Love in Abundance

The year 2015 is certainly going to go down as miraculous. Truly.Miraculous. As I reflect back to all that has happened in the past year, my jaw just drops. Never, in a million gazillion years, would I EVER have predicted that I would be where I am right now.

I now have 5 daughters. FIVE. Five amazing blessings from the place on the planet where my heart stays. Five girls, from age 14 to age 1. With Hope, I knew I was taking a huge leap of faith. Over and over the words "too late" were muttered. She was not expected to survive. We were asked to disembark the plane (three times) before take off for home because she looked that sick and the flight crew panicked her possible death would be on their hands. We did not budge. I would not budge. The PACT team at Dana Farber/Children's Hospital had prepared me for that moment. I had a letter planned. My baby girl would not leave my arms. And with odds stacked against her, she not only survived, she began to thrive. Her saggy skin began to develop some flesh under it. She began to understand that she would never be alone in her suffering again. She started playing. She was listed for transplant and received her hero liver four months later. She is now expected to live a full life. I think back to all of this, and hear the words "too late" spoken by both Chinese and American doctors. I understand those words, because they were logical words. Hope defied all logic and human understanding. Her whole story is so extraordinarily miraculous. That is the only explanation.

As if the miracle of Hope's life and story were not enough, the miracles continue. It has now been eight months since I have been able to work. There has been no income since the first week of May. I cannot collect unemployment and do not receive SSI. And yet, ALL of our bills have been paid. Every.single.month. Somehow, the perfect amount is given to provide. Since May, meals and groceries have come in. Delicious meals, many home cooked. Mountains of food came in throughout the transplant hospital stay. The parking of my car at the hospital during inpatient stays has been paid for. Upon hearing that Hope and I were in the emergency room waiting to be admitted last Saturday, a dear friend quickly dropped everything to surprise us and be present. We had wonderful visitors during hospitalizations, making the time seem to fly by. The words "what do you need" are frequently spoken. Care packages came in. New tires for my car were paid for. Clothing has come in. School supplies for the girls came in. A new chromebook was given for schoolwork. A new phone was given to me by a dear friend so that there would be no unreliability, and a new laptop was given for future work in China. A dear friend donated her time and services to take the most exquisite family photos. My condo was cleaned again and again. A room mother for one of the girls has paid for all of the extras needed in her classroom. She has taken my girl under her wing and took video of my daughter when I could not be at the school for a performance. Rides were provided. Extras at the girls' after school program were provided for, so that they could partake in the gingerbread decorating. Our after school program became elves and delivered box after box of Christmas gifts for the girls, so that I could "relax and just enjoy". Gas cards and grocery store gift cards were donated. Dear friends excitedly shopped for stocking stuffers, apparently thinking we all have mega stockings. Our church family created a DVD recording of the church service to "bring church to us" in this time of isolation due to Hope's immunosuppression. Our pediatrician has supported and personally called to check in with me when we were hospitalized (this, in addition to calling the team to get the most accurate medical update). The pediatrician's office was giddy with excitement to see my baby girl after transplant. Two of my most cherished people continue to drop everything to be present for me and my girls whenever needed, always with smiling eyes and hearts. The rally cry of "choose HOPE" has become a reality as people choose to find the ultimate hope in all circumstances. Our people near and far expressed their love and care for us through prayer, texts, emails, messages, and calls. Those messages of love are *treasured* and helped us to get through some of the hard days. The thoughtfulness and kindness is just astounding. It.IS.Miraculous.

One of the biggest lessons I have been reminded of is the gift of people. The people in our lives and the time we have with them is the best gift in life. The best. I have known that, but now really know. This has been the theme of the past year. My family was given the gift of an incredibly sick baby girl who helped show us just how precious that time with people is. She has helped me to live in the moment rather than to live in the future. We learned who our true community is, and just how loved we are. I could never fully express the sincere gratitude I have in my heart for my community, my village. My village who provides us with love in abundance.

Home with Hope

Twenty three days ago my sweet baby Hope received her miracle gift of a hero liver from a deceased donor. I do not know anything about the donor or family, other than Hope received a part of the liver. To say that we have been receiving the most exceptional care would be an understatement. Two days after surgery, her surgeon took her back to the operating room to open a vein in the liver with a clot in it. Praise God this was found early so it could be corrected and she could move on to healing. She spent 5 days in the ICU unit where we had the best nurses ever. EVER. Then, we were moved to the transplant floor where other children recovering from liver or kidney transplants stay. Again, the nursing care was superb. God has clearly put incredible people into our path to help us through this time. What is truly amazing is the fact that Boston Children's Hospital's liver transplant program is top in the country and it is right in our backyard. There were families on the floor who have traveled from around the world to come here. A family recently moved up from Florida. Another is from Mexico. Another is from Dubai. It has confirmed that despite 6 of us living in a 2 bedroom condo, this is where we need to be and stay so we can continue to receive wonderful medical care. Someone in my liver families group has said that post-transplant care is so critical, maybe even more so than the initial surgery. Her son is 15 years out from his liver transplant, and I believe she is right. Hope has already had three appointments at Children's in the past week since we were discharged. Two of these were to measure labs. The other appointment included labs and to meet with the team for our weekly 9:00am clinic visit. Our team is on top of things and is in constant communication. Every time she has labs, someone calls me later that day to explain what they show. While we were in the hospital, our surgeon came to the ICU to watch the ultrasound being done. He did not rely on the report, but rather wanted to see it with his own eyes. Another time, our liver doctor told us she was awake in the middle of the night, logging on to monitor Hope's vitals since her temperature was slightly elevated. That is the quality of care we are receiving. So exceptional.

Hope has already shown amazing responsiveness to her new liver. On the day of surgery, her bilirubin/jaundice was at 15.8. Literally overnight, she went down to 3.6. She is now at .3. This means her liver is working perfectly. She now will sleep all night, with just occasional crying for quick reassurance. The days of feeding her at night every 30 min-2 hours are behind us. Her body can now absorb and use the nutrition that she gets. She has begun to eat solid foods and taking sips from a cup. She is gaining weight and is up to 17 lbs.

Hope has come home with a feeding tube, abdominal drain and with 9 different medications. Right now, two of these medications are to fight rejection of her new liver. She is on an antiviral. A blood pressure medication. A blood thinner. A stomach protector. An anti fungal. An antibiotic to prevent pneumonia. And a 1/4 teaspoon of baking soda (ewww, for her electrolytes). Over the course of the next year she will be weaned from many of these medications. She will be on the anti rejection medication for the rest of her life. She takes them all by mouth, despite the fact that some of them make her gag. The nurses all said they are amazed at how well she does taking medications at her age. The feeding tube is necessary since she isn't interested in drinking enough right now. The abdominal drain is helping to get rid of the fluid which collects sometimes after liver transplant surgery. Hopefully this will be removed in the next few weeks. Hope's incision is healing nicely and the stitches will dissolve.

The outpouring of love and support during this time I something for which I am so deeply grateful. People around the world have been holding us in prayer. Dear friends moved into my condo to take care of the 4 older girls. Never once have these friends complained or even seemed tired. Home cooked meals were made every single night for my older girls and friends staying with them every single night. People gave rides and playdates. Food, baby supplies, and groceries have been delivered. I have received visits, messages, texts, and emails to express love and care while Hope was hospitalized. Christmas gifts and stockings for the girls have been covered. The thoughtfulness is just such a gift to us. I will never be able to properly express my gratitude.

The doctors have said for the next 6-8 weeks it will be important to remain isolated. After surgery, Hope was started on anti rejection medications to help her body fully accept her new liver. However, this means she is extremely susceptible to even the most minor illness. Any fever over 100.4 brings automatic hospitalization. Over time, the effects of these medications will decrease and her immune system will become stronger. Until then, we will be following the recommendations of avoiding all public places and limiting all visitors.

God knew what He was doing, leading us to baby Hope. Her team of doctors and nurses are meticulous in their care. They explain everything to me, answer my questions, and truly love Hope. Even the ultrasound tech here knew she had been listed for transplant and was hoping for the miracle. It is humbling that I was chosen to be the mother of such a precious baby. We have crossed the huge hurdle of waiting for transplant. She has defied all of the odds and lived. Her hero liver came in time. We now are creating our post transplant normal, cherishing each moment. I am soaking it up and am grateful for all of it.