Growing

Sunday, March 28, 2010 1:00 PM, MDT

This is why I am a terrible blogger, I am terrible at regular updates!

Let's see, since last I updated, Cassidy has started eating larger feeds, she has taken up to about 55mLs in one feed, which is almost double what she was taking before! We visited her pediatrician for the very first time, and at that appointment, she'd put on about 100 grams! She weighed 2050g! And then the following Tuesday she was up a little more even. So it seems like she is moving in the right direction. Though, she started spitting up more and having really bad gas and reflux, so we've cut down on the additive, and just tried to get her to take more mLs each feed instead. She has another weight check on Tuesday, so we will see how she does.

Tomorrow morning we have a super early appointment with the Audiologist about an hour away, so that should be interesting getting there on time. It is a follow-up for her newborn hearing screening.

We also don't have to go back to the Cardiologist until April 8th! He was very pleased with all of her stats, her O2 saturation, ekg, heartrate, perfusion, etc. He said we really don't even need the back-up O2 at home, but we are keeping it around for peace of mind. We haven't had to break it out at all, but it is nice to know we have it in case of an emergency. Depending on how she looks in April, we may get closer to knowing a date for her open heart surgery (OHS). They will also do a catheterization before they do the OHS. It has now been the longest Cassidy has gone without some form of x-ray or sonogram in her whole life :) Oh, and something really neat came in the mail: a cd with all of her x-rays from her stay in the first hospital with all the reading information included! Never had something like that before, and I love it. I love that the hospital is keeping records electronically, and that we get our own copies of those records! I wish we'd get one from Denver too!

We've also battled our first round of sickness in this house since Cassidy came home. Kevin came down with a serious case of strep. He went to our family doc and they treated him aggressively on Friday, giving him a shot of penicillin, nasty killer mouthwash, and medicine. Fortunately, it seems the rest of us dodged this bug!

My folks made it home safely, and even took a little side trip to the Grand Canyon! It was my dad's first time there, and I think they had a good time. They even made it home in time for my mom and grandma to watch Dancing with the Stars. I enjoy teasing them because it starts 2 hours earlier for us, so I finish watching before they even start. Especially around finale time, I threaten to text them the results! Gotta enjoy the little things, right?

It has been a little strange trying to get back into some sort of routine. Life is so different, and this time at home is sort of surreal. I think the looming surgery is sort of like the elephant in the room that no one wants to talk about. I know that whatever routine we get into now, is only going to be interrupted in the near future, and a new one put into place all over again. Right now we are just trying to enjoy every moment having this sweet baby with us all together at home. Soon enough, life will be turned upside down again. We will be living in the hospital, praying for our tiny baby, and putting her life into God's hands all over again. And it is hard for me to face that reality. Right now, I can almost live in denial. She looks so healthy, so happy. From the outside, nothing appears out of the ordinary, apart from a a little skin discoloration. And it strikes me that many of us live our lives that way, don't we? From the outside, we appear to have it all together, maybe just a character flaw here or there that is no big deal. We go about our daily lives pretending to be just fine. Sure, we aren't really growing all that great, we stay relatively the same. But we hide it pretty well, and those who don't know us intimately probably would never notice anything was unusual. But inside, we are a complete mess. Nothing looks like it ought to, and we are just barely functioning. Cassidy's body works twice as hard inside just to get by. Her heart functions, but only just. Spiritually, we all need a new heart. None of us is born functioning the way we were created to. And without the healing of the Great Physician, we can never reach our true potential. I want to live my life with a new heart. One that functions the way He originally intended. One that beats steadily for him, and allows me to do all that I was created to do.

Cassidy has already taught me so much, in her short little life, and I cannot wait to tell her about it as she grows: her impact on so many lives, just by being born. And I pray that she will be able to tell others her story as she grows, and impact every one she comes in contact with as she grows up big and strong.

For this week, could you please pray that we have a good appointment at both the Audiologist and the pediatrician. Pray that Cassidy continues to learn how to breastfeed. Right now she cannot nurse effectively, and that makes for VERY long nights between bottles and pumping and diaper changes. Kevin and I are not getting a whole lot of sleep these days. She has to eat overy three hours minimum, and by the time we get through each nightly feed, we can get maybe two hours of sleep before we have to start all over again. Also, please pray that none of the rest of us ends up with Strep! Pray that we all continue to remain healthy before Cassidy has surgery. I want to be able to keep sending my girls to co-op, but if stuff starts floating around more, we are going to have stay home, and that would really disappoint them.

Oh, and I wanted to say thank you again to Kevin's co-workers! The swing is perfect, and the big girls have been carrying around their bags and their coloring books all week long. And thank you to everyone who provided meals for our family. It was such a relief to me not to have to worry about my family having healthy meals while I was not here to cook for them. I am thankful that I have an amazing husband who is also willing to step in and make meals for us. I think the girls prefer his cooking over mine any day! Thank you for the notes of encouragement as well. I read the guestbook every day, and just feel so loved. I know that it may not seem like much, but it is huge. Just knowing that so many of you are praying for Cassidy helps us feel so encouraged. I hope one day I can give each and every one of you a great big hug and say thank you!