Monday, November 12, 2012

The Unforeseeable Future

Sometimes I get so caught up with the motions that I forget the gravity of the situation we are in. Everyday I know we are moving forward a day at a time, but the past few weeks we have been so caught up in this really great learning curve, and trying to get the right monitoring and be on the same pages with the different teams of doctors we are working with, and getting insurance squared away and completing different tasks that still need my attention at work, and care for our other children, school, finances, etc...and somehow, we start forgetting that our baby may not make it, or what truly worrisome things we face in the future.

Today we met with a new Greenville Maternal Fetal doctor, whose name is Dr. Francis Nuthalapaty. He was sort of hand selected by my OB as someone she thought would fit well with us and our plans for Auguste's care. She was right, he was really down to Earth, he stated right off the bat that if he was in this situation he too would be seeking treatment at CHOP, and he gave us sound research based information and answers to our questions. This was the first time he had seen us, but he had already done his research and knew all he could about us coming in the door. He also viewed photos of the previous scans and felt them to be stable. Auguste is still rigorous, reactive and perfect, although he remains very sick with both ascites and pleural effusions which remain "unshuntable" and moderate. He stated he would be sure to call the doctors at CHOP to discuss with them what they were waiting for regarding shunt procedure, etc...and felt he could certainly monitor us under their guidance and get us back to them when needed.

He then asked me how I was doing, emotionally. The question took me off guard a bit. After our visit, Mickey went to pick the kids up from school and I went downstairs to my OB. As I sat in the waiting room those words rolled around in my head again and again. How am I doing? Emotionally? Truthfully, the past few weeks I have been less emotional. It has been 7 weeks since this journey started, and the days that were filled with depression and tears, have turned into determination and education and hope. Hope is really probably not the best word...because I haven't even thought as much on that as much. Its a weird feeling. I don't know what I've been feeling. I truly have felt confidence. I know this is not a bad thing and that tears and worry are not healthy for me or for Auguste. However, I think when Dr. Nathalapaty asked that, it dawned on me that the things most physicians first think of when they hear "hydrops" is fetal demise. I realized that our chances, although much better than when we started, are still slim. We started this journey 7 weeks ago, but still have at least 7 more to go...its a long journey, to say the least.

I think I have told you that Auguste has perplexed everyone by not already "declaring himself", and the fact that he stays stable, not getting worse or better is unusual. I guess I have been thinking that we were basically waiting for delivery, and then meet the challenges of NICU, but that it dawned on me today that he could still get very sick very quickly in utero. I am scared. I have only one way that I want this to turn out. Despite my faith in God and my recognition that He has a divine plan, there is truly only one way I want it to turn out and I am scared of losing this little one. I see my future with my four children, and seeing a different future is devastating, to put it mildly.

 I love this little boy so much, he is our son, and we would do anything for him even now. By definition in society, he is only an extension of me and not technically our living son yet, and we learned today that this will likely cause us some more hoops to jump through when the new year approaches as far as insurance and legalities of FMLA...This evening has been stressful to say the least with that new information and I have a lot to accomplish this week to prepare us to know exactly what to expect.

Mickey also wants me to call Dr. Johnson at CHOP and start planning our birth plan. I think we are leaning towards delivering Auguste at CHOP and perhaps spending the early part of the new year in Philadelphia. We know they are prepared for hydrops babies and that his best chances are probably there, even though that does mean temporary disruption of our family and even Mickey's research and dissertation, but that is how we are leaning at the present.

I don't have a good ending for this blog, as I usually try to tie them up with some closure of the day, but truly, there is no pretty feel good way to wrap up this day...I guess future days will reveal themselves more clearly.

1 comment:

  1. Oh hugs lIsa, what a roller coaster you are all on. And we counted bunks today. We have beds for 2 singles, 1 crib and a couple sharing. We are prepping for you, but more importantly...we are praying for you. Folks at church are asking and praying as well as my family. Breathe in and out, and love each other. You are doing God proud through all the ups and downs. Both when you soar on hope, and when you sob into His chest. He wants it all.