Tuesday, March 8, 2011
I have slacked on this blog but have decided to get it up and running again and chronicle our family's life.
I am passionate about my experience as a mother and more importantly, a mother to a child with special needs. I guess I could be considered a relatively crunchy mama. I practice most aspects of attachment parenting including extended breastfeeding, cloth diapering, baby wearing, cosleeping (to a point) and I make my own baby food.
My husband and I began planning our family before we married. Our plan was to wait five years before trying but my clock started ticking after about three years. This was interesting because as a teen and young woman, I had always said that I never wanted kids. That changed when I met my husband. I knew I wanted children with him. He also wanted children but wanted to stick to the agreement – at least for another year. After four years of marriage, we started trying for our first. I became very interested in learning about conception and had myself convinced that it would take us a long time to conceive. We were surprised that I was pregnant after only two cycles.
My first pregnancy was difficult. I started contracting at around 24 weeks but did not show physical signs of pre-term labor until around 32 weeks. I spent a few weeks on bed rest and delivered a healthy baby boy, Baby J – as he was lovingly nicknamed in utero, at 37 weeks. Baby J is an absolute joy to be around. He just turned three and is loving, affectionate and has a wild independent streak. He absolutely adores and is very protective of his baby brother.
Being exceptionally fertile, I became pregnant again when Baby J was just 10 months old. My second pregnancy was much like the first. Lots of contractions but they started earlier and I started showing signs of labor earlier as well. To add some stress, Bean – our nickname for #2, began measuring about two weeks small at 32 weeks and continued to do so when I delivered him also at 37 weeks. Bean was born relatively small – 5 lbs 15 oz – and needed oxygen to help him breathe immediately after delivery but other than that, he was seemingly healthy.
We learned very quickly that he was a high needs child. The second night in the hospital, I sent him to the nursery because I really needed an hour or two of sleep and the nurses brought him back to me because they were unable to soothe him. He had difficulty latching, but we mastered that by day two. At about three weeks old, he was diagnosed with severe silent reflux and multiple food protein intolerances. I drastically limited my diet so that we could continue breastfeeding. To this day, I am free of the top 8 (dairy, soy, wheat, eggs, fish, shellfish, peanuts, tree nuts) and gluten. He was an exceptionally irritable child until he was about a year old but he was, and continues to be, a little sweetheart that is beyond attached to his mama.
Bean is now 18 months old and in his short life, he has faced many challenges. Over time, he has accumulated many diagnosis: pulmonic artery stenosis, hypotonia, global developmental delay and extreme sleep issues – he sleeps one to two hours at a time – all in addition to his ongoing digestive troubles. He is followed by many specialists including a gi, neurologist and cardiologist.
Recently, we took him to a geneticist to see if they could help put the puzzle pieces together. We expected her to be noncommittal and offer to do some tests but were surprised in the first appointment that she was very confident that Bean had a condition called Williams Syndrome (WS) and that she was going to do a microarray analysis to confirm diagnosis. Husband and I left the appointment and immediately googled WS and felt like we had the wind knocked out of us. It explained everything we had been dealing with. Everything. Including Bean’s utter lack of stranger danger and intense need for human contact and interaction. Three and a half weeks later, we had our answer. Reed was indeed diagnosed with WS.
WS is a rare genetic condition caused by a microdeletion on the 7th chromosome and is characterized by congenital heart defects, dysmorphic facial features including puffy eyes – we were constantly asking his pediatrician about his puffy eyes – and blue eyes with a white starburst pattern on the iris, kidney abnormalities, hypercalcemia, hypotonia, developmental delays and intellectual disabilities. People living with WS are incredibly social and often have great affection for music. Bean is a wonderful, loving, charismatic little boy who melts my heart with every smile.
Right now, we are busy with almost daily therapy sessions and preschool for Baby J and also follow-up appointments with all of Bean’s specialists given his new diagnosis.
I plan to use this space to chronicle my experience raising two boys, one with special needs, and all of our joys and perhaps some challenges. I would like for this to be a place where I can keep friends and families up to date and also share my experience with anyone else that might be interested and I promise that my next post won’t be this long.