Seasons of Hope

There is a time for everything, and a season for every activity under the heavens (Ecclesiastes 3:1)...

The past 15 weeks and 3 days of my newest season has been some of the joyous and hardest times I have ever endured. Baby Hope is the most amazing, precious, unexpected gift I have ever had the privilege to receive. Life with her in our family is sweeter, fuller, and so much more blessed. She is adored by all of us, and loves us right back. Watching her face as she sees her sisters wake up or enter the room is priceless. Hearing her squeals of delight and seeing her eyes light up makes my heart swell so much I feel it could burst. I have the five most amazing children on the planet, and there is nothing I love more.

Baby Hope's medical condition requires her to eat a special formula every 2 hours. Around.the.clock. It will stay like this until transplant which could be days or months away. Her stomach is pushed up by the enormity of her huge liver and spleen. She can't take more than a few ounces at a time, and even with just a few ounces she experiences painful reflux that medications do nothing for. It is chronic sleep deprivation, harder than that required of residents studying medicine who are not expected to go months and months with no longer than a two hour block of sleep EVERY SINGLE NIGHT. I am not complaining at all in saying this, but the grueling nature has to be acknowledged. There are days when it seems I can no longer form a coherent sentence and all I can do is laugh at how I sound. There are so many things I hope to accomplish in a day and I am lucky if I can get to a few of them. It is physically, emotionally, and spiritually exhausting. Yet I would do it for years on end for baby Hope. She is so worth it.

Life as I knew it just 15 weeks and 4 days ago has drastically changed. That season of my life is over and a new one is here. Changes, even changes for good, take adjustment. I have survived the betrayal of false friends and rediscovered the love, sincerity, and loyalty of true friendships. My former routine is gone, and I tend to find comfort in routine and predictability. A new routine is gradually being built and along with it a new sense of myself. The stability and security I had back then is gone, and in it's place is a trust that our future is in His hands. The level of trust I am asked to give goes way beyond the half trust my self-reliant self is accustomed to giving. It is hard, but I will try to do it anyways. Through it all, I continue to be reminded to live in the moment, and cherish what I have.

The reminder to cherish what I have in the present became a little more relevant today as I learned our beloved pastor has plans to retire and move out of state. To say that this will be a huge loss for our church community and my family is an understatement. He and his wife are pillars of faith and true hands and feet of God. They have embraced and loved my non-traditional single parent lifestyle and all of my children. They have taught, listened, prayed, encouraged, guided, supported, laughed, and cried with us. For years, they have helped to navigate the messiness of life. I shudder to think of their presence being distant for purely selfish reasons. Yet, the next well deserved season of their lives will be dawning, and we will tearfully cheer them onto a phase of life where they can rest and enjoy God's goodness. Today's news is another indication to embrace the present and those in it, because life will change. It always does. Even when we wish for a trial to end. Or even when we wish the moments would stop in time.

UNOS listed

My little one is now officially on the UNOS list for a new liver. Seventy two days prior to the call for listing, she was laying in a crib waiting to die. Her bilirubin was double of what it is now. Her kidneys were not doing well. She was getting IV albumin to help her kidneys. She had a drain in her abdomen to remove fluid. There are times when I stop and think about it that it is completely unfathomable that she is still alive.

Sweet Hope is still very, very sick. It is easy to forget that as she smiles her adorable smiles or places her tiny hands across her eyes to play peek a boo. Her MRI showed a "massive" spleen which takes up more than 2/3 of her entire little torso. The bottoms of both lungs are collapsed either from spending 11 of the last 13 months laying in a crib or from her enormous organs pushing up against them. Her kidneys looked abnormal. She is anemic. Her liver is cirrhotic. There is still a little fluid in her abdomen. And yet, my sweet baby girl fights and smiles. She is gaining weight, and not just in her abdomen. She is getting stronger. She is learning. She is playful. And now we wait for another miracle for her.

When the NP called to let me know she was officially on the UNOS list, it was a mixture of emotions. I am beyond grateful for the chance she is getting. BEYOND grateful. It gives her a chance at a life. Yet, to get that chance, it means that someone is going to experience pain unimaginable. My baby girl's gain will be someone else's loss, and I wouldn't wish the pain of that loss on anybody.

Hope is listed for a whole liver or a part of a liver. That means that she could receive a baby or child sized liver, or part of an adult liver. Thinking about it, well, it's hard. I don't know how to pray for it. And I certainly will not ever be able to properly thank those who chose to give my baby girl a miracle in the midst of their own pain.

Our team at Boston Children's Hospital has told me the wait is very unpredictable. I could get a call tonight, or it could be a few months from now. We will have labs drawn regularly to see if her place on the list moves up to a higher priority. Right now, we are moderate priority with a PELD (pediatric end stage liver disease) score of 18. Her doctors all feel that if she has a few more months of relative stability to get stronger, it will be better for the 10 hour surgery and recovery. I trust that He who has gotten her this far, will provide the perfect timing. And in the meantime, we try to live life to the fullest.