NICU Days

I think that I have put off the next blog for over four months because I don't like these next 10 days. They aren't my favorite chapter of our book by any means. These are my first 10 days as a mother, my first experiences with my son, they should be some of the happiest moments in a woman's life, but the pain of these days is still often too hard to even remember. Tonight, I will probably just take you down those first five...and I will try my hardest not to put off this whole part of the story.

The last time I wrote I was wheeling down to see my son after just learning his true prognosis. My wheelchair that looked more like a shopping cart and all my I/V's were off.

I have to admit, I don't know that I remember that first time in there exactly. I do remember that day coming in and out feeling so bad because I thought, if my son was moved to another bed, I wouldn't be able to find him. I felt a disconnect that is hard to even admit. There was no lack of love, but I wasn't allowed to hold him and it prevented me from feeling like I could even discern my child. When Evan was born and they would take him to the nursery for a quick trip for one reason or another, if he started crying, I knew it was his cry, with Will I didn't have this immediate sense of motherhood. To this day, I can't tell you if it was out of fear of losing him or lack of touch with him or a thousand other reasons, and I am very blessed that this feeling only last for a few short days, but I don't know if I will ever forget that lost feeling that I had those days.

It wasn't until much later that I also realized Jason and I did a horrible job early on conveying just how sick Will was. I think this was because the hope we had inside us was too great for anyone to think that this little life could be so temporary. Afterwards, I realized that it made some of our decisions and some of my reactions not add up for others, but in those days, I lived in a fog that was unshakeable.

Will was a beautiful baby boy with these big eyes. He was so swollen initially that the pictures are almost unbearable for me. Those days are definitely not the pictures filling the walls of my home. I did take a lot more pictures those days than I did later. I still hate that I didn't get a picture every day of his little life. I know that people think I am crazy that I took a picture of Evan everyday for the first two years, but even to this day, I just always want every moment captured to hold forever.

Those first few days, we sat at his bedside and read book after book. I had an amazing nurse who would come find me when I needed to be taken care of, always knowing where I would be. I had amazing family that would just sit in the waiting room down the hall. They knew visitation hours weren't long enough and with only two people going back at a time, many of them would rarely get the chance to come back, but they just sat keeping each other company not sure where else to be, but wanting me and Jason to know we weren't going at this alone. I would stroll through for visits, sometimes sitting while Jason would take someone back to meet our son for the first time.

I cry even tonight sitting here because newborn babies aren't supposed to have visitation hours and to only be seen two-by-two and they sure aren't supposed to sit in a bed unheld by their own mother.

I was discharged from the hospital 5 days after he was born. It was all insurance would let me stay. I had just had a C-section, so no one would let me stay in the little make shift NICU sleep rooms, so Jason had to drive me out of that hospital and to our hollow home. It was hollow for many reasons that night...no mother should EVER have to drive away from the hospital without her newborn baby. Add that the fear of not knowing if your child would be alive when you returned and the fact that you, as his mother, still hadn't even held him in your arms....I sat that night in the floor of our kitchen and whaled a cry like I had never cried. I can honestly say, I cried harder that night, so unsure of everything than I did the night that Will left this Earth in my arms. The night he left this Earth, he was in my arms where he was supposed to be and the Lord was taking him for me to keep after. I had time to be his mommy and to yell it out with God, but that night laying in my kitchen, I hadn't had any of those moments yet and I didn't know if I could survive if I never had those moments.

I raced to the hospital as visitation hours opened that next morning. I had a cooler full of milk for my child and an ache to be with him that was all consuming. Jason told the nurse that day that I had left the hospital and had yet to hold my child and she whipped around and said that wasn't acceptable and she closed this little curtain around us and let me take my son into my arms. It was such a beautiful moment.

Now I know some of you are reading asking why wouldn't they "let" you hold him, and in all fairness, I think they would have let me do as I please to some degree, but they were as scared to death of his disease as I was and no one was suggesting it. I guess because of fear that we would bring him more pain by causing him more breaks, Jason and I hadn't brought up holding him and with the amount of wires and tubes, we couldn't even really be sure how we planned on getting him up and out of his bed. I think to later visits to the PICU when I would have beat a nurse if she laid a hand on him without my help or without me being present and the stark contrast between those days and these early days. He felt like he belonged more to the hospital and nurses at that point than he did to me. Holding him that day helped to start our bond and show me how to be the mother that I was supposed to be, because there was no parenting book or what to expect book that could have guided me. It all had to be done by the heart.

Thankfully the Lord guides us and gives us strength more than we can ever expect possible. Its so true that you stand stronger in your weakest moments, because for once in our hard-headed lives it isn't our strength that we are standing on. It is those moments when all of our strength comes from the Lord that we are at our strongest and can truly move mountains. I don't know why God chose me a Jason to be two of his warriors that had to be completely taken out at the knees...more than once....to stand, but He did and if nothing more, we are proof that it is possible to make it...I don't say make it "through" because we will never be "through" this chapter of our lives, this is a piece to our puzzle that will forever be there and we will always have to rely on the Lord for the strength to remember that this is not the end and there is a greater purpose to this all.

Until next time....and yes even though this tore my heart out to put down in words tonight...I promise I won't wait 4 months to write again...but come on it took me 4 years to get this far, so you got to bear with me...thank you all for taking the time out of your own crazy lives to share in our lives. Many of you were there these days, and I know you felt these pains with us...wish there was a word that meant more than just thank you. We love you all.