Congenital Heart Defect Awareness Week is coming to an end.
I wish I had all the money in the world to fund the research for CHD's. But since I don't, I figure that sharing our story and educating others about CHD's is a good runner up.
What are CHD's? a CHD is a defect in the structure of the heart and great vessels which is present at birth. Thanks to technology, most defects can now be found in utero.
Most CHD's are treatable with medicine and/or open heart surgery.
Lily's defect was treatable by both. The doctors wanted to give the hole in her heart the chance to close up on it's own. No growth is good, but failure to close isn't good. We were in that boat....the hole wasn't getting any bigger (YAY) but it wasn't shrinking. Failure to close caused failure to thrive for Lily. Nothing is worse than taking your child in repeatedly to find out she was losing weight. We were feeding Lily every hour. She would consume maybe an ounce and fall back asleep. Finally, the doctor called for an NG tube. This would be force feeding. Lily would be nourished constantly. When you make your baby plans and prepare for baby's arrival, you don't think about "should I learn how to put in an NG tube?" or "Wonder if I should invest in IV bags to hold the formula??"
Lily was hospitalized at 10 weeks for Failure to Thrive. She was hooked up to monitors and IVs and a continual feeding pump. Our hospital stay for this was 11 days.
Finally, she was gaining weight. Now, we were working on "fatting her up" for open heart surgery. To make that call, "Let's not wait anymore, schedule the surgery" was one of the hardest things I had to do. So thankful for my hubby by my side.
Surgery day was here. Leaving your little one with strangers is heart breaking enough in itself. The nurses at Medical City Children's Hospital were AMAZING!! Always keeping us informed. 5 hours later, the surgeon is there to see us. Hearing about how well Lily did, and finding out that the hole was larger than they thought assured me that we made the right decision for surgery. Seeing my precious baby girl on the insanely large hospital bed, cords and wires everywhere. It all hit me. That's my baby girl! Let me hold her, tell her I love her. Please Jesus let her know that mommy is here right now. Emotions were flowing. There was no chance in trying to hold it all back now.
Recovery was quicker than expected. From the time we checked in to the hospital til the time we left was 7 days almost to the hour. Lilyann had a few set backs just after surgery. Arrhythmia's and side effects from the pain meds but she bounced back with vigor.
I thank God daily for her. She's a miracle. Her "zipper" is a reminder of where we were and how far we have come. Thank you, God, for keeping her safe and healthy. She may get on my last nerve some days, but I wouldn't have it any other way. ♥
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