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 25, 2009

NICU...a parents "understanding"...

Evan is 3 pounds as of last night!!
Well, last night we went back to visit with Evan after the nurses shift change as usual. This is Brett's time...daddy time. I get the joy of spending all day with Evan, so evenings are all about daddy!
Grandma and Grandpa J came to see their little grandson.
We didn't stay long because of some stuff going on with another little guy that has been in NICU along with Evan. A little guy who was in the first bay where Evan started out. And sadly things weren't sounding too good. The poor mom was crying and we knew there was a battle going on for this precious little boy. Both Brett and I looked at each other, and we knew we were both being ripped back to our days with Zac. When we are in the NICU it is common courtesy to TRY to stay as out of ears range as possible with others babies and situations, but the space is cramped and sometimes you can't avoid the conversations. I don't discuss what goes on in there out of a mutual NICU parent respect. If you've never experienced this ward...first of all, phew, but secondly...you can't even begin to try to understand the emotional rollercoaster NICU parents go through. There's no point in even trying to understand it. It just won't happen.
But seeing this mom in tears and in turmoil...all I wanted to do was go to her and give her a big hug. So instead I took her a box of kleenex. I know that for those parents in NICU who don't know we had our Zac and lost him, they just see us happily with Evan...but Brett and I get it when you see the look of pain on a parents face. We feel their agony. And yet, there is nothing you can do for another. To say "we understand" seems so rude almost. We understand OUR pain and sorrow, but can one ever truly say they "understand" another's pain and sorrow?!
Testings were going on, so we cut our visit short with Evan out of respect for this young couple. It was hard to leave Evan at that time because our emotions were raw again, and it's instinct to want to stay and protect him. Yet he's in the best hands and the best care.
I'm sending out a request for an unspoken prayer for this little boy. It is so hard when we see a little one who has been there the same time as Evan now struggling more. Please pray for peace, comfort, strength for this couple. Please pray for God's protection over this little one.
I find myself praying for the other little babies in NICU while I'm with Evan. They are general prayers because I will admit...I often wonder now what good my prayers actually do? I know it's because I didn't get the answer for our first born son...and I feel somewhat...angered, for lack of better explanation. I feel on guard with prayer. I won't stop, but I will admit that I feel my faith a bit weakened these days. Yet, when I look at Evan and the blessing we have been given...I know that my prayers, although not answered fully to what we would have hoped for, have served Evan well. My prayers were answered through pain in losing Zac. I don't understand that...I don't get the "why" of it all. I find that I am asking the "why" question a lot more lately.
I feel almost guilty admitting the rawness and truth of my feelings...but hey, I'm human! What human person hasn't felt weakened and angered. So what's the point in hiding the truth of how I feel. I haven't done that since starting this blog, so why start now. If I want to share the journey, then I have to be true and real.
Don't get me wrong...my faith is still in tact...it's just somewhat bruised. I won't walk away because I want to be together again with all my family gone before. And I know we can't get through the days ahead without the strength that God provides.
People tell me how strong I am. I don't feel strong. I feel like I walk around in a haze trying to sort out how and why things turned out this way. I feel almost like I'm not even present in my own body some times. Like I'm going on auto pilot. It's not ME that's strong...I can only credit God for giving me the strength that I need to keep putting one foot in front of the other, for taking one breath after the other. I feel soooooooooooo blessed to have Brett to get through these days together with. I feel even closer to him than ever...is that possible?!! When I think about him I feel so much love, admiration and pride. It saddens us when we hear how couples often split up after going through something like this. I feel truly fortunate that we can talk about this openly and candidly. We have been through sooooooooooooooo much on our journey to a family, and I just feel really blessed to have Brett as my partner through it all.
On a different note...yesterday was bizarre...in the mail we received Evan's health card! At first I was confused and it almost felt strange to open this piece of mail and see Evan Brett Johnson on something! I smiled. And then a tear escaped...Zac's card is not in there, and won't be. What should have been two health cards for our boys turned in to a single card with one name. And then it hit...here we go...the milestone moments that will always be bitter-sweet! And here come the tears once more just typing this.
Last night Evan hit a truly wonderful milestone...he is 3 POUNDS!!!! He's juuuuuuuust under 3lb 1ou. By tonight he will have passed that. It is CRAZY how quickly he has gained this weight, but I suppose that's what would happen naturally if he and Zac were still inside of me. The last trimester where they pack on all the weight.
I can't believe how much I miss being pregnant, and how gyped I feel for missing out on pretty much the whole 3rd trimester. I know that people would say I'm "lucky" to not have to go through the uncomfortable 3rd trimester...but that almost hurts to think someone would think that's "lucky". I get saddened, and honestly frustrated when I hear people complaining during their pregnancy. Yes...I do understand how uncomfortable it can be. I was very uncomfortable a lot while at the tail end of carrying the boys. I could barely sleep I was so uncomfortable...but I could never complain because I knew what and who I was carrying inside was so worth every second and every uncomfortable moment. To be pregnant...what a blessing and worth every moment of every pain, discomfort. I suppose this is coming from a person who fought for almost 8 years for such an honor as to ever HOPE to BECOME pregnant. So my view is possibly different from others who has never had to struggle.
Anyhow, we are so thrilled for our little Evan for reaching the 3 pound mark! Very proud parents indeed!!!
I spoke to Evan's night nurse and he had only one Brady, but it turned in to an Apnea so he needed stimulation to get out of it. But again the nurse assured that this will be something he will outgrow as he gets older. I was very happy to hear that he only had one episode last night! That's really good news.
I will continue to thank each of you, even those I don't know, for all your prayers for Evan. I can't stress enough how much it means to us...especially to Evan. You are witnessing the answers to your prayers. And we ask that these prayers do not miss a day. We still have weeks ahead where Evan will remain in NICU, but I also ask that you would pray for a hedge of protection around Evan's isolette so that he will be guarded from ANY germs/bugs/infections. That his lungs will remain protected against anything that would cause him to work harder or anything that would cause his lungs/body any stress.
We feel so blessed by the support and encouragement from family, friends and even people we don't know personally. We could not get through this without this support. For the prayers for our little Evan...I truly can't thank you enough. Please keep those prayers going!!
Well, I better go and eat some breakfast and get ready for my visit with our son this afternoon.


  1. Heather you are so normal ;) Don't apologize for the truth of your feelings! Anyone who has lost a child will surely get it. You are doing such an awesome job surviving all that you've been through--the Lord is giving you such strength. Praising God for Evan's growth...and lifting you up as the continual reminders of Zac will come! HUGS

  2. adding prayers for this other little boy and his family!

  3. Like Heather said, what you feel is normal. And the Lord is, has to be, our strength. Otherwise, we'd never make it on our own.

    Praying for you, Brett & Evan as well as for the other family you mentioned.