Day 6

Mikayla had another good night last night. The hospital are basically just feeding her and changing her- she really doesn't require any more "work" than that! She is such a good little baby- she sleeps alot- probably more than most, but she is still very newborn, and newborns are very sleepy in particular in their first two weeks.

We spent some time with her this morning, then Russ and I came home for a nap. Quite honestly, this back and forth-ing from the hospital is terribly exhausting. We went back again in the afternoon, spending time feeding her, gazing at her, and cuddling her.

We were about to leave, when the sister told us that the genetic probe results had come back, and that the doctor would be coming to discuss the results with us in the next hour. So we had to wait a gruelling hour an a half to speak with the paed about the results.

The results were as expected really. It is confirmed that our precious little MIikayla has full blown Trisomy 18. We are shattered! It's weird, deep down we knew that that would be the case, but there was just this glimmer of hope that we were latching on to. I mean, when we had all the scans we were given the all-clear! Perhaps that could happen again!?

So what does this all mean? Well, Trisomy 18 is a limited life expectancy disorder. Our little Mikayla's days with us are numbered. 60% of babies with T18 don't live beyond 21 days. Only 10% make it to their first birthday or marginally beyond. The statistics are not good. Our blessing is that Mikayla's defects are not huge, but the downside to that is that we really don't know what will take her life- really, we don't know what to expect. Each day with her will be a blessing to count. And each day a day closer to the end which we are to expect.

It's heartbreaking. Our time with her is inevitably to say goodbye. We will do everything we can to treat her like a normal baby. We need to for the boys. Luke and Josh need stability, and so far, we've not been so good at giving that to the boys. And we also cannot live holding our breath. Mikayla also needs us to love her like we would a normal baby.

Her progress will be slower than that of a normal baby. We're really not that sure what the extent of her "damage" is. It seems to simply be a waiting game. I am not sure how I will survive this.

The good news is that we will bringing her home tomorrow. Yay! It's gonna be hard work, but we will love her while she is with us- and try and have some kind of normalcy in this family. Will be glad to not have to continually be driving to and from the hospital.