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Our blogging days are over, but we hope you will follow our family’s journey with David on Facebook. Sunshine Sacran – David Ewing. He has a community page for those who are interested. We appreciate all of your support and love.

 

LeBonheur Heart Reunion

Last weekend Lily, David, my mom, Morgan (affectionately called MoMo), and I loaded up and headed to Memphis for the weekend. Our first stop was Didi and Uncle Steve’s house. Uncle Steve is a great cook, and we had a yummy meal of grilled fish, vegetables, and risotto waiting on us. We always have fun at DiDi’s house. Lily had the camera, so excuse the little finger in the way.

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DiDi lives 2 blocks from LeBonheur, so during those first weeks of David’s life we spent alot of time here. Many memories came flooding back – panic attacks, sleepless nights, exhaustion like I’ve never experienced before, tears (tears and more tears), bowls of strawberries and yogurt waiting on me because Uncle Steve and DiDi knew that those were some of the few foods I could keep down, the fear on the morning of David’s Hirschpreung’s surgery…

Here we were 10 months later to attend the second annual LeBonheur Heart Reunion. A lot of those memories brought tears to my eyes, but the faithfulness and mercy of God moved me to tears also. I was there with my two children and with some of the individuals who stood beside me through those difficult times. There was David snoozing on DiDi’s chest, swinging in his little portable swing, happy and content and making us smile with his smile – that smile that lights his entire face. Lily was busy playing in the warm sunshine, and serving Uncle Steve breakfast, and cleaning the cat box, (because that is the “neatest” chore in her book). She is a big sister because of God’s mercy in answering so many of our prayers.

The heart reunion was a lot of fun. It’s kind of strange how easily you can strike up a conversation with a complete stranger. We all have a common bond – our babies were alive and well because God has given man the ability to repair tiny hearts. There were miracles everywhere you looked.

There was face painting and cookie decorating

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and crafts

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I love this picture of Lily and David.

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Dr. Knott-Craig arrived about half way through the reunion and you would have thought a celebrity entered the room, well, I guess to us he is a celebrity. Mamas holding their heart warriors swarmed him. If these pictures don’t melt you heart…

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yeah, I was crying happy, thankful tears! If I’ve said it once I’ve said it hundred times. I will say it until the day I die, “I will be forever grateful for Dr. Christopher Knott-Craig.”

Our Heart Story

This is a story you’ve heard, a story I’ve told many times…

The month of February is heart month, a month where we celebrate the ones we love. This year during the month of February, (and really every day) I celebrate my heart baby. February 7-14 is Congenital Heart Defect Week, and this week has special significance for me.

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Louis and I prayed for a baby for a year and half before our prayers were answered. We prayed the prayer that every parent prays…”Lord, bless the baby to be healthy, bless the delivery to go well.” Looking back I was guilty of praying nonchalantly. I was 31 years old, healthy, perfect sonograms, uneventful pregnancy, of course, I would have a healthy baby. David was born on May 4, and I instantly fell in love with our Sunshine. I was allowed to hold David for a few minutes before a nurse, who was unhappy with his lack of crying, took him to be examined more closely. I kept asking, “Is he okay? Why can’t I hold him?” His oxygen was never higher than 92%, but once they were comfortable enough with his breathing patterns they let me have my baby boy. I counted fingers and toes, and they wheeled us to a recovery room. Since David’s oxygen was low the Nursery nurses recommended he stay a few hours in the nursery for observation. A nurse brought David to me three hours later for his first feeding. She was a kind nurse who sat on my bed and told me that David was turning blue around his mouth when he cried. She assured me he was receiving great care and that the pediatrician had been called.  I couldn’t get him to eat or wake up, and I had a faint, uneasy feeling that something wasn’t right. I loved on David, sang to him, kissed and snuggled him. Those first moments are some of the sweetest – the ones you always remember.

Early the next morning a pediatrician came to my room, took my hand and told me she suspected congenital heart disease. Tears, panic, anxiety! What did that mean for David? A specialist from LeBonheur was called, and a few hours later Dr. Lee came to give us our official diagnosis – atrioventricular canal defect (AV Canal). This defect left David with only 2 chambers in his heart instead of the usual 4. God was merciful when he sent Dr. Lee. He is a gentle, kind man. An understanding man with 2 small children, a man who was so patient to answer all my question, so reassuring that David’s heart could be repaired. He held a diagram in his hand explaining the anatomy of the heart, the defect, the nature of the repair. I heard very little of the explanation, because I could think of nothing besides open heart surgery for my little boy.

There were no NICU beds available at Germantown Methodist, so David and Louis, along with the flight team, made the trip to LeBonheur Children’s Hospital. I begged to be released early, so 12 hours after delivery I was on my way to join Louis and David. I called to check in and Louis told me, “This place is amazing, and we have the best nurse. You will love her.” He was right! Nurse Sarah was the best!

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Sarah sat down with me shortly after my arrival and began to explain all the wires, tubes and medications. She handed me a stack of papers about AV Canal Defect and there on the front page – this heart defect was most common in Down Syndrome children. I walked over to David’s bed, looked at my sweet boy, and thought, “Yeah, I can see it in his eyes.”

In the days and weeks that followed we had several echoes on David’s heart.  His oxygen never went above 95% and his heart rate was always too fast. Once David was discharged my soul mission was to keep him healthy and gaining weight until he weighed 10 pounds. Ten pounds and 3 months old was our goal. On August 12, we were admitted for heart surgery. David weighed 10 pounds, 11 ounces and was 3 months old.

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Dr. Christopher Knott-Craig repaired David’s heart on August 13.

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This week I celebrate love. I celebrate my family. I celebrate David’s life. I celebrate his heart. I celebrate 6 months since surgery. I sing praises to God for all the people who stood with us, held our hands, whispered prayers for our sweet Sunshine. I thank God for modern day medicine and the individuals who took such excellent care of David. I pray for other heart warriors.

This heart warrior has forever changed my life! I celebrate him!

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A Series of Pictures

Here is a series of photos I took Sunday morning. It was a comical experience to get Lily to look at the camera and to keep David from falling. The pictures turned out to be mine and Louis’ new favorites.

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Baby suspenders – I LOVE THEM!

Down Syndrome and the Sanctity of Life

Sanctity of Life – in religion and ethics the belief is a principle of implied protection regarding all life which is said to be sacred, holy, or of such value not to be violated. (dictionary.com)

Sanctity of Life Sunday took place this week. I’m pro-life, but I rarely think about the 1.3 million children who are aborted in a years time. Since David’s birth the statistics of abortion are more sobering. The abortion rate of Down syndrome children is shockingly high – 93% of women who receive a DS diagnosis choose to end their pregnancy. Women who choose to abort a DS child argue that it is unfair to be asked to raise a disabled child, or that is in unfair to ask a child to live a limited life.

I wish they knew! I wish they knew how incredibly beautiful all life is, and that a Down syndrome diagnosis is some of the best news you will ever receive.  Yes, you read that right. When we received David’s diagnosis I cried. I grieved for the child I had imagined for 9 months. When people would tell me of how my world would expand, how I would see the world with new eyes, how our family would experience love, and joy and blessings – I would think of how nice it was of them to tell me that, but I didn’t really believe it. I understand now, and I know they were right. Down syndrome has been an unexpected part of our lives, but I can honestly tell you that David’s life is beautiful and valued. He is perfect. He is strong. He is happy. His eyes sparkle (literally). He gives the best snuggles, kisses, and his smile lights his entire face – I LOVE it when this boy smiles. Lily has not been given a “bad” sibling, and Louis and I have not been given a “bad” son. We don’t look at David and see Down syndrome, we see our little boy – a little boy who captured our hearts from the first second of his life and who continues to bring happiness, joy, and blessings to our entire family. In his short 8 months of life God has used David to teach me many lessons, and I’m amazed of the stories I hear of how God has used David in the lives of others.

ALL LIFE IS A GIFT.

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ALL LIFE IS PRECIOUS!

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ALL LIFE IS BEAUTIFUL!

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ALL LIFE IS SACRED!

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Progress Report

David turned 8 months old on January 4. Happy, happy boy…

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We began our new year with doctor’s appointments. There is always a dread as these appointments draw closer and a sense of relief when they are over. David saw his pediatrician, and received a good report. He weighs 18 pounds, and on the Down syndrome growth chart he is 75% in his weight (no surprise there) and 25-50% in his height. His oxygen, heart rate, and blood pressure were perfect! He had his scheduled CBC and thyroid test. Both came back normal, and I was very thankful. I have said many prayers concerning both test. Children with DS have a slightly elevated risk for childhood leukemia. This fact scares me – I think about it every day. I am more fearful than I should be, and I have to constantly remind myself of God’s faithfulness to us in the past year. Both of these test will be repeated in 6 months, then once a year until he is 5. David also had a follow up appointment with Dr. Feliz (the surgeon who performed his Hirschpreungs pull through). All looked well. I felt like this poor little guy had a tough week – a finger prick that left the nurse squeezing his finger for a very long time, blood drawn from his arm, and a very painful rectal exam that left him screaming and left me thinking I was going to pass out. He will have his eyes and hearing checked in a few weeks. If you think about it please pray for his hearing test. His last test was a few months ago. One ear was perfect, but the other ear was full of fluid and non-responsive. The doctor felt like it was from the fluid, but his ears will have to be checked again.

We are pursuing a variety of nutritional supplements and foods to help support David’s growth and development. I have joined a support group who treat their children needs through both medical interventions, supplements and clean (organic) diets.  I have also found a group of families who implement the same type of therapy program. I am excited to be a part of these groups and to learn from their experience.

We are still doing therapy with David every day. We are seeing some progress, but it is slow. Some days leave me weary and near tears because I want to see more progress, but other days I am content with the progress I do see. We are still working on sitting. The average range for a child with DS to begin sitting on their own is anywhere from 7 – 15 months. David can tripod sit for longer periods of a time, and he has graduated to an exer-saucer and bumbo seat. He is rolling all around on the floor. I will find him under chairs or off the rug on the concrete floors. He is holding a bottle on his own. It’s a small bottle, but it’s progress!

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He is “talking” more. He is saying “mamama” – of course this thrills me.

And Lily…

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Well, she is busy being a great big sister and mama’s big helper. She really is alot of help around the house (she folded a basket of laundry this morning all by herself – woohoo!) About a month ago she was playing with her doll, and I heard her say, “It’s time for your therapy.” Tears instantly stung my eyes, and in my sinfulness I thought that no little girl should be familiar with that type of language. My world, Lily’s world, our everyday vocabulary is different from what I ever imagined, and I remind myself that this is not a bad thing. I pray every day that God will teach us needed lessons, bless us to grow into better individuals.

Both of these kiddos bring me so much joy!

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