When I think about our latest appointment, this image comes to mind. The expression of shock and disbelief, combined with disappointment have become a constant in our lives. Don’t get me wrong- there are some milestones worth praising. She finally laughed. She is able to put her hands together over her chest. She recognizes each of us and greets us with a huge smile. I know the entire situation could be a thousand times worse. It doesn’t keep me from tripping over the hurdles that have surprised us however.
We have the dates for her cath, pre-ops and the Stage 2. The end of Interstage is on the horizon. With it comes mixed feelings of relief and fear as we realize that once more we will hand our precious Isabelle over to Dr. Emani to work his magic. One more time of her on life support. One more time of praying her heart starts back up. One more time of anxiously waiting for updates. This time feels more difficult than the first, biggest reason being she has become part of our family. She smiles at us, she loves us and we have to hand her over again. And I thought missing the holidays was going to be my biggest downer. But wait- there’s more…
At our latest appointment with the GI specialist we were told that she most likely not learn to take a whole bottle. Like, ever. What? But she takes 45 ccs sometimes! What does this mean? She will need to lose the NG tube and have a more semi-permanent tube put into her stomach. We can probably do it while she is under for the cath. I like to have the patients recover for 48 hours before being discharged, so you’ll probably be here until the Stage 2 surgery. So we aren’t able to go home?
I have been trying to figure out why this upsets me so much. Is it because it is one more thing we will have to deal with? Is it because I feel like I failed with getting her to eat like a normal baby? Maybe it’s the letdown of knowing that in spite of what you have been told, the Glenn won’t fix her so she will eat better. It will make her more stable, but not help in the oral feeding. Maybe it’s the glaring realization that she won’t eventually be like everyone else in the way I had hoped.
But when I was explaining this to my colleague on our way into the city this morning, it hit me.
I wanted to be able to bring her home. What if this is the last time she will be home? I wanted our family to be together before we had to hand her over one more time. Request denied.
I’m a total mixed bag of nuts today. I’m angry, sad, happy that she is with us right now and scared to death. Yes, I know the tube will be helpful in the long run but it doesn’t make me feel like less of a failure. I still haven’t gotten over not being able to breastfeed. I am still bitter looking at photos of other peoples’ babies who can sit up and are hitting their milestones. I still am angry at God for putting us through this. Today I feel like I hit the ground like the woman in the picture. We were in midstride, getting ready for the next episode and I found myself on the gravel.
Not much left to do other than brush myself off and start running.