When the sun rises.

I'm a firm believer in finding the bright side in every situation, or at least trying to. I don't think I'm alone when I say that there are times when we just get caught on the dark side for a moment or two before our eyes can focus on the light in the horizon. 

The day Congenital heart defects (CHDs) came into my life was a beautiful, fruitful day until it made its presence known. That moment was as if I were hit from behind, knocked out cold, and placed in a world without light. 

CHD robs from so much from us. 

It took all the first moments I had hoped for. The first bath. Kangaroo time. Diaper changes. Even my first glance at my newborn. 

Our story in a nutshell:

I had an ideal pregnancy with lots of "morning" sickness. Not sure why they call it morning sickness. All day sickness suits better in my opinion. I had my birth plan written down. I wanted everything to be as natural as possible. 

The 20 week ultrasound was all it was hyped up to be. You know, 10 toes, 10 fingers, oh and we're having a boy. Oh how naive we were. Around 30 weeks, we had one more ultrasound. This is where the dream crushing began. (Hold on just a little while longer on the dark side... the sun will rise soon!) Our little boy, Aiden, was frank breech. This meant he was head up and folded at the waist. His teeny toes were beside his head. It can be dangerous to try to turn a frank breech baby and they aren't likely to turn on their own. This was when my Dr told me that I would more than likely have a cesarean. 

Fast forward a few weeks, my water breaks. But I didn't know that. I think it happened early Tuesday morning. Remember when I said I was naive? I wasn't kidding. At exactly 34 weeks and 6 days, on a Thursday, my coworkers convinced me to see my Dr. An ultrasound and a few other exams later, she tells me that my fluid is indeed super low and that she can't deliver because he's 5 weeks early. She makes a call to a high risk doc at their sister hospital and then were on our way. 

There was lots of hustle and bustle. The main concern was if his lungs would be developed or not. At 35 weeks, the lungs finish their development. We were prepared (or as prepared as any expectant parent could suddenly be) for either a good lung or bad lung scenario. 

Friday afternoon, a little past 2 a blue baby was born. He didn't cry. He didn't get to feel his mom's touch. He didn't get to hear me say "I love you". He was whisked away and I was put out due to some minor complications. 

The rest is a blur but here is what I remember. 

I woke up in recovery. No baby. Sleep. I woke up again, in a room this time. No baby. Friends and family. No husband. 

I woke up again. No one but my husband present. He was sobbing while trying to tell me something in between the streaming tears. "He is sick. I don't know what to do. He's sick." He kept repeating this again and again. He wept a desperate prayer begging for our baby to be ok. 

The neonatal doc on that night wasn't optimistic. He couldn't help him anymore and so he was requesting a transfer to a hospital designed to help sick babies. He diagnosed Aiden (we named him Aiden by the way) with Persistent Pulmonary Hypertension of the Newborn... "but don't google that" he said. (We googled it the next day. Worst idea ever.) I had yet to see him and now I'm being told he may not even make it through the night. 

I asked to see my baby before he left. He was wheeled in the room with two transport nurses. He was strapped in a portable incubator with a breathing tube taped to his face, an IV in his head, an umbilical deep line, ear muffs, ekg wires, o2 sensor, and a tangle of wires. I asked if I could touch him for the first time. I feared it would be the only time. As the nurse opened the window for me to slip in my hand, she let me know that it must be gently and brief as he was super sensitive to every aspect of his surroundings. 

This is our first family photo. 

I hate it actually. I love it too. I've never shared this photo with anyone who wasn't present when it was taken. It's so raw and exposes so much. Every time I look at it, which isn't often, I feel like I'm right back in that moment. Terrified and experiencing symptoms of utter disbelief.

3 days later, it was recognized that Aiden had been misdiagnosed. Once his series of heart defects were detected, treatment was adjusted and he began a whole new journey. I remember the first moment we sat with the cardiologist. You might be surprised that we were actually semi-relieved to learn about his heart defects. There was more hope in this diagnosis that the previous one. 

They say hindsight is always 20/20. It's true in our case. The blessings revealed to us as we looked back on our journey were overwhelming. 

This is when the sun rises. 

Had Aiden been head down, he might had not survived delivery. Had he come on time, he might not have survived waiting for transport. He would have been born an hour away from the hospital he needed. 

This is our first family photo. 

It most certainly isn't ideal. 

I'm blessed because too many families don't get the chance to take a photo like this.  

I'm blessed because my warrior is alive. 

I'm blessed to be apart of a community that accepted me when I didn't want in. 

I'm blessed to know some of this worlds most courageous families.

There are countless blessings the sun has revealed throughout our journey. Some were obvious in the dark times, others required a search and rescue team. CHD robbed so much from us. I wouldn't change that. I know I'm not alone when I say this. Don't get me wrong, I wish Aiden didn't have to experience the things he did. There really aren't words to justifying why we wouldn't change it if we could. It's allowed experiences and blessings that have come to define parts of us. It's allowed my miracle child to be a living witness. There's something tenderly beautiful about being broken. 

One final thing. 

You may see us heart families go crazy about CHD awareness. It's not because we want to scare you. It's because we want to prepare you. Don't be blinded like I was. Don't be terrified that you will be the one (CHD occurs 1 in every 100 births making it the number 1 birth defect). Just be aware. Early detection allows for preparation which allows for a better chance of gaining a better outcome. I wasn't aware that a new human being could be born with such a thing like Heart defects until the moment our little one was diagnosed. Don't be like me. Just know.

Tara Gilliam is on the board of directors for Kerrington's Heart Inc. She is one of the founding members of our Kentucky based heart mom community. She is mom to Aiden and Aria.  

Milestones

“How old were you when you took your first steps?,” he asked me.

Pausing, I said, “I don't know.”

“Exactly,” he said, “The fact is that you learned to walk. No one cares how old you were.”

 As the mother of a child with developmental delays, this conversation with my pastor has popped in my head through every bump in the road and with every achieved milestone. Theodore Roosevelt said, “Comparison is the thief of joy,” and it has been stealing the joy of parents for years. We fight it, but eventually, it finds each one of us. It can show up in the child at library story hour who is half your child's age, double his size, and running circles around him. Hypothetically speaking, of course.

 My first child hit every milestone on time and sometimes early. People were always commenting on how advance her speech was for her age and how smart she was (is). My son hit none of his milestones and took months to master things my daughter just did naturally. With many hours, weeks, and months of hard work, children who have delays will eventually achieve the same goals their peers likely achieved much sooner, but the celebration is much sweeter. If you are the parent of a child who some might describe as “behind,” hang in there. Keep working with her and know she isn't “behind” anyone because she isn't competing with anyone, but herself. Children arrive in their own time and they can't be rushed.

 Benchmarks definitely have their place, but when they become the measuring stick for a child's (or parent's) “success,” they lose their value. Success is defined as: the correct or desired result of an attempt. Do you notice something missing from that definition? “...by a certain time or age.” WE put these specific parameters on our children and redefine “success.” I can list the many successes The added pressure from well-meaning grandparents, other parents, and especially from ourselves is unnecessary and, in many ways, can be unhealthy. I should probably clarify that, as a parent, you should be aware of a typical development timeline so you know when your child may need therapies to help them get on track. Just as it isn't good to be overly comparitive, it is equally bad to be in denial of possible challenges.

 I am so grateful for the doctors and therapists who gently clued me in to my son's need for therapy. I confess that I was so overwhelmed with all he already had going on that I was oblivious. He had his first heart surgery at 13 days old and just seemed to have uphill battles from the beginning. At four months old, he was diagnosed with hip dysplasia and began aggressive treatment that involved a harness and later a brace that was to be worn for an unknown period of time (ended up being 15 months). So, when he wasn't rolling over by 6 months old, I blamed the brace. I told myself, “Of course he can't roll over; his hips are restricted 12—24 hours a day!” It turned out that he also has low muscle tone which meant rolling was going to be a challenge, with or without a hip brace. So, he began weekly physical therapy sessions. His physical therapist noticed that he only used his right hand...so, he began occupational therapy. Some months later, that same physical therapist (who became like family) mentioned my son's speech and how he might benefit from therapy in that area.

 For 2+ years, he received a combined total of 10 hours of therapies a month. My life revolved around his therapy schedule and there were times when I just didn't think I could do it any more. Now, as I see my son run, climb, turn door knobs, and speak in full sentences, it was all worth it. He attends preschool 4 half-days a week where he receives weekly therapies in all areas and he still gets speech at home. He loves school and everyone there loves him! He can tell you all of his teachers' names, and is quick to tell you who is best friend is, too. He even went peepee in the potty for the first time EVER at school. Oh, and the way his big sister has grown into a “mini therapist” has been amazing to watch. She used to put his favorite toy on top of our ottoman to “make him work for it.” Next to me, she is his biggest advocate and cheerleader and he, of course, thinks she hung the moon.

 I wish I could tell the mom of that non-walking 2-year old to enjoy him no matter what stage of development he is in. Don't dwell on the delays or setbacks, but focus on the successes. Now, that we are potty training, I told a friend, “He peed in the potty 7 times Saturday!” I am choosing not to keep track of all of the accidents because focusing on the negative never helped anyone and certainly never ended in SUCCESS.

 Ashley Martin has been a full-time stay-at-home mom and part-time blogger since 2007. She is active in her community and in her church where she leads Women's Bible Study and helps lead worship. She proudly calls herself a Heart Mom and is an advocate for families who have a child born with a Congenital Heart Defect (CHD). Ashley resides in Nicholasville, Kentucky, with her husband and two children.