more than a little picky

aversion

Everett has a sensory food aversion. It’s not real severe, but it’s there. And, it will be a long, slow process to overcome with the occupational therapist. I can’t help but feel my Everett is being picked on. If it’s not one thing, it’s another.

On the drive home, I started mentally tallying all the obstacles he has faced in his short little life:

Two abdominal surgeries, NG tubes, loads of medications, open heart surgery, reflux, physical therapy for torticollis, plagiocephaly, the helmet, most likely another helmet, and now a sensory food aversion.

Then, I ended my pity party because, really, there are far more things to be grateful for than not.

I am thankful he is home in my arms. I am thankful it’s not his heart that brings us to the hospital this time. I am thankful he is healthy. I am thankful for his smiles and that he is happy. I am thankful that he can hear the “I love you’s” and sweet lullabies we sing. I am thankful he can see the wonders of this life and how his older brother delights him. I am thankful he has the voice to laugh and cry and say “Ma Ma” – and, eventually “Da Da” 😉 I am thankful he can roll and scoot to explore the world around him. I am thankful he can feel my kisses and snuggles. And, I am thankful he can take food through his mouth even if he’d rather not.

I am thankful he is ours.

While today I am thankful, that doesn’t mean I won’t feel frustrated or upset tomorrow or the next day or the day after. I’m only human. Each day we have a choice. We can feel sorry for ourselves, or we can focus on our blessings. And, some days we just want to feel sorry. Some days we need that pity party. But, for me, that day is not today.

On a day that I didn’t get the answer I wanted, and I would much rather pout, I give thanks instead. I am thankful.

six months of living

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