Wednesday, February 3, 2016

For 28 Days of Hearts...CHD awareness month

It is better to be beautiful on the inside than it is on the outside. That was the theme of a fable my 11 year old chose to write for a recent school assignment. Oh, how I love her heart. Her beautiful, gorgeous heart.

Lianna is known by many to be wise beyond her age. She is my sensitive one. Her heart feels things strongly and she speaks from it. She always has. When Lianna was born in China in 2004, we were told she was very, very sick. She entered the orphanage being the size of a kitten. She had fresh IV marks indicating that her biological family loved her very much and sought treatment for their ailing daughter. Health care in the rural village area of China where she was born is rough. It is unclear if a congenital heart defect would even have been detected. Clearly she was sick and unable to keep fluid down. She was not growing. She was teeny tiny. And she could hardly open her beautiful brown eyes.

By the time we met her, she was 14 months old and had defied the odds of remaining alive as an orphan with an untreated Congenital Heart Condition (CHD). Specifically, a ventricular septal defect (VSD), patent foramen ovale (PFO), and aortic spectum (something her US doctors have yet to determine the meaning of). She was incredibly weak. She was unable to sit up by herself. Her head was sweaty. She gazed deeply at my first daughter and I as we played in the same baby room my eldest daughter had spent the first 9 months of her life in. One of the nannies plopped her into my lap and my daughter stroked her head. We were told she was waiting for surgery. We were told that they hoped she would have that surgery soon. I had no idea that the very first orphanage volunteer experience would introduce me to the orphan who would become my second daughter.


Two months after my eldest daughter and I spent a day loving on the orphans in her former orphanage, we learned that the baby with the big brown eyes, the baby who sat in my lap and seemed to beg me not to move her, the baby with the CHD who was frail and weak and sick, had had a successful heart surgery. She would be placed for adoption. Would I want to pursue adopting her? The paperwork race began and I took the leap of faith. The net appeared, just as the wise adoption coordinator said it would. She would come home shortly after turning 2, almost a year to the day when I first met her.

Before adopting my beautiful girl, heart disease had always scared me. Maybe, it's because my own heart was broken. Not in the literal sense, but because I failed to see the beauty of living in the here and now. I had clung to the future, and wanted those future plans to come true. I wanted guarantees of a long life. I had always thought I wanted close to "perfection", erroneously thinking that it would ensure the guarantee. I wanted something that is not guaranteed to any of us, whether born with congenital heart disease or not. The doctors at Boston Children's Hospital have said that Lianna's heart surgery was done exceptionally well. "It was as if it was done here", I was told. Currently she is monitored for a mitral valve regurgitation, which has been stable for several years. Heart disease is not as scary anymore. We are living our lives and she continues to teach me lessons I need to learn.

My heart girl reminds me to live in the present while looking with the heart, because her heart is that beautiful. She looks with her gorgeous heart each and every day. She finds the beauty in all people, young and old, strong or weak, special need or not, homeless or homeowner. She seems to see that true beauty that is found in all imperfect people. A true beauty that is only found on the inside. And she radiates that same beauty for all the world to see. How lucky am I to be her mother.








Monday, January 18, 2016

Anchor of Hope

Waiting.

Waiting is so hard. Overall, I tend to be a pretty patient person. However, there are times when that myth of myself is shattered. The adoption of each of my daughters entailed so much wait. It.was.agonizing. And now, I seem to be in a period of waiting again. There is so much waiting. Waiting for lab results. Waiting for team thoughts on those results. Waiting for congestion to clear enough so biopsy can happen.

Then, there will be waiting for biopsy results. Waiting for treatment plan. Waiting for immunosuppresion to lessen so we can "re-enter living". Waiting for the dark times and struggle to end. Waiting for the exhaustion to fade. Waiting for..... Waiting for night. Waiting for morning. Always, always waiting. And I realize, I am falling into the trap. Falling deep into the trap of believing that somehow meaningful life exists on the other side of the waiting. It's the trap that prevents me from living fully in the moment. It prevents me from living fully in the waiting. Because waiting is HARD. And waiting in hard times is even harder. It requires discipline. It requires letting go of the worry and desire to control the outcomes. It requires trust in God that the plan for my life is unfolding as it is meant to be. It requires faith that regardless of the biopsy results He will give mercies. It requires the realization that I am missing out on the mercies of the moment if I am constantly consumed by what is to come.

Hope's liver labs are the lowest they have been in the past 5 weeks. The plan for her has changed several times over the past week. Her team will see what tomorrow's labs show, and plan again accordingly. Parenting Hope is teaching me to be patient while simultaneously remove my focus from the next thing to come. She is teaching me to live in the constant waiting. She is teaching me to focus and just live. She teaching me there are too many uncertainties to place plans, hopes, or dreams on tomorrow. Those uncertainties can unravel me. So instead, she is teaching me that in the here and now is an anchor. The anchor of God will hold me steady if I let Him. He will hold me in the right now of today. I can choose. I can choose to become caught up in the possibilities of tomorrow, or I can choose to see the now in this very moment.

I have so much to learn. So, so, much. Life is whirling by so quickly. If I don't stop and breathe in the moment, I will miss it. I will miss the smallness of the hands which clutch onto mine. I will miss the gentle curves of their faces. I will miss the questions. I will miss the laughter. I will miss the tears. I will miss that they want my attention now. I will miss seeing how light comes from darkness. I will miss the mercies. I will miss being a part of the now that my girls are part of. I will miss it all. And I will miss the anchor which is oh so patient with me as I learn and holds me steady through it all.


Friday, January 8, 2016

Hope and the beast

The.Beast.
That is what rejection was referred to yesterday by a friend of mine as we chatted about life, and I shared my fears about the cause of Hope's recent rising liver values.
The beast.

Last night I learned that Hope's team is also sharing the same concerns about her rising liver values. As soon as I heard our NP's voice, her concern and disappointment was palpable. The values were high. Again. A biopsy of her liver will be scheduled. Because rejection is serious. Serious enough that when her numbers came back high on Tuesday they wanted her back for labs again on Thursday. Serious enough that our NP said they hope to have the biopsy scheduled later today for next Tuesday.

Hope's little body is doing what it has been designed to do. It recognizes something as foreign, and begins a fight against it. Now there is a battle being waged. She has had three different medications to help prevent the rejection beast. She takes her tacrolimus/prograf twice daily without fail. She loves this medication, and loses absolutely none. This week, her labs showed her tacrolimus level was high. Her liver numbers should be lower. Not rising. And so, the process was explained to me by our NP. Biopsy to confirm rejection. Admit to the hospital for high dose IV steroids to hopefully stop the rejection. Discharge home with oral steroids. All while continuing the twice a day tacrolimus. Her immune system will be depleted. Again. We will be under strict precautions for isolation. Again. And to top it all off there was a study published yesterday in the Journal of the American Medical Association discussing the increased incidence of cancer deaths among patients (especially pediatric patients) with solid organ transplants, likely impacted due to immune suppression.

Needless to say, this news was not what I wanted to hear. As I drove home from transfusion day with Hope snuggled happily in her car seat and her two older sisters now looking pink sitting behind her, I wanted to get away. I wanted to sit with my daughters on a warm beach, feeling the soft sand and listening to their giggles as they splashed around in water. Without a care in the world. THAT is where I wanted to be. Not prepping for yet another anesthesia procedure and inpatient stay. Not preparing for the horrible personality changes, albeit temporary, that occurs with a child on steroids. I wanted my happy place. This was just too hard to face the reality that my baby girl is going through. She has already been through the unimaginable in her short 21 months of life. Rejection impacts about 20% of all liver transplant recipients. Of that 20%, there are 5% for whom the IV steroids will not work. The BEAST.

And this morning I woke up with the weight of all of this. And, as I drank my morning tea and did some reading I realized I completely forgot. I just forgot. I forgot about the mercies.

My morning devotional reading was about the story of Moses. Moses is obedient to God's plan, and goes to Egypt to deliver the Israelites. When things get harder instead of easier, Moses begins to question God. The line "If I just follow God's plan, everything should go smoothly, right", struck me. In no way was this ever promised. Being obedient to God and following His plan does not bring easy. That was never part of the deal. As I continued to read, I was reminded to draw close to God in confidence, so I could find MERCY and favor. There it was. My reminder. To look for the mercies.

I forgot. But I was reminded by a good, good God.

We may be facing the beast, but our God is with us. And He will send mercies. Like our amazing, amazing medical team. The team who clearly love my girl. This was so evident in the NP's voice as she delivered the news of the probable rejection. We have a team who will be with us and they will use their knowledge to do the best they can for Hope. We have the nurses on 10 South. Oh, those nurses. We have experienced some of our hardest days under their care, and they are gifts. The thought of seeing some of our favorites again makes the news of rejection easier to take. We will have the clinical assistants, like T, who always manages to bring a smile to Hope's face. Perhaps it is because he accidentally got some of her ascites fluid in his mouth. Yep, in his mouth, as he was emptying her drain. He never even reacted in other than a laugh. T is a gem. We will get to see him again. Our community is already rallying. Encouragement has been pouring in. And one of the biggest mercies of all is that the probable rejection beast was caught early and my baby girl is alive to fight the beast. She is ALIVE. I now have online friends in the liver world who would likely do anything to have their children still living, even if it means fighting rejection. Hope is here. And we will face this.

Wednesday, January 6, 2016

Walking toward Hope

Eight months ago I would be boarding that plane to bring Hope home. I am not sure the english dictionary has the correct vocabulary word to express the fear I had. I had absolutely no doubt that getting on that plane was what I was meant to do. And I would do it, no matter how panicked I was. But the words in my head would have arguments with each other. Literally. "What are you doing" would be met with "doing exactly what you are supposed to do". Back and forth. Over and over. I think it was the unknowns and self doubt that caused the most fear. Which led to more conversations in my mind "sure you are meant to do it, but can you handle it?" "you know, this is going to be ridiculously hard", and "what happens if....". Again, over and over. I suppose in many ways the fear could be easily paralyzing. The fear could create a roadblock to doing what I knew I was being called to do. Some may even have said that walking away could be justified. Maybe it would just be "too hard".

So I did it afraid. That night eight months ago, as we headed to the airport, we were given a ride by a dear friend of mine who made me laugh. She is naturally just a fun person. Easy to talk to. And she could tell the best stories. As I listened to her and we caught up, I laughed and laughed. For moments at a time, I would forget how afraid I was. Talk about a mercy. Such.a.mercy. By the time we got into the airport and through security to our gate those feelings of fear crept up again in full force. This was it. There would be no looking back. We were going to China, where we would receive Hope. I think it was there, at that gate, that I realized that there would also be no looking forward. No looking back and no looking forward. Only looking at the hear and now. Only looking at the present. And for moments, peace began to ensue. Just as it did during that car ride to the airport when I was fully present and living in the moment.

Hope truly lives in the moment. She has a zest for life that is just palpable. She is such a happy baby. So content. Despite all that she has been through and endured, she loves living. She is my hero. Hope reminds me every day to try to bask in the moment and allow it to remain untainted by the "what ifs" of tomorrow.

Six weeks ago she lay in an OR receiving her gift of life. Today, she lives. Today, I live. Today, we live.


Choose Hope.





Wednesday, December 23, 2015

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.

Friday, December 18, 2015

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.


Saturday, November 28, 2015

Thanksgiving

Sovereign God
A risk to take
All things made new
Beauty from the ashes
Beauty in brokenness
A life that matters
No longer an orphan
A baby now known
A daughter dearly loved
The samaritan offer
A selfless donor and family
A hero liver
Always, always hope
It was not "too late"
Toxins gone
Whites of eyes
Pruritus a distant memory
Healing
Miracles in the midst
Company on the crazy coaster
A community who rallies
Exceptional care
Meticulous in every detail
Liver families
Tender touch
Outpouring of love
Offers of help
Friendly smiles
Understanding of pain
Whispers of prayer
A new day dawning
Precious moments in time
Feelings of peace
The ability to choose
A source of Hope
Rejoicing in life
Eucharisteo