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!
I'm just going to try and calm you down a bit. During the 2ww, I DRINK. I go on waterslides. I go dancing and bike riding and hiking and am active as ever. Because at that point, the baby likely hasn't yet implanted, and if they are implanted, they aren't yet receiving much from you as a ball of cells. But since you haven't even received a PPT yet, don't stress! It's better in the 2ww than after the BFP comes in! And even then, I agree with your doctor about being calm since they've seen people with this before while pregnant. We have crappy luck as BLMs, but also, many women go everyday doing terrible things to their bodies and have happy, live babies in the end with no problems. While I have a hard time hearing this info myself, it's at least logical when I explain it to others. ;)
I'm thrilled you found someone who has such similarities. While it's tragic, it makes us all feel a bit more normal, huh? Any plans to meet?
Hope you're feeling better soon...
Ugh. I'm so glad you found someone to talk to, I know you've been looking a long time. Well, I'm not glad you found them, because this means a second and a third baby died, but you know what I mean. :(ReplyDelete
I'm hoping you start to feel better soon. One of my old managers had this, and it took a while, but it went away. You'd never know he'd had it. Fingers crossed this happens for you, too.
I know exactly what that is. A friend of mine had it years ago. One whole side of her face was completely paralized. It is caused somehow by the ear, she was a lifegaurd and the doc said it was caused by exessive water in her ear. It does go away, with meds she was back to normal in a few weeks. Hope you feel better- well wishes.ReplyDelete
So sorry to hear about the Bell's Palsy! What a bunch of bad luck. Thank goodness your coworker recognized your symptoms. At first, I was thinking our 5 hour phone call caused it...oops! Anyway, I hope you get well soon, and normal facial function resumes quickly.ReplyDelete
That's awesome about you two being able to connect with each other!ReplyDelete
Oh, wow..I'm sorry about the Bell's Palsy :( As far as the drugs go, I agree with B.Wilson: there are plenty of women that do far worse throughout their entire pregnancy and have healthy babies. I don't think taking a drug temporarily will harm your baby. I do hope that it helps make you better, though! Thinking of you!
So glad you had such a great connection! I have a BLM friend like that too, our stories are scary similar and we have tons of other things in common. It's such a weird connection, but such an important one! I'm just so happy you found each other!ReplyDelete
I had a slight case of BP before, it was such a pain, but it did go away. Also I agree with Brandy :)
I love that the blogging world connected two hurting mamas that needed each other. So glad you two connected.ReplyDelete
What a wonderful connection and phone call. I'm sure it was great to chat with someone who gets everything you have been through. I really hope you are able to contact with the third mother somehow.ReplyDelete
I hope you feel better soon.
First: That is fantastic that you found another BLM whom you can connect with on a more familiar level. There are lots of us out here, and we all have different stories. It is makes it so much less isolating when you find someone whose story is so close to yours. I am thrilled that the two of you were able to connect!
Second: I know how friggin' annoying it is when I go to the dentist and get frozen, and I can't control my face for a couple of hours. I can't imagine how awful it must be to not have the use of your face for weeks! I really really really feel for you. I am wishing you a super speedy recovery. And, what the HELL is with Doctors who don't know what the HELL they are talking about!!?? If you don't know, say so, or better yet, ASK SOMEONE ELSE!! Does that not happen in medicine? Ugh, I hate crap like that. Sorry you had to deal with a bafoon for a doctor, especially at 2 in the frigging morning!!
Okay, see how riled up I am on your behalf? And I am not living it!! lol
Try to get lots of rest, and take good care of yourself. I think you are in need of some serious pampering...