I don't think I ever said thank you to those of you that helped us financially with Miss Charlotte and for that I am sorry. It probably seems like we are the most ungrateful people in the world. Which if we're being honest here, I feel ungrateful. I didn't want money, I wanted my baby. I would have given everything back if it meant we could have her. Like a trade? I would have given my life, if I had been given the opportunity.
When we had Conor, it was such a slap in the face and we felt like we lost everything, especially our financial stability (because we did). Charlotte was such a difference. Our dear friends set up a GoFundMe for us and believe it or not, our out of pocket for our insurance was $7,000. (CRAZY right?) But, I think the GoFundMe made just over that. Miracle. We were able to pay off all of my bills because of the money donated. There is no way we would have been able to do that without it. We were still trying to recover from losing our last baby.
Also thank you to those of you that just sent us or handed us money. People we haven't talked to in years donated and that was the most beautiful miracle of them all. Thank you to all of our friends from all over the world who put our names in temples. Thank you. Even though I still hate what happened and I feel like it will take me years to be okay with it, it obviously was meant to happen the way it did because our names were in almost every temple throughout the world. From Paraguay to New Zealand and all over the U.S.
Even though I still feel that way, the money helped more than we could have imagined. So thank you dear friends, old and new, thank you. Because I'd like to think that's what I would do if the roles were reversed. To be honest, I'm not sure I would know what to do. I get the feeling you all feel that way or you forgot, which I know you didn't, so it must be that you don't know what to do, how to help.
The newly married us
Send me texts, letters, emails, messages and don't be afraid to invite me to things. It's okay to stop by my house and talk. Being invited places is nice and makes me feel not forgotten and also hard for me lately. I want to be invited to play groups and outings with friends but it's hard for me to sit and talk about a long night of painful breastfeeding or how many poopy diapers you changed yesterday. It's hard for me to sit and listen to you complain about how exhausted you are because I would give anything to complain with you. In fact, I did once and I loved it. I loved being apart of something with other women. I feel so out of place right now- it's weird. There aren't many people out there with one three year old. There are usually other babies involved and that's hard for me.
So please don't feel like I don't want to be around you or your beautiful babies when I make up a dumb excuse to not come. It's not that I'm avoiding you, but I guess I am. I don't even know what I'm doing. Please don't take offense if I never responded to you because the last thing I want to do is try to explain my roller coaster ride of emotions. Some days I can take it and others are horrible. Some things set me off and some things don't. I was completely fine in Target the other day (while avoiding the baby girl section) and saw a pink bow someone had left in the kitchen area. Right then and there I sobbed. Seriously, I don't even know how to explain it.
Please understand that I love you and I treasure our friendships but it's hard for me right now. Please understand that I understand how hard having a new baby is. How post postpartum depression is real and awful. I understand. I know that you are having a hard time too right now so it's not that I don't understand, it's just hard. Please understand that I am happy for you, truly. I am happy you have beautiful little girls, kids. I am. I would never wish this trial upon anyone. I just want mine to be able to play with yours that's all.
I love and truly appreciate those that keep texting and emailing me. It makes me feel like I'm not the only still thinking about her, still missing her. If you let me know you miss her too, it helps. If you let me know you saw a butterfly or a pretty flower and remembered her, it helps.
I miss her. Four months old is a fun age. They are just figuring out how to smile and giggle. I wish I could see her smile and hear her giggle. You know I never heard her voice? She never screamed, she was alive but couldn't breathe on her own. I wish I could have heard her. I wish I would have recorded her while she was alive. Even though she didn't do anything others might think was too impressive, she lived and that was impressive to me.
You have been good to us. We've been given money, gift card after gift card, letters, Mauna Loa chocolates from Hawaii, sweet children's books to help with Owen, teddy bears, gorgeous meaningful quilts, beautiful necklaces, plenty of flowers, hugs, kind and helpful emails, texts, Facebook messages.
I want you to know I've seen them all. I've cried when I've received them. I've loved them, every single one. I may not have responded to them but I saw them and I am grateful for them. I guess sometimes it's too hard for me to respond. Sometimes I wonder if you need me to say something strong because you keep calling me that. If only you could see me on a daily basis. We cry for her a lot.
Owen and I were looking at Halloween costumes a few days ago and he saw an adorable pink flamingo costume for a baby. He said we should get that for Charlotte. I told him we couldn't because Charlotte isn't here. He responded with "I know mom, when she comes back".
You make this heart wrenching, Earth shattering experience a little bit lighter and easier for me to attempt to handle.
It's one of those cliche sayings but we are truly at a loss for words because of the kindness shown to us. I know I basically just said "Invite me but don't expect me to come" and honestly that's just how it is right now.
Since I'm being honest here.. I'm still angry. It's been four months and I'm still angry. I wish the world could stop, stand still and remember my sweet girl. I wish the world understood how much pain I am in. I wish everyone would stop what they are doing, get off their computer, put down the laundry or dishes and hug their babies. Smother them in kisses. Smell their sweet baby breathe. Lay down on the floor with them and just be. Take the time. I regret so much just wanting Owen to grow up. I regret being so angry that "he wasn't letting me sleep". They are hard but oh so worth it. They are exhausting but oh so perfect. When you get up for the fourth time in the middle of the night, be grateful. Try to think happy thoughts, even though thoughts don't come in full sentences at that hour, try. Hug your sweet baby for me.
Speaking of angry, Chris and I went to get tested but before we could my genetic counselor put in the case to our insurance and they denied it. As if losing my baby to a genetic defect wasn't bad enough, now we can't even find out if our future babies will get it. They denied it. They said it wasn't medically necessary for future pregnancies.So to say I'm angry is an understatement.
Monday, October 12, 2015
Wednesday, September 30, 2015
Three months
Its been exactly three months and five days since we had last held our little girl in our arms.
Though you see me at the grocery store, church, the park and I look fine, I'm not. This little girl left me with the biggest, deepest scar. My entire soul longs for her. I think about her at the grocery store. I think about her at church and at the park. While I'm putting my makeup on after a morning shower, while I'm painting my chairs, while I'm making salsa, while I'm picking out shoes for Owen, while I'm washing dishes, while I'm weeding. There isn't a time I don't think about her.
I think about what people think when they see me and my one kid at the store and I can almost guarantee you they are wondering why I only have one.. I wish she was with me. I wish I looked like everyone else here, with armfuls of healthy babies.
I want her in the backseat of my car screaming her little lungs out. I want to put her in her stroller and have everyone comment on how cute she is. I want her.
It's been three months and five days since we last held her and I can't imagine the rest of my life without her. I can't imagine living happily. But, I have the the rest of my entire life left and I have no choice but to spend it without her. She feels like my soul mate, like I will be lost without her.
Though you see me at the grocery store, church, the park and I look fine, I'm not. This little girl left me with the biggest, deepest scar. My entire soul longs for her. I think about her at the grocery store. I think about her at church and at the park. While I'm putting my makeup on after a morning shower, while I'm painting my chairs, while I'm making salsa, while I'm picking out shoes for Owen, while I'm washing dishes, while I'm weeding. There isn't a time I don't think about her.
I think about what people think when they see me and my one kid at the store and I can almost guarantee you they are wondering why I only have one.. I wish she was with me. I wish I looked like everyone else here, with armfuls of healthy babies.
I want her in the backseat of my car screaming her little lungs out. I want to put her in her stroller and have everyone comment on how cute she is. I want her.
It's been three months and five days since we last held her and I can't imagine the rest of my life without her. I can't imagine living happily. But, I have the the rest of my entire life left and I have no choice but to spend it without her. She feels like my soul mate, like I will be lost without her.
We miss you baby.
Wednesday, August 19, 2015
Ryan and Lou are engaged!!
My brother in law Ryan has been dating the cutest girl and they FINALLY got engaged. Just kidding, it's been like, a few months, but you know, in Mormon time that's like eternity. We hiked to the Grotto in Payson canyon where they had their first date. Owen was not thrilled with this idea.
Dark heavy clouds and thunder started rolling in so we tried to hurry.
Owen playing fetch with a couple dogs. He loved it.
As he was on his way to the ground, she said yes. haha It was the sweetest thing. He got to his knee and asked and by that time she had said yes at least ten times.
Owen has had a little crush on Lou and he was not happy at all that they are now going to get married. haha He said "NOOOO" after she said yes. Poor guy.
We are so happy for them and we just absolutely love her. And in true Mormon fashion the date is October 10th, that's about seven weeks I believe. haha It's possible, we did it.
Sunday, August 2, 2015
Charlotte's due date 7-31-15
Today is our little miss' due date. July 31st, just like her brother (Owen). I had a feeling this day would not be my best but I didn't think I would be completely depressed either. Thanks to the hospital for helping with that.
I got a call a couple days ago from the hospital calling to confirm an appointment. I was wracking my brain trying to figure out what I was not remembering. When I asked what for she jokingly said "Well it's your due date tomorrow and we've gotta get that baby outta there".
Obviously, she didn't know. She didn't know how much that one sentence took me to such a deep, dark, sad place. I just told her that I already had her and she didn't live. That's all I could muster out. As if I needed another reminder that I won't ever have my baby in the way that most women/families do. She apologized and I hung up. I fell to the kitchen floor sobbing. Sobbing so loud it woke Owen up from his nap. He quietly opened his bedroom door, walked over to me, sat on my lap and patted my chest while I cried. I hadn't cried that hard since the night we lost her.
This wouldn't be as upsetting but this is the fifth time I've had to tell a someone at Inter-Mountain Health Care that my little girl did not live. The thing is I LOVE Inter-Mountain Health Care. I have never had a problem with them.. until now. Everyone I have dealt with (and that's a lot of people) have been absolutely amazing.
"So you just had a c-section six weeks ago? Hows the little one?"
"I'm just calling to see when I can come by and check on how Charlotte is doing. Babies that are born prematurely sometimes develop slower"
"I see you just had a baby, how's she doing?"
"Calling to register you to have that baby"
Etc.
Why is this not in my file somewhere? Why does it not have her time of death? Why are the doctors/nurses/anesthesiologists not informed? Everything is electronic now days, it should be easy right? Just in my file? Why?
I get it, someone didn't enter it in. Someone forgot. Someone didn't take the time. And the first few times it hurt but I let it roll of my shoulder. But now it's starting to hurt. Like really hurt my feelings. To be honest, I'm kinda surprised I have any anymore. After all I've been through you'd think they'd be all gone.
Owen and I went to her grave before all of this happened. I shed a few tears but did pretty okay, I thought. The grass is just now growing in. And that seemed to hurt my feelings too. Everything does now. It feels like a year, at least, since we buried her. But at the same time it feels like it happened last night. Time seems to disappear. The days are long but the weeks are short.
At church today, everyone in Relief Society was asked to introduce themselves for all of the new people in the ward. A friend next to me introduced herself with her two months old on her lap, I introduced myself and the girl next to me did, also with a baby on her lap. To which the teacher responded "And look! They all have beautiful little babies".
I know it was an accident but it hurt. I think I'm a little fragile right now. People don't seem to be aware of things they say. I'm not claiming to be perfect at it, but I sure try. I need to build up a tough skin for those types of comments that I'm going to get my whole life.
Finally some good news! We are moving and that is good for us. Chris got on with Salt Lake City Fire (again) and he starts the academy on August 31st and he/we couldn't be happier. But the commute was going to kill him so we decided to move to Draper. The "in-between" city, close enough for him to get to work and close enough for me to see friends and family in Utah county. It will be good. I told Chris right after he was offered the job again that we needed to move. I need out of this little apartment. This is the place I was supposed to bring my baby home too. This was where her clothes, blankets, crib was set up. I hate being here because it's a constant reminder of what I can't ever bring home.
A few weeks ago my mom found this picture of Chris and I that was in my local newspaper about our engagement. She said something like "Did you ever imagine that these two would experience what they've experienced in these short five years?"
I remember being a young, naive, little Young Woman with no life experience whatsoever and listening to lessons on Sundays about temple marriage, families, motherhood and life. Everything seemed like if you got married in the temple you'd have a good life. That it didn't necessarily mean it would be easy but it would be good. I've doubted that a lot lately.
I could have never anticipated what was coming to me.
I look back at that girl in the picture and the decisions she made to marry in the temple and make covenants she didn't understand. I look back at her I want to warn her. I want to warn her and tell her that that so called heart break over the boy in high school was absolutely nothing compared to what was coming. I would tell her that life gets even harder for her. That she needs desperately to stay close to what she believes in. I would tell her that she needs to have a firm standing in it. Because that is the one and only way she will survive. That she will experience trials that will shake her down to the core of who she is and even doubt what she believes. That she will want out. That she will cry and yell and ask why. A lot. That she will feel lost and alone. That she will have to reinvent herself. I would tell her that she will have a new perspective that she won't want. I want to tell her that she will experience pain and heart break like never before.. and that it will never fully go away. That there will be a hole in her heart forever. I want to warn her. I look at her I'm glad she had some time to experience happiness. I see pictures of her and I want to be her again. I want to be carefree, silly, outgoing, confident and happy because it will be a long time until she feels that way again. I want to tell her that I'm proud of her for getting married in the temple and making and living by those covenants she made.
Because now, those covenants mean a lot more. Now, she understands them. She appreciates them. They mean the world to her. They are the reason she is still breathing and living. They are her life.
So, no. I never saw this coming. Nothing can prepare you for it. But, at least now, I'm seeing the reason for going to Young Womens. For listening to those lessons. For going to church when I didn't want to. Because somewhere along the way,
I gained a strong testimony of this gospel. I gained a testimony of families. And that they can be and will be together forever. I am making it my life goal to be able to be with them again. They are mine and I will do whatever it takes to reach their level.
I got a call a couple days ago from the hospital calling to confirm an appointment. I was wracking my brain trying to figure out what I was not remembering. When I asked what for she jokingly said "Well it's your due date tomorrow and we've gotta get that baby outta there".
Obviously, she didn't know. She didn't know how much that one sentence took me to such a deep, dark, sad place. I just told her that I already had her and she didn't live. That's all I could muster out. As if I needed another reminder that I won't ever have my baby in the way that most women/families do. She apologized and I hung up. I fell to the kitchen floor sobbing. Sobbing so loud it woke Owen up from his nap. He quietly opened his bedroom door, walked over to me, sat on my lap and patted my chest while I cried. I hadn't cried that hard since the night we lost her.
This wouldn't be as upsetting but this is the fifth time I've had to tell a someone at Inter-Mountain Health Care that my little girl did not live. The thing is I LOVE Inter-Mountain Health Care. I have never had a problem with them.. until now. Everyone I have dealt with (and that's a lot of people) have been absolutely amazing.
"So you just had a c-section six weeks ago? Hows the little one?"
"I'm just calling to see when I can come by and check on how Charlotte is doing. Babies that are born prematurely sometimes develop slower"
"I see you just had a baby, how's she doing?"
"Calling to register you to have that baby"
Etc.
Why is this not in my file somewhere? Why does it not have her time of death? Why are the doctors/nurses/anesthesiologists not informed? Everything is electronic now days, it should be easy right? Just in my file? Why?
I get it, someone didn't enter it in. Someone forgot. Someone didn't take the time. And the first few times it hurt but I let it roll of my shoulder. But now it's starting to hurt. Like really hurt my feelings. To be honest, I'm kinda surprised I have any anymore. After all I've been through you'd think they'd be all gone.
Owen and I went to her grave before all of this happened. I shed a few tears but did pretty okay, I thought. The grass is just now growing in. And that seemed to hurt my feelings too. Everything does now. It feels like a year, at least, since we buried her. But at the same time it feels like it happened last night. Time seems to disappear. The days are long but the weeks are short.
At church today, everyone in Relief Society was asked to introduce themselves for all of the new people in the ward. A friend next to me introduced herself with her two months old on her lap, I introduced myself and the girl next to me did, also with a baby on her lap. To which the teacher responded "And look! They all have beautiful little babies".
I know it was an accident but it hurt. I think I'm a little fragile right now. People don't seem to be aware of things they say. I'm not claiming to be perfect at it, but I sure try. I need to build up a tough skin for those types of comments that I'm going to get my whole life.
Finally some good news! We are moving and that is good for us. Chris got on with Salt Lake City Fire (again) and he starts the academy on August 31st and he/we couldn't be happier. But the commute was going to kill him so we decided to move to Draper. The "in-between" city, close enough for him to get to work and close enough for me to see friends and family in Utah county. It will be good. I told Chris right after he was offered the job again that we needed to move. I need out of this little apartment. This is the place I was supposed to bring my baby home too. This was where her clothes, blankets, crib was set up. I hate being here because it's a constant reminder of what I can't ever bring home.
A few weeks ago my mom found this picture of Chris and I that was in my local newspaper about our engagement. She said something like "Did you ever imagine that these two would experience what they've experienced in these short five years?"
My answer- never in a million years.
I remember being a young, naive, little Young Woman with no life experience whatsoever and listening to lessons on Sundays about temple marriage, families, motherhood and life. Everything seemed like if you got married in the temple you'd have a good life. That it didn't necessarily mean it would be easy but it would be good. I've doubted that a lot lately.
I could have never anticipated what was coming to me.
I look back at that girl in the picture and the decisions she made to marry in the temple and make covenants she didn't understand. I look back at her I want to warn her. I want to warn her and tell her that that so called heart break over the boy in high school was absolutely nothing compared to what was coming. I would tell her that life gets even harder for her. That she needs desperately to stay close to what she believes in. I would tell her that she needs to have a firm standing in it. Because that is the one and only way she will survive. That she will experience trials that will shake her down to the core of who she is and even doubt what she believes. That she will want out. That she will cry and yell and ask why. A lot. That she will feel lost and alone. That she will have to reinvent herself. I would tell her that she will have a new perspective that she won't want. I want to tell her that she will experience pain and heart break like never before.. and that it will never fully go away. That there will be a hole in her heart forever. I want to warn her. I look at her I'm glad she had some time to experience happiness. I see pictures of her and I want to be her again. I want to be carefree, silly, outgoing, confident and happy because it will be a long time until she feels that way again. I want to tell her that I'm proud of her for getting married in the temple and making and living by those covenants she made.
Because now, those covenants mean a lot more. Now, she understands them. She appreciates them. They mean the world to her. They are the reason she is still breathing and living. They are her life.
So, no. I never saw this coming. Nothing can prepare you for it. But, at least now, I'm seeing the reason for going to Young Womens. For listening to those lessons. For going to church when I didn't want to. Because somewhere along the way,
Tuesday, July 21, 2015
Charlotte Pictures
Right now, I'm having a hard time putting my feelings into one box in order to label them. That's actually been going on for about.. well.. months now. Angry, distraught, hurt, mad, betrayed, toyed with, played, teased.. I think I could go on for days.
This little girl has changed my life. This experience has shaken every little ounce of faith I've ever had to the surface and I'm trying to hold on to the piece I have left. Somedays I feel okay, not great but okay. And others, I feel so betrayed, by God. I know, that's not what I'm supposed to say but that's how I feel. We prayed, faster, begged, and pleaded for her. We needed her. And then she was taken. What's worse is that we had to take her. We had to make the decision to let her go.
My sister in law worded it perfectly when she said "I imagine it's hard to be happy when so much of your heart is buried in the ground".
That's how I feel. Like, I only had broken pieces to begin my journey with her and then I buried most of them with her when she died.
We got the rough draft of her headstone today. As if that's something I wanted to do. With Conor, I wanted it done fast. I wanted it over with. And with her, I feel like once it's done, it's done. She is officially gone. A name and a date on granite and it's over. That's it.
That is why I am eternally grateful for these pictures.
Sunday, July 12, 2015
Pallister- Killians Mosaic Syndrome
I keep updating this one post so it's going to be a long one.
You probably saw on my Instagram or my sisters Facebook page that I was in the hospital yesterday, my birthday. Without getting too detailed (but you know I'm no good at that) the bleeding never really went away after I had Charlotte and while on vacation it started getting worse. Assuming it was my period I didn't do anything about it until we got home and it got a lot worse. Like, I started feeling lightheaded I was losing so much blood. I finally decided to get it checked, after hours of course, and went into the ER. Chris stayed home because Owen was sleeping. They did some blood work and needed to take a pregnancy test just in case. But due to the excessive amount of blood, a normal urine test would be tainted. So the nurse stuck a catheter in. Now, before you assume that's no big deal, let me just tell you, it's a big deal. When I had Owen I had one but I also had an epidural so it was actually quite pleasant. Getting one without an epidural is no joke. I cried.
Obviously the test came back negative, like I told them it would. So next was an ultrasound. The on-call doctor was a tired jerk. I get it, he didn't want to be there but did he think I did? He kept asking me why I came in right now of all the times to go in. Not a happy guy. After that was done and I left him with a huge bloody mess the doctor came in and said I had a Retained Product of Conception aka whoever did the c-section didn't quite clean it out all the way.
He said I would need a D&C if this medication he gave me wouldn't work. This medication is called Methergine. It makes your uterus contract so that it will get rid of whatever is in there bleeding. He told me it would feel like labor but it would hopefully solve the problem. At first I thought "Labor? Are you kidding me? No, thanks." Then I thought, well crap if this is going to stop it, what choice to I have? So he sent me home with the drug and told me to take it and have Chris go get my Hydrocodone prescription filled, because I was going to need it. That scared me but I did. The ER doc had called Dr. Anderson and he said to call him later that day if the bleeding hadn't stopped. I got home around three a.m. and had Chris driving all over Orem and Provo to find a Pharmacy that was open 24 hours. Just so you know, it's the Walgreens right by Utah Valley hospital.
Luckily, the Methergine didn't work at all. I had a couple small contractions but it didn't hurt.
Finally, some mercy.
We were both up until about five and slept until nine when Owen woke up. My sister (life saver) came and got him and we went right back to bed. We woke up around one and nothing had changed. I was still bleeding a ton so I decided to call and he said I needed a D&C. We went straight to the hospital, got all checked in and waited, surprised right? When the anesthesiologist (I didn't even have to spell check that!) came in he asked about our five week old baby. Apparently no one told him.. So I did. And then I told him it was my birthday. He asked me what would make it better and I told him I didn't want to see or remember the OR- last time was a nightmare. He said he could make that happen so when it was time for surgery, the nurse rolled me into the OR, I heard 80's rock and roll music, he told everyone it was my birthday and that I was getting the good stuff. I don't remember anything after that. Happy Birthday to me!
Thanks to Susan for the very flattering picture.
Okay-
So I started this post a few weeks ago and I'm finally back from a little vacation to finish it. Remember how I said the feelings of depression and anger were coming soon? Well, they've come.
My grieving cycle is rough- first acceptance then comes the anger and depression.
It was nice to escape our real life, our to-do list and mostly our bills, but unfortunately we couldn't leave our emotions.
Chris and I will have been married for a short five years next month and we decided while we were on vacation to just celebrate it there. We went to Universal Studios, Knotts Berry Farm, The Cheesecake Factory and the beach (several times). It was fun.. and hard. These are things that would normally make me ecstatic but I, (I should say we) still felt something was missing. Not just something, someone. My sweet, baby girl. Charlotte May.
This little girl of mine is amazing.
You probably saw on my Instagram or my sisters Facebook page that I was in the hospital yesterday, my birthday. Without getting too detailed (but you know I'm no good at that) the bleeding never really went away after I had Charlotte and while on vacation it started getting worse. Assuming it was my period I didn't do anything about it until we got home and it got a lot worse. Like, I started feeling lightheaded I was losing so much blood. I finally decided to get it checked, after hours of course, and went into the ER. Chris stayed home because Owen was sleeping. They did some blood work and needed to take a pregnancy test just in case. But due to the excessive amount of blood, a normal urine test would be tainted. So the nurse stuck a catheter in. Now, before you assume that's no big deal, let me just tell you, it's a big deal. When I had Owen I had one but I also had an epidural so it was actually quite pleasant. Getting one without an epidural is no joke. I cried.
Obviously the test came back negative, like I told them it would. So next was an ultrasound. The on-call doctor was a tired jerk. I get it, he didn't want to be there but did he think I did? He kept asking me why I came in right now of all the times to go in. Not a happy guy. After that was done and I left him with a huge bloody mess the doctor came in and said I had a Retained Product of Conception aka whoever did the c-section didn't quite clean it out all the way.
He said I would need a D&C if this medication he gave me wouldn't work. This medication is called Methergine. It makes your uterus contract so that it will get rid of whatever is in there bleeding. He told me it would feel like labor but it would hopefully solve the problem. At first I thought "Labor? Are you kidding me? No, thanks." Then I thought, well crap if this is going to stop it, what choice to I have? So he sent me home with the drug and told me to take it and have Chris go get my Hydrocodone prescription filled, because I was going to need it. That scared me but I did. The ER doc had called Dr. Anderson and he said to call him later that day if the bleeding hadn't stopped. I got home around three a.m. and had Chris driving all over Orem and Provo to find a Pharmacy that was open 24 hours. Just so you know, it's the Walgreens right by Utah Valley hospital.
Luckily, the Methergine didn't work at all. I had a couple small contractions but it didn't hurt.
Finally, some mercy.
We were both up until about five and slept until nine when Owen woke up. My sister (life saver) came and got him and we went right back to bed. We woke up around one and nothing had changed. I was still bleeding a ton so I decided to call and he said I needed a D&C. We went straight to the hospital, got all checked in and waited, surprised right? When the anesthesiologist (I didn't even have to spell check that!) came in he asked about our five week old baby. Apparently no one told him.. So I did. And then I told him it was my birthday. He asked me what would make it better and I told him I didn't want to see or remember the OR- last time was a nightmare. He said he could make that happen so when it was time for surgery, the nurse rolled me into the OR, I heard 80's rock and roll music, he told everyone it was my birthday and that I was getting the good stuff. I don't remember anything after that. Happy Birthday to me!
Thanks to Susan for the very flattering picture.
Okay-
So I started this post a few weeks ago and I'm finally back from a little vacation to finish it. Remember how I said the feelings of depression and anger were coming soon? Well, they've come.
My grieving cycle is rough- first acceptance then comes the anger and depression.
It was nice to escape our real life, our to-do list and mostly our bills, but unfortunately we couldn't leave our emotions.
Chris and I will have been married for a short five years next month and we decided while we were on vacation to just celebrate it there. We went to Universal Studios, Knotts Berry Farm, The Cheesecake Factory and the beach (several times). It was fun.. and hard. These are things that would normally make me ecstatic but I, (I should say we) still felt something was missing. Not just something, someone. My sweet, baby girl. Charlotte May.
This little girl of mine is amazing.
This time is so different, it's hard to explain. We miss her. More than miss, we long for, grieve for her. We miss Conor too, but we really miss Charlotte. I felt like I got to know her. She had a feisty little personality. She was so active the whole time that I was blessed to carry her and I feel like we got to know her so well. Every night we'd put Owen to bed and sit on the couch feeling her move while watching Netflix. Chris' facial expressions when he felt her were priceless. I dreamed of dealing with her personality in high school. She seemed so much like me and I was excited for the challenge. I thought for sure she would be dramatic. I would imagine her giving me all kinds of attitude when she didn't get what she wanted, in true princess fashion. In my head she was an overly dramatic little diva.Turns out she really was.
Dr. Fung called me the other day. She was the Pediatric Neonatologist who was taking care of Charlotte when she was born. She called to tell me she got the chromosome and blood test results back. Are you ready for this?
Little miss Charlotte had Pallister-Killians Mosaic Syndrome (PKS). It's a chromosome abnormality when a there is a duplicate of the chromosome 12 that appears for no known reason. She is so special, she had not only one or two extra copies but four extra copies of the 12th chromosome. So, what does that mean? Well, to be honest, we're still trying to figure that out. Dr. Fung went on to tell me just how extremely rare this syndrome is. Remember when we thought the Diaphragmatic Hernia was rare? 1 in 4,000?
Well, Pallister-Killians Syndrome has been diagnosed less than 200 times.. worldwide.
We're talking about 1 in billions here. This doesn't happen. She, personally, has never seen this and neither have her coworkers. She said this was in a section of her textbook in medical school that the professor said they would never see. "It's just something you read about, not something you actually see". She was amazed at this, at Charlotte. The fact that she made it that far with all odds against her, was amazing. She thanked me several times for letting the University do the autopsy. She said they have gathered so much research already and they aren't done.
Pallister-Killians Syndrome is so rare there isn't a lot of research on it. After answering several of my questions, Dr. Fung continued, she said that Chris or I could be a carrier of an extra 12 chromosome, meaning, one of us passed it on to her. Before, if ever, we decide to try again we need to go through genetic counseling and get genetic testing done. Apparently, very extensive testing. If it turns out one of us is a carrier, we need to decide if it's worth the risk to try again. Because there isn't any real detailed information about this syndrome, she said, they can't even tell us if it will happen again or if this was a one time thing. It could happen to every kid we have from here on out or never happen again. She also mentioned that this could have been the reason Conor died. Talk about terrifying.
As I'm going through this post, adding and editing, I had typed "It's still sinking in". Well, like I said, it's been a few weeks now and it has officially "sunk in".
If one of us is a carrier of this syndrome it means that we could be done. At 23 years old. We've already lost two, I will not do it again. Trying again is way too risky to us. Basically, this genetic testing is our future. It could add a very devastating future to our already devastating life. As of this very second that makes me sad. That makes me more than sad it makes me cry. Coming from the girl who never wanted kids, this very possible fact makes me cry. It hurts every part of my heart, of my soul. It's taken me three years to come to terms with and learn to love motherhood and now it's being taken. I know "for a short time" and I "will see them again" and blah, blah, blah. That doesn't help.
The characteristics of PKS include:
-hypotonia (low muscle tone/ "floppiness")
-abnormal facial features (i.e. high forehead, broad nasal bridge, wide space between eyes)
-broad neck
-short limbs
-cataracts
-sparse anterior scalp hair
-abnormal hands or feet
-permanent hearing/vision loss
-high, arched palate
-epilepsy
-congenital heart defects
-Gastroesophageal reflux disease
-hypo-pigmentation
-cognitive/developmental delays (retardation)
-Diaphragmatic Hernia
Now, obviously Charlotte had a lot going on. As it turns out she had most of the above (look at her hair again, see how far back it wasn't growing?) Some are hard to tell because she would have had to live for us to see if she had them (i.e. autism, epilepsy, vision loss). With everything she had, she just couldn't do it. And even if she lived, that wouldn't be a life.
This syndrome is deadly and then you add the hernia and it just wasn't survivable. On one of the websites for PKS it says "Prognosis is usually poor. Death is often due to Diaphragmatic Hernia". Just from reading what I can find online, which isn't much, she never had a chance. Talk about dramatic. This girl knew she wasn't going to stay so she decided to take on everything she possibly could while she was here. Like I said, amazing.
Hearing all of this from Dr. Fung really relieved a lot of worry and doubt. I had been wondering if we had done the right thing. What if I had gone in sooner and caught it earlier? What if we kept her on life support? Would she have lived? The answer is, an agonizing no.
For some reason only known to God, she isn't supposed to be here. As I'm typing this, I actually remember feeling the acceptance stage before the anger and grief stage with Conor. This is familiar.
So I've had the first part of this post waiting to be finished for weeks now. They say "Time heals all wounds" and I guess whoever wrote that never lost a baby.
Leaving the hospital with flowers in my arms instead of my baby was probably the most devastated I've ever been. I'd never literally felt my heart shattered until that day. It broke in pieces after we lost Conor and somehow I was able to put them loosely back together but losing Charlotte completely shattered the broken pieces I had left. Everyone was just looking at me as we walked by and I couldn't even fake a smile. I wanted to either cry or yell and tell them to stop looking at me.
I've been feeling so empty lately. My arms have been literally aching. I wish I was sleep deprived from waking up every hour of the night with her, instead I'm sleep deprived because I can't stop thinking about the night we lost her. I wish so badly I could wrap her in a blanket and snuggle her on my chest. That I could smell her sweet baby breathe. I wish I could gently kiss her soft cheeks just one more time. That she could hold on to my finger with her tiny delicate hands. That I could twirl her coarse brown hair through my fingers. That I could dress her up in the adorable pink outfits I bought her. I wish I could hear her cry. I wish she was in the bassinet next to my bed. I wish I could hold her and tell her everything was going to be okay. I wish I could do that completely traumatic night all over just to hold her and tell her I love her again.
I should be overwhelmed by her. I should be desperately trying to figure out her sleep pattern and complaining about how tired I am. I should be taking her to the store and letting everyone "ooh" and "awe" at her. I should be feeling completely alone while nursing her in the middle of the night. I should be changing her outfit 100 times a day and doing laundry every hour. I should have little pink bows to place on her beautiful brunette hair. I should be posting way too many pictures of her on Facebook. I should be watching her grow.
Instead I wake up every morning to a beautiful little boy and we play. I sit with him while he plays and I daydream. I dream about what I should be doing. I think about how much I want her. About how much she should be here. I think about what her and Owen would be like together. I think about getting after Owen for loving on her too much. I think about her safety next to him. I think about how overwhelmed I would be and how I'm not. I'm almost bored. Then reality slaps me and I realize this could be our life, our future. One sweet, sweet boy. One sweet, spoiled boy. And that's it. One.
And two in Heaven.
I have this new perspective now. This perspective I've never known before. When I see the mom in the grocery store with one kid strapped to her chest and four in the cart, I see how overwhelmed and exhausted she is. I think about how much she needs a break. I think about how tired and lonely she must feel. Even though she is completely surrounded, she is lonely. I think about how she doesn't have any time for herself, how she wishes sometimes that she only had one kid, or rather about how easy it was with just one kid. I think that she probably hasn't been on a date with just her husband in weeks if not months. And, I'm jealous. I'm envious, but also grateful that she doesn't have this perspective I have. Sometimes I wish she could though, just so she would be grateful for her five, beautiful, healthy kids. That she could see how blessed she really is. That she could remember, even on the hardest days, that she has kids. That even though they fight, they are alive. That even though they don't always listen, they love her. I've learned with this new perspective that you don't realize how blessed you are until it's gone. I've learned I have to count my blessings everyday or I will forget I have any. I'm not saying being a mom to five or three or even seven is easy. I can imagine it's actually extremely hard. I'm just saying I think we should all take a second and count our blessings. Because I may look at her and wish that I had five healthy kids when others may look at me wish they had an honest, loving husband or a good, supportive family.
I keep getting told that this is the hardest thing they've seen anyone go through and that they don't know how I'm surviving. We all have crap but I can't tell you that mine is the hardest. It's the hardest for me and for Chris. But maybe your hardest trial is having five healthy kids. A dear friend of mine said that "No one gets the gold medal or the silver or bronze. We all have gold worthy trials". I guess what I'm saying is I miss my baby. And that hurts. I cry every time I talk about her. I wish so badly that she could have stayed with us. But I have Chris and I have Owen. And that's how I'm surviving. They are the reasons I am still trying.
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