Echo May 24

We had an echo done today because Michaela hasn't been eating as well. She likes keeping us on our toes here :). Thank God though we got a good report back. No details quite yet, but that the overall report was better. Now if it could all be downhill from here that would be nice!

May 14th

As most of you know tomorrow is Michaela's benefit at Myrtle Grove Presbyterian. I'm excited to see the impact she has made! I look forward to being able to give to the Children's Heart Foundation!

Michaela has been doing well. She is definitely keeping us on our toes, giving us a scare here an there. Her next echo cardiogram isn't until June 30th. I'm not sure how I will make it that long, but until then continue prayers. Thanks!

Happy Mother's Day

This year, nearly 100,000 women will' become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes.

"Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia. Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter?"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect.

She has just enough selfishness."

The angel gasps, "Selfishness?

God nods. "If she can't separate herself from the child occasionally, she’ll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a ‘spoken’ word. She will never consider a 'step' ordinary. When her child says 'Mama' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life."

"And what about her patron saint?" asks the angel.

God smiles. "A mirror will suffice."

Michaela Mae's Story

Michaela Mae was born December 18^th, 2010. She was seemingly perfect. Michaela was an extremely happy baby, thriving, and her weight gain was in the 75^th percentile. Although from the first day in the hospital I noticed she was panting, but the doctors assured me that it was normal.

In spite of her gaining weight well and being a perfectly happy baby I wasn't content with the thought her breathing was normal. So within a week of having her home I took her back to the doctors. They listened to her heart and lungs and told me she sounded great. They said she had a strong heart and that she was perfect, but she had a little congestion. That was the first trip of what would be many to the doctors. I took Michaela time and time again, and as time progressed she had more and more symptoms. Michaela began comfort nursing constantly as her way of feeding, and she forced air out through grunting. She also began vomiting, and making a pain scream to the point she would lose her breath. I was told she was congested, she had reflux, and then she had the common cold. The week after being told she had the common cold she began wheezing and having the worst labored breathing I had seen yet. So March 16^th we were back at the doctor's again. I was tired of being told she just needed a humidifier. I had been hearing that for 3 months by this point, and I wanted to hear something different. Michaela tested positive for RSV that day, and received two breathing treatments there. They sent me home with inhalers and told me to come back the next day, but we didn't even make it through to the night before I took her to the Emergency Room.

At the ER Michaela was wheezing so bad they quickly decided to admit her. They did an x-ray, drew blood, and administered breathing treatments every two hours. On the x-ray the doctors saw Michaela's heart was enlarged, but they weren't sure what was going on and told me not to worry yet. They ordered an ultrasound of her heart and sent the results to Chapel Hill. At this point I knew something was very wrong, because Chapel Hill was a serious deal. We were moved from the general pediatric ward to the Intensive care, where we later were told that Michaela would be airlifted to Chapel Hill and would need extensive medicinal care, heart surgery or a heart transplant. I looked at my daughter who had been so close to perfect, and it was like she was another baby. She was on oxygen, she was screaming, her heart rate 200 to 210, gray colored, and had something so very wrong with her heart. I held my baby for what would be the last time for 17 days. They cleared a bed at Chapel hill and shortly later she was airlifted.

My husband and I followed suite. The three hour drive was torture. It was the longest I had ever been without my sweet baby, and looking back in her empty car seat seemed to make time stand still. On our way there we received a call that she had made it there and was in stable condition. We arrived shortly after that call with higher hopes that this would be an easier fix than surgery. We were greeted by a pediatric cardiologist who took us into the family room and told us that our precious daughter was critically ill, and was barely hanging on. The doctor again told us she would need possible surgery or a transplant, and he didn't know if she would make it, but that a heart defect called ALCAPA would be our best hope.

We went in the back to see Michaela, dressed in our yellow gowns, mask, and gloves. She had IV's everywhere, a breathing tube down her throat, and was heavily sedated. After only a couple of minutes of being in her room she started to crash right before our eyes. My husband and I ran out of the room and begged God to save our daughter. After what seemed like hours, but was maybe minutes, the doctors came out and told us they had stabilized her. They told us they had to paralyze and completely sedate her through the night in hopes of her successfully making it through a hearth catheterization, and possible surgery the next day.

Our family's came up to support us that night, and the next day Michaela had her heart catheterization. It was confirmed she had ALCAPA (anomalous left coronary from the pulmonary artery). She went straight from the heart cath to the operating room. They allowed us to see her in the OR before surgery, she was strapped to a table, with her arms stretched out and completely sedated. We filled the room with love and prayers and headed back to the waiting room. After over 6 grueling hours a nurse came out and said “Are you Michaela's mother?”. I replied “yes”, and she told me she didn't know details, but Michaela was alive. The doctors came out a little later and told us she was a fighter. Michaela had struggled through the surgery to stay alive because of how sick her heart was. The surgery was a success though, and that was what mattered. Her heart beat on its own after being stopped for the surgery, and blood was flowing through her re implanted coronary.

Michaela spent the next 31 days in the PICU (pediatric intensive care unit), and 7 days in the Cardiac Care Unit. I spent everyone of the 38 days and nights with her, and watched her struggles and triumphs. I had the joy of holding my baby after 17 days. There was good days and bad. Her left lung kept collapsing, she threw up her breathing tube, and had a hard time coming off of the drugs.

In the PICU I learned that when Michaela came in her heart was so swollen it was touching both sides of her chest wall. ALCAPA is a congenital heart defect where the left coronary originates from the pulmonary artery, instead of the aorta. Your aorta gives you blood to the left side of the heart that has been oxygenated by your lungs, but she was getting blood from her pulmonary artery which is low in oxygen. The left side of your heart gives blood to the body, which explained the weariness during feedings or activity. Her heart from the time of birth had been deprived of the oxygen she needed, and so the left side of her heart began to die. She has Mitral Valve insufficiency and because of the heart wall death her heart does not pump well. The doctors say it will take years for her to have a close to normal heart. As she grows her heart will get larger, and the dead wall of her heart will become smaller, hopefully to where she can lead a normal life.

Michaela is at home recovering now, doing what she does so well, and that is pretending like she's in perfect health. You can't tell her she's sick! Michaela's condition is 1 in 300,00, and she is beating the odds of a 90 percent mortality rate. She is literally 1 in millions. Michaela's scars are her only outward story of her sickness, because she would have you believing she was the healthiest thing alive. Her pictures before and after surgery tell stories of the fighter that she is. Her heart was and is still very sick, and yet she still smiles more than any human I know. Anyone who comes into contact with her knows she is a blessed baby who is destined for greatness.

Congenital defects are the number one killer of infants under the age of 1. 1 in 100 may seem like a small number, and to many people it is until it is their child.

Michaela Mae

Michaela Mae was born December 18th, 2010.  She was diagnosed with ALCAPA (anomalous left coronary from the pulmonary artery) on March 18th, 2011, and she had open heart surgery on that same day.  I am her Mommy Ashley. Her Daddy is John, Sister Jaydalee, and Brother Jacob.  This is the story of her and our family. 
Michaela stayed in the UNC Chapel Hill Children's Hospital for 38 days.  30 of those days were spent in the PICU, and 8 in the CICC.  I spent every night and day in the hospital by her bedside.  I spent countless hours trying to find other stories to find hope in.  Michaela's condition is 1 in 300,000.  Unfortunately for me this meant it was hard to find the information I wanted, and even harder to find someone with the same story to reach out to.  This is for the mother in the hospital looking for the story of hope against all odds.  I will serve as an advocate for my child, and every CHD angel before and after my daughter.  I will be an advocate for research and a voice of hope here.
This is in honor of My Daughter and every CHD child ever born or unborn.

Please bear with me while I try to daily update my blog to where I want it to be, and the purpose I want to serve. Thank you!