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

Friday, March 20, 2009

Evan's big day

Yesterdays snuggle time. What a feeling.
Evan loves to "hug" himself. I love this pose. But then the stinker cuts off his air and I have to move his hands to remind him to take a deep breath! Loves to keep me on my toes!!
Holding mommies finger. He has a pretty good grip for such a teenie guy!
Well Evan had a big day. He was taken off his pressure air nose prong thingies (nice description, hey?!) and is back to breathing strictly on his own. His feeds were increased a tiny bit again. We are working on getting him to gain weight. Tonight we found out he gained 9 grams since last nights weigh-in. GOOD BOY EVAN!!! Keep it going!!!! Evan is still also maintaining his own body temperature without having the isolette to be told to warm up or cool down from his skin probe. The isolette is just set at a temperature, and Evan is holding his own!
So he had a big day!! And I couldn't be more proud of him.
We tried to do kangaroo care today during his feed, but it didn't last long. He got too comfy and started to forget to breath and his oxygen dipped right down. That was a first!! BUT, like I say, he had a really big day with lots of changes so it was probably just too much for him for another outing. The nurse put him back in the isolette and had to wave some oxygen under his nose to help him out. My heart was racing!! I didn't like that at all. So I'm TOTALLY fine with letting him be chilled for a day or two until he gets used to all the big steps he took today.
OH MY GOODNESS, today's nurse had him in newborn diapers instead of the itty bitty preemie diapers. It is HILARIOUS!! They look HUGE on him! But maybe it will encourage him to fill them in quicker.
Tonight Brett and I headed back after the night shift change. Evan had a bath and didn't like it at all. Typical boy! :) hee hee. Then Brett did his feed and did his mouth care. And then he read Evan his bedtime story book. It was so awesome to just sit and watch and listen! And Evan's vitals were beautiful the whole time. He knows his daddy was there, and he was so calm when hearing his voice.
This is the strange thing of what Brett and I have to deal with. The pure joy of Evan, and the unbelievable love we have for him. Yet...the pain and sorrow and how much we miss Zac. The hole is there. The emotions are so high and low. This morning I honestly thought I was going to lose my mind. While sitting alone in my living room I was completely overcome with sorrow and pain with the agonizing sadness in my heart for Zac. We are to carry forward, and I know that Zac does not want us to live in pain and sadness...but it just seems to wrong to have such high times without Zac here with us. He was meant to be here...and now how does a person deal with what is now our reality?!
I still hang on to God and trust that He is taking special care of Zac. I am trusting God that He will allow no bad thing to happen to Evan. I believe more than ever that we named our boys right. Zac will be forever remembered by God (and his mom and dad), and Evan truly is a gift of God's graciousness.
Yet the moments where my sorrow and confusion catch me and hit me hard...I feel so angry and so lost. Today I just felt on edge and was watching Evan like a hawk. I know that the tiredness and exhaustion of everything is catching up with me and causing me to react in strange ways. I know that my hormones are completely out of wack. But I feel like I don't know what to trust right now. I don't want to be mad at God. I don't want to allow thoughts that He failed us to enter my mind. I will never understand why this has happened, but I will fight to keep my relationship with Him on track, and will continue to trust Him where Evan is concerned. The fear in me won't allow me to believe in the day that Evan will be coming home...yet I trust that God will allow this. Evan has a great purpose in this world, and I will do my best to help him find that purpose.
Our story is no where near over. There is so much more ahead. There will be days of joys and fears while Evan is growing in the NICU. Evan will now have a chapter of his own. We are blessed by our son. We feel truly blessed.
I pray that you will all continue on with me on this journey. To learn what I am learning through Evan, and through what Zac taught me. Zac taught me to fight even when things seem hopeless and no one gives much hope. He taught me to love with all my heart even though the time was far too short. He gave me such joy and such pride.
Now Evan continues on with such a fighting spirit. He is a champion. He is making leaps and bounds. I couldn't be more proud. I truly believe that his life has such a great purpose and destiny too!
My boys are teaching me many things...even Zac from heaven.
Please continue to pray for us as we grieve, and rejoice. Please continue on this journey with me, and allow Evan to show you the next chapter and to show that miracles continue on! And please continue to walk by my side. There will be days where my words may be raw...but I believe in being real. And there will be days where I'm just a babbling proud mommy.
Please continue to cover Evan with your prayers. Pray that God's hand of protection will never leave him and that he will endure NO set backs!! I know that Zac and Evan have touched many lives in the NICU, and I believe they will never be forget. I know that the staff look forward to seeing Evan continue to grow once he comes home. I've already been told I better send pictures of him as he keeps growing! And we will make visits.
We dream of the day where we are told we can take him home, and for the final picture being taken of the three of us walking out those doors. And you know...Zac will be right there with us all too...coming home! I believe that he is his little brothers guardian angel. Always has been, always will be!


  1. Someday you will LAUGH at how big the newborn diapers look on him. When he is in high school and playing football you will wonder where those little cuddly days went! :)

    Oh honey, I UNDERSTAND the hurt, pain and disappointment. It has been 4 years since we lost Camden and it is still there. Different circumstances, but the pain is still there.

    Ride it out. The sun is coming soon!


  2. Lucy's twin Camden passed away at 4 months in utero; they both had horrible birth defects. 2 years after that we had a little son, and I just miscarried twins again. We are currently in the hospital 10 hours away from home, after she is recovering from her 4th surgery. I wrote what is below a few days after finding out about the loss of set of twins #2.
    Today I went to Wal-Mart, alone. I just needed to be alone.

    I wandered the card aisle, looking for something for Scott. The other night when I had my face to the wall and was trying to figure out some way not to feel disappointment, he started talking about cars.


    Incredulity sliced the air between us, a dull and aching knife.

    How could he possibly be talking about cars at a time like this?

    'I'm going to sleep,' I hissed through angry lips.

    'OK. Well I was just trying to distract you so you wouldn't be thinking about what happened today. I don't want you going to bed alone and sad.'

    He is sweet.

    And for some reason, I stood there today in the middle of the card aisle, right under the Mickey Mouse balloons, and bawled my eyes out.

    I called a friend:

    'This morning Lucy was wondering why she couldn't wear under*wear like everyone else. And there was poop everywhere from her col*ostomy bag and she was sobbing, and it was just too much. It was just too much.'

    I wandered the store and cried, grabbing paint chips and wondering which one wouldn't look hideous in my living room.

    Wandering and feeling something - the thread of a fabric, the cold underbelly of a pot, the grain of an end table - is wonderful therapy. Hearing the sounds of people buying milk, maxipads, lightbulbs. I like to imagine that they are not having a terrible day. In the bathroom, I pretend that the wall is a fascinating thing. The women next to me wonder why tears are streaming on my cheeks.

    That is good, too.

    And yet, I still long for a connection. I want someone to look at me and smile, to tell me with their eyes that they see my pain. And as quickly as I think they might, I turn away.

    I feel too much pressure in the roles I squeeze myself into that sometimes to be free of them is the most wonderful gift of all. No phone calls to return, people to tell. Just me and some ugly placemats.

    I remember I need to buy Lucy some undies. I head over to the little ladies department, and phone her to ask her opinion.

    Her voice, high and sweet:

    'Hi, Mama. I need Ariel.'

    'Are you sure? Because the Littlest Pet Shop ones look pretty great, too.'

    'Yeah. Littlest Pet Shop.'

    'Or there's Tinkerbell.'

    'Yeah, Tinkerbell. I La You, Mama.' (she always runs that phrase together)

    Tears fall again, and I wipe frantically at the package, hoping that whoever needs Ariel in a size 8 doesn't mind that the offer for the dream Disney vacation is now ruined.

    Four years ago, I was begging God to let me keep her. I cried, prayed, imagined her in a Strawberry Shortcake nightgown. Thought of her running after her dad, picking daisies in a field, all that generic stuff you imagine before you're actually a parent.

    Sometimes He gives, and sometimes He takes. It's ok, It's ok.

    The phrase is a lullaby.