My Little Turtle

Slow and steady wins the race... right? Well, Noah is my little turtle. He is just slowly and steadily winning this race. He had a good night last night and then had a great day today. Besides getting to snuggle with his mommy, he was able to go down on the vent some, he started feeds again, he maintained good heart numbers, peed a lot, even pooped. He really has gone down on swelling, even though I see him every day and it is hard to tell, I think he really has gone down some. He is still on lasix and another diarhetic, blood thinner, tpn and lipids, and strong pain medicines. He is not on as many sedation meds, so he was awake and aware this morning which was nice. :) he just looked around and was very busy trying to figure things out. His eyes are turning brown. :) :) :) He is SO my kid! Ava looks nothing like me, but my sweet boy does! :) hehe yay. He got to be held by mommy and his mommy was so so so very thankful and happy about that. Maybe if he is a good boy and mommy bribes the nurses, she'll get to do it again tomorrow. hehe

Truly, he had a good day. He made some progress and any progress is GOOD progress. The plan right now is to tweak meds off and on for getting rid of fluid, to wean him off the ventilator slowly but surely and to up his feeds again. Not sure I can think of anything else.

Ava has started to feel a bit better. She has been really tired and clingy. Her appt with the urologist was good. We got updated on her reflux and got the plan of action for her. All pretty good news. She is teething still, but it seems to have subsided some. She seems to be perking up a bit. I pray so hard that she will keep holding on with us as we get through this time.

Thank you all for praying. Thank you for lifting us up, praying for a miracle and not laughing at me for it. Thank you for the support. We are so very thankful.

Let's PRAISE the LORD for his mighty hand in our life and on our baby boy!! I am thankful for progress. It is such a blessing.

Thanks and love,
shaina

Yet, I will rejoice...

Habakkuk 3:18 – “yet I will rejoice in the LORD, I will take joy in the God of my salvation.”

Yesterday was terrible. I had not slept well, I woke up down, the nurse sounded negative, I fed off of that. I sat depressed in the big comfy chair and watched shows on Netflix for hours and hours. I did not feel like trying, I did not want to get up and go to the hospital. I did not enjoy getting a phone call from Ava’s dr’s office about having to get her arm looked at by an orthopedic dr (another blog all together), all the insurance stuff that goes with that, blah blah. I was frustrated with so much. I wanted to quit. I wanted to throw in the towel. Since May we have been learning what our new normal will look like. Since September 24^th I have gazed upon my son and asked the Lord many time, why noah? Why a heart defect? Why no progress? Why a pacemaker? Why won’t his body heal? I truly was on the road to the pit again. By the afternoon hours I was holding on for dear life to the hem of his garment, begging for him to show up. (like he ever left) Each week has had its ups and downs. I go through different emotions each day and most of the time I am fierce with confidence and a big smile as I get to the picu D wing and into noah’s cubicle. I know Noah needs my strength and needs my voice. I know that is what I can give him right now. Yesterday I had no words, I had no confidence, I had nothing to give noah, not even my voice. I finally did try. I was just emptied out so much I had nothing to give my son, nothing to keep going on. My wandering heart, weary. My longing arms, tired. My mustard seed faith, almost dropped. My light at the end of the tunnel yesterday was knowing that I had some special visitors. These three people are some of the Godliest, genuine, humble people I know. They took time from their schedule, their trip here, to come by and love on myself and my Noah. I cannot tell you how satan wanted to get me to try to not have them come see me. I tried to warn them that noah didn’t look good yesterday and I was real low. I didn’t know if they really wanted to come up if we weren’t at our best…(its just how I process sometimes) I know satan was trying his best to not let me be rescued from the pit of despair I had found myself in all day. They came. I was never more happy to see people, than when I pick up my hubby from the airport each weekend and when I get to see Ava after weeks apart. Truly, it has been over 2 months since I have been in fellowship with these mentors and suddenly there they were. It was like a lifesaver had been thrown out into the waves. That ocean that always stops at the shore, as matt preached on last weekend, I’ve been drowning out in it lately and then that lighthouse light came on, the lifesaver was thrown and I could get pulled to shore, cough up the crud, lay there and breathe. They wrapped me up, fed me, and loved on me. They were Jesus to me and I was able to refocus, refresh and then move forward from that place. I’m really not sure how much they realize it meant to me to have their presence. Their prayers for our son fell over him like warm blanket on a cold day. Noah soaked them up, as did I and it gave us each the fuel to keep going in the right direction. That is the beauty of the body of Christ. It is the hope of the gospel. We have a rescuer. We do not have to drown in whatever pit we find ourselves. We can cry out and know that He himself will drag us out, wrap us up, feed us and love us through. Christ will pick you up, right where you are. You don’t have to get to shore yourself, clean yourself up and then come to him.

Our associate pastor at Family Life is Matt Johnson. He has started a 3 week series called, “When God Seems Like the Enemy”. I watched it online (www.familylife.tv) last night before I went to bed. I can tell you, I felt like he was sitting across from me at the table and preaching directly to my heart. I urge you to listen and then the next two weeks go back and hear  the messages either at Family Life or online. I went to bed at peace. I slept better than I had in awhile. I awoke a few times to random thoughts and negative thoughts about noah and rebuked them and went back to sleep. (he is ever with us, he truly never leaves us, especially in our rest) So I woke up for the day and went directly to Christ. I had been so convicted that no matter how much time I spend with him during the day, at the hospital or wherever, I had to start the day, not just fill the day with him. I meditated some more on the message Matt gave. I soaked up some amazing music, got in my journal and focused my mind and heart on God’s promises before I even thought about going to the hospital. I got ready and got to the hospital in time for rounds and noah was awake and looking around. I held his hand for awhile and then pulled up a chair and sat beside his bed. Yesterday I could not approach his bed without a fight. Today, comfortable and enjoying time with my baby. Thankful for that interaction. One of the hospital chaplains came by and we visited. I always feel weird when they come by because they don’t just come out and ask you, “are you a Christian?” but I am and I want them to know that without sounding defensive haha. Anyway, he was so pleasant and we had a wonderful visit. It was after he left that noah’s nurse came up and asked if I would be in favor of holding him… WHAT! Of course!! He is still on the ventilator, multiple tubes and drains, but YES! So, they got me set up and got him moved to my arms, tubes and all. It was the best 45 minutes I have had in the last month. Just peaceful warmth between the two of us. The special part of our holding time was that we got to cuddle underneath a very very special blanket that was given to us last night. More on that later. Just know for now that this mommy was given her miracle this morning. I had called upon our prayer warriors and asked for a miracle  yesterday. In my struggle and loneliness I asked them to pray for a miracle for us. For noah. It came. I held my baby boy for the first time. I do not believe it will be the last. But, if God chose otherwise, I’d be satisfied with his goodness to me in that very moment. So thankful. For I rejoice in the middle of hardship and trial, for God simply digs us out of the pit and rejoices over us. He sings over us with love and my how it fulfills every longing when he gives us the desire of our hearts.

I would like to hope that even if I didn’t hold my baby boy today that I would still be rejoicing. I have tried everyday, even in the hard times, to say, I trust your character God, even when I do not understand your ways.

Thank you Lord for your covering, for the prayers of everyone, for the love of the body of Christ, for the amazing amount of support and love from all.

It’s worth it. The nearness and the intimacy that I have with Christ is worth the fight. I don’t like this situation at all, but I know that He is being honored through our journey. I’m honored to be Noah’s mom now and will always be. He has brought me closer to Christ than I ever thought possible.

Pee

Noah had a good night. His output was good. Every bit of pee is a good thing and we pray for more of that. I'm taking each nugget of good news and praising God! Every little thing. Thank you for continuing on this road and praying us through it. Don't stop. Praying for more and more pee to come, for that fluid to reside, for the ventilator to be weaned more, for feedings to start back up, for meds to come down, just every detail, I know God has it all.
thanks and love
shaina

While Everybody Is Watching

This journey has been a very public one. Sometimes that has been by our choice and others time it has not. We decided when we first knew of Noah and his heart condition that we wanted and needed support. We called upon everyone we know to begin praying for him. We have been overwhelmed by love and prayers of support for us since then. We continue to get prayers, we are on so many prayer chains I couldn't even tell you how many. We are thankful, truly. We have amazing family and friends who cover us daily. We have a church that is beyond supportive. There are people in other countries who are lifting us up to God. The body of Christ has come together in a very beautiful way. Here is what hurts though.... When we utilize facebook as a means to communicate updates about our son so that our fellow Christians and prayer warriors can continue to lift him up in the details and rejoice in the praises...that means we are "friends" with most of them. It has come to my attention that there are some people who will pray along side us and support our son and then have some very negative and rude, very un-Christ like things to say on there later. I am thankful for any prayers we get for our son, but I am sad that some of the same mouths that pray for our boy also speak hateful words and gripe about things.

I have been very vulnerable and open to everyone as I have traveled this road. My husband is very private and reserved and is not near as vocal nor as social. We make a great team. He keeps me grounded and I keep him busy. So, I have gone through this journey in a very public way, by choice. There are some days that I regret that, but other days I am thankful because the load is lifted and I can breathe. There is a line in a song that I have been listening to that says, "it's hard to grow while everybody's watching". This time in my life has been the hardest, to say the least, and it has been the most growing time as well. I always said I had a boring testimony....I accepted Christ at age 7, didn't get into any/much trouble growing up, just nothing really to tell people. This has changed that forever. All of this has changed me. I feel like I am on display for all to see and if I have a bad day or mess up or say the wrong thing that I have failed in some way. The bad days are reallly bad. The good days aren't my best, but they aren't the dark ones. Does that make sense? There have been times in the last few months that I have almost thrown in the towel, turned my back and ran as fast as I could the other direction. Why would God allow this to happen to my son, or any child for that matter? When he said he knit and formed noah in my womb, why did he mess up? Why is noah's heart not whole? Why does my daughter have to be away from her parents, who aren't divorced and didn't choose to be a part? Why do two people, who have become one, who function better together, who when one cries the other tastes salt, have to be separated for months, seeing each other for little bits at a time, here and there, with the stress of a critically ill child, a developing toddler and trying to nurture and protect their marriage at the same time. How is this God's will? How is this good? How is this of God's hand? The age old question, "why do bad things happen to good people?" Well, first of all, the Word clearly states that no man is good. We have all fallen short of the glory of God. So, "good people" are irrelevant in bad situations. Bad things happen. period. God never said following him or trusting him would be easy. The thing that God is asking us to do, is to trust His character, even when we do not understand his ways. Today, I didn't show that in my faith. I, honestly almost gave up on faith. I am so dang stubborn though, that I cannot turn away from what I know, what I have always  known and the only form of hope I see. Without faith, what hope is there? It's the gospel. We have no hope but Christ. There is no hope, but in Him who died to give me hope. It's beautiful. It's merciful. It's unfailing. It's pure. It's love. I have struggled with feeling punished lately. This whole ordeal with Noah makes me feel as if I have done something wrong and God is punishing me by making my child go through this ordeal. I was freed from that lie Sunday in worship when we sang a line in a song I have sung a million times, but never heard the verse like I did Sunday.

Til on that cross as Jesus died
The wrath of God was satisfied
For every sin on Him was laid
Here in the death of Christ I live, I live

The wrath of God was satisfied. This trial is not God's wrath, even though it can feel like it at times. God's wrath was satisfied in Christ's death. My son is not enduring punishment, God's son did. Wow. 

So, Noah. I know you are all really reading this to hear about him. Noah is precious. He's adorable. He's handsome. He is sweet, he is strong, he is so far above me in courage and he doesn't even know what courage is. He is helpless, needy, and still very sick. Let me try to make it clear. He has been on a ventilator since the day he was born. He has gone through 2 surgeries and a heart cath within and month and a half. He has had more iv's, drains and tubes coming out of him than I have ever seen or could count on my hands. He went into and survived cardiac arrest. He has endured a nasty infection. He has gone on and off feedings multiple times. He has never been held. (i take it back, his daddy held him in the OR when he was born.

Since that moment, he has not been held. He has never been able to wear clothes. He is swollen. He is so terribly swollen it is so sad. I hate it for him. His skin is so tight in his abdomen, chest and face. He has gone through more in the first month and a half of his life than many people go through in their entire life. So...how is noah tonight?

Noah is stable. His numbers are good. His heart rate is steady due to the pacemaker. We are thankful for that. His oxygen saturation is good, for where he is in this process of fixing his heart. With every surgery it will get better. His blood pressure is decent as well. Until the fluid comes off of his body though, he can't get better. That is why I was so urgent in my posting this afternoon. The miracle we ask and need for Noah is for fluid to rush out of him and off of his body immediately. He needs to be relieved of the edema in his body now. He had gone down real well until dealing with the surgery yesterday. He is back to being really puffed up. He needs to pee and pee and pee to get the fluid off of him. He also needs to have gas, a lot. His abdomen is very swollen and full of air. He really needs that air to be released. Yes, he needs to fart a lot. 

Ava. Sweet, silly, lovely, precious, beautiful and smart Ava. She has been tossed around, pawned off, in limbo between places for months and it is finally taking it's toll on her. My sweet girl has been teething for awhile with molars and that has been terrible lately. She has kidney reflux and has had it since she was born, but she had to go through a vcug test to check up on it, a few weeks ago. She goes to the dr tomorrow to find out if she will need a procedure to correct it or if it correcting on its own. She also has an issue with her arm, exactly like her daddy's left arm, where her bones are not growing properly and she has lack of radial motion in her right arm. We will have to have it looked at by an orthopedic dr. She has been clingy, sad, tired, with a suppressed appetite lately. She misses me, then she misses nick. She gets pawned off on family all the time, especially the weekends so nick can come down here. She has been amazing, resilient, cooperative, sweet, silly and happy through it all, but right now she is feeling the effects of it all. She has been under the attack today along with her daddy, mommy and brother. She is weary and tired. I know my children will not remember this time in our life, but we will and you can bet that they will know how amazing they were/are and how much they did to encourage their mommy and daddy to keep trusting the Lord, keep pushing ourselves along and not give up. 

Prayer Specifics:

(this is going to sound cliche and cheesy, but it's my heart's longing) For God to be honored, glorified and exalted in our life. 

That Noah would feel the prayers, peace and healing touch of Christ. 

For God to help my unbelief

For Nick as leader of our home. 

For myself as the one, alone on the frontline 24/7

For Ava as she endures

Noah to release fluid. To get rid of fluid and come down in swelling in an enormous way. A miraculous and amazing way. 

For him to release air from his abdomen. 

To not retain fluid in his chest. 

To GET OFF THE VENTILATOR!!!

to adjust to that change when it happens.

to get back on feeds, preferably my milk, not formula, but either way.

to remain consistent in his heart stats. 

that he will get rid of tubes, less meds, to transition to a more "normal" baby.

to BE HELD BY HIS MOMMY AND DADDY

for ava to be well

for her arm to be healed

for her to have endurance to get through this with us

for her to be cared for in my/our absence. 

her kidney reflux stuff to be dealt with/healed 

For nick to get rest and to get through work each day

for myself to take care of myself

for my milk supply

to remain immersed in Christ and his truth, to not dwell on the bad or the difficult so much and try to refresh my heart and mind in him every day so I can be strong for my son and daughter. 

for people to come to Christ and for those that know him to draw nearer to him through our story. 

Thank y'all. Love y'all.

learning still, 

shaina

At His "Pace"...

Nothing about Noah's story has been "normal". Nothing has been typical at all, in fact, from the day we found out we were pregnant, nothing has been regular. Most people find out they are pregnant a few weeks into the pregnancy. Well, we didn't. We found out 20 weeks in. Within 1 week of finding out we were pregnant, we found out we were having a boy and we found out he had a CHD. (Congenital Heart Defect) Hypoplastic Left Heart Syndrome (HLHS)
Nothing about this boy has been easy or normal..(except for loving him, that has been easy as ever and as normal as can be) So, here we are, 1 month and 11 days into his life and he is still calling the shots. Well, him and God.
So, Noah is doing well today. We have some news about his progress I would like to explain! God and Noah have been taking us on a long journey post surgery. Today we found out that he will need a pacemaker put in. Noah has been on and off of a pacemaker since he came out of surgery. This can be normal for an HLHS patient. He would do well for a week off of the pacemaker and then he would need it again. So, today his heart rate went back down and he had one of the cardiologist monitor him most of the day. After all the back and forth they have decided this will be the best thing for him.  The procedure will be tomorrow (monday) or Tuesday. This is a very simple procedure, to put the pacemaker in. Nick and I are relieved to have something to move forward with as we have been waiting for weeks to see progress and be able to measure that progress. So, Noah will get the pacemaker. It is an amazing device and will only kick in when his little heart needs it. This gives us some confidence as we move forward that his heart has support. His heart and the shunt that was put in during his first surgery (norwood procedure) are doing well. He needs the pacemaker to help his heart communicate better basically. The procedure to put in the pacemaker is a simple surgery. Noah still has the ventilator in, they have stopped his feeds for now and he is ready to go when they are ready to get him back there to do the surgery. He will not have to be on bypass or anything so that is good. This is not nearly as invasive or hard on his body. This will be a good step in his recovery process and we are confident in his caregivers, doctors, nurses etc. They know Noah and have taken care of him since day 1. They know what's best for his little heart and his body. They are so excited to see how he will progress after this pacemaker placement. His nurse today was so excited to tell me that it won't be long now til we see him without all the tubes in his face. :)
SO...please pray for this procedure to go smoothly. Pray that this will help get him to that final step to true recovery. Nick and I are thankful for your prayers and support as always!
Besides the pacemaker news, his stats are good, they are weaning him off the vent slowly, he got rid of a chest drain, he loves to be swaddled, he was going up on feeds until they decided on the pacemaker, but he'll go back on those after the surgery.
overall, this pacemaker is good news. It means that he will have the support he needs, we can move forward and see what GOOD things are ahead for our boy. I CANNOT wait to hold this baby boy and that looks closer now than ever really!

my baby boy is so handsome. I can hardly stand it. I need that boy in my arms :) :) :) Pray us through this pacemaker surgery please! Let's pray him up and get him through this next step so we can see even more amazing progress! My renewed and refreshed spirit is holding strong and I am thankful for the prayers that have gotten me here. I'm holding on, so tight. I know that God's plans for this boy are BEYOND my comprehension and understanding. There are lots of things ahead for our family, because of this boy and his courage, even as an infant, to fight and hold on to his maker. To God be the glory GREAT things he has done!! And will continue to do.
Thank you for holding up my arms.
Thank you for loving my family
Please praise God and thank him for his covering.
blessings,
Noah's mommy