Heart Surgery Scheduled!

We have a date - the first of February. I will let Jamie write more later concerning the details. For now we are so grateful Jonathan will have one surgery as opposed to two.

So many of you are praying for us and we cannot thank you enough. We know that it is because of your prayers that Jonathan is progressing and holding his own.

According to the cardiologist's scales (and without the diaper), Jonathan weighed in at eight pounds and about 13 ounces. I think I heard the cardiologist say that he was not expecting Jonathan to gain that much. His weight gain was not great but better than expected. Since Jonathan has put on the pounds, the surgeon can go in and do both procedures necessary rather than a less invasive one first followed later by a more invasive one.

Yesterday I contacted a mom who had a child with DS on Christmas Day. She sounded great -in fact I marveled at how wonderful she sounded. She was in much better shape than I was when Jonathan was two weeks old. She said their peace probably had to do with the fact that they've been busy with their other two boys and Christmas but also that she was a speech therapist and somewhat familiar with DS. She made the point that they were not dealing with a heart problem, that their son was functioning as a typical newborn would. She suggested that we might be experiencing more stress and anxiety because of Jonathan's heart issues. I had not really considered that - I think she was right.

Initially, we had to drive back and forth to the NICU, secure childcare with my parents or Jamie's for Jackson, answer Jackson's questions of "Who is going to pick me up?", "Mommy, where are you going?", and so forth. I was more concerned about Jackson than I might have been simply because I was gone so much more than I would have been had circumstances been more normal. Then we have had added doctor visits, having to secure childcare again, and answer Jackson's same questions. We have been more worried about germs than we might have been. Both Jamie and I are very social and love being around people. Having a baby would impose restrictions socially anyway. We just have more to consider and have had to quarantine ourselves more than normal. We brought Jonathan home on a monitor that routinely went off (either false alarms or situations that corrected themselves), scaring us to death. If the alarm went off at night, we would freak out, turn it off, and try to determine if the alarm were real or not. It was hard to rest easy after that each night. Additionally, we had an incident when Jonathan had just come home that terrified us and is etched into our brains. Jonathan was in his crib. He threw up and was face down in it. Jamie discovered him with his head held high out of it with foam coming out of his mouth and nose. We called the emergency hotline for our pediatrician only to be told to watch him for a second episode. I thought for sure we should have gone to the ER. The nurse we spoke with said no three-week-old could hold his head up like that so it was suspected that he had a seizure. After seeing the doctor the next day, it was determined he had simply thrown up and it was not a seizure. He had held his head up on his own. Since then, I have been frightened to let him nap alone for fear the same incident will occur. What fuels that fear is that the monitor never went off during the entire episode. One might think it would have gone off since it appeared he was not breathing. Had it not been for Jamie acting quickly, turning Jonathan over, hitting his back, and then suctioning his nose, I don't know what would have happened. Needless to say, when I thought about all that, no wonder we have been walking on eggshells for eight weeks! It is not just the DS! So, we are thrilled that his heart will be fixed sooner rather than later. His recovery will be tough, I am sure, but at least his heart condition will be eliminated.

Please pray for good health for our family. We need Jonathan to be healthy with no respiratory infections, fever, etc. so we can have the surgery.

Again, thank you for your prayers,
Julie