I'm not completely sure if anyone really cares what we're "doing these days", but I suppose it helps me to let the people who are interested know about how we are doing and what's going on since February 22.
The last few weeks have been crazy and fast paced. I've hit the ground running since coming home with Noah's service(blizzard before that), getting back on the worship team at church(which I LOVE), spring cleaning, as well as, we've been living out of suitcases for 6 months cleaning. We have been doing well with our healthy lifestyle changes and so we are adjusting to all of these things. Things have been so busy and I've loved it. Lots of family and friend time, Bible study, church, lunch with friends, and just getting reacquainted with Amarillo. I have obviously had some incredible moments of loss and feeling like I don't know what life means from here. I've had times of wondering if I'll not think of Noah as much or if people will forget him. All the normal grief things. I have also realized how spoiled I was with being in the hospital with him 24/7 because I had hours to spend in prayer, journaling, reading the Word, doodling in my journal, soaking up quotes and words from others. I am having to fight the world again on time, energy and space to get spread out and do study, prayer and journaling. It is amazing how in a matter of a couple of weeks, satan can pry in and use our "busy home life" which can be good, to cut into time with the Father. Noah is healed and whole and so that big "prayer request and constant subject I dealt with God on is gone...so my mind has all this space to roam freely and I have to ask the Father to bring me back in and focus. There are so many things going through my mind these days with things that have to be caught up, done and redone. So much to do. I like it and at the same time, I have to watch myself or I just fill up our days and don't give us time to just rest and be together. So many adjustments as we settle back in. I'm so thankful to be home. We are praying heavily about when and how to sell our house and look for a new one. We are discussing really pushing our freelance design business and how God could use our skills to really grow that into a lifelong business and goal. We are continuing on our health journey as we eat lighter, healthier and workout regularly. We are going to be getting our garage cleaned out and sorted through so we can start with a garage sale and then give away and get rid of things from there. Life is just falling back into place and we are thankful.
Ava is keeping us so busy. She is a doll. She has so many sentences and is only 21 months old. She is talking our heads off! haha. She sings all the time and has a song for everything. She is a little parrot. She loves elmo, abby cadabby and all the sesame street crew, she like to call Blues Clues "puppy" and she likes to watch that old show on netflix. She enjoys playing "set go" all around the house when mimi and pop come over. She loves playing with her cousins and her friends at playgroup on Wednesdays. She walks right into her class at church and loves it. She brings home sweet crafts and I love it. She loves her baby dolls and taking care of them. it is so sweet. She loves to look at picture books, especially of her bubby and our entire journey. She looks at old pictures of her and says, "bubby"! Haha, we have to tell her that is her! :) they did look alike. She doesn't really know what life with bubby is, so she doesn't ask about him. We don't push it either. She sees his blankee, his lovie or a picture and says, "bubby oooohhh". :) We don't ask her about him or push it though. she is only 21 months and she knows all about bubby that she needs to. As she gets older, she'll know more and start to understand how important this part of our life has been to us. She lights up our world, she comes up to me and says, "momma momma" in the sweetest voice if she sees me crying or something. She is just a precious, sweet hearted and bright spirited little sunshine girl and I am blessed to call her mine.
I am beginning 2 new lines of paintings. They will both be available in a few weeks. It's neat to see how God is using this time of grief to really spur my creative flow and help me produce work that I love and enjoy and also provide for us at the same time. Two of my favorite things, hearts and birds. :) so excited.
I suppose that's all for now. Please continue to pray for our sweet heart babies across the country, especially at Cook's in Ft. worth and our sweet friend in Georgia, Madison.
Also, we're planning on helping out our friend Audree Gomez, another "sweet heart" by going to Blue Sky this coming Monday night. Tell them it's for Audree. Thanks!
much love and many thanks for all the support and prayers, continually.
Noah's mommy
Friday, March 15, 2013
Thursday, March 7, 2013
Remember That Boogie Man?
The Boogie Man
There, you can meet him in that post from almost a year ago.
We took Ava to see Veggie Tales Live last Saturday. She didn't really have as good of a time as I thought she would. I realized later, that it was sort of my fault. See, I had this whole Saturday planned out for family fun and just being together. It has been so long since we had a day, in Amarillo, together, without stress looming all around us and so we had a whole day to be together and enjoy each other, the three of us. We slept in, had donuts, went shopping for a few things at Mardel for our sweet friend Lexi and her mommy, Judith. We went to visit them and then went to lunch. We enjoyed lunch together and had some time before veggie tales so we went and got ice cream! Ava and I have shared ice cream, probably for too long... but it's our thing. So, we went and enjoyed and then went to walmart for a couple of items. We had a sort of accident with a faulty diaper, so we bought her new pants, got her changed and went to the show. We got to Veggie Tales and she was pretty excited and then all of a sudden....tired, cranky, no-nap Ava came around. Poor thing. She was sweet and watched from her daddy's lap, but she didn't get up and dance and laugh and have a "fun time" like the rest of the kids.... It kind of made me cranky as well. I mean, we did spend 40 bucks for nick and I's tickets. haha. I didn't want to "waste" money and leave, but she only made it until a little bit after intermission and then she started saying, "go home" "go home"....from Veggie Tales? Really, Ava? wow. So, we got up and left and she was asleep before we left the parking lot. We put her in bed, I went to bed and we both ended up napping for 2 hours. I woke up and it was dark outside. I went in and started talking to nick about it all and realized that they had played, "God is bigger than the boogie man" song at the show and it kind of brought it all back to me. God brought me that song when we started this journey and as I was trying so hard to have a family, fun, "happy and ok" day, I was doing it in my strength. I wanted so bad to just have a fun, normal day and I didn't think about her lack of napping, the fact that we had just endured the longest week of our life and that we had just given our son back to the Father. I just wanted so bad to have a normal day....
It took a few days, but I began to realize that our new normal doesn't have to look or be anything I already know. In fact, it looks like and will become something we have never known. We three are adjusting to life back together. I got used to being alone, doing things on my own, when I wanted, where I wanted. I was always leashed to the hospital, but at the same time, I didn't have anyone to take care of besides myself. I am now back into housewife/mommy mode and I love it. I know this is a deep deep calling on my life and as I sit and write about it, I just love the fact that Ava watched "puppy" on netflix (blue's clues) and then fell asleep after 2 episodes and is now sleeping soundly on the couch for nap. See, I got to feed breakfast to Ava and then snuggle and do our devotional together (out of an incredible book, Jesus Calling for kids-thanks sissy) I cooked lunch, had my pawpaw over for lunch and Nick of course, cleaned up lunch as Ava watched her show and now she's sleeping, I'm writing and when nick gets home we get to work out, play, (I have to catch up the bills/budget) but we get to be together and just be a family, without trying so hard. We didn't work out before, we didn't have a healthy cooked lunch before, we didn't have devotional together before, we didn't have such an easy nap time before..... I didn't have to try so hard to find a happy normal, I just had to let God show me how to do it, the new way.
Noah made things new. He made things fresh again. I won't ever stop missing that boy. Ever. Yet, I find myself using my missing him as fuel to push through this new field in our life that hasn't been harvested before. There is health ahead, life ahead, blessing and newness ahead. (I'm sure there is a whole other post in that one subject of harvest) Nick has been pushing me and encouraging me in all of this and I am thankful. He lets me be sobbing sad, silly happy, unstoppably "nesty" like when I was pregnant, but it is just that I want this new life to be fresh and so fresh things have to happen in our house. :) He keeps me laughing, smiling and loving.
So, to tie in this boogie man....I suppose life after a death is a big boogie man. God is bigger. I remember thinking that the boogie man of HLHS was the scariest thing in the world, but I realized God was bigger than that. I remember thinking we would never get to a happy place through it all, until Noah came home and even after that, SO much ahead in life for him would be terrifying. I would do all of it in a heart beat to have him here, but God proved to be more sovereign than my fears, my worries and my plans. I never thought Noah's healing would be heavenly until a month or so ago. When I realized that was the boogie man of the moment, I was reminded that God is bigger. When it felt like the boogie man beat me and got the best of me that Friday night, God immediately stopped that feeling and overwhelmed me with hope, peace and confidence. That's what He does. He saves the day. He kills the monsters. He is bigger than the boogie man. He longs to fight for you. As Beth Moore put it in her session on Deuteronomy I watched last night, "God is love, so he loves. He does what he is." paraphrased, but still. Woah. God does what he is. (another paragraph that could expand into a whole other post, at some point it probably will)
God is so mysterious. Will I ever really know why he gave me Noah for 5 months? Probably not. In fact, that's ok. It keeps me searching for more reasons and more lessons, more moments and more hope. Surely he didn't just send Noah to this earth, to show me God's love on a deeper level, but maybe he did. I like to think that God loves me enough to pursue me, he is so relentless for me that he would bring me a child, let me know that child for a short time, but enough time to finally, really, know God better than I have since I was little and then take Him back up to himself to prove that he is God and unchanging. Faith like a child? Faith through a child? I know God used and is using Noah and his life to reach people, I get told everyday, but I just can't shake the thought that he was just for me. God gave me Noah, to reach me in a place I didn't know was there. There is an empowerment, an encouragement, a hope and a purpose in that, that makes more sense the more I step back and see the big picture. I will always know that God used Noah and will continue to use his story to change people's lives. I also know, that I got to be the one to know him the best and for that, I am forever changed, grateful and proud.
Now, to continue living life for the one who makes this life all it is. To keep trusting that God IS BIGGER than that boogie man. He is. Try him. Just ask him to kick that boogie man in the rear....I'm quite certain he will show you Himself, in only a way that He can.
There is a song I've discovered recently. You have to listen to this.
This sums up the last 6 months of my life.
Enjoy.
Love, blessings & thanks,
Noah's mommy
Sunday, March 3, 2013
Brussel Sprouts
There have multiple times in the last 10 months that I have asked the question to Nick, "what just happened?". I am at that place again, where everything just seems like a big blur. Did that really happen? Did we really have a son, spend almost 6 full months only seeing each other on the weekends, missing my girl every few weeks, saying goodbye every Sunday, getting our son through multiple surgeries, procedures, months of hospital life, sleeping in different places, crying many tears, waiting, praying, hoping for him to get better so many times all to hold him until the minute he died and then come home and start life where we left off? It feels like that. I miss certain things about Ft. Worth. I miss the lack of wind. haha. I miss Pie 5 pizza. I miss the walks to and from the Ronald McDonald House. I miss my gals at RMH. I miss late night talks with them. I miss the ice in the PICU. nom.
I miss my friends at Cooks. I know it sounds silly, but I grew to love many people there and all of a sudden I wasn't there anymore. I had daily conversations, got to know about their families and kids, prayed for them during hard times, listened as some of them went through life changes, went on vacations and then came back refreshed and with lots of stories to tell. We even had a nurse take care of Noah on her last night of work before having her baby and then when she came back from maternity leave we were still there. Ya. I'm not sure what just happened over the course of the last few months, but all of a sudden I have more than just an emptiness from Noah being gone. I have a whole life that is not there anymore and now I am trying to readjust to the life I had to leave, yet I learned so much while I was gone that I feel that if I come back and try to make life "normal" I will be doing myself and my family a disservice to go back to how "things were".... Did any of that make any sense?
I miss him. I miss him more than I can tell you, more than words can say. Some people have wondered why I have been so "positive" so "uplifting" so "happy" in my posts recently, well, it keeps me focused. I'm not lying when I post anything. The joy I have is real. The hope I have is real. If you need to know how to have that, message me. BUT, Trust me, there is much grieving going on. Don't worry. Don't think I'm some super human who has everything under control and is just so relieved to have all of the turmoil and hurt over with at the cost of my son's life. I'd rather be at this long journey and have Noah here so much of the time. I do. Yet, I know that Noah is so much better where he's at than on earth, not living, not thriving, not getting to be a baby or do baby things, not growing up at home, around family and friends. I know that Noah is whole, in his form that only heaven knows. He's not an angel, he's not 5 months old in heaven. He is perfect and whole. I believe that he knows my family who has gone before, He has seen the face of Christ and is worshiping the Father, completely happy and healthy. I know when I see him in heaven, he will recognize me and it will have seemed only like a day to him. Oh how I long for that day.
In the mean time, a new life is straight ahead. I don't know what it looks like, but I know it is going to be better than what life was before Noah. Before life with Noah I was lacking. I lacked self esteem, I lacked confidence, I didn't think I was good enough to do "great things". I didn't know how God could even use a little "good girl" from Canyon, who did everything "right" to advance his kingdom or bring others to the Lord. I did everything I was supposed to do, in order at that. Graduate high school, go to college, meet a guy, get married, graduate college, live in a cute apt, buy a house, have a baby, go to church all the while, sing on the worship team, work vbs and go to small group. Life was plain, it was normal, it was easy. God knew what I needed. He knew that life before Noah was being half lived, it was easy, it was comfortable. Life before Noah was predictable and it was lacking a lot. It lacked spirit, it lacked confidence. Life before Noah was sad in many ways. It wasn't depressing, but it was darker. Noah lit up life, from the moment we knew he was coming. Noah gave us excitement, he kept us learning, growing and seeking. Noah forced me to leave my comfort zone, make new friends, go to new places, find myself for once, outside of my familiar and really stretched me to trust that wherever I am, God is there also and More than that, he has gone before. So, I learned to try new things, trust God in everything, to take risks, to live fully everyday, to experiment, to create(even in the midst of chaos), to love deeply, to be friendly, to journal, document, soak up, and just live. He taught me to rest, sometimes. There were many times he kept me up way too late as well though. He helped me to learn that this "faith" I have, is available to anyone, yet it is a daily struggle to continue in it, asking for more, and really live it. I learned to quit looking at my circumstances as punishment or even "lessons" and began to look at them as opportunities. I realize now more than ever that Noah's life was an opportunity for God to reach people who were cold and hardened prior to being introduced to Noah and his journey. I realized that God used Noah to not only change me, but to reach many many people who would have not been reached otherwise. Somehow, when I'm in the midst of deeply missing my baby boy, I can think upon all He taught me, all he touched and how God used him to touch many people on a deep level.
So, we bought brussel sprouts tonight. I've wanted to test them out with some different cooking methods, but one of the reasons we bought them is because Noah has pushed Nick and myself to better ourselves and not regress into depression, unhealthy gluttony, etc. We have felt very convicted about using this life event to spur us on into healthy living, physically, emotionally, spiritually of course and to also just soak up life and enjoy every part of it. So, we began a new workout regimen. geez. We are stocked on healthy foods and we are digging in, in all areas of life. What more could we do for ourselves as we heal and recover from such trauma, than to be healthier and more vibrant for our daughter, as well as ourselves.
What else. I feel like I have pages to say, all these things that I am needing to get out and tell you all, but they are all just stuck. I do want to thank those who came to the visitation Thursday night. Nick and I are still just blown away by the amount of people, from all walks of life and all layers of our life who were in attendance. We are just thankful and beyond blessed! wow! We are just so amazed by the outpouring of love and care over us and our son.
I miss him. I miss his smile. I miss snuggles late at night while we watch Finding Nemo. I miss sitting him up in bed and him looking all around. I miss his soft hair. I miss his little nose. I miss looking into his brown eyes. I miss his sweet cry.
You know what though? I'm thankful I don't have to say goodbye every night, call the PICU every morning to see how the night went, walk into his cubicle and see some new mechanism or new iv placement, going over rounds everyday and the plan for the day. I don't miss watching him get everything under the sun done to him, I don't miss there not being anything anyone can do for him(especially me, I was so tired of not being able to make my baby better), I don't miss him crying because he hurt, I don't miss him having to be intabated and extabated over and over. I don't miss all the bruises I'd find from lovonox shots, iv placements, etc. I don't miss him swelling so big his skin would tear. I don't miss not ever getting to walk around with him. I don't miss him being leashed to the bed by pulse ox monitors, leads, blood pressure cuffs, oxygen tubes, etc. I don't miss it. I don't miss watching him suffer everyday. I don't miss him not getting to wear clothes or be held all day long. I don't miss him not getting better. ever. I honestly know that the things I miss, are little in comparison to the things I don't miss. It makes it a bit easier, it really does, but nothing will ever change the fact that I won't get to watch my son grow up. I won't get to hear him say mommy, take his first steps, etc etc. A part of my person is gone. There is a deep cavity in my heart, but I know that Christ is healing me, just as he was faithful to heal noah.
I know God's plan for our family is wonderful. There are many good things ahead. I am more proud of myself than I ever have been in my life. I like me more than I ever did, but still desire to make changes of improvement and betterment. I am closer to Christ than I ever have been and I am desiring him more and more.
I miss him, but I am thankful for the life I won't miss now because I knew him. I carried in my womb, one of the most influential people in my entire life. I know many mothers would say that, but my son has made me a better everything. The future is brighter than ever now. The dark moments come, but the beauty of God's grace and his loving kindness towards me in those moments, brings light and therefore, pushes me forward.
Thank you sweet son for teaching mommy to be herself, to like herself and to be proud of herself. No one else has had such an impact on her like you. You were a joy to everyone who ever met you. I just pray I can be the best version of me, everyday, now that you're gone. Love you sweet bubby.
Noah's Mommy
I miss my friends at Cooks. I know it sounds silly, but I grew to love many people there and all of a sudden I wasn't there anymore. I had daily conversations, got to know about their families and kids, prayed for them during hard times, listened as some of them went through life changes, went on vacations and then came back refreshed and with lots of stories to tell. We even had a nurse take care of Noah on her last night of work before having her baby and then when she came back from maternity leave we were still there. Ya. I'm not sure what just happened over the course of the last few months, but all of a sudden I have more than just an emptiness from Noah being gone. I have a whole life that is not there anymore and now I am trying to readjust to the life I had to leave, yet I learned so much while I was gone that I feel that if I come back and try to make life "normal" I will be doing myself and my family a disservice to go back to how "things were".... Did any of that make any sense?
I miss him. I miss him more than I can tell you, more than words can say. Some people have wondered why I have been so "positive" so "uplifting" so "happy" in my posts recently, well, it keeps me focused. I'm not lying when I post anything. The joy I have is real. The hope I have is real. If you need to know how to have that, message me. BUT, Trust me, there is much grieving going on. Don't worry. Don't think I'm some super human who has everything under control and is just so relieved to have all of the turmoil and hurt over with at the cost of my son's life. I'd rather be at this long journey and have Noah here so much of the time. I do. Yet, I know that Noah is so much better where he's at than on earth, not living, not thriving, not getting to be a baby or do baby things, not growing up at home, around family and friends. I know that Noah is whole, in his form that only heaven knows. He's not an angel, he's not 5 months old in heaven. He is perfect and whole. I believe that he knows my family who has gone before, He has seen the face of Christ and is worshiping the Father, completely happy and healthy. I know when I see him in heaven, he will recognize me and it will have seemed only like a day to him. Oh how I long for that day.
In the mean time, a new life is straight ahead. I don't know what it looks like, but I know it is going to be better than what life was before Noah. Before life with Noah I was lacking. I lacked self esteem, I lacked confidence, I didn't think I was good enough to do "great things". I didn't know how God could even use a little "good girl" from Canyon, who did everything "right" to advance his kingdom or bring others to the Lord. I did everything I was supposed to do, in order at that. Graduate high school, go to college, meet a guy, get married, graduate college, live in a cute apt, buy a house, have a baby, go to church all the while, sing on the worship team, work vbs and go to small group. Life was plain, it was normal, it was easy. God knew what I needed. He knew that life before Noah was being half lived, it was easy, it was comfortable. Life before Noah was predictable and it was lacking a lot. It lacked spirit, it lacked confidence. Life before Noah was sad in many ways. It wasn't depressing, but it was darker. Noah lit up life, from the moment we knew he was coming. Noah gave us excitement, he kept us learning, growing and seeking. Noah forced me to leave my comfort zone, make new friends, go to new places, find myself for once, outside of my familiar and really stretched me to trust that wherever I am, God is there also and More than that, he has gone before. So, I learned to try new things, trust God in everything, to take risks, to live fully everyday, to experiment, to create(even in the midst of chaos), to love deeply, to be friendly, to journal, document, soak up, and just live. He taught me to rest, sometimes. There were many times he kept me up way too late as well though. He helped me to learn that this "faith" I have, is available to anyone, yet it is a daily struggle to continue in it, asking for more, and really live it. I learned to quit looking at my circumstances as punishment or even "lessons" and began to look at them as opportunities. I realize now more than ever that Noah's life was an opportunity for God to reach people who were cold and hardened prior to being introduced to Noah and his journey. I realized that God used Noah to not only change me, but to reach many many people who would have not been reached otherwise. Somehow, when I'm in the midst of deeply missing my baby boy, I can think upon all He taught me, all he touched and how God used him to touch many people on a deep level.
So, we bought brussel sprouts tonight. I've wanted to test them out with some different cooking methods, but one of the reasons we bought them is because Noah has pushed Nick and myself to better ourselves and not regress into depression, unhealthy gluttony, etc. We have felt very convicted about using this life event to spur us on into healthy living, physically, emotionally, spiritually of course and to also just soak up life and enjoy every part of it. So, we began a new workout regimen. geez. We are stocked on healthy foods and we are digging in, in all areas of life. What more could we do for ourselves as we heal and recover from such trauma, than to be healthier and more vibrant for our daughter, as well as ourselves.
What else. I feel like I have pages to say, all these things that I am needing to get out and tell you all, but they are all just stuck. I do want to thank those who came to the visitation Thursday night. Nick and I are still just blown away by the amount of people, from all walks of life and all layers of our life who were in attendance. We are just thankful and beyond blessed! wow! We are just so amazed by the outpouring of love and care over us and our son.
I miss him. I miss his smile. I miss snuggles late at night while we watch Finding Nemo. I miss sitting him up in bed and him looking all around. I miss his soft hair. I miss his little nose. I miss looking into his brown eyes. I miss his sweet cry.
You know what though? I'm thankful I don't have to say goodbye every night, call the PICU every morning to see how the night went, walk into his cubicle and see some new mechanism or new iv placement, going over rounds everyday and the plan for the day. I don't miss watching him get everything under the sun done to him, I don't miss there not being anything anyone can do for him(especially me, I was so tired of not being able to make my baby better), I don't miss him crying because he hurt, I don't miss him having to be intabated and extabated over and over. I don't miss all the bruises I'd find from lovonox shots, iv placements, etc. I don't miss him swelling so big his skin would tear. I don't miss not ever getting to walk around with him. I don't miss him being leashed to the bed by pulse ox monitors, leads, blood pressure cuffs, oxygen tubes, etc. I don't miss it. I don't miss watching him suffer everyday. I don't miss him not getting to wear clothes or be held all day long. I don't miss him not getting better. ever. I honestly know that the things I miss, are little in comparison to the things I don't miss. It makes it a bit easier, it really does, but nothing will ever change the fact that I won't get to watch my son grow up. I won't get to hear him say mommy, take his first steps, etc etc. A part of my person is gone. There is a deep cavity in my heart, but I know that Christ is healing me, just as he was faithful to heal noah.
I know God's plan for our family is wonderful. There are many good things ahead. I am more proud of myself than I ever have been in my life. I like me more than I ever did, but still desire to make changes of improvement and betterment. I am closer to Christ than I ever have been and I am desiring him more and more.
I miss him, but I am thankful for the life I won't miss now because I knew him. I carried in my womb, one of the most influential people in my entire life. I know many mothers would say that, but my son has made me a better everything. The future is brighter than ever now. The dark moments come, but the beauty of God's grace and his loving kindness towards me in those moments, brings light and therefore, pushes me forward.
Thank you sweet son for teaching mommy to be herself, to like herself and to be proud of herself. No one else has had such an impact on her like you. You were a joy to everyone who ever met you. I just pray I can be the best version of me, everyday, now that you're gone. Love you sweet bubby.
Noah's Mommy
Thursday, February 28, 2013
If You're Wondering If I'm Grieving
Yes. Deeply. Am I mad? No. Am I sad? Sometimes. Am I relieved? Yes. Am I missing a part of my being? Yes. Am I thankful? Yes. Do I have lots to share with y'all? Yes. Tonight? No. In the coming days and weeks. Certainly.
Thank you. Thank you. Thank you.
I am beyond words at this point. I am absolutely beyond words.
God is certainly in control. My son is healed. Our life is more complete and more purposed than ever before.
I'm so tired, my eyes are crossing. :) Bed is calling.
I love each of you.
Noah's mommy
Thank you. Thank you. Thank you.
I am beyond words at this point. I am absolutely beyond words.
God is certainly in control. My son is healed. Our life is more complete and more purposed than ever before.
I'm so tired, my eyes are crossing. :) Bed is calling.
I love each of you.
Noah's mommy
Sunday, February 17, 2013
Releasing It. Starting Fresh. Update.
I don't know what to even put anymore. I feel so much bubbling out of my mind and heart and nothing really comes out in a form that makes any sense. Sometimes I just want to get on here and complain. There are times when I want to get on here and make a list of all the people who have sent cards, gift cards, money, gift baskets, emails, calls, etc and thank them. There have been a few times when I have wanted to get on here and "set people straight" about what bothers me and what I feel like I should teach people. There are days when I could force myself to get on here and make some happy post about how good God is and how he is so amazing and even in all the pain and questioning I maintain my allegiance and onward we go in the journey. I have wanted to get on here and curse God and be mad about every bad thing that is going on, has gone on and all the hard times we will face in the future. What does this blog even do anymore? The longer we go on, the more trivial it seems. I know there have been some special people in my life who have been somehow blessed by this blog. I am thankful that the Holy Spirit finds ways to use my feeble attempts at keeping y'all informed in order to refresh souls and minds. Thank you Lord. I suppose tonight I just feel defeated. Is it ok if I complain on here? Does it make me sound ungrateful? Is it ok that I want and need to unload my real feelings? Is it ok that I try so hard to make my updates sound ok and encouraging even though in reality, sometimes, they aren't really ok and encouraging. I want to make sure y'all know I am deeply thankful and truly grateful for all God is doing and has done in our life. I know that He has a plan. With that said... I am confused and sad a lot. It has been a little over 5 months since I "moved" down here. It has been a little over 4 months since Noah was born.
When we started this journey ava was 15 months old. She was still in a high chair all the time, she was barely using any real words, she needed softer foods, but was getting lots of teeth, she used a pack and play in the begining, she was in 12-18 month clothes. I feel that I have missed so much of her little life in the last 5 months. She has so many many words now. She has a mouth full of teeth, and working on her 2 yr molars, she loves to sing, she knows what she wants and asks for it. "deenk(drink), luh you (love you), aba anay (ava renee), hungee(hungry), chanch you (thank you), elcome (welcome), cue me (excuse me), shake yo booty yayaya (shake your booty ya ya ya...if you needed that translated) haha. She just amazes me with her knowledge, her manners, loving heart, precious voice. When she walks into the hospital she says, "bubby bubby bubby", she is sweet to make friends in the playground there, she eats well, plays well, she is just amazing. All of this happens amidst the craziness and dysfunction. I'm so thankful, just sad some days because I feel that I have missed so much. I hate saying goodbye, every two weeks. I hate not giving her baths, doing her laundry, making her meals, cleaning her mouth, snuggling for nap, hearing her laugh and babble and sing. Lord, I know you hear my heart but, I am so weary of missing my baby.
When we started this journey, Nick and I had only been a part for "days" at a time, not weeks at a time. We knew we were in for a crazy journey, we knew we would be ok, but we also thought we knew the stresses we would endure. We had. no. idea. Truly, we had no idea the stress, the pain, the grieving, the frustration, the travel, the logistics, the needs, the lacking, the loneliness, the single parent complex, the long nights, the short weekends...we had no idea how long this would drag on and on and on. We didn't know that we would have to watch our baby boy almost die, endure 3 open heart surgeries, various procedures, endless days of drugs, ventilator, blah blah blah. You have never been closer to your spouse than in the moments that you have to talk heavy subjects like your child's life or death, like when you have to just sit and hold your little 4 month old's hands while he is semi paralyzed and under sedation to stay calm, when you both realize that there is nothing you can't do together, but you'll have to keep enduring. I miss his hugs when it's lunchtime on a Tuesday and he comes home for lunch. I miss late night talks about deep things before Star Trek and then bed. :) I miss grocery shopping and finding little things for his lunches that make him smile. I miss him driving me everywhere, (yes dear, I'm not lying, I really do miss it haha) I miss snuggles on the couch while we watch Ava play, I miss cooking dinner and I miss holding hands in church. I miss his goofy jokes and his mindless trivia rants. I just miss him. Friday night late, through Sunday afternoon is not enough time. We decided early on we would have to fight for us, make time for us even in the long week of loneliness, seek the Lord in all decisions and know that whatever happens on this journey that we would do it together. We are best friends, we are the best team I know. I am blessed and thankful for Nicholas and cannot wait for the day that we are reunited for good. Marriage, can be difficult in the good times, the easy and normal times, but especially in trauma, long suffering and hardship. We have clung to the Lord during this time, we have had to put our selfish needs aside and continually focus on the other's needs in our hard situation and that has blessed us each immensley. God has protected us and we are closer and more in love today than we were before this journey started. We have learned more about each other, drawn closer to one another, realized more about each other and are more appreicative of each other than ever before. Thank the Lord. We are so blessed.
My dearest Noah. He is precious. He is the strongest person I know. He is a warrior. He is my hero. I cannot tell you how much this boy has accomplished in his 4 months of life, but it would take forever. He is 13 lbs of steel and yet he has the most sweet eyes, wisdom is in his face and his half of a heart beats by the grace of God and his handiwork by men. I am beyond grateful and honored to be Noah James' mommy. Someday he will know that I have cried more tears over him than anyone else, I have lost more sleep over him than any other time (besides maybe with his sister, but for totally different reasons...haha). Maybe someday I will tell him of all the places I've "lived", chic fil a and cafeteria salads I've eaten, IV beeps I've had to ignore, monitor alarms I've had to plug my ears from, rounds I've listened to, procedures I've had to leave the room for, times I've had to ring the picu doorbell, etc etc. He is worth it. All of it. When I want to give up, give in, walk away and throw in the towel, he doesn't. He stays in this game, he never backs down, he doesn't give up. He does not know how to not fight for his life, he doesn't know what giving up is. He doesn't comprehend anything outside of hospital life, he doesn't know what it is like to be held all day long, to be rocked in the comfy chair at home, drink from a bottle, be held by everyone in his family, be played with on the floor, tummy time, rolling over, etc. He doesn't know any different than this terrible hospital existence. It pains me as a mommy to know this, experience it with him. I don't get to make him cereal right now or puree`s. I have rarely gotten to even dress him. He doesn't know that this is "wrong". He doesn't know what it's like to have his family around all the time. He doesn't know that mommies, daddies and sissies don't usually leave. He doesn't know. He is handsome, beautiful, strong and cunning. He stole my heart the day we knew he was coming and if I had any way to make his heart better, I would. If I could do anything for him, I would. So that is why I continue to sleep in different places every week or so, why I have lived out of suitcases and bags since September, why I haven't cooked a meal in 5 months, why I try to spoil his nurses with treats every time he turns one month older, why I have only been home 2 times in 5 months, why I have worn the same basic outfits since he was born because it is what I packed. I will not give up on this boy. When it seems like we can't go any longer, we just get through the next day. Noah is a miracle and every day we have with him, (in the hospital or not) is blessed and valuable. (so don't take for granted those long nights without sleep, the messy cereal, the dirty laundry that piles up. just let it serve as a reminder of your precious blessings and how you are to hold them dear)
With all of that said. I would usually try to round it out with how God is teaching me that he is still "good" even in hardship. He is "near" even in sorrow. He is "in control" even when my son has been near death. I will refrain from a lesson or some inspirational pick me up because I am honestly weary of it all. I'm tired of seeking the good in it. I need this evening to just unload my mind, my heart and my neediness for normalcy (which I will never have again...haha). If you know me, you know that I KNOW the truth. I KNOW what the Word says, I KNOW what I am to do, think, feel and say. My mind is just weary of fighting the constant darkness. I even know what scripture combats that sentence I just wrote. In Exodus he tells us to only be still, for he will fight for us. I know I know. My heart and mind just need a moment to whine, complain and unload so I can refresh, refocus and move forward. Please pray for my heart to be cleansed, my mind to be wiped clean of all doubt, fear, cynicism, sarcasm, frustration and anger. Please pray that my heart to be cleaned, purified, sanctified by this fire, and that I will not become bitter. Please pray as I focus on the things God is asking me to use this time for. My walk with Him, my health (post baby and forward), and getting our son well, as well as strengthening our marriage and finding ways to love on my baby girl from a far. (thank you for facetime, skype and snail mail) The longer we are at this, the less it feels like an adventure, a vacation, a "season".....please pray for stamina, endurance and for strength.
So, an update. How do I even describe the last week or so?? A few days before Noah had his gbutton surgery he had to be put on higher oxygen. He had his gbutton surgery and needed even more support so they put a bypap mask on him. It's like a c-pap mask and helped him get support without intubation. Well, Monday he had to be intabated. He has been on the ventilator ever since. He had a broviac line placed. It is like a picc line but it surgically placed and lasts a very very long time. So, we really regressed so bad and this whole last week was basically a game of getting fluid off but not too much, keeping him comfortable and stable, a little bit of weening off of the oxygen/vent settings, chasing potassium and calcium deficiency and just helping support his fragile body. They tried starting his feeds again and the seepage around his button site got worse so they stopped them and will evaluate the button site tomorrow. He has also been fighting staff infection. It has been in his lungs and they have treated with major antibiotics. His xray looked beautiful today. PTL.
I love our doctors. They are aware of our weariness, they know where we are hurting and they know that we trust them with our son and just pray that things can turn around soon. They love our son so much and care for him so diligently. They answer all my questions, hug me, inform me, take my questions and concerns and investigate and pursue options. We are so blessed to be where we are at. Please please, pray blessings and continued stamina over our doctors. We have Christian, focused and servant minded doctors. Thank you Lord. Our nursing staff is incredible too. Always there for me when I need to cry, question and vent. They are there for small talk and when I need to just visit with someone. Bless them.
Prayer needs:
healed heart for our boy.
continued progress and healing over Noah's body and all systems
for him to have no major issues with his gbutton site, for the staff infection to be gone, for him to be able to start formula again, for swelling in the lower extremities to release, for comfort as he is weaned off of sedation again. Pray that they can maintain good blood thinner levels, for his body to adjust and is able to be weaned off of the ventilator, yet again. Please pray for him to be held by me this week at some point. It has been over a week or so since I've held him and we BOTH need the snuggles.
pray for my heart. It is just so tired. Pray for my mind. It is bitter and cynical. Pray for my body as it is aching and tired from all the weariness, random places to sleep, constant stress, etc. Pray for Nick as he travels ALL the time, for his job and his AMAZING bosses and coworkers as they have been so supportive and considerate through it all. pray for his stamina as a single dad at home, pray for Ava as she continually adjusts and has to be juggled about, for her health in all of this as well. Pray for our families as they support and bend over backwards for us in all of this.
Thank you. Thank you. Thank you. I think this is finally wrapping up for now. I know it was long. It was long overdue. It was also not fluffy or sweet. Just facts. Just raw emotion needing to be released so I can refresh, refocus and continue on this road. I love each of you and cannot thank y'all enough for your constant support and covering.
Job 11:13-19
When we started this journey ava was 15 months old. She was still in a high chair all the time, she was barely using any real words, she needed softer foods, but was getting lots of teeth, she used a pack and play in the begining, she was in 12-18 month clothes. I feel that I have missed so much of her little life in the last 5 months. She has so many many words now. She has a mouth full of teeth, and working on her 2 yr molars, she loves to sing, she knows what she wants and asks for it. "deenk(drink), luh you (love you), aba anay (ava renee), hungee(hungry), chanch you (thank you), elcome (welcome), cue me (excuse me), shake yo booty yayaya (shake your booty ya ya ya...if you needed that translated) haha. She just amazes me with her knowledge, her manners, loving heart, precious voice. When she walks into the hospital she says, "bubby bubby bubby", she is sweet to make friends in the playground there, she eats well, plays well, she is just amazing. All of this happens amidst the craziness and dysfunction. I'm so thankful, just sad some days because I feel that I have missed so much. I hate saying goodbye, every two weeks. I hate not giving her baths, doing her laundry, making her meals, cleaning her mouth, snuggling for nap, hearing her laugh and babble and sing. Lord, I know you hear my heart but, I am so weary of missing my baby.
When we started this journey, Nick and I had only been a part for "days" at a time, not weeks at a time. We knew we were in for a crazy journey, we knew we would be ok, but we also thought we knew the stresses we would endure. We had. no. idea. Truly, we had no idea the stress, the pain, the grieving, the frustration, the travel, the logistics, the needs, the lacking, the loneliness, the single parent complex, the long nights, the short weekends...we had no idea how long this would drag on and on and on. We didn't know that we would have to watch our baby boy almost die, endure 3 open heart surgeries, various procedures, endless days of drugs, ventilator, blah blah blah. You have never been closer to your spouse than in the moments that you have to talk heavy subjects like your child's life or death, like when you have to just sit and hold your little 4 month old's hands while he is semi paralyzed and under sedation to stay calm, when you both realize that there is nothing you can't do together, but you'll have to keep enduring. I miss his hugs when it's lunchtime on a Tuesday and he comes home for lunch. I miss late night talks about deep things before Star Trek and then bed. :) I miss grocery shopping and finding little things for his lunches that make him smile. I miss him driving me everywhere, (yes dear, I'm not lying, I really do miss it haha) I miss snuggles on the couch while we watch Ava play, I miss cooking dinner and I miss holding hands in church. I miss his goofy jokes and his mindless trivia rants. I just miss him. Friday night late, through Sunday afternoon is not enough time. We decided early on we would have to fight for us, make time for us even in the long week of loneliness, seek the Lord in all decisions and know that whatever happens on this journey that we would do it together. We are best friends, we are the best team I know. I am blessed and thankful for Nicholas and cannot wait for the day that we are reunited for good. Marriage, can be difficult in the good times, the easy and normal times, but especially in trauma, long suffering and hardship. We have clung to the Lord during this time, we have had to put our selfish needs aside and continually focus on the other's needs in our hard situation and that has blessed us each immensley. God has protected us and we are closer and more in love today than we were before this journey started. We have learned more about each other, drawn closer to one another, realized more about each other and are more appreicative of each other than ever before. Thank the Lord. We are so blessed.
My dearest Noah. He is precious. He is the strongest person I know. He is a warrior. He is my hero. I cannot tell you how much this boy has accomplished in his 4 months of life, but it would take forever. He is 13 lbs of steel and yet he has the most sweet eyes, wisdom is in his face and his half of a heart beats by the grace of God and his handiwork by men. I am beyond grateful and honored to be Noah James' mommy. Someday he will know that I have cried more tears over him than anyone else, I have lost more sleep over him than any other time (besides maybe with his sister, but for totally different reasons...haha). Maybe someday I will tell him of all the places I've "lived", chic fil a and cafeteria salads I've eaten, IV beeps I've had to ignore, monitor alarms I've had to plug my ears from, rounds I've listened to, procedures I've had to leave the room for, times I've had to ring the picu doorbell, etc etc. He is worth it. All of it. When I want to give up, give in, walk away and throw in the towel, he doesn't. He stays in this game, he never backs down, he doesn't give up. He does not know how to not fight for his life, he doesn't know what giving up is. He doesn't comprehend anything outside of hospital life, he doesn't know what it is like to be held all day long, to be rocked in the comfy chair at home, drink from a bottle, be held by everyone in his family, be played with on the floor, tummy time, rolling over, etc. He doesn't know any different than this terrible hospital existence. It pains me as a mommy to know this, experience it with him. I don't get to make him cereal right now or puree`s. I have rarely gotten to even dress him. He doesn't know that this is "wrong". He doesn't know what it's like to have his family around all the time. He doesn't know that mommies, daddies and sissies don't usually leave. He doesn't know. He is handsome, beautiful, strong and cunning. He stole my heart the day we knew he was coming and if I had any way to make his heart better, I would. If I could do anything for him, I would. So that is why I continue to sleep in different places every week or so, why I have lived out of suitcases and bags since September, why I haven't cooked a meal in 5 months, why I try to spoil his nurses with treats every time he turns one month older, why I have only been home 2 times in 5 months, why I have worn the same basic outfits since he was born because it is what I packed. I will not give up on this boy. When it seems like we can't go any longer, we just get through the next day. Noah is a miracle and every day we have with him, (in the hospital or not) is blessed and valuable. (so don't take for granted those long nights without sleep, the messy cereal, the dirty laundry that piles up. just let it serve as a reminder of your precious blessings and how you are to hold them dear)
With all of that said. I would usually try to round it out with how God is teaching me that he is still "good" even in hardship. He is "near" even in sorrow. He is "in control" even when my son has been near death. I will refrain from a lesson or some inspirational pick me up because I am honestly weary of it all. I'm tired of seeking the good in it. I need this evening to just unload my mind, my heart and my neediness for normalcy (which I will never have again...haha). If you know me, you know that I KNOW the truth. I KNOW what the Word says, I KNOW what I am to do, think, feel and say. My mind is just weary of fighting the constant darkness. I even know what scripture combats that sentence I just wrote. In Exodus he tells us to only be still, for he will fight for us. I know I know. My heart and mind just need a moment to whine, complain and unload so I can refresh, refocus and move forward. Please pray for my heart to be cleansed, my mind to be wiped clean of all doubt, fear, cynicism, sarcasm, frustration and anger. Please pray that my heart to be cleaned, purified, sanctified by this fire, and that I will not become bitter. Please pray as I focus on the things God is asking me to use this time for. My walk with Him, my health (post baby and forward), and getting our son well, as well as strengthening our marriage and finding ways to love on my baby girl from a far. (thank you for facetime, skype and snail mail) The longer we are at this, the less it feels like an adventure, a vacation, a "season".....please pray for stamina, endurance and for strength.
So, an update. How do I even describe the last week or so?? A few days before Noah had his gbutton surgery he had to be put on higher oxygen. He had his gbutton surgery and needed even more support so they put a bypap mask on him. It's like a c-pap mask and helped him get support without intubation. Well, Monday he had to be intabated. He has been on the ventilator ever since. He had a broviac line placed. It is like a picc line but it surgically placed and lasts a very very long time. So, we really regressed so bad and this whole last week was basically a game of getting fluid off but not too much, keeping him comfortable and stable, a little bit of weening off of the oxygen/vent settings, chasing potassium and calcium deficiency and just helping support his fragile body. They tried starting his feeds again and the seepage around his button site got worse so they stopped them and will evaluate the button site tomorrow. He has also been fighting staff infection. It has been in his lungs and they have treated with major antibiotics. His xray looked beautiful today. PTL.
I love our doctors. They are aware of our weariness, they know where we are hurting and they know that we trust them with our son and just pray that things can turn around soon. They love our son so much and care for him so diligently. They answer all my questions, hug me, inform me, take my questions and concerns and investigate and pursue options. We are so blessed to be where we are at. Please please, pray blessings and continued stamina over our doctors. We have Christian, focused and servant minded doctors. Thank you Lord. Our nursing staff is incredible too. Always there for me when I need to cry, question and vent. They are there for small talk and when I need to just visit with someone. Bless them.
Prayer needs:
healed heart for our boy.
continued progress and healing over Noah's body and all systems
for him to have no major issues with his gbutton site, for the staff infection to be gone, for him to be able to start formula again, for swelling in the lower extremities to release, for comfort as he is weaned off of sedation again. Pray that they can maintain good blood thinner levels, for his body to adjust and is able to be weaned off of the ventilator, yet again. Please pray for him to be held by me this week at some point. It has been over a week or so since I've held him and we BOTH need the snuggles.
pray for my heart. It is just so tired. Pray for my mind. It is bitter and cynical. Pray for my body as it is aching and tired from all the weariness, random places to sleep, constant stress, etc. Pray for Nick as he travels ALL the time, for his job and his AMAZING bosses and coworkers as they have been so supportive and considerate through it all. pray for his stamina as a single dad at home, pray for Ava as she continually adjusts and has to be juggled about, for her health in all of this as well. Pray for our families as they support and bend over backwards for us in all of this.
Thank you. Thank you. Thank you. I think this is finally wrapping up for now. I know it was long. It was long overdue. It was also not fluffy or sweet. Just facts. Just raw emotion needing to be released so I can refresh, refocus and continue on this road. I love each of you and cannot thank y'all enough for your constant support and covering.
Job 11:13-19
13 “Yet if you devote your heart to him
and stretch out your hands to him,
14 if you put away the sin that is in your hand
and allow no evil to dwell in your tent,
15 then, free of fault, you will lift up your face;
you will stand firm and without fear.
16 You will surely forget your trouble,
recalling it only as waters gone by.
17 Life will be brighter than noonday,
and darkness will become like morning.
18 You will be secure, because there is hope;
you will look about you and take your rest in safety.
19 You will lie down, with no one to make you afraid,
and many will court your favor.
and stretch out your hands to him,
14 if you put away the sin that is in your hand
and allow no evil to dwell in your tent,
15 then, free of fault, you will lift up your face;
you will stand firm and without fear.
16 You will surely forget your trouble,
recalling it only as waters gone by.
17 Life will be brighter than noonday,
and darkness will become like morning.
18 You will be secure, because there is hope;
you will look about you and take your rest in safety.
19 You will lie down, with no one to make you afraid,
and many will court your favor.
Wednesday, February 13, 2013
Happy Heart Day
Well, tomorrow is Valentine's Day. It is the first time in a long time that I am not making flower arrangements and coming home at night with hurting feet and raw hands. haha. I miss it though. I love arranging flowers. This Valentine's day will be spent away from my husband, but close to my kiddos, except that I can only see one of my kids at a time because Ava has a runny nose so she can't go back there to Noah's room right now. So, my day will be split up between the two. That's ok. Everything is kind of still messed up in our life, right now. I really didn't know how to even sit down and being writing about what has happened since the last update. I guess I wanted updates from then on out to be encouraging, momentous, amazingly wonderful progress updates and that one update we all want to read about; the one where we go home. Well, since I wrote about all the progress and the possibilities of home, things have changed. I guess I let my guard down and have now been hesitant to really unload or think forward. I just get through each day, minute at a time. The days drag. His progress is slow, but it is there, so I am thankful. I am not going to go into details at this point of how things started to turn around, you can go read through my fb status updates over the last few weeks. I am weary. I am tired. Nick and I are both desperate for God to just make decisions and call the shots, without us having to do anything. Just have your way Lord, we keep praying. The waiting and the waiting and the waiting... it is getting so tiresome. (I am reminded of an incredible sermon I heard earlier in our journey)
Habakuk 3:18 Yet I will rejoice in the Lord, I will joy in the God of my salvation.
Habakuk 3:18 Yet I will rejoice in the Lord, I will joy in the God of my salvation.
Yet I will rejoice. Somehow, in all of this mess, the hurt, the doubt, fear, questioning, deep sorrow, pain, ups, downs, there is a little life that is holding on, there is a little boy, our son, who is at the center of all of this and so we rejoice. He is a gift, not a burden, he is a precious creation, not a mistake. We will continue on this road as long as God wants us to because Noah is precious. He is strong, he is amazing, he is mighty. He is a fighter. He is incredible. He is priceless. He is my hero.
My sweet boy is the strongest person I know. I will fight alongside him the entire way, I will never stop praying for a complete and whole heart. I will never stop thanking God for my precious boy. There are moments, especially lately, where forward motion is almost impossible. Prayers for continued strength are obviously needed and appreciated. Please pray that all our waiting will reap a harvest of righteousness, fruit and blessing. Please pray that Noah be healed. completely. Please praise Him for sustaining us.
I am really dried up and don't have much else to really say. Thank y'all for the prayers and encouragement. Y'all are each amazing and we are so thankful.
Blessings
Shaina
Monday, February 4, 2013
The Next Big Step
So, Noah is doing pretty good. He enjoyed seeing his sister and being held by his daddy this weekend. Nick said Noah studied him for about an hour before dozing off to sleep. Those two have a lot of catching up to do.
The latest with Noah is that they are sure that he will be getting the g-button feeding tube. You can google it. Basically it is an opening where Noah can get his feedings by tube directly into his tummy. There are a lot of good things about this for Noah. Most all heart patient babies get these, there are many reasons for that. Basically heart patient babies need more support in feeding because their hearts are working so hard in general that they have a hard time digesting without having heart function drop. So, with Noah being 4 months old already and him having a large aversion to anything oral right now. The best step for him is this button. The catch is that they are trying to decide if he needs a fundoplycation or not. (google it as well) This will help him to not throw up. (Chanci Henderson, if you are reading this, I know you are an expert, so I hope you don't get offended by my lack of proper spelling or words usage) haha. I know a lot of people have had terrible times with this, but we are at a place where this must happen for Noah to go home and begin to thrive. We must trust our doctors and they are so incredible. We do know that we can begin to have a normal life for the 4 of us soon if he gets this done. We could possibly be home by the end of the month if things go ok. So, I ask you to pray for wisdom for our doctors as they do one more test tomorrow to decide on the fundoplycation. Please pray for Noah. He has had a stressful few days. This whole weekend he has been fussy and uncomfortable. There is some possible fluid build up on his right side, so he will get an xray tomorrow to check. He needed to go back up on oxygen today to help get his saturations up. He de-sats a lot when he is mad and uncomfortable, so they gave him some extra support. They got a PIV in since his other one quit working, so they can continue IV meds when needed. He got to get some stuff off his head today. All the monitors and the IV came out that was on his head. Please lift Noah up so that he can recover quickly from the gbutton surgery (final surgery until he is 3 years old we pray) and then we can make our way upstairs to begin our journey home. Truly, I am just humbled, terrified and excited all at the same time. I cannot even begin to imagine what life will be like in a matter of weeks. I just know that even with a button, we can find a new normal. Noah will be able to wear clothes again, work on tummy time, play time, he can learn to eat cereal, puree's and other soft foods, learn a sippy cup, be held as much as he wants, get constant love and attention from his sissy, the 4 of us CAN BE TOGETHER. Noah loves to watch his daddy and sissy. He will just be thrilled when we get home to see them interact and laugh. We will all be together and we will all learn together. I will update here as we know more. Lots to learn before we get home. Please pray for strength and peace of mind as we learn. Pray that Nick can get the amount of time off work to learn and bring noah home when that time comes. Pray for all the details to work out, for us to be clear minded and refreshed as we begin the next phase of this journey. Also, pray that things at home will be ironed out and worked out for our arrival. There are things that need to be done. Our home needs a good deep cleaning, we have some things that need to be sold, etc. So pray for stamina for us as we prepare. We are still weeks out from getting anywhere close to home, but my goodness the word home is just a miracle to even be saying right now. Praise God!!!! Thanks and love to all!
shaina
The latest with Noah is that they are sure that he will be getting the g-button feeding tube. You can google it. Basically it is an opening where Noah can get his feedings by tube directly into his tummy. There are a lot of good things about this for Noah. Most all heart patient babies get these, there are many reasons for that. Basically heart patient babies need more support in feeding because their hearts are working so hard in general that they have a hard time digesting without having heart function drop. So, with Noah being 4 months old already and him having a large aversion to anything oral right now. The best step for him is this button. The catch is that they are trying to decide if he needs a fundoplycation or not. (google it as well) This will help him to not throw up. (Chanci Henderson, if you are reading this, I know you are an expert, so I hope you don't get offended by my lack of proper spelling or words usage) haha. I know a lot of people have had terrible times with this, but we are at a place where this must happen for Noah to go home and begin to thrive. We must trust our doctors and they are so incredible. We do know that we can begin to have a normal life for the 4 of us soon if he gets this done. We could possibly be home by the end of the month if things go ok. So, I ask you to pray for wisdom for our doctors as they do one more test tomorrow to decide on the fundoplycation. Please pray for Noah. He has had a stressful few days. This whole weekend he has been fussy and uncomfortable. There is some possible fluid build up on his right side, so he will get an xray tomorrow to check. He needed to go back up on oxygen today to help get his saturations up. He de-sats a lot when he is mad and uncomfortable, so they gave him some extra support. They got a PIV in since his other one quit working, so they can continue IV meds when needed. He got to get some stuff off his head today. All the monitors and the IV came out that was on his head. Please lift Noah up so that he can recover quickly from the gbutton surgery (final surgery until he is 3 years old we pray) and then we can make our way upstairs to begin our journey home. Truly, I am just humbled, terrified and excited all at the same time. I cannot even begin to imagine what life will be like in a matter of weeks. I just know that even with a button, we can find a new normal. Noah will be able to wear clothes again, work on tummy time, play time, he can learn to eat cereal, puree's and other soft foods, learn a sippy cup, be held as much as he wants, get constant love and attention from his sissy, the 4 of us CAN BE TOGETHER. Noah loves to watch his daddy and sissy. He will just be thrilled when we get home to see them interact and laugh. We will all be together and we will all learn together. I will update here as we know more. Lots to learn before we get home. Please pray for strength and peace of mind as we learn. Pray that Nick can get the amount of time off work to learn and bring noah home when that time comes. Pray for all the details to work out, for us to be clear minded and refreshed as we begin the next phase of this journey. Also, pray that things at home will be ironed out and worked out for our arrival. There are things that need to be done. Our home needs a good deep cleaning, we have some things that need to be sold, etc. So pray for stamina for us as we prepare. We are still weeks out from getting anywhere close to home, but my goodness the word home is just a miracle to even be saying right now. Praise God!!!! Thanks and love to all!
shaina
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