I had another great talk with a different babyloss mom last night. This momma, Kristin, found my blog through family on my husbands side from a Facebook post I wrote many months back. Despite the fact that I look ridiculous and my neck has been aching these 2 mommas have made me so happy this week. Rarely have I spoke to anyone on the phone about baby loss, outside of close friends, and now twice with in 2 days. These conversations have been so healing and comforting for me, and its so crazy how well we got along. Both calls I felt like we talked like we have known each other forever, or maybe its just because we really truly understand each other and have this HUGE thing in common. I just hope that these conversations were as meaningful to them as they have been to me.
And Brandi to answer your question about me and Tatiana having any plans to meet? Well no plans yet, but one day I think it would be great to meet her and Kristin also. Maybe one day.
Then today when I went into work the Dr. that I work for asked me how I was doing. I informed him about the ER Dr. being wrong and that it was Bell's Palsy instead. He made me feel so good with what he asked next. He asked me about what meds they had me taking because he was concerned on whether I was pregnant or there was a chance I could be pregnant, and if these drugs were okay for me to be on if I was. It might seem silly I guess that him asking this to me made me happy, but it really made me feel like he cared about me and was concerned for me if I was pregnant.
Then there is what happened after work. Well first I better recap yesterday first. My parents called yesterday and asked how I was doing since we haven't talked in awhile. If you recall at all, I haven't talked about it much, but my family hasn't been too supportive since Liam passed. When I say not supportive I mean that they have never asked about him and when they have asked how I'm doing they act annoyed when I would say I am sad. Sad because my son died and they don't seem to care! So now usually when they call I lie and say I'm fine, unless of course I am fine then there is no need to pretend.
I had told my parents about my face issue and that I was going into see another Dr. that afternoon about it. Chatted about a few other things and then said goodbye. Well while I was talking to Kristin last night on the phone I seen both my parents and sister were trying to call. I didn't end my call with Kristin because that conversation meant a lot to me. When our call did end about a half hour later I called my sister back and she asks why I won't tell my family what is going on with me. I was confused, what, I did tell them earlier today on the phone. Okay, so I call my parents back and get no answer and sit there frustrated on why the hell they seem to be so concerned about my stupid Bells Palsy. I mean I am happy that they are acting like they care about my face so much, but what I wish they cared about is the fact that my heart is still broken in pieces from losing my son and they don't seem to give a damn about that. I must sound fricken bitter about this, which I am, but my face most likely will get 100% better, but my heart, that will always ache for my son, and that is where I need some support.
I don't write about my family much because I know that some of them actually read my blog, but really I am starting not to care anymore who I might offend. This is a place for me to express my feelings, I should be able to share them all whether good or bad, and if someone reads something they don't like, then they should just stop reading.
As far as my face goes it doesn't look any better yet, but I did just start taking my drugs yesterday and it takes time for it to get better. Now I know I probably sound just crazy because I get so paranoid about everything I do these days. I just really want to ensure my next baby is healthy and if there is any problem, hope to god not, I can't look back and say, "maybe it was those meds I took." It's hard to not want to blame yourself. Not to mention I take so many different pills these days its ridiculous. I take my prenatal, fish oil, and an extra 3g of folic acid daily as is. Then on day 3 of my period I get to take the Clomid for 5 days, give myself an injection to get me to ovulate, take progesterone if needed after that, and if I don't get my period and not pregnant sometimes my Dr. has me go back on Provera to force it on my body. So when you throw in a couple more meds, that I have to take multiple times a day for the next week to cure my Bell's Palsy face, it is just ridiculous.
Wednesday, August 31, 2011
Tuesday, August 30, 2011
Best Conversation Ever Followed By A Bad Couple Of Days
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!
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!
Friday, August 26, 2011
Could It Be?
Why yes it is. Someone else out there has experienced the exact same horseshit luck as me. I never thought I would ever see the day, and as much as I would've liked to have had someone to speak to about our similar losses right after my son died, it was in a way nice knowing that death in fetal surgery was not a common thing. If anyone remembers many months back I wrote about how I was searching like crazy to find someone who had a story like mine and kept coming up empty handed? Well, that person has found me. As much as I want to say I am happy about this, because as much as I feel I am finally not alone in this Spina Bifida fetal surgery babyloss world anymore, I hate knowing that someone else out there is struggling to get through life after losing there baby in fetal surgery also.
Now the problem is that this person left me a comment on Liam's story and asked if I ever wanted to chat or email back. I would love to chat more with you about the surgery and our losses, but you did not leave me an email address to reply to. If you are reading this please message me again with your email address. I would really like to talk with you and so happy that you found my blog.
Other thoughts at the moment:
-Derecks brother posted a couple of pics on Facebook yesterday from when they were very young. I'd say Dereck was maybe 2, not sure. Anyway, Liam looks so much like him its crazy.
Which by the way thank you everyone for all sweet comments about Liam from the last post.
-Facebook friend I mentioned from the other day still has not had her baby. She has got to be like a week overdue by now. It's killing me, just have your baby already. I read comments on her page that say she is getting induced today so maybe she will get to meet her little lady later today.
-I hate knowing that I should be celebrating with my friends in Michigan right now. Two great friends getting married and I am not there. I feel like such a shitty friend. These friends have been there through so much with us and Liam in the past year and I am not there for there special day. Geez, I am a horrible friend. Seriously though, 31 days this month and my ovulation has to fall on there wedding. I have such crappy luck. Well actually I guess I can't say too crappy of luck because Dereck was able to get this week off so he would be here for my ovulation and I guess I should be happy I am even ovulating this month so we can actually try. I still want to cry about it though. I almost considered just bailing on the ttc this month just because I know that if I don't end up pregnant this month I will be so angry with my body because not only did I not get pregnant I missed two of my best friends wedding. If I could have ovulated just one or two days sooner everything would have worked out just fine, but no, not my body. It has to wait until the last minute right before Dereck has to get on a plane for work and I should be well on a plane also, to a wedding.
-There is a good chance I might be going to Reno now. A few members of Derecks family are going and since I can't make the wedding and love these relatives, I might as well go meet up with them. I also could really use some sun and relaxation right now. Who knows, maybe lounging at the hotel pool, which by the way has a sand beach, so excited, will relax me enough that when I come home and take my pregnancy test I'll be able to handle the result better, no matter what it is. It better be positive though.
-Too add to the fact that I might be going to Reno, and there's a pool with a beach, I will be wearing a swimsuit. Went shopping yesterday and left just disgusted with my body. For the most part I have my stomach back, other than of course for that little pooch I have now along with a c-section scar across my lower abdomen. I don't want to sound like I am hating that bad on the scar and pooch because after all I electively chose to have this surgery and c-sections for life and it is a huge part of my son's story and short life, but also such a sad painful part.
Also though, I am just hating on my butt and legs right now. I lost the weight I had gained when pregnant and don't really need to lose more but just want to get a little more toned. The best thing to tone my legs and butt though are running and that is the one thing my dr. does not want me to do very much of. You see when I was first trying to get pregnant with Liam my dr. blamed a lot of my ovulation and period issues on having too low of a BMI, which made me pretty upset because I knew many people that were athletes that had gotten pregnant no problem, and I am not on any level an athlete. I do however try to keep myself in pretty good shape, but now I have just been too afraid to do too much physical activity for fear my dr. was right. I was actually worried that the backpacking and extra hiking last month was the cause of my lack of ovulation, but my dr. keeps telling me that stuff is fine. So who knows, but I feel like whining about it anyway and its my blog, so I can.
Afterall I should be in great shape from all the jogging I should be doing while I push Liam in his Chariot, right?
-And now the start of the 2 week wait begins.
Okay update: She had her baby and now I am in tears. How can you be so happy for someone yet so sad, mad, angry, and depressed all at the exact same time. It just isn't fair!
Now the problem is that this person left me a comment on Liam's story and asked if I ever wanted to chat or email back. I would love to chat more with you about the surgery and our losses, but you did not leave me an email address to reply to. If you are reading this please message me again with your email address. I would really like to talk with you and so happy that you found my blog.
Other thoughts at the moment:
-Derecks brother posted a couple of pics on Facebook yesterday from when they were very young. I'd say Dereck was maybe 2, not sure. Anyway, Liam looks so much like him its crazy.
Which by the way thank you everyone for all sweet comments about Liam from the last post.
-Facebook friend I mentioned from the other day still has not had her baby. She has got to be like a week overdue by now. It's killing me, just have your baby already. I read comments on her page that say she is getting induced today so maybe she will get to meet her little lady later today.
-I hate knowing that I should be celebrating with my friends in Michigan right now. Two great friends getting married and I am not there. I feel like such a shitty friend. These friends have been there through so much with us and Liam in the past year and I am not there for there special day. Geez, I am a horrible friend. Seriously though, 31 days this month and my ovulation has to fall on there wedding. I have such crappy luck. Well actually I guess I can't say too crappy of luck because Dereck was able to get this week off so he would be here for my ovulation and I guess I should be happy I am even ovulating this month so we can actually try. I still want to cry about it though. I almost considered just bailing on the ttc this month just because I know that if I don't end up pregnant this month I will be so angry with my body because not only did I not get pregnant I missed two of my best friends wedding. If I could have ovulated just one or two days sooner everything would have worked out just fine, but no, not my body. It has to wait until the last minute right before Dereck has to get on a plane for work and I should be well on a plane also, to a wedding.
 |
| beach at the hotel, looks fabulous, don't it? |
-Too add to the fact that I might be going to Reno, and there's a pool with a beach, I will be wearing a swimsuit. Went shopping yesterday and left just disgusted with my body. For the most part I have my stomach back, other than of course for that little pooch I have now along with a c-section scar across my lower abdomen. I don't want to sound like I am hating that bad on the scar and pooch because after all I electively chose to have this surgery and c-sections for life and it is a huge part of my son's story and short life, but also such a sad painful part.
Also though, I am just hating on my butt and legs right now. I lost the weight I had gained when pregnant and don't really need to lose more but just want to get a little more toned. The best thing to tone my legs and butt though are running and that is the one thing my dr. does not want me to do very much of. You see when I was first trying to get pregnant with Liam my dr. blamed a lot of my ovulation and period issues on having too low of a BMI, which made me pretty upset because I knew many people that were athletes that had gotten pregnant no problem, and I am not on any level an athlete. I do however try to keep myself in pretty good shape, but now I have just been too afraid to do too much physical activity for fear my dr. was right. I was actually worried that the backpacking and extra hiking last month was the cause of my lack of ovulation, but my dr. keeps telling me that stuff is fine. So who knows, but I feel like whining about it anyway and its my blog, so I can.
Afterall I should be in great shape from all the jogging I should be doing while I push Liam in his Chariot, right?
-And now the start of the 2 week wait begins.
Okay update: She had her baby and now I am in tears. How can you be so happy for someone yet so sad, mad, angry, and depressed all at the exact same time. It just isn't fair!
Thursday, August 25, 2011
A Facebook Message From A Stranger
Yesterday I received this Facebook message.
The names have been changed also.
Hi Becky, My name is Sally-we're mutual friends with Alice. As I was on her page today I noticed your page as well and couldn't take my eyes off the picture of this beautiful little baby girl. Is she yours? I know this may seem really random, but I was curious about the story behind that precious photo and wanted to ask. There's a special place in my heart for little babies, and she seemed she may have been born early? Such an incredible picture-worth 1000 words.
I sent her this message back:
Sally:
The names have been changed also.
 |
| Facebook picture |
I sent her this message back:
Sally, thank you for saying that you think my baby is beautiful. She is actually a he though. His name is Liam and he was in fact born too early at 26 weeks on January 3rd. Unfortunately though my precious little boy passed away. He died in surgery that day.
Thank you for the sweet comment though.
Thank you for the sweet comment though.
Sally:
Oh I am so sorry!!! I wondered the sex, but didn't think about it as I began writing. Sorry. My sister delivered early and her baby died as well. So when I saw your picture it brought me right back to the day I got to hold her little one-he too was a boy. I am so sorry for your heartbreaking loss, I hope by my asking-it didn't bring back the heartache too badly. What a special mother you are-not many people share your experience and it is truely a special gift from God-your little Liam.
Me:
It was fine that you asked. I think about him all the time anyway and like I said I loved hearing that you think he is beautiful. I couldn't agree more.
Sorry to also hear about your sister. I hope she is doing okay. grieving over the loss of your child isn't easy.
Sally:
indeed, it is not easy-I can't pretend to understand that grief. But I can empathize through others explaining it to me. (the hat looks purple on my computer that's why I thought a little lady!) sorry again. I pray for blessings on more little miracles in your future.
Thank you, thank you, thank you! I can't say that enough in regards to Sally's message. For a complete stranger to randomly see Liam's picture next to a comment left on facebook and to think he is that beautiful that she needs to send me a message telling me how gorgeous he is- I just can't wipe the smile off my face.
It was fine that you asked. I think about him all the time anyway and like I said I loved hearing that you think he is beautiful. I couldn't agree more.
Sorry to also hear about your sister. I hope she is doing okay. grieving over the loss of your child isn't easy.
Sally:
indeed, it is not easy-I can't pretend to understand that grief. But I can empathize through others explaining it to me. (the hat looks purple on my computer that's why I thought a little lady!) sorry again. I pray for blessings on more little miracles in your future.
Thank you, thank you, thank you! I can't say that enough in regards to Sally's message. For a complete stranger to randomly see Liam's picture next to a comment left on facebook and to think he is that beautiful that she needs to send me a message telling me how gorgeous he is- I just can't wipe the smile off my face.
Beautiful little baby, Precious photo, Such an incredible picture-worth 1000 words, Special mother
The chances of me getting comments like that anymore about my little boy are far and few, but when I do it's like music to my ears! I know he is beautiful, precious, gorgeous beyond 1000 words, but to get told that. My heart is beating so fast, but in a good way. I am not angry because of someones thoughtless comment for a change, but overjoyed. I can't say it enough how grateful I am to have gotten that message from a complete stranger at that. Love it, love it, love!
Wednesday, August 24, 2011
Seriously???
This the first email I see in my inbox today.
Clomid linked to birth defects in children
Have you or a loved one used Clomid? You may be entitled to substantial compensation! Contact the Clomid Lawsuit Center.
Oh WTF! I did not need to see that! Great, as if I'm not already in a panic state praying to God my next baby won't have a birth defect. Stupid junk email how did you end up in my inbox?
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