Well. 3 hours and 45 minutes and this day can be over. Another day, another up and down roller coaster on this journey. Where do I even start to update y'all. A lot of it is stuff I've already posted and a lot of it is new. It is a big jumble, so bear with me as I try to weed through it in the best way, so that those of you who like to keep up, can.
I walked in this morning to Noah getting a chest xray. It came back clean and clear. Noah has been dealing with oxygen issues for the last few days, more seriously than usual. He has been trending low and today got serious. He was perfectly still, happy, and continued to stay in the low 60's, he even dipped into the 50's for a bit. I was just sitting in his room, watching, waiting, praying. There is absolutely nothing I can do when he does this. There were a few times he rubbed his face and pulled his canula out of his nose, so I can put that back and try to settle him. I try to rub his head (he likes that a lot) and help put his paci back in his mouth. The only things I can do are minimal, but somehow I know he knows its me. So, I muster up the strength and try to stay calm and positive for my little man. He pushed through and fought today. They gave him extra pain meds, and some mild sedative to help his body calm down. When he gets agitated and frustrated his sats plummit so they wanted to keep him as calm as possible. He has slept most of the day away because of that and I'm thankful. The neonatologist on call came by and was quite honest. He really didn't know why Noah was doing this. Sometimes I think they overthink in some situations, but none the less I'm thankful that he is honest and communicative with me. Noah's body is telling us one thing for sure. He needs the next surgery in the 3 stage process. The kicker is, he has some risks involved right now that aren't what we would want to have. The risks for surgery 2 right now are that he is not quite 4 months yet. He has a clot still. He has a small pulmonary artery and small vessels going into the lungs. Here is a diagram that is helpful to me to see kind of what Noah's heart looks like and what surgeries will help to do.
http://www.chop.edu/img/cardiac-center/hlhs-surgery-three-stages.html
So, there are risks with every surgery but he is vulnerable to a lot of things right now because of the clot etc. They have what they call "cath conference" tomorrow. They will present Noah's case to all the surgeons, dr's, cardiologists, cardiac anesthesiologists, PICU intensivists, etc. They will all try to come up with a plan for Noah for the next steps. PLEASE pray tomorrow, around 4, or all day, but especially around 4 as they start their meeting that they can share ideas, put all of their amazing knowledge and experience to work and make a plan for Noah. There are a lot of dr's on his team that are Christians. I know they are faith driven men and I ask that they allow the Spirit to flow freely in that place and that God has reign as they seek out the next steps.
So, we are at a waiting point again. We wait on Noah to see if he strengthens any or if we just try to keep him stable until stage 2 surgery. We wait on the team to come up with a plan. We wait on the Lord to show himself through all of this, each day, even in the little thing. Like today...
It has rained on and off today. Rain is a direct communication from God in our family. It is a sure sign that he is near. I'm thankful for that. It snowed crazy on my parent's wedding day, it rained the day I was born and the day Staci was born. It rained the day Nick and I knew we'd be together for the rest of our lives. Rain is a sweet promise. So, he sent me rain. Even if things don't turn out how I want them to, He still promises to never leave. Then, our sweet clinician, Janet, came by. Y'all, Janet Turner is an angel in disguise sometimes. She comes at odd moments, but today was a divine one. I was struggling. I canceled my appt to get my wisdom teeth xrayed (another blog entirely) because I could not stand to leave Noah's room. So, I was in here, frustrated a bit and shedding a tear on and off. She came in to see how Noah was doing and then sat down and we began to visit. Janet is thorough. She doesn't forget. She is a data collector of sorts. She is borderline OCD with her job. She works long hours and fills her life with his job. She cares. She truly cares deeply about each baby and each family she works with. If we had gone home after surgery 1, she would be the one who would call every morning and check in on us. She would have taught us all we needed to know to go home etc. But, for today, she just came by to catch up. She was able to talk me through, medically, because she is an RN and has been doing this for years. She walked me through, talked me through some of my questions and fears and didn't make promises, but gave me some hope. Gave me some positive encouragement about where we are, that we are not the first baby to display these signs, have this struggle, stay here this long, be this sick, have risks for surgery 2, etc. Like I said, she didn't make promises, she knows better, but she walked me through some of the insecurity of it all. She is a woman of faith. You can tell because she tells you. She served me like Christ would. She came in, listened, talked, and then offered to get me a starbucks drink. Seriously, she is a saint. ;) She came back awhile later with a vanilla bean frappucino, because I don't like coffee and a cake pop. Truly, she went above and beyond her duty, to love on me and keep me going. She hugged me and reassured me that we are in the journey, but there are some glimmers of hope ahead. We can get through.
I mentioned to a friend of mine the other day that I tend to try so hard for God's approval of me. I tend to get into a works mode, Martha's long lost great great great great great great etc grand daughter or something. I try so hard to please God for results. If I pray enough, study enough, learn enough through this, bless enough people, stay positive enough that he will heal my boy. He doesn't work that way and he has gently reminded me of that in the last few days of this roller coaster. So, my goal in all the crazy today, was to not resort to making deals with God, try to pray more just to get results out of him, but to cling and hold tight to him, even when i was tempted to cry out and ask why. I got in the Word, I asked for prayer from my front line shield bearers and I waited. I waited for today's storm to pass, for this particular battle to be over as I hunkered down under the shields of those who God has so graciously put in my life. Thank you. So, there were times I felt like I should have been doing something. Times I felt like if I prayed more or studied more he would be pleased and miraculously heal my boy right there. He is able, but he knows what is best, when it is time and for who's glory it is for. So, in it all, he provided a helper to get me through, physically talk me through it and listen. He provided a means to get Noah calm and stable. He has provided the opportunity tomorrow for discussion to be had about Noah and possible plans be made. He is holding us all. He knows our concerns. He knows the risks that hover. We are sure that He has a plan and as scary as it is, whatever it is, He will lead us. He is not abandoning us. He IS. He truly IS the I AM.
Thank y'all for walking this road with us. I know the last few days I have seemed grim and cynical, sometimes rude. I want to apologize for that. I know I get somewhat of an excuse in some ways for being a grump here and there, but there really isn't an excuse. I want to constantly be thankful, not hateful or rude, jealous or envious, even if it is hard to see all those out there with healthy families, together families, doing normal things and enjoying normal lives. It is hard to hear people complain about the petty things when I have a 3 and a half month old fighting for his life. I do not have room to whine though and God chose us for this life, this journey and blessed us beyond measure with Noah. Not a burden. So, please forgive me if I seem rude and ungrateful. I just struggle, as a crooked human, with the desire to have normalcy and health cover my family again. Bear with me and love me through it.
Since I have felt whiny and a bit selfish lately I wanted to try to express some of the things I am thankful for and all the good God is showering us with in the midst.
Noah is alive. Still. Thank you Lord.
Ava is alive and well. She is learning SO much. She makes us laugh every day. She is smart, beautiful and funny. I am not just saying this because I am her mother. I have outside references. Every nurse who sees her picture is drooling over her and saying, "awww you have to be missing her so much, what a doll". so ha! :) it's not just me. :)
Nick is my sweet, silly, hard working, dedicated and loving husband who is patient with me, strong to the end and is ROCKING the single dad bit like a boss. I mean, seriously. This dad has Ava fed, bathed, books read, prayers prayed every night. He dresses her up in the cutest outfits, does her hair, (makes her keep her bows in), plays with her, takes pics of her for me, and videos. He loves on her and each night tells her, these are kisses from mommy and proceeds to kiss her lots. He loves me endlessly. He listens when I whine. He is patient when I freak out. He is beyond strong. He is not afraid to be weak, but He rarely shows it because He knows I need him to be strong. He is selfless as he takes care of everything at home in my absence. Except keeping up with the budget and bill paying, he is incredible. I love him. I love him more everyday. Separation has been an interesting season of our marriage. Some choose it. We didn't. We have embraced it in our deepest valley though and have let God do amazing work in our marriage as we have been a part. communication has been worked on (obviously) and we have been able to miss each other and that makes time with each other even more sweet. Thank you Nicholas. You're my best friend and I'm thankful for you.
Our families are so amazing. My parents and sister are my strongest support. They love me through my issues and keep me in prayer constantly. I'm thankful. They sacrifice so much for us and I am beyond grateful. Nick's family has been a constant support on the home front, with keeping ava and keeping nick and Ava company when the weeks get long. We are blessed.
We are a part of a church body who endlessly pray and encourage us. Nick was at church this weekend and texted me to tell me he was going to take ava to her class and then go be social for us. haha! Thank you honey. Seriously though, we are blessed beyond measure by their presence in our life. With that, the entire body of Christ, not just the part we serve along side weekly. The body of Christ as a whole, in each nook and cranny, have come together for our son, across the world and for that, we are HUMBLED. There is not another word other than humbled. Thankful and grateful too. We cannot express enough how amazed and comforted we are by your love and prayers. Truly. Wow.
We are thankful for the Ronald McDonald House. They have provided a comfortable place for us to be close by Noah. Without having to live in the NICU. We are thankful for them and their support. If you ever desire a place to serve, there is one in most cities with a hospital that serves kids. I know Amarillo has one and of course, Ft Worth and Dallas. Just check and see. They are always looking for people to cook and serve a meal for the families, for supplies for their pantries, etc. I know as we get home, we will be a big supporter of the one in Amarillo. You can save coke tabs and take them to your RMH. They collect them and receive money for them to help support their needs. I have collection boxes that are cute for the office or you can keep a vase on the counter or even a ziploc bag. Give them to the local house or save them and I'll get them to the one here in ft worth. :)
We are thankful for local family here. Thanks for your support and love. we always have a place to stay and people to keep us company and loved on and for that we are so so thankful.
The nurses and staff here are wonderful and take such great care of our son.
My parent's are celebrating 30 years of marriage this month. On the 23rd. I WANT TO CELEBRATE WITH THEM with a PARTY or something, but I know its not happening this year, so we will celebrate 31 like no one's business. haha!
We are just blessed. Even in the midst of it all, we are thankful and blessed.
Thank you for everyone who prays, who has given support in various forms, who love us and check on us daily. We feel your love and support. We know you are walking this journey with us. Some in the middle of the night, some when they first wake up, some as they lay down and drift off to sleep. There are little kids who pray for our baby right after they thank God for their mommies and daddies, there are men and women who have seen me grow up who are on their face for my child, daily. There are people who have hurts of their own, life happenings that are tough, but still stop to pray for Noah. We notice it. We are thankful for it. Don't stop it. We have a LONG journey yet ahead. Hard days are promised, doing it alone is never going to happen though. Thank you thank you.
As we move forward....here is a list:
pray for noah's stability as we wait for stage 2 surgery.
pray for the clot to be gone in Jesus name.
pray for the surgical/cardiac team to be on the same page with the next steps.
pray for his pulmonary artery to strengthen and as he grows, grow too.
pray for his blood vessels to the lungs to strengthen and grow
pray for his blood flow to stay strong to get to stage 2 surgery
pray for stage 2 surgery to be part of the solution to his needs.
pray for his other systems to remain healthy
pray for him as he endures.
pray for us as we endure
pray for all the continuing logistics to work out
pray for stamina as we are still separated so much as a family
pray for his heart to be HEALED in Jesus name. For his glory. For many to come to know Him. (i'm talking, that he has a whole heart, unexplainable whole heart)
Thank him for his power and all he has already done and is doing in Noah and our family.
Thank him for his sustaining grace over us and seek out ways he is sustaining you today too.
be thankful
I know we are thankful for him and his unending grace.
thanks for staying with us,
Shaina
