Worship from Whining....

to grant to those who mourn in Zion— to give them a beautiful headdress instead of ashes, the oil of gladness instead of mourning, the garment of praise instead of a faint spirit; that they may be called oaks of righteousness, the planting of the LORD, that he may be glorified. Isaiah 61:3

Tuesdays are always like this. In fact, Sunday at 2pm through Tuesday afternoon (sometimes wednesday), I fight tooth and nail with Satan as he tries to get a foothold in my heart. Sunday at 2 is usually when my husband leaves for the week, sometimes taking with him my Ava, sometimes my parents, even friends that have come in usually go home around then too. Everyone leaves on Sunday afternoons. Thus begins the sadness, loneliness, frustration and the road to the next weekend. All the joy of family time, laughing, holding my baby girl, being held by my hubby, the companionship of family and friends, the hope and strength of my support system drives north on 287 as I go settle back into A-4 in the NICU. Noah's worth all the pain and struggle, the loneliness and heartache, the restless heart and constant question in the back of my mind.
Why Noah?
The nagging in my mind never quits, why Noah, why us, why hypoplastic heart, why is he still here, even. Why are these weeks dragging on and on and why are the months skipping by me like nothing. He's already 2 months old. Where is the time going? My heart and my mind go up and down, up and down until I finally just break. The whining then starts...it's ugly really. I can get truly annoying, I'm sure, especially to nick. I ask the same questions, complain about the same issues, wonder the same things, etc. Same struggle different day. The grieving never completely goes away as I slowly begin to understand just how big of a deal this all is.
I really do rejoice in ALL the accomplishments Noah has made. I rejoice in the littlest of victories and I try to not see the littlest issues as major setbacks. Sometimes it all becomes mush and the littlest thing like a blood draw seems like he is being tortured to me. A monitor going off until the nurse comes to check it can become a sharp pain in the head. An echocardiogram to check heart function can seem like a huge opening for a flood of problems to come rushing in. It all just gets tiresome and negative after awhile. So today, as I have been struggling with all of it, (yet again), I realized that surely there is a way to use all of this heartache, questioning and even grieving....

I listened to Pastor Matt's third sermon in his latest series, "When God Seems Like the Enemy". It was the perfect timing to hear the words, "God isn't fair". First of all, because I needed a slap in the face to get me out of my whining fest and second because it reminded me that Christ dying for me, for you, for Noah, etc was not fair. He didn't deserve to be crucified. I do. He didn't deserve to go through what he did, but he went through it in obedience and worship to the Father. Worship. So, does that mean, that everytime I hear my baby boy cry because he is getting his veins dug into to get a blood draw, that it is worship and that I can send up my frustration to God but in the form of worship? So each day we find ourselves still in the hospital, still in ft worth, still spread apart, that all of this enduring is worship? Please, let all of this have a purpose, Lord. If all of these long days, long weeks, hard nights, rough moments, surgeries, tests, iv's, blood draws, therapies, etc etc all be a means to worship you. May the rest of our lives, be worship. I think of all the trips we will have to ft worth, to the dr's, for surgeries, for check ups, for heart caths, for follow ups...all the struggles we will endure with having a child with HLHS, all the stuff we don't even know is coming in life in general, Lord....somehow I can face tomorrow, knowing all of this is worship. Worship makes my tears meaningful and my struggle worth it. Worship is finally, somehow, becoming more than music. I am finally learning what it means to have a heart of worship, not just a head full of "worship" songs.
It is one of the hardest things to do, leaving your baby in a hospital room as you drive back to the place you're staying. But, it is part of it right now. None of this is how I would ever want my life to look like or anyone else's for that matter, but it is where we are at. So, I will try to find ways to adapt and be thankful. I am grateful for a husband who is patient with me, who loves me at my worst and encourages me to be my best. I am thankful for him and I know that God made us a team for a reason. I am thankful for him and how he takes care of our baby girl, all these days we are apart. Wow. There will be a day when we are at home, the 4 of us and we can close the blinds, lock the doors, turn off our phones and hide away. We can soak each other up and make up for lost time. I long for that moment that I am sitting with both babies in my arms in the recliner, with a blankee and a big long nap is shared.
I can confidently say, that would be considered worship too, at this point. :) Both babies, in my arms...they are both His anyway, He just allows me the privilege to be their mommy.

Noah had a pretty good day. He received blood and that is most likely for volume and I think it ended up helping his oxygen saturation so they could turn down his oxygen some. He got an echo done and hopefully I will find out how that went, tomorrow. I am also waiting to find out how his sonogram went to look at the clot he has been having. I don't have much to update on him other than that and when I get new info I will pass along. Please just pray that his cardiac function continue to improve. Please pray that he continues to be able to be weaned off of the oxygen now. Speech therapy will be coming by to evaluate him to see about starting a bottle. They are looking at changing his formula and maybe adding some of my milk to it. He has the wound vac back on til next monday. Please pray that his incision closes completely and is healed well by then. Hopefully he will get a lot of rest.
Thanks for the love and prayers.
blessings,
shaina

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.

Update:
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
shaina