hugughghhggghghghgghhh. That’s how I feel. Hughghghasghghghghghg.
I took Abby to the cardiolgist today for what I thought was just a routine check of the hole in her heart they found at birth. At six months, the hole had closed so much that they assured me that she would not need surgery on it. I almost cancelled this appointment today because I was so sure that things were fine.
They are not.
They ran an ECG on Abby first. I could tell there were issues when another nurse went and got the cardiologist. Then they ran the echo. Know this for future reference: it’s ALWAYS bad news when the doctor comes in, sits down, and tries to make small talk. When there’s nothing wrong, they come in and say, “everything looks great! See you in a year!” and send you on your way. Today when the cardiologist sat down my heart sank. When she scooted closer to me it began to beat harder from wherever it was hanging out near my stomach, when she asked me to tell her “a little bit about Abby” with that tone of voice you can only tell is trying to soften a blow…I knew something was wrong.
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Abby has an Atrial Septal Defect (ASD). ASD is a congenital heart defect in which the wall that separates the upper heart chambers (atria) does not close completely. See the handy diagram.
Right now Abby’s ASD is right at the edge of being too big to close by use of a catheter. The catheter option is the one we want. It uses a small tube, inserted in the groin area that is run up to the heart to close the hole. A better explanation can be found here. Abby’s hole might be too big for that procedure.
If so, we have two options. The first is to wait it out. Because the hole has shrunk a little since birth, there’s a chance that it could shrink down to a level that would make it possible to have the catheter repair. The problem with this is that Abby’s heart has already started to swell on the right side (I think, I can’t remember. They said a lot of things. It may be the left side). Also, if left untreated the hole will start to create damage to Abby’s lungs. Abby’s lungs aren’t in the best shape as it is, so this option still sucks.
The final option would be open heart surgery. This one scares the hell out of me. They open her up, stop her heart, put her on heart/lung bypass and patch the hole. They’re remarkably successful with OHS, I just do not want to do it.
So right now we’re praying that the specialists will say that they can close the hole with the catheter. If so, the procedure will probably be done in a couple of weeks. Will you please pray with us? I’ve seen over and over again in Abby’s short life what good the prayers of the masses can do. It saved her life when she was so sick back in June. It keeps me sane. I know this.
Thanks.
Lexi Mag 
Lauren had an ASD at birth ( actually, 2- a 6mm and a 10mm hole). At 18 mos she had hers repaired with the catheter procedure. Hers were closing on their own, but her heart was also getting just a little bit bigger. We had an OR booked for the morning after the procedure, just in case it didn't work. I doubt this will help you, but Lauren's situation is so similar I thought I would share it.
Beth- it does. Did you think about waiting to see if they'd close any more? I think if they DO do the catheter, they'd probably have the OR waiting, too. How did it work out?
I'm so sorry that you had that news today. Hearing that your child needs surgery is the scariest thing! Hailey had hers at 4 1/2 months to close a very large VSD (bottom chambers) and several small ASDs. She sailed through fabulously and we haven't looked back since. I will pray that you have peace with the decision you make. I'll keep checking your blog to see how things are. She is a cutie!!!
This news sucks and it is super stressful. I will definitely keep her (and you) in my prayers.
Awe man I'm so sorry. We're praying for little Abby.
Hugs. and more hugs. and many many prayers.
I'm so sorry about all the stuff you guys are going through. Our prayers are with you and Abby. She is a strong girl. Please let us know if you guys need anything or if there is something we can do for you guys!
We're absolutely praying for Abby. Keeli had an ASD and VSD repaired in open heart surgery at Seattle Children's when she was 3 months old. If you have any questions, I can put you in touch with my parents.
We'll be praying for you and Abby! Surgery is definitely unnerving…no matter what kind. She'll get through it just like she has everything else – like a rock star! Hang in there, friend!
Will definatley keep Abby in our prayers too!
Praying for this precious child and for you and your husband. hugs
Praying for sweet Abby
saying a prayer for Abby, and for you right now. We went through open heart almost a year ago with Fiona, and while it is a very successful surgery, its still a scary one to watch your baby go through. Praying for best case scenario, and for peace and skilled hands if not.
I'll pray and pray and pray. Good luck!
She is so adorable. And I'm so sorry to hear all the stress you're going through. I'm not a mom i only know how rough stuff like that feels as an older sister. You guys are so strong. We love you guys and Abby and your family are in our prayers.
Dadgummit! Leave it to you and Abs to make me cry and laugh at the same time. I can't stop grinning at that "V" picture, as the giggles creep out around my mrrrrff-ugggs. What a precious dolly she is. Praying you'll be blessed with the strength and discernment to make the best choice for her…. hang in there momma. PS: My secret code word (for blogger to allow me to submit this comment) is "kablea". I am certain that this word could be important for something. Kablea, Abby. Like with a Nike swoosh. I heart you girls mucho.
My sister was the first in the valley here in California to get the catheter repair on her ASD when she was younger and was on the news. And a baby that I use to babysit had to have open heart surgery for her ASD. And all is well now for both of them. It's very scary to go through, but prayer and great friends and family and a great doctor help to comfort some of those nerves and feelings. I'll keep you guys in my thoughts and prayers. Abby is sooo cute! 🙂
Praying for Abby – and you! I hope they're able to use the catheter. Ben is 4 months, with an ASD, and we're just waiting to see if/when he might need surgery.