There was a sense of isolation that I just couldn't shake. Joel felt it too. It wasn't for lack of calls and messages. Nor the lack of prayer or even food. Our family, church, friends, coworkers were amazing. We felt such love and support in the beginning and though it trickled after the weeks went on, we knew we were well prayed for and thought of often.
The neonatologists, nurses, therapists, actually everyone at Community Medical Center's NICU department were incredible. They made us feel welcomed and at home. They listened to our concerns and shared theirs as well. We felt like family (still do!) and loved completely. That wasn't the kind of isolation we felt either.
It's almost impossible to explain. It wasn't that we felt slighted or forgotten by God either. We knew He was with us and everything that happened in the days leading up to Anchor's birth and even the weeks after were all according to His plans. We were and are living the life He designed for us and honestly, we've never felt closer to Our Savior than we have since then. We truthfully never asked why... but what's next. We felt and still feel the overwhelming grace by God in all circumstances.
I didn't know then what it was we were feeling isolated from until a couple months ago. The strong sense of empty came from not being in community with other families that were currently or have went through a long term NICU stay because of a premature baby. I know there are many... MANY babies born early and need a few days in the care of these special doctors and nurses. Walking out of the hospital without your baby is one of the worst things imaginable and too many of you have had to do that for some reason or another. But walking through the hospital doors 252 times without your baby in your arms is heartbreaking. You just want to talk with someone who feels the same thing. Someone who truly knows what that emptiness feels like. How buckling up in your car and seeing a vacant back seat brings you to tears, sometimes uncontrollable, nearly every time. How waiting for the doctor to come in and give you your babies daily report would make you weak in the knees.
To be very honest, in my previous healthy births of our three daughters, I never gave one thought of the NICU. I never really knew what it meant even when other friends had their babies in the NICU for weeks. I never understood what that looked like... what that felt like. I didn't give it a second thought and for those friends who experienced this; and for that I am absolutely sorrow filled and sorry. I was not a good friend. I didn't understand.
The NICU was our second home for 84 days this summer. From May 4th until July 26th, we spent most of our days there, in Anchor's room, learning his care and holding him every chance we got; waiting for his daily schedule of tests and therapies, getting through one hour at a time and gradually being able to breathe easier as the days went on. Being exhausted but full of hope.... and lonely.
The way our NICU is set up is genius. There are private rooms for each baby and also rooms for sets of twins and triplets, so you have privacy to talk with your doctors and nurses, hold your baby, cry, laugh, pray, read, sing and cry some more. I loved that when I had to pump every 2 hours, I could do that comfortably. I loved that when we had family visit, we could have a quiet conversation. I loved that we could have our little family in there together before Avin would get too rambunctious and not share that space or time with anyone else.
But, the one downside to having private rooms, is that the only rare moments to meet other families with babies in the NICU, was walking through the hallway (we were in the first room so we barely saw other babies or families) or when we were waiting in line to wash our hands and arms upon entering the NICU. We needed a tribe. We needed people to talk with about everything.
Fortunately, we had a precious nurse who sat and cried with us and shared her journey with us as she was once in the same shoes as us. Until that moment, we didn't know anyone who would understand our feelings. Tiffany, you are an angel. Thank you.
We knew we needed to reach out and share our story. We knew we had to let others in our room... in our hearts. We met the sweetest couple who had the tiniest little girl who had lungs of a champ down the hall. We met the sincerest newlywed couple who had a little warrior that was proving God's amazing work. We said goodbye for now and congrats to two little girls who had grown big and strong and headed home with their families after several weeks of living the NICU life. Before we were discharged in July, we met an adorable couple with twin girls who were fighting like crazy and showing God's grace every hour.
The conversations we had with these families helped shape what is about to come. We need each other. We need to know that we are not alone and so does every family that has an extended stay, waiting for their precious child's daily report. We need to show them we care and most of all because we were there.
That's where Anchored Hope came from. Joel and I have spent several nights praying and planning what this looks like. We don't know exactly how it will work but we know it's what we need to do.
But first things first. If you are a NICU family in the Missoula area or spent many days in the the NICU in Missoula, we have created a facebook parent support group today. Please search 'Missoula NICU Parents' and add yourself. If you know of anyone who fits this group, please share this info. We need each other. We need to share our ups and downs, praise and prayer requests, during and beyond the NICU. We need this community. We need each other who understand each other.
But there is still more to come.....
To be continued......
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