It's almost been 2 years since Kayden's palate repair! I can't believe it's already been that long. He's done so well since then & you really can't tell too much since you can't see his scars much anymore! I remember trying to feed him when he was in the NICU, we would get SO excited when he'd eat a half an ounce because of his lip & palate it was a challenge for him. And man, when he ate his first whole bottle in their, I could have threw a party when I got home haha!! When I look back at all that, Kayden has came a very long way. Before he had CHF he would eat all the time, he'd be carrying food around all day lol. Then once he started getting sick again he lost his appetite, & ended up with the NG Tube since he wouldn't eat. Then when they put him on the Revatio, he has felt so much better & back to carrying food around everyday or having something with him on the couch! I love it lol!! He may still be in heart failure & facing surgery, but he's not giving up, I'm so proud to be his mom!!
|Kayden's Palate, he had his little mouth piece thing in too.|
I just love this smile. This was a few days before his first surgery (4 months)
I still can't help but wonder what went wrong with his heart. I mean it was better or staying the same I guess I should say for a year or maybe even a little more. Then once he had that surgery in June for that cyst beside his ear, everything went downhill. His heart got worse & there was no explaining it. No one knows why even still and it's been almost 6 months since he was put in the hospital for heart failure. He's 3 years old now, and he has had 5 surgeries & done fine through them all, even the ear surgery he did fine through it. So yes, even when he has his heart surgery I do think he will do fine, but ya know this is also a more serious surgery so it scares me a LOT more so I still have that what if in the back of my head. But reading other CHD mom's stories about their babies & their surgeries. That gives me more hope than you could imagine! Our kids surprise us at how strong they really are. Kayden's been fighting for his life, but this surgery I'm afraid is going to be one of the biggest fights of his life! After I had Kayden, I was at my moms job & an older lady and I were talking about Kayden & I was telling her about everything he had. Before she left she told me 'Have faith in God & everything will be okay', that has been in my head now for 3 years. I'll never forget that & I remember it EVERY day!! I have a very special little boy in my life & God knows how much I love him & he knows what it will do to myself & my family if anything happened to him, so I don't think he will take his hand off of my little one. I know whatever is going to happen is already written & what's going to happen is going to happen. But I can't help but think, ya know I know I've done wrong in my life & I've changed a lot now and I really don't think he will punish me by taking my child away. That is one thing NO MOTHER should have to face. It's hard enough losing a parent for the kids. But to lose your child? That is pain no parent should feel. I know Kayden's case is bad & rare as his cardiologists say, but I do know there are CHD's worse and that's the bad part about it. I know somewhere, someone has it worse than me & I know how I feel each day, so I couldn't imagine how they feel!! So please tonight before you go to sleep, say a prayer for all of the families out their affected by a heart defect.
Right after his lip adhesion (4 months old)