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.
