Next, we’ll be scheduling an appointment with Slugger's cardiologist. That’s a big one. That’s the one that I’ve been waiting for this whole time. After all we went through with Rory, I’m especially nervous about Slugger’s heart defect. Even just recently, I was captivated by that high school basketball player passed away after scoring the winning basket because of an enlarged heart. Even if Slugger seems fine now. Are we going to have to worry her whole lifetime? Are we going to have to keep her from playing sports or doing strenuous activities to keep her safe?
There’s a couple whose blog I followed while trying to become pregnant. They became pregnant just a week behind me and Scott. I read along as they went to the doctor’s appointment and were shocked to find they were having triplets. I remember thinking “Wow, that’s crazy.” Little did I know that just a few weeks later, Scott and I would be having our own “WHAT?” ultrasound. I even exchanged some emails with them. Our stories were just shockingly similar. We both did IVF. We both had a split resulting in identical twins and a fraternal twin. I would find out that we were having three girls. They found out they were having three boys. When the girls were born shockingly early and we lost Rory and Allison, it was painful to see any reminders of triplets. I stopped reading blogs but I kept this particular blog in my reader although it was difficult to see as their pregnancy went to 34 weeks (amazing for a triplet pregnancy). It was hard for me to see what I wanted my pregnancy to be like. I thought that I would unfollow once their boys were born.
But their birth story brought about another commonality. My Baby B, Rory, my identical twin had a heart defect stemming from a complete blocked aortic valve. After birth, their Baby B, Linus, also one of their identical twins, was found to have a congenital heart defect, stemming from a 90% blocked valve. He has a lot of things going for him that Rory didn’t. He was born later and bigger. He had partial flow through the valve. They were able to use a less invasive balloon catheter procedures to try to open the flow. He’s had this procedure several times and been hospitalized several times but he’s also been able to go home.
It's been conflicting emotions for me. Relief and amazement to see this little baby go home so strong like his brothers. But also jealousy that our stories are so similiar but, yet, sadly so different. Why couldn’t this have been my Rory? How come I couldn’t take my Rory home and see her grow and gain weight. How come I didn't get to see her smile?. I never got to hug her, she was too tiny to just wrap my arms around. Mixed emotions and yet I was riveted to Linus and his brothers' story. I've faithfully watched their family through their blog. And watching his journey has hammered home the reality of raising a baby with heart problems. It was one thing when the doctors first outlined what to expect if Rory had been able to go through treatment in San Diego. It’s another thing to see what it looks like. To see what your baby will look like in the hospital bed. To know that they're struggling to breathe as fluid bulds up in their lungs. Their bodies tiring out. What your baby will have to endure. Watching sweet-faced little Linus throughout his treatments has been tough. The damage to his heart has been significant and last week, they blogged that he had to go through open heart surgery. Remember that he is just a week behind Slugger. He's still so young and small.
Linus does look a bit different from my little hapa Asian baby girls. But his little chubby arms and legs remind me of Slugger. So, when I see him in the hospital bed with wires and tubes…my heart breaks and I’m seeing Slugger (and Rory) in his place). I hate when Slugger cries when she gets a shot. I can't imagine seeing her go into surgery . The last update was that he is suffering complications after his surgery. I need for him to be okay. I need for him to pull through and get stronger and healthier. I have a hard time asking for prayers because I feel it's been a year of only doing that but it's all I can ask for today. Pray for Linus.