I’m a first time mom. Nothing in this blog will ever be the “right” thing to do, but just what works for us. My husband, Rich, and I are high school sweethearts, though we have only been married for two years, we have been together almost 12 years. We were blessed with a beautiful angel within a year of getting married named Grace Margaret (Margaret after my grandmother) and our life was turned upside down.
I had never really heard of Ectrodactyly before we had Grace. We found out at about 18 weeks into my pregnancy when an ultrasound showed she may not have all her fingers and toes and also had a cleft lip, with possible palate (which she did end up having.) Talk about a shock. I won’t lie. I took it hard. I cried for days worrying about my little one. I teared up for months just talking about it. I ended up having her at 38 weeks through induction (was not a fan) due to pre-eclampsia. I had just a few moments with her before they took her to the NICU in the hospital, where she remained for about a week.
Emotional note: Nothing will EVER prepare you to leave the hospital before your baby does. I was having an emotional breakdown as they wheeled me out as my baby stayed in the NICU. I have so much respect, and heartbreak, for NICU parents of preemies or those who lost their little ones because they had to go without their babies home much longer than we did, or, worse, not come home at all.
We were lucky to have Grace transferred to the NICU at Ann & Robert H. Lurie Children’s Hospital in Chicago for a few more weeks. She had ALL of her doctors there. I was able to stay with her most days more comfortably since I was a stay at home mom. She had so many doctors: plastic surgeons, physical therapists, speech therapist (working on her bottle feeding), nutritionists, kidney doctor (enlarged kidneys), cardiologist (for a small murmur) and the wonderful nurses and NICU doctors that monitored her closely. I tried to pump since she was unable to latch due to her cleft, but the stress and unhealthy eating was overwhelming. I never really had time to pump due to so many doctors interrupting when they were coming in and out of her room. I soon developed Post-Partum Depression and Anxiety before she even came home. It was terrible, and I feel so much regret not trying harder to pump or get help.
She had her cleft lip repaired in November 2015 (at about 4 months old) and her palate repaired in April 2016 (about 9 months). She had ear tubes put in during her palate repair due to fluid buildup (which is common with clefts.) She’s had two surgeries for her tear ducts, which are missing in her left eye. She will still have at least one more surgery on that left tear duct in about a year.
EEC is such a huge part of Grace’s life now. She walks and grasps amazingly. She “graduated” from her physical therapy for hitting her milestones on time. She only takes occupational therapy for her motor skills, speech therapy for eating and talking (she still has a small hole in her cleft to be repaired later) and a nutritionist for being such a picky eater. They all think she is a rock star for doing so well.
This is my life. I have wanderlust, but the reality is that I work full-time now as a page designer. I spend my spare time with family, doing photography and traveling as much as I can with my little one between therapies and doctors appointments.
To anyone just starting their EEC journey… it gets easier. You get tougher. You stop crying as much. Your little one can even become stronger than you too. Mine is. If you have ANY questions about EEC or my journey with PPD and PPA, use the CONTACT page! I am always here.
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