Life got complicated real fast!! Kyle went home with 6 different medications
Talk about complicated! The first thing I did was get a notebook to keep track of feeding amounts, times and medications. We had Kyle sleep in our room at first until we felt more confident. His feedings were going well except when he had his reflux and would spit up almost the whole bottle. We were so worked up about Kyle getting enough food and calories. He had a mix of breast milk and formula to add the extra calories. The first couple weeks I would wake Kyle up every three hours at night to eat. I remember it would take about an hour to feed him because he was slow to drink and then I would have to hold him upright for 10-15 minutes (depends how exhausted I was) so that he wouldn't spit up his whole bottle. That lasted until we went for our post-op check with Dr. Tweddel. He said, " Let both of you sleep." Bless him!! Kyle drank about 500cc a day.
Eventually things calmed down. We were more relaxed and got used to the medication routine. Eventually Zantac, Nystatin and Lasix were no longer needed. Kyle went to his room although we kept the monitor in our room. We saw his pediatrician (Dr. Frommel) often for weight checks and his cardiologist about once a month. Finally we grew not so anxious and remembered to enjoy our baby. Mom and Dad even went out a couple of times.
The most critical time is between the Norwood and Glenn. We knew that if Kyle got to the Glenn his chances were pretty good he could make it so we turned into hermits that summer. We didn't take Kyle anywhere. No one really stopped by the house. Dan and I would take turns going to family get togethers. It was tough but we got through it-more importantly Kyle got through it. Dr. Tweddel suggested that Kyle wait to have his immunizations until after the next surgery. He was making good progress and Dr. Tweddel didn't want anything to interrupt this pattern. This was another reason we didn't want to have him out in public. Even his baptism was done at church with just Grandparents and Godparents.
Kyle was doing the normal baby things. He rolled over and scooted around by kicking his legs while on his back. He was eating cereal (late August) and drinking 3-4 ounce bottles about seven times in a day. I was back at work at the end of the summer (teaching) and Dan was at home with the boys (home business). But soon Kyle was becoming blue and the second surgery was near. . It was time to go back.
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