Saturday, October 30, 2010

Fighting Fiona

My mommy intuition was right. Fiona is declining and her feeding issues are a major concern. Neither her pediatrician or her local cardiologist were doing anything about it other then telling me "We'll see you in two weeks and see how shes doing" Well, I've heard that twice now, and I was not about to wait two more weeks. She's really struggling to eat.

After laying my foot down, they scheduled her to go see a GI specialist and I quick made some phone calls and squeezed her in with her cardiac specialist at the children's hospital since we were going to be driving all the way up there anyway. I'm not normally aggressive with doctors, but they aren't with Fiona all day and don't see her struggling and fighting to eat for over an hour each feeding.

The cardiologist walked in the room, and looked at my face and just said, " Its time, isn't it?". My eyes weld up with tears. This is what I needed. Just one look at my worried face and he could tell that she is struggling. He listened to her heart and verified that she needs to have her surgery soon. Her heart is starting to fail. Even though it was bad news that I was getting, I felt so much relief knowing that at least actions were being taken this time. We have to come back up on Monday to meet with the heart surgeon to schedule the surgery.

The GI verified my concern for her weight gain. Fiona's doctors at home were so passive about everything and these doctors were much more active. As much as I hate the two hour drive, I'm starting to feel that all of our appointments should be up here. GI referred her to see a dietitian and a speech therapist ( odd, you may think for a new born, but speech therapists help develop the muscles of the mouth which would help her to eat better). If they are not able to help her put on weight, then we will take the more extreme step of a feeding tube. Something that by all means we want to avoid, but her weight takes priority over her development if it comes down to it.

Other then her poor eating, you wouldn't think there was anything wrong with her. Shes smiling and baby talking- I'll make a noise, and then she'll make a noise and we carry on this babble conversation for a couple of minutes before she's over it. She's a squirmer and loves to wiggle on the ground. She curls her little hands into fists and I swear you'll get a black eye if you get too close. They say that her keeping her hands in fists is a down syndrome thing, though I am not sure why, but I like to think its her showing me how tough she is.

 







I'm in heaven when the boys love on their sister. Last night, at bed time, they insisted that their sister lay in the "mi-ell" between them, and Gavin so adoringly hovered over he saying, " I lud her". Fiona just squirms around, turning to look at one then the other, giving them looks of who are you and the occasional smile. Breiden is so protective of her, always kissing her ( "No mouth, mommy, kiss cheek").





The nice thing about having just two kids is you have an arm for each one. The boys sit on each side of me, snuggled in under an arm, resting their sweet heads on my chest. Those moments, it feels like the world slows down and I never want to move. When you add a third into the mix, you run out of arms. I'm looking forward to Fiona being a little stronger so she can sit on my lap and I can cuddle with all three.

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