Sunday night I had the best conversation I have had in a really long time. Sunday was the night that I spoke to Tatiana. Like me Tatiana had the fetal surgery and like me her little girl died in the surgery. I want to say how happy I am to have met her and had the chance to share our stories together but at the same it sucks knowing this had to happen to someone else. I am however so grateful that Colleen, who met Tatiana through a Spina Bifida forum, directed her my way.
When I first started my blog I wrote a lot of posts talking about the fetal surgery and the MOMS study and mentioned that there were 3 hospitals that took part in it. When Liam died he was the first baby who died in the fetal surgery for Myelomeningocele. After talking to Tatiana I have since learned that another baby had died at the Philadelphia hospital and then her baby had now died at the Vanderbilt hospital. That is one baby now at each of the 3 hospitals. It's still hard for me to believe that not one baby died during the fetal surgery while the study was taking place, but since it has ended 3 have now died.
From talking to her it was just crazy how much we had in common. It was more than just the fetal surgery and babyloss, it was other things in our lives also. We picked out the same nursery set for our babies, we both have miniature schnauzers, and we had the exact same wedding dress. Crazy! We spoke for over 5 hours that evening and covered everything from the beginning of our pregnancies, the test results and ultrasound that confirmed our babies diagnosis, the surgery itself, to our fears for future pregnancies.
There is a part of me now that would love to find that 3rd mother who lost her baby just to see if her story is the same as ours. You see we both had said that just before surgery our babies were kicking like crazy, more than they had ever before. Maybe they could pick up on our nervousness or maybe as I have heard others say is that they believe it was there babies kicking to say they are in distress or saying goodbye. I don't know if I want to believe that but curious now if any of the other mothers who had the fetal surgery also experienced this amount of kicking and movement from there babies just before surgery. I wish that there was a way for us 3 to share our stories with the hospitals and maybe find some kind of link between us that could somehow prevent future mothers from losing there babies in the surgery also. I also just want to point out that even though I now know that there are 3 babies now that have died in this fetal surgery, I believe strongly in the surgery and know that it has changed(for the better) the lives of so many spina bifida babies. It just sucks for us few that it didn't work out.
So that was the best night/conversation I have had in awhile. Right after that though lead up to a horrible early Monday morning that still has not gotten better. Last week the left side of my neck had been throbbing but I thought it was just sore from softball. On Sunday morning at a softball tournament my left eye started hurting followed by a bad headache that ran from my forehead down the left side of my face. After my phone call had ended my neck was throbbing incredibly bad so I went and got an ice pack to put on it and then went to go get ready for bed. That is when I realized the left side of my face was no longer working. I freaked out, thought for sure I had a stroke or something but tried to remain calm and just put the ice on my neck and go to bed.
By 2am I was still awake and in severe pain. I thought maybe I had a bad ear infection so I googled it and read that if you have facial weakness you need to see someone immediately. So that's what I did, I went to the ER at 2:30 in the morning. I spoke to 2 nurses and told them about my neck pain and facial weakness, then when the dr. came in I explained it all again to her. She said nothing about my face issue but just that I had a bad sinus infection and ear infection. She gave me drugs and told me to get it looked at in a few days if its not better. I was freaking out. I didn't want to be on any drugs. There is a chance I could be pregnant, why now do I get an infection!
Off of 2 hours of sleep I went into work that morning in pain and with a half working face. I was pretty much just laughing at myself, seriously why does shit like this happen to me. I never get sick and now this. Some people at work mentioned that it looked like I had Bells' Palsy. I googled that and of course I freaked out more. Why the hell didn't the ER dr. address that? That is clearly what I have.
Made it through work and by last night I was so tired I went to bed early, the pain didn't even phase me anymore. I woke up today still in pain and now my eye was really getting dry because I can barely blink anymore. Which by the way I also can barely eat, drink, or brush my teeth since only half my face functions. It's fricken ridiculous. I made an appt with a dr. today to get it looked at again. This dr. informs me that the ER dr. was completely wrong. I do not have sinus infection or an ear infection and the meds she gave me are pointless. What I do have is Bell's Palsy. How the hell I got it, who knows. Dr. tells me I need to get on a whole new set of drugs to get the swelling on my face down to save the 7th cranial nerve on my face so its not permanent and to come back on Friday if they aren't helping and he will run more tests.
So I have to explain to him that there is this chance I could be pregnant and am super worried about being on any drugs at all. He explains that these drugs haven't been tested on pregnant women but that the benefit outweighs the risk because if I don't start treatment now the nerve could get damaged. WTF! I have the worst luck ever. I am trying to do everything I can to be healthy and don't want to be on any drugs and now this happens out of nowhere. I then called my Ob because I am so worried to the point I don't want to be pregnant now because I'm so scared of harming my baby. She said that they have seem women with this condition before and have been on the same drugs and have been fine, so I should try not to worry. I guess I have calmed down now, but seriously why. Why me and why now? Grrrr!
I won't show you a picture of myself with this. Although when I try to smile I just look ridiculous so I'll share this photo with you of someone else who has it. Keep in mind that this person is attempting to show his teeth and raise his eyebrows with Bell's palsy on his right side. Fricken ridiculous!