Tuesday, November 6, 2012

Moment to Moment, Day to Day

Today is a big day, election day. I am not going to say anything about the election except that I hope you all voted for who you felt was the best choice, and that no matter the outcome, we were all blessed to be able to have a voice in the election and that I truly believe, that despite some differences, we all want the same things and that in the future, I hope to see more binding together and less division with our approach to things., about our sweet, precious Auggie!!!

We have been on this journey for 6 weeks and we are currently at 25 weeks gestation!!! The past few days have been a bit emotional for me. I am a member of several "hydrops" pages on facebook, and of course, sometimes the news is good and often the news is bad. I feel discouraged when I read the bad news, because I realize that even with all of our strides, this still could end badly. It is hard living day to day and week to week. Knowing that each milestone, though great, still represents more challenges left to go. I guess I sometimes fool myself into thinking that if we can only get to delivery and then see NICU babies struggling and passing and realize that even once we get to delivery, there is still a long road ahead of us.
I was talking to my mom today, wondering if I could pray more or cry more or crawl on my knees more...and I know the answer to this. I know that I am not being punished and that God has a plan and that He has a will and there is a purpose for all of this...but it is still hard to understand and it is scary.
Sometimes I feel that perhaps I get overconfident, and just as I start feeling at ease and really believe everything is going to turn out alright, then there is a set back or a friend starts struggling with their baby, and I realize how serious all of this truly is.

At first the hydrops pages on fb and emails from people were only discouraging to me and I could barely stand to go to them, however, of late, I have met so many others, who are traveling this journey along side of me, many being treated at CHOP by the same doctors, and many others getting shunts, some for other varieties of hydrops and some with chylothorax like Auguste. I have enjoyed meeting these friends and seeing the strides we are all making and truly feeling we could all very well see a miracle. Some of them are planning their birth plan and I know that our time is approaching very soon.

Right now we are feeling a bit torn with doctors and birth plan. We went to Charlotte yesterday and met with Dr. Stephensen again. She has spoken to Dr. Johnson at CHOP and has accepted us as patients to follow as closely as possible to monitor any progression of fluid. She seems a bit reluctant regarding what to do about our connection with Greenville maternal fetal group as I think she is worried about stepping on their toes, as well as knowing they would more than likely be involved in our birth if we stay locally. I know this to be true and have mixed feelings about it. I am meeting with my OBGYN Friday and I truly feel I can talk openly with her regarding all of this and get her thoughts. Hydrops is still a rare finding and there is still not really a standard of care. Because at least one of the physicians in Greenville pretty much blew us off at the mention of shunts, and was sure to show his disapproval of such things,  I am not sure it makes sense for them to be monitoring to see whether shunt may be indicated, and at least Dr. Stephensen in Charlotte did train with Cincinnati and seems comfortable with this concept and has even done shunts herself. I do know that Stephensen's nurse, Emilie, has spoken to the Greenville MFM's nurse, Meredith, and they have agreed to at least find one physician willing to follow us at Greenville rather than bouncing around, if we decide to return there for some visits. I feel consistency is just as important as how often we are seen,and I think we need to have a physician who is also confident in what CHOP may be able to do to help Auguste, and know that their encouragement and eagerness will make just as much of a difference if we deliver in Greenville. I am also going to call CHOP this week and see whether or not we should try to get there in the next two weeks for checkup, to discuss our visit with neonatology and possibly start planning a birth plan. I know we live in Greenville, but when you find a group of doctors like at CHOP, who are not only helping your child, but also feel confident in their ability to continue helping him survive, it is difficult to imagine going from "warm and fuzzy" to a gloom and doom situation. I feel confident that Dr. Carrie Twedt (my OBGYN) will at least give me some guidance in navigating these issues and hopefully I will feel as if we may be able to proceed with a "game plan" involving HOME! Because obviously, if we can work out more stuff from home, the easier it will be for our family unit.

We just keep reminding ourselves that this is but a minute in the grand scheme of things, and as inconvenient as being in Philadelphia may be, if it saves our son, it is worth every minute and dollar spent.

So, all in all, Auguste still seems stable, although fluid is still remaining on lungs and abdomen, it does not seem to be getting any worse...which scares me less regarding sudden death in utero, but more involving what could happen after birth and in the NICU. Sometimes I feel grateful regarding not getting a shunt placed yet, and other times I just wish we would get there already as I don't know how I feel about fluid remaining on his precious little lungs. He is still a surprise in that he still has not really declared himself and we just keep waiting for something to get worse or better, and instead he just nuzzles himself into his placenta and shows us that he would really rather us just leave him alone already.

We have an appointment with OBGYN Friday and our glucose tolerance test is rapidly approaching. I return to Charlotte next Monday and will possibly go back to CHOP before Thanksgiving, although I am scared of getting stuck there during the holiday.

Things are stressful. Mickey is in school, I am the primary income in our home, so that is causing us stress, not to mention Mickey still trying to complete his dissertation, proposals and interviews for jobs. He has an interview on Friday with one of our top choices (pray that goes well too). Unfortunately, my Noah Bear, my dog who has been by my side for 12-1/2 years now, is nearing his end. He is getting worse and I know a decision needs to be made, but I am just not in a good place for that right now...I knew this would be our last year, but with Auguste, and hydrops, the thought of doing this right now is distressing. Like I said earlier, living moment to moment and day to day is not easy at all.

However, if I have learned anything through all of this, it is that this little life inside me, and these children bickering at my feet, are the most important thing in the world. It doesn't really matter where we end up, as long as we all end up there together.

I decided to add some photos of them from grandparents day, because I like photos even when they don't have to do with the thing I am blogging about.

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