I am still confident of this:
I will see the goodness of the Lord in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord
Psalm 27: 13-14

Wednesday, March 11, 2009

With great joy...and unbelievable sorrow...

Well, on Friday March 6th at 10:51pm Zac Michael Johnson was born weighing 2lbs 5.5ou and Evan Brett Johnson arrived at 10:52pm weighing 2lbs 9ou. After a sudden turn of events the night of the 6th I began to bleed, and the events of the night spiraled out of our control. Zac was in distress...he knew he had fought as hard as he could...but he needed out. It was an emergency c-section, and I was put completely out. I woke up in agony and terror wondering about our boys. Brett was by my side with pictures to show me our boys alive. But as joyful as the moment was...we knew that Zac was in grave danger. I never stopped hoping and believing that both our boys would come out with flying colors, but sadly this was not meant to be. Zac had to be resusitated and was put on major ventilators and meds of all sorts. His poor body just got worse each day. His blood pressure was a constant concern, his lung development was poor therefore requiring the highest care the medical team could offer. He was put on major medications that with each day instead of helping created his poor little body to become more and more toxic. His poor little veins just couldn't hold liquid they way they should. He wasn't able to pee and when he did it was just proof that his poor body was hurting. To us, he looked perfect in every way. He was so beautiful. So precious. I couldn't stop hoping that somehow the miracles weren't done for him. That somehow he would be the story the NICU would never stop talking about. Sunday morning at 2am Brett and I were awoken by my nurse saying the NICU needed us there immediately...Zac was crashing. It was the second most horrifying moment. When we got to the NICU Zac had restabalized, and I thought...there, you see, it's going to be okay. They had done a chest and stomach xray to see if there had been damage to his lungs or bowels that caused the instant crash...and the xray was fine. So then I thought even more that we would be okay. Their concern though was that maybe he had suffered a brain bleed. We knew if that was the case...we didn't have much hope for the miracle we so desperately desired. The next morning Zac's doctor came to inform us that our worst nightmare had come true. Zac had suffered a catastrophic brain bleed, not only on one side, but both. That it was the most extreme bleed a baby could have. That from that day forward Zac would never be okay or have any type of quality of life. And we had to make a decision...do we keep him hanging on with all these machines and meds that were slowly toxifying him...or do we loving allow him the peace and rest he deserved after 5 weeks of such strength and fight that he provided for his mommy and his brother. We went to see him...and we knew. Yet our hearts broke as his eyes searched for us when he heard our voices. For a split second when I saw his eyes look at me I thought, are you telling me that I need to fight for you...or are you telling your mommy that you did what you could and it was time to let him go be with his brothers in heaven? The answer was clear...yet the most devastating thing imaginable. How do we let our first born son go??? How do we watch his last breaths? But we felt honored in the fact that we were finally able to make a choice for one of our sons...that we could be there with him, together as a family as he left for heaven. We were taken to a private room. They kept one of his ventilators in for a few minutes as we held him together. I was able to dress him and wrap him in a precious blue knit blanket. We were able to hold him together. Then we told them to remove the final tube. And we got to see our son completely. He lost his coloring quickly...but he hung on for about another 1/2 hour. I asked to have him undressed so that he could lay on the skin of my chest. And this is where our precious little fighter boy Zac drew his last breaths. In my arms, on my chest as I thanked him for the amazing fight he put up, and thanked him for what he did for his brother. I told him that not only is he my first born, my fighter boy...but he is my hero and that I would always remember the way that he fought for us, and now I am to honor him by fighting to keep Evan healthy and strong. I can never dishonor what Zac sacrificed. But man, are we angry and hurting. I still believe that God provided amazing miracles. Zac hung on healthy and strong for those crutial 5 weeks. He protected us against infection. He didn't cause me to go in to labor right off the bat, where I could have lost both my boys. He allowed his brother life through his own. And when people congratulate me on Evan...I will say, he's a twin and his brother is a hero. My Zac will never be forgotten. We are struggling as we deal with the intense grief of the loss of Zac, and then we walk back in to that NICU past Zac's area and toward Evan...and our hearts are flooded with love and gratitude. Our son still lives, and is doing amazingly well to the surprise of everyone in the NICU. The very day his brothers ventilator was removed to let him go home, Evan's ventilator and oxygen tubes were removed because he was doing so well that he no longer needs them. He can breath on his own. And I truly believe that Zac gave him what breath he had left. In the worst, yet best day of our lives...our babies did something so entirely different, yet vastly as important. Words can not describe what we are going through. We were to be going home this week to set up both cribs and wash the boys clothes and continue to prepare to have them home. But instead we are faced with packing away one crib, one car seat, one bouncy chair. And we are faced with something we never thought we would...planning Zac's funeral. And it is breaking our hearts. We have shared so many tears together. My husband is a man of pure love and honor and dignity...the way he has carried himself through. Yet we have our many moments of clinging to each other and sobbing in our sorrow. We just don't know what to think. And the hardest part is one moment we are in such sorrow and then the next we are looking at Evan and smiling and feeling such joy and pride. You guys...Evan is truly perfect. I'm not just being a biased mother...he really is. He is so tiny, yet every inch of him is perfect. And honestly, I was actually shocked at how long both he and Zac were! And the feet and hands our boys have is unbelievable! There are so many things that I remain grateful for. And at first I thought God had failed me. That He had played the cruelest trick of all. That there was no way He possibly cared after doing this to us again. After taking a third son from us. We are tired of packing up memories of our sons in boxes. And then I realized...even though I want to blame Him...He hurts with me too. I realized that long ago I had said that I knew our boys were on loan to us...that these precious children were gifts from HIM. I just wish so badly that Zac could have been on loan to us so much longer. But Zac put up such a fight. He was and is a witness to all who knew of him, and he always will be. So many of my doctors and nurses admitted that they were so shocked that he had hung in for so long. And even after his birth he fought for 2 1/2 days. We were given the opportunity to see his eyes, smell him, touch him, love him. And love him we do. We have many pictures of us with him, and we were granted the peace of being with him as he passed. He wasn't with strangers, he was in the arms of the two people who loved him most. I just pray with all my heart that the angels that were there to guide him home were his brothers. And now I chose to believe that my three boys are creating nothing but havoc and commotion in heaven. I often find myself wondering "I wonder what my boys are doing now? I wonder what Zac is telling them? I wonder if they are all cheering on their little brother Evan?" I don't understand why this had to be the ending. I know that one day we will be together with our sons...we will have a full house in heaven. But all that we have to face now. I will one day tell Evan what his brother did for him. I will let him know that this was how much his big brother loved him. That even within me he was watching out for Evan. And from here on he watches us all from heaven. I wonder if Evan will ever feel something different...someone missing. If that twin connection will remain? I agonize at the thought of each birthday and milestone. Being so full of pride and joy for Evan, yet always seeing that missing piece. That precious little boy who gave his life. I see Zac's precious beautiful face whom I saw so much of his daddy in. Then there is the joy of Evan. This little boy who is just going leaps and bounds. Yet there is this terrifying fear that we will get a call saying that Evan has had a bad day. We know it is inevitable. All preemies do hit a bad day. Yet compacted by what we experienced with Zac and all the news we were told...how does ones mind not go balistic? I pray with everything in me that Evan will be spared from any bad days. But as of now, he is doing so well. Not only are the breathing tubes out and the oxygen, but he has been taken off precautionary IV antibiotics. He is being given just all the nutrients, trace minerals, lipids and vitamins that he needs. He is now being fed my breast milk. He is fed through a gavage tube (straight to his tummy). Last night I just HAD to see him. Brett and I have been working on Zac's funeral arrangements and I just had to see Evan to know he was okay. We went up around 11:30 pm and I was able to change his diaper (you'd drop when you saw how itty bitty these diapers are!) and do mouth care (wet q-tip that runs over his lips, gums, cheeks) and Brett was able to hold the tube for his feeding!! Before each feeding they withdraw any remaining milk from his previous feed to see how well he is digesting things...tonight not a drop was withdrawn!! It was really a very special night for us. It is now 2:30am and neither of us can sleep. Nights are once again the enemy. I never knew I'd miss being pregnant as much as I have. As my tummy begins to deflate and get soft again, I ache. I miss feeling the boys moving inside. I miss the dreaming of the weeks ahead. I'm angry that this was stolen from me. Yet I watch Evan and I see that he is just how he was inside of me...very active...loves to stretch and punch and kick. And boy oh boy, does our son have attitude! He gets SO mad at the nurses when they disturb his sleep, or change his diaper, or have to do an IV. The other night I actually heard him crying in anger!! It was the most precious sound ever. I feel amazing love and pride for him. I feel at peace when I am with him. I know that he needs all of me right now...and I have that to give. I have to honor his brother by keeping it together to be the mommy Evan needs. Life will never be the same. There will always be a son missing...but we will pour ourselves in to Evan. We will never forget the gift we have been given. I really should sign this off now. In part of being there for Evan it requires that I actually sleep. I've been exhausted. Tomorrow...I mean later this morning...we will be meeting with the funeral home to make arrangements for this weekend. I don't know how we are going to do this. I am being released tomorrow from the hospital. Almost 6 weeks later. A part of me is absolutely paralyzed by fear to go home. I don't want to face it. And I don't want to be apart from Evan. I know that my days will be lived out here. Not a day or moment will go by where I am not here. So my blogs my not be quit so often...but now I have to focus on Evan. I will continue to share Evan's journey while in NICU, and anxiously await the day he will be coming home with us. I thank each of you for your thoughts and prayers as you have journied through this with me. The journey isn't over, and I look forward to posting a picture of our precious sons. But that might be a few days. Please continue to pray ferverently for Evan. That he will be protected from germs that would cause a set back or illness. That he will be the exception to the rule and NOT have any set backs. For those of you who question faith and who may have been touched through all the good you have witnessed...don't ever forget that. God is still a good God. We didn't get the answer that WE wanted...but there is a reason...somehow. God is not a mean God (even though that's how we feel right now in all honesty), but He and I have been through too much for me to give up now. And I still have a precious little boy to raise knowing about God and His love for us all. God is no stranger to pain. He watched His own son be nailed upon a cross to sacrifice His love for our freedom...and He has given us all new life and new hope through that. His death and then resurrection allows me to know without a doubt that we will be together with our children for all of eternity one day. That Monday was not a day where Zac just died with no reason, but a day where we knew that we would hold him again. And I don't doubt that for a moment. I know that he is in a better place. That had we been so selfish as to try to get him to hold out longer we would have just caused him more pain. We chose to give his short precious life dignity. And we will continue to do so in how we raise our little Evan. I wish this ending could have been picture perfect, but in it's own sad way...it has. We will never forget our Zac. He will always be our first born son. And we couldn't be prouder of him for all he did so that his precious brother could at least have a chance! Rest well my little fighter boy. I loved you more than I ever thought possible...and always will. Zac...remembered by God. March 6/09 to March 9/09. Your mommy and daddy are so proud of you, and you are always with us.


  1. Oh Heather, my heart is broken for you as I read this. You have so beautifully honored Zac with your written words, I am in awe and tears and don't know what to say except I am so so sorry for the loss of your precious fighter boy. I'm praying for you, your sweet husband and precious Evan.

    -Ronda (RJMB from HP)

  2. Heather-I have absolutely no words..... You honored your son beautifully and your faith and strength amaze me continually. You are one of the strongest women I have ever met and I am truly blessed to have met you. You have changed my life in the short amount of time I have known you. I am sitting here in tears for you and wish there was something I could say. Just know I am praying for you every single day....for you, your husband and your precious miracle Evan.


  3. Heather & Brett,

    There are no words to express how sad we feel over the loss of fighter Zac. What a beautiful, special angel he is! Your words brought tears to my eyes, and I know that Zac knows how much you love him. We will pray everyday for your hurting hearts and for Evan. I wish so much that we didn't live so far away from each other. I would love to be able to help you in person. I am so sorry that I can't be there. You are continually in my thoughts and prayers.

    Love in Christ,
    Kristina in GA

  4. Heather,
    you tell it so perfectly from the sensitivity of a mother's aching heart! Praying for all of you as Evan grows (and praying like crazy that he has NO setbacks) and as you and Brett grieve and prepare a service for Zac, your special little fighter. One thing, don't forget to take pics of everything or have someone do it for you! That was SO helpful for me after Isaac and Isaiah's funeral. Praying sweet friend...I'm SO sorry you are going through this. For me our twin's funeral was a time of hearing the comfort of the gospel and rejoicing...and healing--some closure. I pray it will be the same for you.

  5. Many times through the past weeks our thoughts and prayers have been with you,Brett and the boys. We share your burden and uphold you before God in prayer that you continue to know the presence of His hand on your household. What an amazing testimony to God's grace that you honour Him as you have done through such agony. As Job did in his tremendous pain, you too will know God's abiding strength and peace beyond your understanding. To God be glory for Zac's life fight, birth and passing. His strength made perfect as he finished the race.
    We are praying for Evan that good days lay ahead from strength to strength. Our love and prayers, Sherrie & Graham

  6. Hi Heather,

    I have only met you a few times--I'm Ron & Linda Hallden's daughter-in-law (Craig's wife). I have kept up with your fertility struggles and such and have prayed for you MANY times--as Craig and I have faced our own struggles. I am praying for the peace of God to guard to heart today and for little Evan to continue to fight hard. You are right--there is going to be a sweet reunion one day, and you will hold all those little boys!! Just wanted you to know we were thinking of you today and will continue to pray for your family. Our deepest sympathy to you and Brett!

    Marcy Hallden

  7. Heather and Brett-You are doing a wonderful job honoring both your sons. Zac would be proud of all you are doing for him. What an amazing little boy to accomplish God's purpose for him in such a short time. It takes the rest of us so long to do that. Losing a child is about the worst thing imaginable, yet God is always with us, guiding and comforting. I pray you continue to see the hand of God working good things in your lives. And what a blessing to know with absolute certainty that all of your boys are waiting in heaven to see you. And for Evan, prayers that he continues to grow strong so he can be used to further Gods kingdom just like his big brother. May God give you comfort in His word and strength, physical and spiritual, for the coming weeks and months.


  8. I wish I had words that could comfort you.

    Please know that you, Brett & Evan are being prayed for.

    I am so sorry.