorite nurses and everything seemed like a normal day. Gracie had an echo and everything came back great, but unfortunately, echoes don't always give you a good look at the pulmonary veins.
So they decided on a CT to ensure their findings were correct. They wanted to see what the hold-up was with being unable to get her off of a few of her meds.
As we waited, Pailey napped and I wrote another email to Gracie. Re-reading this email was tough. My gut was usually my best indicator, but at that point, I had no reason to think anything THAT bad was wrong with my baby. As my eyes are filling with tears I read the next email I sent to Gracie which was just a few days after we received the news. Dr. Handler, (Stephanie) came to speak with me that Wednesday night. Her eyes were filled with tears and she started to draw a picture on the dry erase board in our room. She went on to explain what they found on Gracies CT.
Pulmonary Vein Stenosis
I had no idea what this was or the extent of what this could mean for my 5-month-old baby. So I'm going to explain to you:
Pulmonary vein stenosis is a very rare and serious condition in which there is a blockage in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. This condition can be isolated to one vein, but often affects multiple veins. Stenosis occurs when there is an abnormal thickening and narrowing of the walls of the veins. Pulmonary vein stenosis is a progressive condition and may lead to total obstruction to a blood vessel. Most commonly, all of the pulmonary veins of one lung are affected, causing pulmonary hypertension and pulmonary arterial hypertension. Surgery and catheterization to widen the narrow veins is usually a short-term solution since the obstruction typically recurs.
At this point, we were told Gracie had 3 veins affected. Her 2 right, and 1 on her left. Dr. Handler said to me
"We have about a 50/50 chance that surgery will be successful".
My child had a 50/50 chance of surviving is what this meant to me. I broke. I think my heart at that moment stopped beating for a few seconds. I couldn't breathe. I couldn't move. I couldn't do anything. Then I cried. For hours, days, weeks, and months.
I cried so much, I could just about feel my soul leaving my body.
So I wrote to Gracie again...
Part of me died that day, and we were only getting started.
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