Wow, what a journey. One that we never asked to be on or could have ever foreseen, but here we go for better or worse. Thank you to everyone for all the love and support. Here goes at least another mini-novel.
Since we last posted Mason made huge strides with his health and going home became a more real possibility with each day. He slowly began to get his suck/swallow better and with each day we watched the tubes and wires that masked our sweet baby disappear one by one. Suddenly going home wasn't a such a far fetched dream ever moving in and then out of our grasp.
They gave us Friday June 15th as our going home date and then tried to move it to saturday. But, daddy wasn't having that and talked/forced the nurse practictioner into letting him come home for the whole weekend. "Our boy is coming home." Even as I write this that single sentence still moves me to tears. It unfortunately is not the end our journey that to this point has been filled with more sorrow than joy. However, it is like the end of Act One of a long play and we have moved on to a later portion where the plot is further developed and we start to better understand where the story is going.
That understanding of where some of our journey is going to go is both liberating and scary. I was in such a hurry to leave with Mason from Primary Children's that it didn't fully hit Michelle or I until we were driving from the parking lot what that place had meant to us. There are wonderful people that helped shepherd and guide us through some of our darkest days that we may never see again. Despite all of the bad news that we had to endure I only felt one thing as I was driving home with my baby packed in the car....gratitude. That place is full of some of the most beautiful and caring people and we are blessed to have it in our community. I don't know many things as my feelings and thoughts swing wildly over subjects each and every day since Mason's birth. But, I do know this. I will never again pass up the opportunity at the Walmart checkout (lol) to donate a dollar to Primary Children's. Without them, my little boy may not face the bright future that awaits him otherwise.
I felt incredibly at peace our entire drive home until we pulled into our neighborhood and then every emotion and burden I had shouldered for the past 3 weeks hit at once. Tears.....sad and happy came in a storm at the thought of all we had endured through and the opportunity to bring our little boy.....HOME. I couldn't have asked for anything better on my first Father's day.
Our first night at home was a trying one to say the least. We thought (or else I thought) we were totally ready to have our little one come home and join our family. No more agonizing at the thought of leaving our little boy each and every night to only feel our anxiety, worry, and sadness build with each passing mile we put between our car and the hospital. The first night home Mason didn't eat well and what he did eat took several minutes and much coaxing. I flashbacked to trying to force feed him at Ogden Regional and I felt panic rise inside my chest. His colostomy bag came unsealed and began to leak. It took three of us and 45 minutes to get a new one on him. Can we really do this? The home health company came by to drop off Mason's oxygen and then rolled in a 60 pound tank along with 50 feet of tubing so we could manuever throughout our house. Along with that Mason has a pulse-oximeter (measuring heart rate and oxygen saturation in his blood) that alarms anytime his levels drop to an unsafe reading. We felt bound up and restricted by all the wires and tubing....again. Anytime he wiggled or squirmed the alarm would misread and go off. Weren't we ready to start writing our happy chapter where things would starting getting better??
I am happy and relieved to report though that after a rough start things began to start improving. Something seemed to click with Mason and daddy found a way he liked to be held during feedings and poof.....he became an eating machine. He went from struggling over 40ml for 45 minutes to today ploughing through 75 ml in under 20 minutes. We have slowly begun weaning his oxygen and he is already on half of what he came home on.
We saw the pediatrician today for our first check up and Mason got a gold star. He has already put on a 1/2 pound in the short time he has been home and he has grown 2 inches from his birth and is now 21 inches. Wow, people talk to you about how your kids grow up so fast and how they change every day. I am now a true believer. I look back at his newborn pictures and he has already changed so much. Each and every day we marvel at the new little things he does. I can literally look into his alert little eyes and see his brain learning and making connections to things he interacts with.
Our little boy also continues to amaze. We were told children with downs struggle for several weeks especially after surgery and this may slow his ability to come home for a long period. He came home less than a week after hearing this. We were told that these children are very floppy and can't move against gravity. He has been nicknamed "Squirm Worm" and his legs and arms are always moving and can Houdini out of the tightest swaddling. We were told his neck would have no strength at this time. He can lift it and turn his head side to side during tummy time. You have to walk a fine line between optimism and realism, but everything in my soul tells me this little boy is going to blow our minds throughout his life.
As for Michelle and I, life is slowly getting better. Our life is never going to be how we envisioned, but joy and happiness are creeping back into our existance daily. My tears are mostly dried up unless I reflect too long on the first 72 hours of his life or allow the doubt and worry to overcome me during times of deep reflection. Mason is the glue to our life right now. Just as he has since he was born.....he makes us happy. He makes me feel whole. He washes away much of my sadness and ache and helps me stay grounded in the moment.
During our time in life you learn several lessons and things are revealed to you about what is truly important. Many of these things or "silver linings" as I call them have come about during Mason's illness. Three things have really stuck out to me during this time.
Number one: It really is all about family. You may have disagreements with them or life paths may pull you all in different directions. But, when the chips were down every single member of our families came to our rescue. Michelle and I don't know how we would have made it though all we have. The nurses joked that Mason was easily the most loved visited baby in the NICU.
Number two: We've learned how much we are truly loved by our family and friends. Even during times when we didn't want to return a single call or text, everyone continued to support us. We've had help mowing our lawn, weeding, bringing us dinner, care packages, and never ending love and support.
Number three: The world is full of many loving, caring, beautiful human beings. Never underestimate any little deed that you do to help someone. Some of the smallest shows of support were incredibly meaningful to us during this time.
