Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Thursday, February 21, 2013

Day 21: Meet Jack Ryan and Andrew

Day 20, brings us the stories of Jack Ryan and Andrew...two awesome little dudes born with fight!!!


In April 2007, after nearly two years of marriage, my husband and I found out we were expecting our first child! We were so ecstatic!! I remember jumping around the house screaming with excitement! We had a completely normal pregnancy until my AFP bloodwork came back abnormal. So we scheduled a level 3 ultrasound with a perenatologist for the next day.

The appointment could not come quick enough. Anxiously we waited, prayed, and counted the hours until we would find out if there was something going on with our precious baby. The day of our ultrasound my husband and I had a great deal of mixed emotions. We were so excited to get a glimpse of our precious baby growing in my belly; we were scared to death that there was something wrong; we were excited to find out the sex of our baby. The ultrasound was long and involved. After about an hour of the ultrasound tech and perinatalogist collecting images of our baby, the perinatologist explained that it appeared that our baby had Hypoplastic Left Heart Syndrome and he would be sending us to a cardiologist to confirm the diagnosis. My mind was spinning; I wanted to know what this was, what was the survival rate, what did our future hold. At the end of the appointment, the tech handed us photos of our little miracle, and enlightened us: "It's a boy."

A son. I had dreamed of this moment since I was a little girl, my baby. I knew at that moment the fight of our life was beginning.

A week later, when I was 21 weeks pregnant, we went for our fetal echo and to meet with the pediatric cardiologist. The diagnosis was confirmed. She went through all the grim details, statistics, what we were facing. At that moment I handed it all to God. It was out of my control. There was nothing I could do but pray, beg, plead, and have faith. I would have to defend my decision not to terminate to many doctors and specialists throughout the pregnancy. It was a long, drawn out pregnancy from that point on. There were many ups and downs thoughout the pregnancy. Feelings of excitement of becoming a parent, fears of the unknown, and anxiety of being in the hospital mixed with questions about what my baby would have to go through.

I went into labor on my own on December 3rd and Jack Ryan made his grand entrance at 7:09 am on December 4th. He was perfect in every way, externally. He came into the world lively, screaming, pink, with an apgar score of 10!! That gave me all the hope I needed. I got to hold him for about 2 minutes before they whisked him away to begin getting him hooked up to things and running all the tests under the sun. Looking into my precious son's eyes for the first time is something I will never forget. It was a perfect moment for both my husband and I. We both cried as we looked at how perfect he was. 

The next weeks were a blur of emotions, sleepless nights, exhaustion, tears, laughs, smiles, great nurses, good doctors, meetings with surgeons, anesthesiologists, and endless prayers from family and friends. Jack Ryan underwent his first open heart surgery when he was 6 days old. All went as planned. Nothing can prepare you for seeing your child laying in an infant warmer intubated with his chest open. I will never forget seeing him laying there, so helpless, and seeing his little heart beating. I wept for him, for the pain he was having to endure. I wept for myself, for my husband. How could we be traveling this road?

After surgery, Jack began a long, tireless journey of healing. Jack developed chylothorax, had a partial collapse of a lung and his vocal cords were nicked during surgery. On Christmas day, the nurse let us hold him even though he was still intubated. It was the best Christmas gift ever! It was an amazing day when he was finally extubated. It took three times before it was a success. I was thrilled to finally be able to hold my baby whenever I wanted!! When we were finally able to transfer out of the NICU into the other recovery wing we were thrilled!

Finally on January 17, 2008, we got to take our little guy home! It was an amazing exciting, scary day to bring him home. We were home for a day and a half when in the middle of the night Jack Ryan started having trouble breathing. I called 911 and they transferred him to the nearest hospital. His pulse ox was very low. The transport team for UCSF came and picked him up and transferred him back. My heart broke. We were readmitted and they did not know why he had the episode that he did. They ran all sorts of tests, echos, and bloodwork. No problems appeared so they sent us back home the next day.

On January 21, 2008, Jack Ryan passed away at home unexpectedly. The Lord took him home. Our hearts broke, his struggle was over, he was no longer in pain. I know one day I will see him again. Though his journey here on Earth was only 47 days, my life was changed forever. He touched more people's lives in those 47 days than some people touch in a lifetime. I would not ever change what we endured. I have never once regretted getting to meet my son, hold him, love him, and give him a chance at life.

We have since been blessed with two amazing healthy little girls, Sierra Faith who is 3 1/2 years and Madelyn Jane who is 2 years old. Their pregnancies were each a journey of faith. What an amazing blessing all three of our children have been to our lives.


The summer of 2009 was an exciting time on our lives. Our first child was going off to college. A former church was to be his home away from home, the renovations began! A new job for Mom and the telltale sign, can I have a cracker for breakfast? Sure enough, surprise baby #5 on the way! We had talked about another so Daniel wouldn’t be an only..12 years between he and Katie would leave a quite house, we had wanted more space than 2 years, but the man upstairs had other plans…birth control forggetaboutit!

8 weeks into the pregnancy almost a miscarriage, we rushed to the hospital and saw the heartbeat. Hubby said take it easy, as if to say I brought it on, but I had this feeling..maybe mama intuition? I went to church that weekend and fell to my knees, Lord, please, please, please let this baby be ok. We will deal with whatever you give us. I felt so silly praying for a girl at this point, just let things be ok.

At our 20 week ultrasound a bright spot on the heart was found. 2 of our children and me already with mild heart defects, I knew. The technician kept saying no it’s a marker for Down’s syndrome. I kept telling her something was wrong with the heart. I cried all the way home from the appointment, not knowing how I made the hour plus ride.

At out 24 week fetal echo, which is routine in my pregnancies our now beloved Jean asked, “And how many weeks are you?” She didn’t have to say another word, to me it was confirmed. The question was what? Not in my wildest dreams would I ever think I would hear hypoplastic left heart. And God bless Jean, she couldn’t tell us what, she is not allowed, however she gave us some specific questions to ask. We were whisked upstairs to the obstetrician’s office and told you have less than a week if you want an abortion. Say what? Not in this lifetime, not ever, not an option! From there we went to the pediatric cardiologist office. We lived off the grid and wondered how could we care for a special baby with unreliable power, what kind of meds do these kids need, how do we provide insurance with hubby laid off from work, can we stop this train if he is not doing well?

Down to Boston we go with Google in hand and a whole lot of wrong information. We are not sure if we are going to say yes to 3 heart surgeries. Is it fair to the baby, what kind of life will he have, are we being selfish and wanting him here for us? We met with the surgical team while pregnant, something they normally do not do, is assign a surgeon beforehand. We meet our miracle maker Dr. Emani and he goes from start to finish explaining what we needed to know. A feeling of peace, when he understood what I asked, if he is not doing well can we let go? A sense of relief from Dr. Emani, he knew we understood, had a glimmer of what was required and what was to come. Yes, and he explained how we could say no and when. Unlike the ethics committee an Brigham and Women’s who made me feel like a monster, he understood, our interest was only for Andrew and how difficult these questions were to even utter.

With hubby out of work and about to lose his unemployment benefits, he gets a call for an interview, what are we going to do? I am delivering in a month, how can I do this by myself? A late season blizzard and the interview is postponed and postponed. We were discharged a month after Andrew’s surgery on a Thursday and Hubby went back to work Tuesday. Our home is to be an in progress church. I have asked and God has provided. Three surgeries later, our road has been one of a spectrum of emotions from soulful sobbing and fears to love and joy. It is a journey as there is no end, and as crazy as it sounds one I am grateful to be on.

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