Well, we are back home again and we pray that this time it is to stay!! We had our family meeting yesterday with the doctors and got a little bit better understanding of Kathryn's diseases - BPD (Bronchiopulmonary Displasia - Chronic Lung Disease) and PHT (Pulmonary Hypertension). I don't think that we or the doctors realized the severity of Kathryn's case of pulmonary hypertension until this last hospital stay. The doctors feel that it is the primary reason that Kathryn's oxygen requirements were increasing and once they increased the Viagra, it seems to be holding steady at 2 liters. At home this afternoon, she has been at a tad less than 2 liters and keeping her sats in the high 90's so that is great!!
I went this afternoon to pick up her medicines at discharge and literally received a small grocery bag full. Praise God for Medicaid for Kathryn or I also would have forked out a house payment to receive them and this was just for one month. The meds she is now taking amount to 10 different ones - 3 diuretics for her BPD, potassium due to all the diuretics, iron, viagra due to PHT, zantac due to the viagra that can upset the stomach, MCT oil for fattening Kathryn up, and Albuterol and Flovent inhalers for her lungs. Believe me, it sometimes takes 30 minutes to draw her meds for the day!!
Being home this evening has been a true blessing. I have not been here for two weeks (literally) and I sure missed it. We all had dinner at the kitchen table together and Greg said that he had missed his girls. Simple tasks that we usually take for granted were wonderful to accomplish this afternoon - such as vacuuming, washing clothes, grocery shopping, and actually cooking dinner without dialing a phone number. We are also trying once again to settle into parenting two children under the same roof! I remember how hard it was when we first had Madelyn to experience the exhaustion of first time parents, the hassles of preparing formula non-stop, washing what seemed like 15 bottles a day, changing what felt like 20 diapers a day, etc. Now I step back and realize how precious those things are. With Kathryn it's much more than that and that too is a blessing.
I thought about it this week and realized that God blesses special babies with special parents. I am not so sure why God considers us special parents, but I feel privileged that He chose us to raise one of His miracles (exhausted, but privileged)!!! We are certainly learning a lot about working together as a parenting team, about what's important in life, and about slowing down sometimes to take a little time to enjoy the little things. Speaking of little things, it's off to bed with me. Tomorrow morning we are all enjoying some snuggle time together, breakfast together and I am taking Madelyn to the library to get her library card. She is so excited - it's like it's Christmas!
Thanks for checking in on our corner of the world. Thank you for the privilege we have of being part of your prayers. I pray each day for everyone that is praying for Kathryn.
Faithfully, Kelly
2 comments:
Madelyn and Kathryn are both lucky to have wonderful parents who realize that it's the small things that mean so much. Through our whole experience it really made me see just how special it is to have a baby at home to change diapers, clean spit up and so forth. It made a lot of people realize that getting up at 3am to rock their baby to sleep was something not to take for granted because there are some of us who just hope and pray for that day to come. Like you said, I'm not sure why some of us have been choosen to be parents to these tiny miracles, but you have done it with grace. We hope you enjoyed your snuggle time with both your girls! Love from your neighbors in Georgia!
happy birthday kelly! from the dillards
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