Days after my little Evan was born. A gavage feeding while learning to suck during his feeding. You can not imagine how tiny this preemie soother is!!!! I still have it!
My little mans teenie pencil legs :) So frail. So little. No fat to be seen.
This was before the 4th day of Evan's arrival because he is still on his ventilator here and he came off it on day 4 of his arrival. But those who know me know I have small hands...and if MY hand covers more than half of Evan's body...you get a slight glimpse at how small he was!
Usually I post about the struggling with my grief...my sorrow mix so "perfectly" with my joy.
But today I want to share about my sweet Evan. The gift we were "allowed" to keep.
On the desk top of my lap top I have a small screen that randomly shuffles through all my photos and does a slide show. It's quite fun as I will occassionally glance and think "wow, I haven't seen that picture in a long time!" Some pictures bring a huge smile to my face from days before our blessings arrived, some pictures warm my heart by the love of family, some pictures bring a tear...for moments lost. And some pictures just blow my mind...the pictures of this tiny 28wk 1day gestational baby who weighed a mere 2lb 9ou...just two blocks of butter...this little miracle who I got to keep. These pictures sometimes run chills through my body as I look at my son, the boy who was meant to continue to grow within me along side his brother for many more weeks, this little baby was in our world and showing me the meaning of determination.
I look at those pictures and am catapolted back to NICU days...the early days of looking at this fragile little baby...still not yet fully developed...chest caved in, no fat to be seen (definitely not a chubby baby at all!), skin hanging from his body, his head still yet to round out, his face to finely defined. Yet he was the meaning of strength and will.
I would watch as he would stretch and wriggle about and kick and reach and try to pull the gavage tube from his nose or mouth, and watch as he would wrap his itty bitty fingers around his monitor wires and would just hold on to them.
And the most bizarre thing...as I watched him...it was as if I could still feel those movements inside of me. Like they were happening inside me! I still felt so physically connected. I felt lost not watching my belly move as the boys rolled around and played. I don't know the right word to explain how I felt...but "numb" is the closest word. I was meant to still feel my boys inside me. My body was not prepared to be without them yet. And watching Evan just enforced that physical attachment and feeling of loss...even though I was seeing who I had gained.
My body didn't have time to prepare for the departure of my boys. It didn't get to go through the usual routine. And it is crazy how your body realizes this!! In a physical way, not just mental and emotional.
But I watched Evan every minute of every day. I became a permanent fixture. I would sit beside his isolette and just stare at him, and the monitors...which of course the nurses always tried to encourage you NOT to watch the monitors. But...as a parent...it's hard not too. By the end I got better at it. I started to learn what they meant by "watch your baby, and learn his signs...don't rely on a machine, because when you go home with him, you will need to know his signs." Ahhh, I loved our nurses. We were so fortunate to have such wonderful women along side us. A few hold such an amazingly special place in my heart. I will never forget them! Never forget the ones who sat diligently by Zac's side through his struggles and through his days, and Karen, the amazing nurse who walked us through saying goodbye to Zac. The nurses who loved my boys, and the nurses who always commented on Evan's perfectly puckered lips like he was forever waiting for a kiss!
My focus was totally on Evan. I didn't care that I still hurt from my surgery, didn't care how tired I was. I had to remember to take moments to nourish myself in order to nourish Evan (with the encouragement of my mom and the nurses). I literally lived morning to night at the hospital even after I was discharged.
I felt beyond lost walking in to my home without our sons. I felt like my heart was ripped out each time I had to do that. I couldn't relax. I felt anxious until I was with Evan again.
Every day brought new worries, or maybe it was just that they were forever carried over from the previous day. We knew that anything could happen...good, or bad. We knew that Evan was very early and very tiny. We knew that set backs were inevitable. We knew everything because we were reminded of that every day. Not just by the loving "grounding" from staff, but also by looking around the unit. You can not imagine life in the NICU if you have never had to step foot in there. And trust me...you are so very lucky. So lucky. Even if you had to spend a day in there...it would only be a moments glimpse of the reality that not everyones story ends happy. We all hear the happy stories...because really...who wants to hear the sad ones? We live in this cloud of bliss when things are good...and how fortunate those of you are. I am truly relieved and happy for you that you have never had to face the other side.
I can't say I don't hold envy. I can't say that I don't feel a tad bit jealous. I can't say that I don't struggle every day asking "why?!" And I can't say that every day I have to get my attitude in check. I know it's not right to envy and feel jealous. I know it's okay to ask why, as long as it doesn't consume you. But right now...the reality is...life isn't always perfect. Well, is it every truly perfect in the purest form of the word? How can it be when we live in a fallen world?
However, life can be filled with perfect moments. I have had moments that felt so perfect. I have had glimpses of blessings. I look at Evan and I feel perfect and blessed. But I have also asked the question "why does someone else get to be "more" blessed than me? What makes them better than me?" Yup...that's in my bitter moments. And I'm working on that attitude. Because it's not right. I have to learn to focus on ME, and not make others perfect endings reason for me to feel broken over my circumstance again and again.
It's almost like I want to just enclose myself in this bubble and block out any triggers that will bring up hurts...but that is so wrong. Because in doing that I am missing out on so much.
I want to feel pure joy for others and their happiness. I do feel joy...but I'm lacking on the "pure" part. But I'm trying!
We felt so fortunate that each day that Evan was in the NICU he always had such good days. Even with all the bradys and apneas...we knew those were just part of how premature he was and that eventually he would outgrow them. I even thought it was funny how they treated these with caffeine for Evan! When I learned that I almost felt jealous because my son was getting caffeine, and I had completely cut it out even before my IVF retrieval and still hadn't touched it! But a while after they began the caffeine treatments I finally decided...it was my turn! I needed some caffeine treatments myself! I allowed myself a small half caf, half decaf a day. I remember that first sip...ahhhhhhh, it was "perfect"!
But I will NEVER forget the fear of the first setback he encountered. I will never forget the solemn look on the nurses face as she came out to get me and explain what was happening. I will never forget how broken and terrified I felt wondering if this was the beginning of the end of my time with my son. I remember finally getting to go sit by his side, and my normally active son was lethargic. He was back on IVs for his feedings and for antibiotics. He gavage feedings stopped. And I felt...angry. I felt angry at God all over again. I felt like screaming "Was it not enough for us to lose Jack and Ethan?? Was it not enough to taste the joy of Zac and Evan only to have to hold my Zac as You took him back?? WHAT MORE DO YOU WANT FROM ME??? How much more can you break me??? I'm done! I have nothing left in me. I am more broken than I can imagine! YOU WIN!!" Truly...that is what I felt in that moment. Even though knowing logically that set backs do happen, and knowing that we would have been a rarity if Evan had breezed through his weeks in NICU with not one set back. But logic doesn't help when your emotions are called in to play.
But we continued to hold Evan in prayer...as did so many of you. And what would we have done without the prayers of so many loving people?! People we don't even know! Those prayers carried our son through many days where we had nothing left to say to God and could barely whisper "protect our child...please!"
I remember the first time I got to change Evan's diaper. MY WORD...you have never seen such a tiny diaper!! How do those even exist!!
I nannied, I babysat for YEARS and changed a zillion diapers...but for the first time ever...I was afraid. I was afraid because holding my sons tiny legs were like holding two tiny pencils. It was nothing I had ever experienced before. And it scared me. I was thrilled to finally get to feel like his mommy...but I was terrified. I was terrified because I felt like I had failed him while he and Zac were inside, and I was terrified that I would hurt him or fail him now.
There were lots of moments where I relied heavily on Brett to do certain things because of my fear and because of the emotions and scars that I was carrying. Brett would just look so confident and so amazing. If anything...it was just so precious to watch him caring for his son.
I wish I could adequately describe or show how tiny Evan was. Even in pictures, they are brutally deceiving. Except seeing Evan and Zac made me think "how on earth were those boys inside ME!" It's crazy!
Evan could fit in one of Brett's hands. I had to cup my hands with them overlapping when I would get to hold Evan. It was insane!
I've wanted so badly to upload the video of the first time I got to hold Evan...the fourth day of his life. I've tried before but it doesn't seem to want to work. But I'll have to figure it out...because I love that video.
All this to say, I've just really been overwhelmed with the memories of each of Evan's days in NICU, and now watching him today...it blows my mind. I feel very fortunate. I feel honored to be a mommy to my living child, and honored to be the mommy of my three in heaven.
I am broken for a dear special friend who is hurting with so many questions and disappointments. I wish words could heal and "fix" things. I wish there were answers to be found. I wish I could understand why so many of us struggle in the quest for a family where others seem to be able to have their husbands just LOOK at them and they get pregnant.
Infertility, the quest for answers and the journey of treatment...the hopes, the dreams, the realization that not even the medical world can fulfull our hopes and dreams...it is such a rough journey. Even when we finally hear the words "positive"...words many of us have spent YEARS praying for...even then there is no garauntee for the happy ending. Even then we are faced with heart ache and sorrow of having to say goodbye to the child/ren we dreamt so deeply of.
Never have I ever wanted my sorrow to overshadow my joy with Evan. He is my light. He is my laughter and my silliness.
Even as I type this...my monkey child has decided he does not need a nap this morning even though he is exhausted...and it kills me to listen to him jabbering away and not just go in and swoop him up and giggle with him.
Even though each day holds that place of missing Zac...I have Evan here in my arms. And Evan needs to know that he is so loved, and so cherished, and so the answer of my prayers. As angry and hurt as I am at God...I am also thankful and humbled and grateful.
I often get told "God understands, because He watched His son die too." But...God also got to watch His son rise again three days later and sit at His right hand. My son did not...not on this earth anyhow. I know his earthly departure brought him to an eternity of life in abundance. And I know that I will be joined with Zac again one day in heaven...but it's the days we are apart that hurt.
Yet Evan is here!! He is my light and the air that I breathe. And I am filled with joy! My son is well, and has overcome the odds! He is my champion!
And today I want to just bathe in that joy. I want to fill myself with the awe of watching this little monkey flying all over the house, destroying things and scattering everything in his path of destruction.
I want to watch this little 2lb 9ou baby who once lived in an isolette with his mommy wondering so many things and dreaming so many dreams...now getting the opportunity to LIVE some of these dreams! I want to wrap Evan in the love and joy he deserves.
I have Zac tucked in my heart, and Evan in my arms. For both I am forever blessed.