Anyway, its been a hard few months of unpacking and settling in. Last week I was able to slow down and have a few sweet days at home with just my littles while my big boys were at school. Slow and wonderful days, where I got to really cherish Karis and Abram. Cuddling them, making lunches for them and sitting down to enjoy them together. Playing on the floor with blocks and baby dolls. Just such a sweet, sweet time together. Its strange really having older and younger kids. Some in school, while the others are still tiny, needy, and at home. Like living and balancing two different worlds at once. Sometimes because of that, its hard to enjoy either world. The school events become tricky when you have a baby and a toddler to juggle. Nap time becomes a struggle because of school pick up and drop off. Homework is hard to do when a toddler is yelling and throwing Hotwheels at you, and a baby is crying in her highchair. I feel so stressed a lot of the time trying to balance these two worlds. Its nice when we can have good days where both worlds seem right.
Since these sweet days at home last week, I have been thinking a lot about my sweetest moments with Koralyn. Much like balancing my 4 kids at home, trying to have normal, sweet moments in the NICU is tricky. Not impossible, but very tricky. There is limited privacy in the NICU, even though we were at one of the newest, and best, with private rooms, which is still pretty rare for the NICU environment. Doctors, nurses, therapists, phlebotomists, are in and out of your room all day every day. Not to mention the wires and tubes connected to your baby. After living the NICU life you will no longer take for granted a baby you can so easily lift out of a crib with nothing attached to slow you down. Oh how precious that privilege is to cuddle a baby when you want, for as long as you want. I often ached to hold Koralyn, to comfort her in my arms. One of the hardest moments was when she was hooked to the ventilator, which kept her breathing when she couldn't do it on her own. Usually right after surgery or when one of her medical crises would hit. She would cry, yet no sound would come out. All the other signs of crying were there. The troubled expressions, the tears rolling down her cheeks, the open mouth where the sound should be, the flailing of a baby upset and protesting, and yet no sound. One of the hardest and strangest things to witness. The lack of sound to go along with her cries, seemed to make all the other signs of distress more evident, more gut wrenching and hard. That together with the fact that I wasn't able to just scoop her up and comfort her was so very hard to take. Your baby's wails are even a gift, who knew right?
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| Koralyn, a week or so after her first open heart surgery, still connected to the vent. |
Peppered in with the countless hard memories, are a few incredibly sweet ones that I hold so near to my heart. These are the memories I wish to relive, the ones I replay in my mind by choice. The ones I recall when we go visit Cook Children's. Her room was in the corner of the cardiac section of the NICU. The cardiac section was appropriately called sweetheart street. Her room we had graciously been moved to was room A11. It was bigger then our two previous rooms and had a wonderful view right out to the front entrance of the hospital. Tall windows to look out onto the comings and goings of a world that we felt disconnected from. Our rooms before our beloved A11 didn't have windows to the outside world, they were also a lot smaller and right up next to the nurses station. Room A11 was so much quieter and more peaceful, add in the big windows to look down on the entrance and the grassy area with swings and it felt like our own little NICU apartment. I would often stand at the windows and take in what was happening outside. I saw several kids get loaded on buses to attend some week long camp Cook Children's was sponsoring for them. Watched as a NICU reunion unfolded, complete with bounce houses and yummy treats. Saw many patients wheeled out in wagons, their moms and dads happily loading balloons, flowers, and bags of dirty laundry, finally getting to go home with their child. I would often imagine our day of discharge and how glorious it would be! What a happy moment, finally being able to strap Koralyn into her carseat, wave goodbye to all her wonderful nurses and doctors, and drive her home to really start living. Of course that day never came for us. The memory of leaving without her, is one I often recall, even though I would rather not. All this to say that room A11 was a gift to me and now when I return for an appointment my kids always ask to play on the lawn right outside those windows. There are swings there, big blue porch swings, and I can sit and look up to the windows of her room. I wonder who has lived in that room since her time there. I will often pray for those families. My heart aches and longs to be transported back up into that room. To stand at those windows once more, holding my sweet girl watching as the world goes by outside, what I wouldn't give for one more day.
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| Our corner room. Daddy holding Koralyn, with Uncle Evan looking on, and the windows behind him. |
The sweetest memory for me came on a rainy day in May. It was pouring outside and Koralyn and I were safe and dry inside her room. It was a quiet day, she was stable, not much needed to be done. i can't recall if it was the weekend Amos was attending his brother's wedding or just a weekday. I say that because weekends were always quiet in the sense that most of the doctors and therapists were off, the hustle and bustle happened mostly during the week, unless there was a crisis of course. Anyway, I had Koralyn and the room all to myself and it all felt so normal. I sat and cuddled her in the big purple rocking chair. We both fell asleep huddled under her blankets, (falling asleep in the chair with your nicu baby is a no no and the nurses are supposed to wake you up) I have a feeling my sweet nurse let it slide just for that one sweet day. I remembering dozing off and waking up to Koralyn fast asleep in my arms, mostly unattached from wires and tubes except for her regular 24/7 monitoring system, which kept track of her sats, heart rate, blood pressure, etc. The nurses could see it at all times up at their station and we had our own screen above her bed. It would alarm with different beeps when something was either too high or too low. I hear the saturation alarm to this day. Bong, bong, bong. We always struggled so with her sats.
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| The view from room A11. Sometimes the boys would sit on those swings and wave up at us. |
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| My couch where I sat and slept, and another great image of the windows. Windows for sunshine and connection to the outside are so important during a long hospital stay. |
Waking up to Koralyn asleep in my arms, realizing I had relaxed enough to have a sweet nap with my girl was so nice. I sat there and took it all in, the heavy rain pounding outside, my baby girl asleep in my arms, our cozy little room, just me and her. Time stopped that day, all seemed so normal and right. It was such a gift. I sat with her for what seemed like hours. The day went on, I got up to eat but went back to the chair for more sweet cuddles later on in the afternoon. This simple day will always be one of my very best parenting days of all. Just such a gift. Rainy days at home have always been a favorite of mine and everything that day just seemed so right and perfect even though we were still in the hospital, still connected to wires, still wanting and waiting to go home. In the midst of that we got to experience a glimpse of perfect. I remember sitting in that chair with her and telling her this is what it would be like at home. We would have more days like this, perfect, cuddly, rainy days at home. I remember laughing and telling her they may not be as quiet with her two stinky brothers there but they would be just as glorious!
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| The last time I was able to hold Koralyn in our purple chair in room A11. This was the morning of her surgery. We got to linger here for longer then expected. Another gift to me. |
Remembering and recalling this sweet day with Koralyn, helps me be a better mom to my four babes still living on this earth. It reminds me that even when there is chaos, and chores, and work to do, sometimes God gifts us an opportunity to slow down, breathe and take it all in. I have such a hard time doing this, I always have a To-Do list that is never ending. I am always trying to stay one step ahead of the laundry, or the homework or some other important mothering task. Every Once in awhile though, like last week I decide its time to slow down and enjoy the gift of my children. The gift of getting to spend my days with them. The gift of sitting on the floor playing blocks and babies and singing songs. Oh if I could only remember more that its all such a gift. The world is broken and chaotic and so are we, but in the midst of it all we can still find rest and Hope. I am ever so thankful for the gift of that rainy day with my sweet Koralyn. That day refilled my cup and gave me hope for the future with my daughter. It turns out that it isn't the future I envisioned when I sat in that chair with her and talked of more rainy days to come. Many have since come and gone since that May in 2012. These subsequent rainy days don't wash away the memory of what will always be one of the sweetest of my life. If anything, the drops and downpours, and the rainbows that come after, will forever be touched and tinted by that one precious day. Once the shock and great grief fade, we are left with sweet memories that help sustain us, and continue to grow us and teach us. I wonder will there be rainy days in heaven?
