1993 – Monica’s First Year, Open Heart, Sitting Up

This is an excerpt from our Christmas letter – 1993.

Thanks for all your prayers for Monica. She is just fine now!

Tim always wanted to deliver a baby at home, but I was always worried something could be wrong with the baby, so I’ve insisted on hospital births. Instead, Monica found her own dramatic entrance into the world! Tim delivered her about halfway to the hospital in the back seat of the Caprice. We are so thankful for those 10 minutes I held her during the rest of the drive to the hospital. Because of all the medical problems babies with Down syndrome have, she would have been whisked away from us immediately had she been born in the hospital. It was a wonderful experience — but I wouldn’t actually recommend it!

Rebecca, Gabriel and Daniel are thrilled to have a little sister. Becca is especially glad to have someone to share her room with. They are terrific with her, and although Daniel is the best possible stimulation anyone could ask for, we sometimes fear for Monica’s safety under his affections!

Our pediatrician advised us to have an echocardiogram done right away for Monica, since about 4O% of Down syndrome babies have some type of heart defect. Monica had an AV Canal Defect.

When she was 6 weeks old, she went into heart failure. She was put on medication to boost her heart, but was losing weight because her heart was using all her calories trying to keep up. The cardiologist recommended supplemental nasogastric tube feedings. We were able to keep her at home and use breast milk for the tube feedings. She nursed during the day and got 12 ounces over 10 hours through the tube during the night. She was able to get to 10 1/2 pounds in time for her surgery at 3 ½ months! The surgery lasted five hours. Her surgeon used patches to create dividing walls between the sides of her heart and made a flap of tissue into 2 valves. It worked! The nurse clinician doing our patient education said it would not be unusual for a baby to be in for 2 weeks to a month [in 1992], but Monica came home on the 8th day! Her hospital stay was certainly very stressful, but we felt the grace of everyone’s prayers during that time. Tim felt there was an army of 10,000 behind us. The presence of the communion of saints was never more real.

Six months after her surgery, the cardiologist took her off all medication and said he doesn’t need to see her for a year. Our pediatrician says he can’t believe how good her heart sounds.

We are so excited about Monica’s development. She started smiling at about 6 months and sitting at 10 1/2 months. The kids are her best cheerleaders. She responds now when we play with her and is even starting to initiate play. There was such a long time when we didn’t even know if she knew who we were. That was hard for us. I have to admit I am glad when I come home now to a babysitter who says Monica cried the whole time because she missed me!

Monica is a great joy for us, but we must admit to some emotional ups and downs. Tim sympathizes with his small business clients who must make their buildings handicapped accessible, but yet we are grateful for the doors opening to Monica. We have home visits from the County Board of Mental Retardation that have been very helpful (your tax dollars at work paying for early intervention services). Ironically, these visits leave us feeling under a lot of pressure to put all their suggestions into practice. I wonder whether my mothering skills are adequate to the task. Thank goodness we can repeat often “I can do all things in Him who strengthens me.”

Christmas 1992

Christmas 1992

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