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

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
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.

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.

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. 


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!

Friday, February 1, 2013

What An Interesting Day

My day has been (or I should say was, since it is 1:15am as I begin this blog)interesting. My mind has been constantly turning and processing. I'm not quite sure I will ever fully understand any of this journey we are on, but God is very purposeful in his timing and in his ways of communicating with me. (especially recently) I suppose I am at a place of hightened awareness of God, his character, his ever present awareness and care. Today started out like any other day. I got up, got ready, grabbed breakfast, got to the hospital, made it in time for cardiac rounds, played with Noah, visited with the nurses, got through regular rounds and even got to hold Noah for a little while before my friend Christi came up to visit. We went to lunch and got a pedicure. Such a nice outing. I am thankful for the opportunity to get out and enjoy myself with such a longtime friend and sister in Christ. Thanks, CT.

We were getting pizza at Pie Five. (a good, local place in the DFW area). We got to the check out and they ended up having a communication issue and had to re-run my card, but the guy at the register didn't tell me he cancelled the whole thing and would re-charge me for everything. sheesh. Anyway, I got frustrated inside. I had to remind myself that people make mistakes. Thanks Lord. I can always use a reminder, I am such a harsh judge sometimes. Ouch.

So, we get to the nail salon and get comfortable in our massage chairs as the nail techs are working on our pedicures....I glance across the room and spot a "country" guy (I say country because he was in a plaid long sleeved shirt, wranglers, boots, you know, looked right out of amarillo in a nice nail salon in ft worth) haha... sitting in a chair, next to a massage/pedi chair and he seemed bored. I mean, generally most guys are quite bored if they are asked to sit in a nail salon for any amount of time, much less the whole time his lady is getting a pedicure or manicure or both. Well, this particular fellow was accompanied by his mother. She was obviously aged quite a bit and you could also tell she happened to have some sort of demintia or alzheimers as well. She was aware, but distant. She needed help getting on and off the pedi chair and needed some pillow support to help sit her up enough for a manicure. She had her hair combed pretty with a little clip to pull some back out of her face. She had a pretty blouse on and seemed content. You could tell she was enjoying what appeared to be a weekly or bi-weekly trip there. I guess what struck me at first was that her son (or possibly grandson) was with her. It would seem natural for a daughter, granddaughter or sister or other female family member would bring her, but it was so sweet to see her male family member, most likely son, bring her in for some pampering. I began to think about all that mother and son or grandmother/grandson relationship must have looked like years ago.... pancakes on saturday mornings, story time at night when he was little, her being at every ball game when he was growing up, come rain or shine. The occasional girl conversation on how to look, act and smell like around a girl. :) All those things began to make me smile as I made up this life story about them, without ever knowing them or saying a word to them. The woman and I caught eyes at one point and smiled at one another, I guess even in her mental state, noticed I was staring. She was just happy and was so thankful to have her son/grandson there to take care of her and escort her. It made me think about the fact that I have a son. I have what will, I pray, grow into a lovely relationship. I am excited and thankful to have the opportunity to have a son and all that comes with it, bodily functions and all. :) haha. I also became convicted of the moments before at lunch when I would have had an attitude with the clerk, possibly in front of my boy someday. I don't want to be that mom that has to constantly apologize for my language or behavior. I know I will make mistakes and he will see that and I will have to apologize and talk things through. We will disagree and argue. We will not always get along. He will see me fail. What I pray happens is that he will see God's grace and mercy flow and he will have an example of what God's faithfulness looks like. I pray that he will respect me and care for me because he was shown those things, so that when I am too old to drive, too feeble to get in and out of my own chair, that he will find pleasure in serving me, loving me and showing me grace as he was taught. I pray that he and I can have that relationship because of God's goodness. That leads me to the last part of my interesting day...

A precious new born baby girl went to be with Jesus today. She left this earth, as a few days old, and entered into eternity in Christ's warm, loving and cozy arms. She was very sick. Her heart and lungs had many problems. I did not meet her family. They were quite busy today. Sort of a hurry up and wait kind of game. Watching her parents walk in and out of the cubicle, walk the hall, come back, go, sit awhile, talk with dr's, go walk around, come back, etc. That process felt so familiar as we had waited just a few weekends before, to see if our Noah would make it to surgery or not. I knew, just a tiny bit, of what that momma was feeling. Just a tiny bit. Nick and I had the conversations we never wanted to have or thought we would need to have. But, there I was tonight, holding my Noah. I could not let him go. I literally sat there, with him in my arms, swaddled in his blankee, for 3 hours+. I just sat, held him, caught glimpses of what was going on a few doors down with the baby girl. There were doctors in and out, a priest, family, hospital personell, etc. It was a difficult time. I just held and held my baby. I knew that I was blessed, priveleged, and ever so thankful to have my baby, all warm, pink and cozy, in my arms in that moment. I truly know that God uses moments like these in this journey we are on, to bring me back down to the realness of just how fragile life is. Oh, how I pray that I do not lose sight of the delicate life we live as we get home and get settled back in, someday. Lord, keep me aware and sensitive to these moments.

Last, there is a special lady here at Cook's who is my angel. I call her my angel because God precisely places her in my path at the EXACT times I need his touch. Truly. This woman called me when I was pregnant to schedule our tour of the hospital, appt with Dr. Tam, etc. She helped get me aquainted with the staff, the process of things, kept me informed of what I could expect, as best as she could. Throughout this 4 month journey since Noah was born, she always comes at the strangest times, to anyone looking from the outside. She would come by our room and visit occasionally and check in. See, she is a clinician for the cardiology dept and she keeps tabs on a lot of hlhs patients and everything. So, she keeps up with us for her job, but there is more to it. She is a Christian woman. She is not afraid to express that. She knows how to explain things and reassure. She is single, no children. Her work is her life. She takes care of elderly parents in between the work load and she has expressed to me, without realizing it, her longing for children, even though she will never have them. I told her she has many many children, including mine that are "hers". She is a special woman. One afternoon I was struggling with everything and with the lack of Noah's progress, I was sad and lonely. Janet showed up that afternoon. We talked, the nurse and I both asked her questions (she is an RN so she knows the ins and outs of noah's condition) but we were asking questions and I was just sceptical about a lot. She reassured me. She gave me hope. She proceeded to buy me a frappucino at the hospital's Starbucks and that was something she did not have to do. Just out of the goodness of her heart, she loved on me. She showed up again, at an odd moment the weekend we were waiting for Noah to get to surgery. She had the most convicted spirit about her, that Noah would be fine. He would come through surgery. He needed the Glenn procedure and he would do well. I have to say that I questioned her and doubted her, but she gave me the courage to fight some more, even in the weariness of it all, she gave me hope. She was Christ's hands and feet to me. She was his words spoken out loud.  Then again last night. I was feeling off. Waiting for today to come, waiting to see my hubby and daughter, Noah is at a slow place with feedings/speech etc. She was here late last night, as she often is and we were able to visit. She was able to answer some more questions, reassure me that I would be capable of taking care of this boy at home, that we would have a new normal, but it would be our normal and it will be good. She is an angel. She is our precious friend and mentor. I am so thankful for her.

So, my weird day, ended up being a great day. When we walk around ready to learn, ready to recieve, ready to be aware and open to lessons and blessings. God delivers. Be ready! Be willing. You might be that Jesus to someone. You might be that angel. Just be available and obedient. God will do the rest.

Love y'all.