Sunday, November 25, 2012

Tis the Season...

Christmas. Usually it is such a magical and fun time of year. Thanksgiving really is my favorite but Christmas can take an easy second. With Thanksgiving, I feel like it lasts from September 1st to Thanksgiving Day as the grand finale. (halloween is in there just for grins)...You know? All the leaves, the weather change, baking and soups. For 3 whole months you get to celebrate the season of Autumn and thankfulness. I just love it. Pumpkin this, spice that. This Autumn Thankful season has been quite different for me this year. I started out September packing up for what I thought would be a 2 month stay in Ft. Worth area. (2 weeeks prior to Noah's birth and the a month and a half for surgery and recovery) Surely we would be home by Halloween. He even had a onesie for the occasion, knowing we wouldn't get out of the house. Well, Halloween came and went. Then I thought, surely we would be home by Thanksgiving. Nick, Ava, Noah and I would be snuggly in our house watching football and getting leftovers brought to us. Well, that was Thursday. We weren't home. No decorations went up, no pumpkins were bought or carved. Candy was bought of course, Nick bought it and ate it I'm sure. haha. I did take Ava trick or treating and she enjoyed it. Thanks to some friends, she even had a fun costume without me having to go out and buy one. There wasn't any thankful tree or leaf crafts for Ava. We didn't make pumpkin mousse or watch football in our jammies on Sunday afternoons on the couch. Nothing about this fall was or has been "normal" as I've known it and enjoyed it for so many years. I did get to make my Mimi's dressing and it turned out pretty good. Her crescent rolls that I tried to make this year ended up as crescent biscuits I guess you could say. It was stupid really, but they tasted ok. Maybe I'll try again next year. We were blessed to be with Nick's local family here and were thankful for the warmth and fun of the day. My mom and dad sat at the hospital with Noah and enjoyed themselves thoroughly. My sister stayed in North Carolina. No one was in their usual places. Yet, we are thankful. Thanksgiving isn't just the tangible. Thanksgiving is more than that and this year more than ever we realize it. I could go on and on about what I am thankful for right now. God has sustained us and is continuing to as we go down this road. This is the road he picked for us. I don't know why and I don't like it most of the time, but I am realizing more and more that the abnormal, unfair and sometimes terribly painful road is hard, but it's the road that leads us to Christ and not a false sense of security or pleasure in "the comfortable". You see, Christmas trees, the lights, sounds and smells of the season that is upon us now are all lovely and comfortable and I enjoy them so much. I so enjoy decorating my house, enjoying Christmas music and parties, making goodies for Nick's work crew, wrapping presents and making crafts, but none of that matters to me this year. Seeing everyone else enjoy it is hard for me, because I have an already 2 month old laying in his crib in A-4 of the NICU and all I can think about is how our new normal is going to look like, not if all my stockings are hung. I can't enjoy the sounds of Christmas music because my family might not be "home for Christmas", but spread apart. I can't bake in my home, wrap presents in my home, play with both of my kids in my home. Nothing is how it is "supposed" to be this time of year. Yet, here we are. God is working on me in this. I accept the hand I've been dealt and I know he has a plan for our family. I know that the struggle that is going on in my heart and mind might not exist at all next year. I might be enjoying all I love again with 2 babies and a hubby there to enjoy it with. But, right here and right now, it stings. It hurts to see all the pictures of sparkly trees and little family stockings, just like it hurt to see all the pumpkin carvings and thanksgiving family pictures. Everything just hurts right now. But, there is purpose. There is a plan. It is worth it.

There was a card on a little package that I found on the counter when I came back up from eating dinner and it said, "there will always be a beginning and an end, but what's important is the journey in between". It's true. I'm learning, Nick is learning, Ava is growing and Noah is healing. We are all on this journey together and we will get through the holidays together. Somehow, even with Ava not being able to be back here in the NICU, we'll find a way to make this holiday season bright, because, after all, it isn't about us. It is about Christ. Without Christ, none of us would be here, I would not be able to enjoy my family, my children, having a home. Without Christ coming to earth, I would not have a chance to go through this hard time, this journey that is leading me closer to Christ, making me a better wife, mother, person in general. Without Him, there wouldn't be any of this. So we will find Christ and his blessing, love, hope and plan in this coming holiday. We will cling to him and know that His plan is the best plan. His hand is the strongest. His ways are the highest. His thoughts are the loftiest and yet the most intimate. I know He will remain our home, even when our circumstances seem so foreign.
Thanks for your prayers and love as we continue to make it through this.

Noah has been back on his feeds since Friday. His blood cultures have come back clear since they got them earlier last week. He got a new pic line placed so they don't have to keep digging for new iv's all the time. Hopefully that will help his veins to have some time to heal, his bruises to go away and for him to not be so irritated. He will be on TPN and lipids until he is on full feeds again. He is still having to have blood thinner administered in shot form. I pray that will be over with before we go home, but we'll see. (pray for no more clots) He has been resting a lot since we got to the NICU. It is so much more quiet and easy to rest here. He loves to be swaddled and will be getting to wear more clothes and things now. (the things you take for granted until you don't get to put clothes on your newborn)He loves his passy and will be possibly trying out a bottle sometime this week. We'll see how things go. Our next big hurdle is eating. Here is how I can explain it simply....
It takes a LOT of cardiac output (heart function) to eat, for a baby. Think of it like running a marathon for you or I. It takes so much for a little one to eat "normally". Sometimes a heart patient baby just simply does not have the cardiac function to eat and not get too tired, causing the baby to not get enough to eat, burn calories while they eat, or put themselves in distress while eating, etc. So, they give the baby a shot at it, to see how their body and heart does. They also watch closely to make sure the baby does not aspirate any milk into his/her lungs. After being on a ventilator for 51 days, it can be a hard thing for a little one to swallow. So they will monitor that as well. If Noah cannot do well with eating with a bottle he will have a g-button placed for feedings (a feeding tube directly to his stomach) that we will be able to go home on. We'll see how he does. All in all, we are just slow and steady with healing. He truly has made progress. Much progress. Sometimes it seems slow and non existent, but he really is doing good. Please pray:
for no clotting
for his cardiac function to be enough to eat normally
for his bruises and veins to heal
for him to lose more tubes and monitors
for his heart to gain strength and function
for swallowing
to not aspirate as he begins to eat

for me as I adjust to december coming in a hospital.
for nick and I both as we are still apart a lot.
for ava in all things toddler. She is basically a 2 yr old these days. crazy how big she is acting and the things she is doing at just almost 18 months. She amazes us with her words, her silly character and sweet spirit.
guess that's it for now...
thanks and love

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