Camping on the Couch

The past few days have been full of everything and nothing all at the same time. Our Saturday was spent keeping an eye on Josephine and her apneic episodes. She had a few, but it wasn't until the evening when they began to get bad. On Saturday night, Josephine got her first official bath. As you can see from the picture, she rather enjoyed it! She relaxed and liked feeling the warm water run over her. What she didn't like was the abrupt change in temperature after getting her out of the bath! She wasn't too thrilled with the lotion afterwards either. But when all was said and done, it wasn't so bad. You know, it's funny the little things that you forget about until you have a newborn around again. I had forgotten how much I love the "fresh from the bath" fuzzy baby hair! And the new baby smell is the best!

After her bath, she had a few more episodes and we saw that more and more stimulation was beginning to be required. After awhile, her episodes increased in frequency, but decreased in depth and we noticed that she would pull herself out of them. Since then, we have not done much in the way of stimulation except to talk to her and rub her chest and back a little. Because of the frequency, we have spent the last three days and nights on the couch to be close to the oxygen concentrator. She doesn't require the oxygen all the time, but after a particularly deep episode, we give her some just to help "pink" her up again.

Sunday was the roughest and the day that had us worried the most. She was lethargic and slept most of the day. Her apneic episodes were happening every 10 to 15 minutes and since her little body was working so hard to breathe and circulate blood, her digestive system was VERY slow. She had one feeding at 9 am and then didn't eat again until later that night, and those were partial feedings. We had stopped her feedings because she wasn't having any bowel movements and her residuals (the amount of milk left in her stomach) were very high. We did give her Pedialyte throughout the day to keep her hydrated, and by late Sunday evening, she finally had a small movement. We had the on-call hospice nurse come out to check on her. We mostly just wanted to make sure that we were doing everything possible to keep her comfortable.

Monday was much better. She still had fairly frequent episodes, but not nearly as serious. Her bowel movements and wet diapers increased throughout the day and she went back to her full feedings with no residuals. Today we noticed that she has a slight rise in temperature and her bowel movements are slightly green. This could be a sign of an infection, so we are going to take her to the pediatrician for some antibiotics. If she does have an infection, this would help to explain the last few days.

I'd say the hardest part to all of this is just the pure bewilderment. We're never sure if this is just a little sickness or if we are nearing the end, and it's at those moments we truly start the cherish the present time we have. We feel incredibly lucky to have been able to bring her home and have this time with her. For now, we are focusing on each moment and the wonderfulness of our little family.