Skyler had another appointment with the cardiologist today, and it didn’t go nearly as well as I had hoped. She said her aorta looks good, but her heart function has just not improved at all since surgery. She said it could be a long time before it gets to “normal” but yet she would liked to have seen even a small percentage of improvement by now. If it still doesn’t improve in the next visit or two, then she wants to try some different medications. These are medications used to treat adults with heart problems and are not yet proven on babies, so the dosing would be experimental. Sounds kind of scary to me. And, since they are medicines used on adults, there is just no evidence saying they would work for a baby.
The doctor even said that if Skyler doesn’t respond to medications, she might eventually be a candidate for a heart transplant. I cannot even fathom that! Especially with how good Skyler has been. She is so happy and learning more and more each day. I asked the doctor what it would mean realistically for Skyler if her heart did not improve. She said we would notice it when she starts crawling and walking, and that it could make it very hard for her to learn to do things. She would have very little stamina, so any “exercise” would wear her out. This would continue in that she wouldn’t be able to run and play with other kids or lead a very active life. My heart just breaks thinking of Sky with a future like that!
I’ve really had a hard time with this today, accepting that Skyler is not all better. I’ve been pleading with God again and begging that He help her heart to heal and do what it’s supposed to. I just want her to be happy and healthy and normal. I can’t stand the thought of her undergoing another surgery, especially a heart transplant. There is just nothing good I can think about that right now. A healthy heart is not easy to get, much less one that she wouldn’t reject. I just pray that she can fight through this and her heart will heal itself!
7 responses to “Long road ahead”
Lori,
We know each other very little, mostly as acquaintances through my husband, Ben. However, I feel compelled to reach out to you as our daughters are about the same age (Skyler is a month older than Stella), and there was this camaraderie that I felt with other pregnant women during those 10 months. It breaks my heart what Skyler is going through. Your strength moves me, and I can see from pictures that Skyler also possesses this quality. Believe.
You are in my thoughts and prayers,
Mandy
Lori,
I know we haven’t talked recently, but you and Ronnie and Skyler are in our prayers and the prayers of strangers at my church. I realize I have no idea what you must be going through, but I do know that Terylan knows. She would be a great person to turn to with questions. I am so thankful that you have this page so I can read about Skyler and see pictures of her. It may seem I do not have time for your family, but I do spend time in prayer and you are on top of my list.
Big hugs for you and Ronnie and of course for Skyler,
Joy
I will be praying for your strength and for Skylers too!
I’m really sorry the appointment was so disappointing. How scary that you can’t be sure of her future right now. We will pray for Skyler and for you too. I definitely think there is something to be said for how happy she is though…that has to be a good sign! I’m sure that no matter what the future holds for her, she’s going to continue to be a happy kiddo…she’s got such great parents who are making sure of that!
Lori, please let me know if there is anything you and Ronnie need. I’m available whenever and wherever if you need anything. My thoughts are with you guys. Give baby Sklyer a big kiss from Uncle Patrick.
Just keep praying, Lori! Just like God saw you through the chapter of Skyler’s surgery and short-term recovery, he’ll see you through the rest of this book.
I’ll bump up my prayer intensity for Skyler.
That really stinks that the visit didn’t go as well as you were expecting. Keep in mind that Skyler has lots of options before a heart transplant and there is still time for God to work on healing her heart. My thoughts and prayers are with you and Skyler. Hang in there!