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happy heart day

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E post3

*Thank you to a special friend for the inspiration for the title of this post. It seemed too perfect.

Continued from six months of living and i’ve never liked dominoes…

Two days home from discharge, and we knew something was really wrong. Everett cried nonstop. He was pale. He was sweating through his clothes and mine. And, his breathing was increasingly faster. These were all symptoms of his heart failure. And, he had maxed out his medications. We knew at this point, he wouldn’t be making it to our goal of four months without the surgery.

We moved his appointment up with the cardiologist from Friday to Tuesday. They did an echo, and things had changed. To everyone’s surprise, his heart was deteriorating faster than previously estimated. He needed surgery soon.

Everett was sent immediately to the  Cardiac ICU, where he was started on strong IV medicines. The plan was for him to stabilize for surgery the following week. The week was filled with new monitors, new medications and uncertainty. The Saturday before surgery, he spiked an unexplained fever, and we were no longer sure if he would be able to move forward with the surgery. If he still ran a fever on Sunday, we would have to discuss our options. But, God provided a miracle, and by Saturday night, he was already fever free. It left as quickly as it came on.

We didn’t sleep the night before surgery. We both stayed at the hospital, and I stayed in the room with Everett. Early morning came, and the nursing staff prepped him for surgery. As the sun awakened outside his room, sun rays and peace filled that little room, and I knew God would be with this child today. And, then, it was time.

It’s an odd experience handing your child over for open heart surgery, feelings of shock, disbelief and terror. As soon as they rolled him away, I broke down. I heaved and sobbed an ugly, ugly cry. Philip and I just held one another, praying for our sweet baby boy. The surgery lasted several hours. Family and friends surrounded us that day, praying for our sweet Everett and keeping our minds from wandering to the “what if” place. I am forever grateful to all of those people.

We received updates throughout the day, but the relief came when the surgeon appeared before us. He had finished, and things looked to be successful. But, his valves were in rough condition, and only time will tell if another surgery is needed down the road. We learned that surgery was only half the battle. The 48 hours following would be critical.

We were able to see him soon after surgery. I knew he would look rough, and I had prepared myself. But, nothing can really prepare yourself to see your two-month-old fresh from open heart surgery. As the nurses busied around him nonstop, I stroked his tiny hand as he lay there so small and helpless. Several minutes passed, and I needed air. I left the room, fell to the floor and sobbed my eyes out.

Philip sent the rest of our family away for the day, after I informed him that if anyone else was going to cry in the room with Everett then they were not allowed in. I was not strong enough for anyone else that day, and I just couldn’t bear it.

A day after surgery, Everett had already exceeded the surgeon’s expectations. He was off the pacemaker and only required minimal amounts of medications. There is no doubt that he is a fighter.

Two days after surgery, I was able to hold him. And, boy, did I hold that baby. The rest of the time in the hospital, I rarely left his side. The nurses would constantly remind me to stay hydrated and urge me to go eat. But, I was with my heart warrior, my little miracle, and I wasn’t going to let him go.

holding E after heart

And, on the third day, Everett smiled. Not a “Was that gas?” kind of smile, but a full open-mouthed grin. There was color in his face, a light in his eyes, and a smile on his face. The Lord had blessed us.

After surgery smile

Within a week of surgery, Everett was discharged home. And, this time, it was for good.

These past six months have still been filled with struggles, but more so, there has been joy. The joy of being together. The joy of overcoming such huge hurdles. And, the joy of appreciating and loving one another.

God has indeed blessed us with a beautiful mess.

six months of living

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beads of courage

It’s been six months since our sweet Everett began to live. His birth certificate may say January, but a part of me feels like March 11 was his true birthday. It is certainly a day I will always celebrate along with his given birthday. This is the day Everett’s heart became whole. The day his life changed for the better. After two months of constant struggles, for the first time in his little life, he could breathe easy and finally found life worth smiling about.

beads of courage2

We should have known Everett was going to give us a run for our money even before he was born. At 38 weeks pregnant, I went to my regular OB appointment, feeling large and ready to gripe about evicting this child. Everything was running smoothly until we listened for his heartbeat. Immediately, I noticed the tempo was far slower than normal. My doctor continued to listen but remained silent, until I sputtered out, “Is that kind of slow for him?” And, at that point, his little heart began pounding away normally once again. After a couple more heart decelerations, my doctor decided it best to head straight over to the hospital, and since I was already at 4 cm, we would induce. Talk about a surprise for the hubs.

From there, everything was a breeze. God had blessed us with our second beautiful, healthy little boy. He passed every test with flying colors and nursed like a champ from the beginning. Life was normal, well, our new normal, for two weeks.

newborn blog

I took Everett to his two week well check and chatted about his progress. He was still several ounces below his birth weight, but the pedi didn’t seem concerned since he appeared to be nursing quite well. Then, she listened to his heart, and my own heart sank as she listened, then listened again. She noted there was a loud murmur, and we discussed whether it was best to wait and see or consult with a pediatric cardiologist. We chose the latter.

I first called the hubs and family, trying to stay positive and calm, convincing myself this would be nothing. It had to be.

No sooner had I walked in the door then I found myself dialing the number for the cardiologist. I fumbled on the phone, unsure of what to say in such a foreign situation. Amazingly, they had an opening the next morning.

Still convinced it would be no big deal, I decided to schedule Everett’s two week labs immediately after the appointment since I would be at the hospital. How naive, I see, in hindsight.

I arrived late for the appointment, of course, still learning to navigate how to leave the house while tending to two children. I forgot to fill out the paperwork, and I ran off without my driver’s license. Thankfully, I still had an old license that they accepted as my picture id. Needless to say, I was a bit frazzled. The appointment lasted an eternity. I thought we would never see the doctor. I was anxious to receive the all clear and move on with our lives.

He finally sat down with Everett and I, and I knew this was all wrong. I stared at him blankly as he told me my son’s heart has a problem. He was diagnosed with an Atrioventricular canal (AV canal) defect. This is a combination of problems that result in a large defect in the center of the heart. There is a hole between the chambers of the heart and problems with the valves that regulate blood flow in the heart. AV canal occurs in two out of 10,000 births and is often associated with Down syndrome. E does not have Down’s.

He would need surgery – ideally, at four to six months. The plan was for Everett to double his birth weight before surgery would happen. But, God had other plans.

Continued i’ve never liked dominoes

Below is a visual explanation of AV canal that I found online via the Cardiac Center at The Children’s Hospital of Philadelphia.

sidebyside_cavc-avsd

 

i have a heart warrior

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Blog Everett

E was born in January, and he is a heart warrior. He earned his “zipper” four days prior to turning two months old. Along with a couple extra creases, easily confused as fat rolls now, from two abdominal surgeries at one month old.

There was no hint of a problem during my pregnancy or at birth. We discovered at two weeks old, a loud murmur, and sought additional opinions from a pediatric cardiologist. At this point, we learned he had an AV Canal defect (more detail another day), which meant surgery at four to six months of age. We didn’t make it to that point.

In March, E was recovering from surgery and still in newborn clothing. At almost seven months old, he now sports 9- and 12-month-old clothing. This child is a fighter. Despite, the medical troubles he encountered off the bat, E is my child of JOY. There is no word that describes him better. He is JOYFUL. Three days after open heart surgery, he smiled for the first time and has not stopped smiling since.

This is my miracle baby. My joy. My light. God has something very special planned for this little boy.

Read more about his journey here.