Early Bird Catches the Worm

Well, our Addie definitely wanted to catch the worm! It seemed fitting that I post today since today, September 10, was her original due date. Our little girl wanted to make sure she was on time. ..well, early. ..ok, so, rediculously early before the event had even been organized. ..

Anyone who really knows me knows I'm a planner. ..I love my day planner, the calendar on my Outlook, and I get joy out of having things planned and scheduled out well in advance. Obviously God has a tremendous sense of humor and a funny way of reminding me that it's really not MY schedule but HIS schedule that matters. He really got my attention on May 10 (exactly 4 months before my due date - not a coincidence, I'm sure, since He knows I like dates and make connections like that) when pre-term labor hit me like a hammer and brought all of our dreams and plans for our firstborn crashing in around us. We learned very quickly what was important, and the things we had thought were important - a perfect nursery, adorable clothes, showers with friends and family, the ideal travel system - were suddenly not even on the list. What was important was survival, first and foremost, for our sweet Addison. The nursery, clothes, showers, and strollers could all come later.

Today was bittersweet for me. I've experienced the full range of emotions. Sadness and loss that my dream of what today would be like was not to be, that I wouldn't have the happy delivery room experience and photographs with my plump newborn baby like so many other mothers get. Frustration with myself for not somehow controlling my body so that Addie could have made it to at least 28 weeks and had a much better start in life and maybe even be on her way home by now as a result. Pride that our precious baby girl is such a fighter and that she has overcome so very much. Joy when I look at her and see how beautiful and absolutely perfect she is in spite of all of the challenges and difficulties she has faced.

It was a beautiful day; it would have been a gorgeous day to have a baby. I have learned to be thankful for what we do have, and not dwell on what we wish we had. We are so incredibly blessed to be able to spend today with Addison.. .so many things could have kept us from having her with us at all.

I have opted to focus on the blessings of Addie's early arrival. There are too many problems and issues in the world, in our world especially, and it's easy to get lost in them. My solution is to focus on the blessings so that I don't drown. We have gotten to spend an extra 3.5 months with our daughter - 3.5 months that most parents don't get. Don't get me wrong, they've been incredibly hard, but they are a tremendous blessing. We have learned so much about Addie's character and spirit in these 3.5 months. We've seen how beautiful her spirit is in the face of terrible adversity. We've seen her smile on days that would bring any of us to our knees. We've watched her develop from a tiny spec of a person with skin flaps for ears and eyes fused closed like a newborn kitten to a 4 pound angel with "regular everyday" ears and beautiful blue eyes that love to look around her little world in the NICU. We've held our breath when she was being fed 3 ml's of milk and now see her take 40 ml's every 3 hours. We've been through surgery, countless procedures and taps, more tests than we could ever imagine, and she's still here, doing her best to grow big and strong. There is no keeping this girl down, and we couldn't be more proud of her. We have been blessed to hold her off and on during these 3.5 months. I've gotten over my fear of giving her a bath (that was my biggest fear in bringing home a new baby - no idea why). I know the feel of her hand on my finger and I have memorized her smell. .. so many little blessings!

We are 3.5 months into this journey, and I have to say God has certainly picked out a "special" road for us. We've given up on trying to convince Him that He's mistaken us for other, MUCH stronger people. ..we still think He's mistaken, but we're resigned to the fact that this is our path for now and are doing the best we can with it.

Our current struggle is with food and weight gain. Addie is spitting up so much as a result of her reflux that she's not gaining any weight - in fact, she's losing weight. Everything we need to have happen requires her to gain weight. First and foremost, she has to gain weight to live. That's obviously important. Also, we've learned this week that she aspirates on thick and thin liquids - meaning she takes milk into her lungs with every swallow she takes. So she's back on NG (tube) feedings. The only way this can get better is for her to get bigger and stronger. Also, if we have a chance for her head issues to resolve on their own, she has to get bigger and stronger so that those clogged up vessels will unclog. And if God chooses not to allow either of those to resolve on their own (with His master hand helping out), we can't help her with either issue surgically until she gains weight. So this weight / feeding issue is huge. She's so skinny now; it's heartbreaking. She doesn't have the energy to smile or even really interact with us now that she's not getting enough calories to maintain her weight. What little energy she has is taken up by the reflux as she fights the pain and cries out for help. Her double chin and fat belly are nonexistant right now. She's so thin that she's having a hard time regulating her temperature. We're having to double up on her clothes and keep her wrapped in two blankets to stay warm. This is our sweet girl who has been such a hot box that she didn't need a single blanket, let alone two, to stay warm just a couple of weeks ago. Please pray that her medical team is able to figure out a way to help her keep enough food down to start to grow bigger and stronger early this week. Pray that God will reach down and touch her and help ease the pain caused by the reflux. Pray that things will start to go her way soon. ..that when things could go either way, they go well for her from now on. I'm so anxious for the day when she doesn't feel pain on a regular basis. ..I can't wait for her to learn that life doesn't mean pain and struggle, that it can be comfortable and safe. I keep promising her that better days are coming; I just don't know when. She has another tap on Monday, as well as a follow up eye exam. ..please pray both go well. I don't know how we will cope with more bad news if the eye exam doesn't go well and surgery is needed. I'm sure we'll cope with it like everything else, by waking up and putting one foot in front of the other, but it would be nice, just once, not to have to do that.