Recent news

I know I haven't blogged much lately. I try to avoid it when I know I'll whine. I've felt very whiney lately. We've been home with Lucy just over a week now. She's been gaining weight and we're really happy about that. The truth is I hate the NG tube. I know it's good for her but it's made our lives that much more complicated. She feeds by mouth through the day and then we give her a continuous feed through the night. She doesn't tolerate the volume of food very well and will often throw up. We have to get up every four hours to change the milk. She likes to kink the cord when she sleeps which sets off an alarm. Then it seems like it will wake one baby up and then that baby will wake the other baby up. You think the girls would be use to each other by now but they seem to get more and more annoyed with the other. We've been getting next to no sleep. The girls screamed for hours last night. They both have colds. Lucy is really what makes the equation so difficult. She's not "allowed" to cry and so she's become totally spoiled and is extremely difficult to get back to sleep. My experience with these girls is so different from Jack. Jack was a really hard baby except for the fact that he was an amazing sleeper. He started sleeping through the night at 7 weeks. I miss that. It's not so bad when my mom is here and we can split up the night in shifts but she is currently in Cabo. Booo. We miss you Momma!

In other news, Hazel looks so cute in her new helmet. It's a lot bigger than the last one. We still need to think of how we are going to decorate it. Jack is still obsessed with letters. His new favorite words are JOG and STOP. I wrote those capitalized because that is how Jack prefers them. I don't think he even knows what jog means but he really likes spelling it with his magnets and insists on sleeping with his magnet letters, J-O-G. Weird kid.

Our biggest stress right now is the upcoming surgery. Chuck and I are both a little terrified, especially considering how difficult the last one was. We're trying to have faith and to let go of what is out of our control.

Helmets, NG tubes and MRI's oh my

Yesterday was a busy day. We had a cardiologist appointment for Lucy and a neuro-surgery appointment for Hazel. At Lucy's appointment we learned that her oxygen saturation levels were really good at 88%. They'll probably do surgery when her levels drop into the 70s. As she outgrows her shunt her ox sats will drop. We also learned that she still isn't growing enough despite increasing her calories in her formula. Lucy is going to be admitted to the hospital on Friday so they can start her on a NG tube and teach us how to do it. Lucy might also need an MRI while we are there. After Lucy's last surgery she was put on ECMO for a short time. Because she was taken off so quickly no one did the usual testing that is done after coming off ECMO. They are starting to think now that maybe they should take an MRI to make sure things are looking okay. If they do this she'll have to be sedated and intubated. I'm not really feeling up for any of this.

Hazel's appointment went great. Her head looked great. I think these appointments with neuro are more for their benefit than for our. They like to take lots of pictures and document her progress. Today we're going in for another helmet fitting. This will be her 3rd helmet! I can hardly believe how fast time is going.

Lucy laughs