Taking it day by day

Maelyn has been doing so well. You wouldn't know she is sick and most of the time, I really don't even think about it. But three times a day we stop and sit on the couch and check her oxygen. Her oxygen level is the one indicator we have as to how her heart is doing and if/when she would need surgery. Once her oxygen saturation is 75% or lower she will need surgery. She has been consistently in the mid to low 80's. Over the couple days she had been in the 70's. We kept blaming it on the monitor sensors or that it was because she had been fussing, but yesterday morning when it was still in the 70's, I really started to worry that her oxygen was really dropping. I was contemplating calling her nurse, it wasn't quite 75, but it was not in the low 80's like usual. Her nurse ended up calling me to check in since we didn't have an appointment this week. I explained what I had been seeing and that other than the numbers, she seems the same. She has had a runny nose, but is breathing and eating fine. Her nurse decided that she should still come in for an echo and to get checked out. So a couple of hours later, Tim came home and Maelyn and I went in. The echo didn't show much change at all, which is good. Their pulse-oximeter showed the same numbers I had been seeing at home. They took a boogy sample to test for a virus, because that could be one reason or a drop in her oxygen. When they weighed her and told me her weight I was shocked! In 10 days she had gained 17 ounces! I knew she had probably had a growth spurt because we had one day that she was nursing about every hour and then the next two days she just slept, but that just seems like some crazy weigh gain! Her nurse was pretty impressed too and double checked that she was only getting breast milk, no calorie supplements. They were going to try putting her on some oxygen to see if it helped her but ended up not trying it. I had been told before that giving her oxygen probably would not have any affect on her due to her specific situation, but they were going to give it a shot. It is good to know that if her oxygen does drop lower they would be willing to try it. Since she is gaining weight, eating well, doesn't have problems breathing or anything, the echo was fine and her oxygen is still above 75, they decided not to do anything yet. The doctor we saw this time also said that when she gets a catheter surgery they could attempt a balloon to open her blockage, but again with her specific situation he doesn't think it would work either. It was just good to hear that there are things that they could try before the shunt surgery, even if her chances of them working are poor. This doctor (who we had seen in the hospital) was very optimistic and positive. We have an appointment to go back again on Monday. 

When I realized her oxygen really had dropped, first I just started to pray. I prayed that God would increase her oxygen and prayed against her needing surgery, but at the same time just prayed that God would prepare and protect both of us. I have been try to mentally prepare myself for surgery, because I know it is coming at some point. When the time comes, I wont be able to nurse, I'll have to switch to just pumping, which I think it going to be hard to let go of, and just not having her in her bassinet next to my bed at night and in my arms all day. Also the thought of being being back in the hospital is not great. So I have been praying that God would prepare me for these changes. 

Then I started cleaning and organizing, not knowing if we would be needing surgery soon, I want the house to be ready. I know I need to be ready to take things day by day, but it is hard! Even having a spur of the moment appointment was hard. I had planned on having a relaxing day at home, doing nothing and then I had to quick get ready and packed, find someone to stay with the boys and get Maelyn fed on time and in the car. I have been trying not to plan out anything more than one week, but I realize now that I could wake up in the morning and have to take her in any day. Hopefully we will have some notice before she will need surgery, we should be able to schedule it, but there is no guarantee. 

The good news is this morning her oxygen was back in the low 80's! There was hope at the appointment that the drop was a fluke due to weight gain or the runny nose, and we prayed all day that her oxygen would increase. Praise God that it did! She needs to get to 3 months old before we can say for sure that she will not get the shunt, and that is my prayer. Keep praying that it stays above 75%.