Monday, March 28, 2011

Sometimes Specialists can be such downers!

Disclaimer: This is a long one so plow through as best you can!


We had another ultrasound appointment today and of course a different specialist. After the ultrasound tech was done she put up the stats on the screen and Ronny and I both saw that Aaron has grown 4 days in the last 11 and gained 2 oz (roughly 63 grams). This although isn't ideal its certainly better than the last month so we were thrilled. Then the specialist came in and killed our buzz, bah! He showed us the graphs and the regression curves (sorry, math term) where Aaron is at compared to other babies. Obviously we are way below the normal curves and on most of the stats we are in the 0-1%. He then told us that we had a 0% chance of having a normal delivery and 0% at having a perfectly healthy baby and that the chances of having this baby make it were very low. Nothing new there. He then told us that we needed to make a decision on how we wanted to proceed with this pregnancy. It looks as if my placenta has at most a month left to grow this little guy but that he thinks I will likely deliver in the next two weeks. (In my head I told myself we could hold out as long as we need too!) I then told the doctor that we will do whatever we need to do to get this little guy here with the best stats we can and then the doctors would take over and we will deal with whatever happens then. He asked if this was a decision we made because of religious reasons and I said yes but I also feel like religious reasons aside, I am his mother and this is my son and I will do whatever I can to give him the best possible chance at life, that's my job!

At this point I am now being transfered to the specialists at the University of Utah. They can intubate babies as little as 300 grams and will take whatever baby comes at whatever age and do their best. We are at 223 grams as of now, we can get there. I'm still pulling for a full pound, we are half way there now! Knowing that they can take a child as small as this we also know that the odds of his survival long term is very low but we will take whatever percentages they throw out and focus on the positive. I am now waiting on a call from my doctor's office to find out when I see these new specialists. Hopefully in the next day or two. I will now start Non Stress Tests (NST) a few times a week up at the U so that when the doctor says its time they will send me straight to delivery and I will have an emergency c-section. (My other thought was that if the U could be helping me better than why am I not there already????!)

We then discussed my positive results of MTHFR. 5% of people are positive with one marker of MTHFR and less than 1% have two positive markers, guess which one I fall under. Yep that's right, 2 markers! See we can do terrible odds and still succeed. Ha! Then the doctor said that even though I have this disorder this is not what is causing the problems with my placenta and that he really doesn't know why what is happening is happening and that he can't tell me it won't happen again in future pregnancies. I told him I wasn't too concerned about future pregnancies, I was concerned about my current one. He thinks that I have another rare clotting problem that they just haven't tested for yet and that he recommends testing for those and that there are even more clotting disorders that I should test for but can't do until after I deliver. (Really, how many rare disorders can there be????) He also said that I will need to see a cardiologist 6-8 weeks after I deliver to check on my ticker. I looked at Ronny and said I have enough on my plate right now, we will worry about that at a later date! I also told this to my ob when he called me today and he agreed with both the specialist and me that yes it will need to happen but there are bigger problems that need to be addressed first!

So, this wagon train is moving and picking up speed. I told my doctor that we are ready for the good fight and that I have great team players on my side and we are all praying with earnest. He said he is one of those players and that although he is transferring my care to someone with more experience he still wants to be on the team. I will take all the players who want to join in, this little one is coming and we are ready!

4 comments:

Day Family said...

Our family is praying for you guys. You are in our thoughts.

Sant Family said...
This comment has been removed by the author.
Jennifer said...

If there is anything else I can do besides pray, please let me know.

Suzanne said...

Denise, I don't think I've ever met you, but I was a friend of Ronny's in high school and every once in a while I come around to your blog for a little catch up. I am praying for your family.

I know it isn't easy. I know how it feels to not know. I know how it feels to go to the hospital to have your baby and not know whether you should set up the nursery or not, because if he doesn't come home it will just hurt that much more. I know what it's like to deal with specialists who can't really give you anything concrete until the baby actually comes and they can find out the rest of the answers. And then for there still to be questions they can't answer.

And I know how it feels to pray so hard for what you want, having 100% faith that the Lord can give it to you, yet in the same breath to say "Thy will be done," and mean it with that same 100% sincerity.

I'm glad you have a strong family, and that your faith is definitely up to this challenge. I know that doesn't make it easy, but it sure helps.

I don't know. Sometimes it helps to know you're not alone. And sometimes it helps to know that there are more people praying for you than you thought.