I couldn't sleep (again) Sunday night and at 1:30am I reached out via email to the Perinatal Loss Group Coordinator at the hospital where I delivered Addison. I wanted help in finding a counselor/therapist/shrink to talk to one-on-one. I got a nice email back with, along with other information, a list of recommended grief therapists. Four of the 5 therapists in my city were listed as "Christian-based counselors" or "Pastoral counselors." That thinned the herd quite a bit. So, yesterday I looked at the website of the last (wo)man standing and thought she looked good. I logged into my husband's company's benefits site and determined she is in-network in case I liked her and wanted to see her regularly; called the EAP referral line and got my 6-visit authorization emailed to me; called the therapist and left a detailed voicemail message for her. This is why it's good I'm unemployed right now, because just doing that was a mentally exhausting task to complete. I've lost 98% of my ability to concentrate on simple projects. Anyway, I was very proud that I got it done.
Yesterday I received a call from said therapist who opened with "So, did you find someone yet?" I responded with, "I was hoping I found you!" She chuckled, then started in immediately with how she thought I should see someone who could deal with this type of "big stuff" [having a dead baby]. She said maybe I should contact Compassionate Friends for a name of someone, and I mentioned that I got her name in the first place from the hospital's perinatal loss provider referral sheet. I spoke with her for a few minutes, trying to convince her that we should meet and then make that decision. She said, "You sound really good." I hate when people tell me that, but I continued on anyway, and told her that I know grief can't be handled in a vacuum--I'm sure my other unresolved issues (daddy issues, control issues, anger issues, general craziness) would come up as well, and I hoped she could help me with all parts of my life. I just didn't want this to be the straw that broke the camel's back. I want to be as mentally and emotionally healthy as possible for myself and my family (that's why I'm on Zoloft). At the end I threw in that by the way I don't believe in God, so a Christian-based counselor wouldn't be best for me. That's when she told me that she definitely wouldn't be a good fit for me because she knows what gives her peace and happiness is God, so if she couldn't recommend that to me and always felt she was holding back, she wouldn't be able to help me. I thanked her for her candor and hung up. And then I wanted to cry. It's kind of like when I went for my OB follow-up appointment and everything seemed very reasonable at the moment, but 10 seconds later I turn around and ask myself What The Fuck Was That?
Later in the day I called the Perinatal Loss Group Coordinator (who is also an RN) and told her that I needed some help in finding a counselor. I briefly started to tell her about my conversation with the therapist and she was totally horrified. And I felt so happy about that, and thanked her profusely. Even before losing my daughter, I've always joked about me "being crazy." But now I feel like I'm crazy X 100 and am constantly wondering if my thoughts and feelings are totally off-base. Sadly, it doesn't seem like a joke anymore. Anyway, she took that provider off the list and gave me some recommendations based on positive feedback from other dead baby moms she has worked with. And then she spent almost 2 hours on the phone with me, listening to my experience in the hospital, asking specific questions, and telling me how sorry she was. She made me feel "normal" in everything I was feeling, and it was great. I guess that's why I'm seeking therapy right now--because it's exhausting wondering if you're nuts all the time. I still need to start from scratch and find a therapist who I mesh with, who "gets" me--oh yeah--and one who is in-network for our insurance and on the EAP list. I'm tired just thinking of all the calls I need to make.
On a totally different note, I'm trying to obtain a copy of Addison's birth and death certificates. Seems easy enough. I schlepped down to the Vital Records Office yesterday, completed the forms, went back out to an ATM because they only accept cash, paid the $20 and eventually went home with certified copies of her birth and death certificates. Only to have my husband notice that evening that the date of death on her death certificate was wrong. It had birth and death both listed as 10/28/09, but her death was actually 11/4/09. So this morning I called to see what could be done to fix this, and they told me to go back to the office or mail in a letter outlining the changes. So, I went back down to the office, completed the amendment form, and was told that someone from the Amendment Office would call me later. And they did. To tell me that they need "proof" that the date of death was 11/4/09. When I turned in the amendment form today, I also included a copy of the original death certificate request form that was completed by the funeral home director and signed off on by the medical examiner for the hospice. And I asked, "Isn't the death certificate created based on the information in that form that you have in your hand right there?" Hmm...yes, it is, was the response. But apparently they need the original. And who in the hell knows where that is. In another government office in the city, I'm sure. I am guessing they will sort this all out eventually and I will receive a copy of her death certificate in the mail at a later date. More on why I need a copy of her death certificate at a later date.
I guess I just feel like all these complications add insult to the original injury of losing her. When we ordered Addison's urn, the company apprently went out of business between the time we ordered it, and the time the order was processed. We did finally get our money back, ordered the urn from another company and received it, but the whole thing was a total pain in the ass. I feel like getting anything done in regards to Addison requires jumping through these ridiculous hoops. It's just annoying. Or maybe I'm just bothered because the truly annoying thing is that she died.
Thursday, December 31, 2009
Sunday, December 27, 2009
2009, it's time for you to go now.
Frankly, I'm just ready for this bullsh1t year to be over with. I know I'm just in a bad mood, but 2009 has been nothing but trouble. Actually, 2008 definitely had it's bad moments, too, like when Chris lost his job. But the silver lining was landing his current job just 2 months later. I also had a 10-week miscarriage and D&C in September of 2008. That hurt, but in many ways I was pretty quickly accepting once it happened. I found the silver lining and told myself that I really wanted to lose 10 lbs and find a different job before being pregnant anyway. I was in no hurry to get pregnant again, although we weren't using any birth control methods. And then came 2009.
We moved into a new rental house and I started a new job the first week of March. I found out I was pregnant a few weeks later (conceived 2/14 or 2/15--incredibly, we had sex 2 days in a row, which never ever ever happens). I hadn't lost the 10 lbs, so I was starting the pregnancy with more junk in my trunk than I would have liked, but I was still 15 lbs lighter than when I got pregnant with Calvin, so I knew it would be okay.
I never got a chance to tell my new employer that I was pregnant because on April 20,
after just 7 weeks on the job, I was part of a massive downsizing. I was actually planning on telling my boss that week because I was 12 weeks pregnant, had another OB appointment, and the jig was pretty much going to be up. But the silver lining was my killer 15-week severance package (not bad for only being employed by them for 7 weeks!!). I was able to pull my then-almost-3-year-old out of daycare and stay home with him while getting paid full salary for a few months. We were able to pack some money away in our savings account until I started receiving unemployment benefits.
During a really horrible rainstorm in September, Chris drove his '99 Honda Civic through a puddle on his way home from work that had actually become more like a small lake due to flooding. His car was a total loss. But the silver lining was that he started driving my Galant and we used some of our savings, along with the insurance money, to pay cash for an '03 Honda Odyssey (a minivan) for me to drive. After all, in just several weeks I would need a car that could accommodate 2 carseats and a Sit N Stand stroller and all the other baby-and-preschooler-crap. Besides, what family in the burbs doesn't need a freakin' minivan, right?
Well, friends, the silver linings stopped there. Addison was born. And then she died. In fact, it was others who try/tried to find silver linings for us:
She is in heaven (bullsh1t!)
She was too good for this earth (bullsh1t!)
She is now my angel and will watch over me (bullsh1t!)
I should feel lucky to have given birth to one of God's angels (bullsh1t!)
Good thing you have Calvin to take your mind off things (seriously?)
It's just all so wrong in so many ways, and I'm sick and tired of putting on my fake thin smile when I hear these things that are meant to give me comfort but give me NONE.
I have to go on a quick tangent to bitch and moan about my 60-something-year-old neighbor who stops by occasionally with goodies or just to check in on us. That is very kind of her, and her heart is definitely in the right place, but that is where the niceness ends. She knows I don't believe in God but ALWAYS stares me straight in the eye and gives me some ridiculous statement about Addison being in heaven. My favorite is when she told me: "It's okay to tell Calvin that Addison is in heaven. Even if you don't believe it, that's where she is." Look, lady. I lived the hard-core Christian way for the first 25 years of my life. I was a prayer-saying, scripture-reading, youth group-teaching, tithe-paying, proselytizing fool, and I get it. I do. And I probably deserve this crap now, after years of being the holier-than-thou version of myself shoving religion and God and Mormon doctrine down the throats of innocent bystanders. My personal favorite quote of mine was: "God is like gravity. Whether you believe in it or not, it's there." I am realizing now how unnecessary it was for me to try to "help" people by telling them that God is there and cares about them and has a plan for them. I think I was preaching to myself--trying desperately to get myself to really buy it. In the end, I realized that there is likely not a God/god. And if there is, he really has no interest in our day-to-day dealings on Earth. I have been trying to figure out why it is so offensive to me when people confront me with the God Comfort Crap. And I think I've come up with an answer. When a Christian tells me that Addison is in heaven, it is just like a Muslim telling a Christian that their dearly deceased is with their 72 virgins. Muslims believe what they believe; Christians believe what they believe; I believe what I believe. Let's just honor the code and shut up about God and angels and plans for me. Because if this is God's plan, I certainly did not sign off on it. If you want to say something that is helpful, say you are sorry. Because I am, too. I am very sorry my baby died and my life is now so horribly sad.
I don't even know what I intended to post about tonight, but it has clearly degenerated into a terrible rant of angry venting. I am sad and angry and lost and there are no words to accurately describe my pain and emptiness right now. Yes, I have a great husband and a great kid, but it's apparently not enough. I still want my baby girl. I just fucking hope 2010 is better than 2009 was.
We moved into a new rental house and I started a new job the first week of March. I found out I was pregnant a few weeks later (conceived 2/14 or 2/15--incredibly, we had sex 2 days in a row, which never ever ever happens). I hadn't lost the 10 lbs, so I was starting the pregnancy with more junk in my trunk than I would have liked, but I was still 15 lbs lighter than when I got pregnant with Calvin, so I knew it would be okay.
I never got a chance to tell my new employer that I was pregnant because on April 20,
after just 7 weeks on the job, I was part of a massive downsizing. I was actually planning on telling my boss that week because I was 12 weeks pregnant, had another OB appointment, and the jig was pretty much going to be up. But the silver lining was my killer 15-week severance package (not bad for only being employed by them for 7 weeks!!). I was able to pull my then-almost-3-year-old out of daycare and stay home with him while getting paid full salary for a few months. We were able to pack some money away in our savings account until I started receiving unemployment benefits.
During a really horrible rainstorm in September, Chris drove his '99 Honda Civic through a puddle on his way home from work that had actually become more like a small lake due to flooding. His car was a total loss. But the silver lining was that he started driving my Galant and we used some of our savings, along with the insurance money, to pay cash for an '03 Honda Odyssey (a minivan) for me to drive. After all, in just several weeks I would need a car that could accommodate 2 carseats and a Sit N Stand stroller and all the other baby-and-preschooler-crap. Besides, what family in the burbs doesn't need a freakin' minivan, right?
Well, friends, the silver linings stopped there. Addison was born. And then she died. In fact, it was others who try/tried to find silver linings for us:
She is in heaven (bullsh1t!)
She was too good for this earth (bullsh1t!)
She is now my angel and will watch over me (bullsh1t!)
I should feel lucky to have given birth to one of God's angels (bullsh1t!)
Good thing you have Calvin to take your mind off things (seriously?)
It's just all so wrong in so many ways, and I'm sick and tired of putting on my fake thin smile when I hear these things that are meant to give me comfort but give me NONE.
I have to go on a quick tangent to bitch and moan about my 60-something-year-old neighbor who stops by occasionally with goodies or just to check in on us. That is very kind of her, and her heart is definitely in the right place, but that is where the niceness ends. She knows I don't believe in God but ALWAYS stares me straight in the eye and gives me some ridiculous statement about Addison being in heaven. My favorite is when she told me: "It's okay to tell Calvin that Addison is in heaven. Even if you don't believe it, that's where she is." Look, lady. I lived the hard-core Christian way for the first 25 years of my life. I was a prayer-saying, scripture-reading, youth group-teaching, tithe-paying, proselytizing fool, and I get it. I do. And I probably deserve this crap now, after years of being the holier-than-thou version of myself shoving religion and God and Mormon doctrine down the throats of innocent bystanders. My personal favorite quote of mine was: "God is like gravity. Whether you believe in it or not, it's there." I am realizing now how unnecessary it was for me to try to "help" people by telling them that God is there and cares about them and has a plan for them. I think I was preaching to myself--trying desperately to get myself to really buy it. In the end, I realized that there is likely not a God/god. And if there is, he really has no interest in our day-to-day dealings on Earth. I have been trying to figure out why it is so offensive to me when people confront me with the God Comfort Crap. And I think I've come up with an answer. When a Christian tells me that Addison is in heaven, it is just like a Muslim telling a Christian that their dearly deceased is with their 72 virgins. Muslims believe what they believe; Christians believe what they believe; I believe what I believe. Let's just honor the code and shut up about God and angels and plans for me. Because if this is God's plan, I certainly did not sign off on it. If you want to say something that is helpful, say you are sorry. Because I am, too. I am very sorry my baby died and my life is now so horribly sad.
I don't even know what I intended to post about tonight, but it has clearly degenerated into a terrible rant of angry venting. I am sad and angry and lost and there are no words to accurately describe my pain and emptiness right now. Yes, I have a great husband and a great kid, but it's apparently not enough. I still want my baby girl. I just fucking hope 2010 is better than 2009 was.
Thursday, December 24, 2009
Holding it together for the holidays
Some days I wake up feeling pretty good. I think to myself: Yeah, I am totally going to be okay. I am going to get over losing my daughter. I will kick this "grief" thing. Life will go on and I will be happy! Today is not one of those days. It's Christmas Eve, and I'm really quite prepared, save for a few errands that must be run and a few food items that must be prepared. I was out this morning getting bagels and it just hit me. That's what I get for having to sit for 10 minutes to wait for egg bagels to come out of the oven. I had time to sit and think. Time in my own brain. Time without my 3-year-old talkie-talkie-talkie around. Time without the internet or the TV or the radio. And that's when it hit. That's when it always hits--when there is nothing else to distract me from the terrible pain that is losing Addison. I'm just fucking sad. There is no other way to put it. I have so much in life that is good, but I can't stop feeling this terrible sadness and sense of loss. It's a hole in my heart (so cliche, but too damn true) that will never be filled. I love her, I miss her, I want her.
I think Christmas is especially hard because I really enjoy this holiday. I enjoy everything from the tree to the fudge to the lights to the silly socks and corny jewelry. It's so hard right now because of the dichotomy between the incredible Christmas joy I expect to feel and the intense heartache I do feel. In the middle is where I have to stay right now. Feeling nothing. Because if I start to feel anything, it's sadness. And I'm trying to just get through this and not be a crying, emotional mess. As sad as Chris' family is about Addison's death, I don't really think they're comfortable when I'm outwardly emotional. I mean--to be fair--who is? Tonight I will go to the Christmas Eve celebration and accompany the caroling on the piano and enjoy watching Calvin sing "I'm a Little Santa" for Santa. I will eat and drink and try not to get emotional. But I've realized that while trying to stifle my sadness, it stifles everything. Despite that, for today and tomorrow, I hope I can hold it together and just feel.....nothing.
I think Christmas is especially hard because I really enjoy this holiday. I enjoy everything from the tree to the fudge to the lights to the silly socks and corny jewelry. It's so hard right now because of the dichotomy between the incredible Christmas joy I expect to feel and the intense heartache I do feel. In the middle is where I have to stay right now. Feeling nothing. Because if I start to feel anything, it's sadness. And I'm trying to just get through this and not be a crying, emotional mess. As sad as Chris' family is about Addison's death, I don't really think they're comfortable when I'm outwardly emotional. I mean--to be fair--who is? Tonight I will go to the Christmas Eve celebration and accompany the caroling on the piano and enjoy watching Calvin sing "I'm a Little Santa" for Santa. I will eat and drink and try not to get emotional. But I've realized that while trying to stifle my sadness, it stifles everything. Despite that, for today and tomorrow, I hope I can hold it together and just feel.....nothing.
Wednesday, December 23, 2009
Back in the saddle
It's been exactly 8 weeks since Addison was born and exactly 7 weeks since she died. I've been fully "healed" from my c-section for about 6 weeks, so that's not been the issue. It just hasn't really felt appealing to me to have sex with my husband. But it IS Christmas Eve Eve and my husband is the best husband and dad and I love him SO much, so I figured it would be a pre-Christmas gift of sorts. He did hint at wanting to have sex about a week ago, but I brushed it off because I wasn't ready. And was was 100% fine with that. I wasn't ready tonight, either, but we did it because I felt like it was a hurdle I'd eventually have to get over. I don't mean to say that it was a chore, but it was emotionally difficult to have sex with my husband. That very act created our beautiful Addison. Our beautiful Addison who is dead. And that fact just made the act of being intimate with him hard tonight. Hopefully I feel more into it soon. Her death has cheated us out of so much more than just being with her and raising her. I feel sometimes like I'll never be the same.
Monday, December 21, 2009
Santa Bring My Baby Back (To Me)
I turned on the cable's Music for the Holidays channel today and heard a song by Elvis called Santa Bring My Baby Back (To Me). While I'm pretty sure Elvis wasn't thinking about his dead daughter when he sang this, it hit pretty close to home. Being one who doesn't believe that Addison is in heaven or anywhere else for that matter (unless you count the part of her body that wouldn't burn, which is in a baggie in a statue urn on our mantle), I know she can't come back and I'll never see her again. But if believing would make it real, I'd be the first to sign up to believe in god or santa, or anyone/anything else to make it happen. Sadly, it doesn't work that way. This is pretty much how I'm feeling about the holidays right now:
Santa Bring My Baby Back To Me
Sung by Elvis Presley
I don't need a lot of presents
To make my Christmas bright
I just need my baby's arms
Wound around me tight
Oh oh santa hear my plea
Santa bring my baby back to me
The Christmas tree is ready
The candles all aglow
But with my baby far away
What good is mistletoe
Oh oh Santa, hear my plea
Santa bring my baby back to me
Please make these reindeer hurry
Well their time is drawing near
It sure won't seem like Christmas
Until my baby's here
Fill my sock with candy
And a bright and shiny toy
You wanna make me happy and fill my heart with joy
Then Santa, hear my plea
Santa bring my baby back to me
Please make these reindeer hurry
Well their time is drawing near
It sure won't seem like Christmas
Until my baby's here
Fill my sock with candy
And a bright and shiny toy
You wanna make me happy and fill my heart with joy
Then Santa, hear my plea
Santa bring my baby back to me
Then Santa, hear my plea
Santa bring my baby back to me
Santa Bring My Baby Back To Me
Sung by Elvis Presley
I don't need a lot of presents
To make my Christmas bright
I just need my baby's arms
Wound around me tight
Oh oh santa hear my plea
Santa bring my baby back to me
The Christmas tree is ready
The candles all aglow
But with my baby far away
What good is mistletoe
Oh oh Santa, hear my plea
Santa bring my baby back to me
Please make these reindeer hurry
Well their time is drawing near
It sure won't seem like Christmas
Until my baby's here
Fill my sock with candy
And a bright and shiny toy
You wanna make me happy and fill my heart with joy
Then Santa, hear my plea
Santa bring my baby back to me
Please make these reindeer hurry
Well their time is drawing near
It sure won't seem like Christmas
Until my baby's here
Fill my sock with candy
And a bright and shiny toy
You wanna make me happy and fill my heart with joy
Then Santa, hear my plea
Santa bring my baby back to me
Then Santa, hear my plea
Santa bring my baby back to me
Tough Days
It's so strange how every day brings a different emotion. Okay, actually, each hour may bring a different emotion some days. On Friday night I started reading some research Chris found about stillborns. Although Addison wasn't technically a stillborn, she almost was. She was likely a cord accident baby who didn't quite finish the job. I was very upset that she was born alive, at first. I remember after getting her diagnosis and prognosis about 32 hours after her birth and telling Chris that I just wanted to leave the hospital and never look back. But looking back, I realize it wouldn't have been less painful if she was already dead when she was born. And if nothing else, we had the opportunity for Chris' family members to come by and "meet" her before she died. But anyway...I started reading this website and these papers, and little snippets of the whole Addison Experience started flooding my brain. And I started getting really really worried about having this happen again in the future if we have another baby. So I wrote a rambling email to my mom, who happens to be a CNM in California (deliveries in hospital setting only). And it went something like this:
Hi mom. Remember when we had that conversation a few weeks ago about what kind of post-stillborn-workup [your medical group] does for its patients and I said I didn't see the point in going back to my doc for additional "closure" because it wouldn't change Addison's outcome? Well, I think I've changed my mind.
In fact, more than ever, I want some answers. I've been reading some research (or lack thereof) on "cord injuries," and I'm getting really scared for any future pregnancies. I haven't finished reading everything yet, but there is a suggestion that cord injuries may be a recurring theme for certain moms. (For example, there are studies that show a big percentage of cords wrap around a fetus in the same direction, which makes cord accidents seem not as unpredictable as we imagine.) And the way my whole [prodromal] labor with Calvin went down, it seems pretty evident that there was some cord play with him, too. I'm getting really paranoid that I'll have to suffer another loss in the future.
My mind is a garbled mess, so I thought I would write down some of the questions I have about my ordeal in the hospital (and my pre- and post- OB care). I really wish I had some more definitive answers besides "shit happens." You know? I am curious of your input regarding any of these items. So, here goes...
Why did my OB NEVER talk to me about kick counts during my prenatal visits? Why was there never any information given to me on paper? The only thing she ever did was ask "is the baby moving well?" Research I've read suggests overactivity and/or cases of prolonged hiccups in the last weeks may be indicators of cord accidents in the making.
When I saw my doctor on 10/26 (the day before I went to the hospital), why did my OB only listen to the dopplar for a few seconds? Why did she never tell me what the baby's heart rate was during ANY of my prenatal visits? I never realized that heart rate (not just HEARING a heartbeat) was important until Addison's death.
When I went to the hospital for decreased fetal movement, why didn't they perform an ultrasound? Why did the on-call doctor ask me if I wanted a c-section instead of giving me information on my current situation and making a true recommendation one way or the other? When my husband arrived, why did she tell him that I "adamantly refused" a c-section? When I mentioned to a nurse on duty that I was stressed because I felt like the OB was asking what I wanted without giving me all the information, she told me, "Don't worry; It's the doctor's job to make that decision. If this was an emergency, you would be in surgery right now." What does my chart show regarding the doctor's recommendations and my statements that night? I would like to know.
How long is too long for a baby's heart rate to be in the 178-180 range? Why did they keep taking my temperature to make sure I didn't have a fever (I didn't have one)? And if a high fetal heart rate is a bad thing, why didn't they deliver the baby sooner?
When Addison was born, how in the world did she score an 8 APGAR after 10 minutes? Her scores were 2/4/8, if I recall correctly. Even if her color was good and she was breathing on her own, she was 100% floppy, and NEVER made any kind of cry.
I asked the delivering doctor during her rounds later if there was "a cord," and she said "no." But I want to know...what did the actual cord look like? Even if it wasn't wrapped around Addison's neck or body, was it longer than normal? Thicker than normal? Twistier than normal? I was told that the "placenta was fine and the cord gases were good." Is there any other kind of test that can be done to potentially determine why Addison sustained profound (or severe--depending on who you talk to or what report you read) hypoxic ischemic brain injury?
Addison was born at 8:56am on 10/28. When I saw her that night at 9:00pm (12 hours later) we were still working on the information we were given earlier in the day--that it was possible she was lacking surfactant. At what point during her stay in the NICU did they truly notice there was a BIG possibility of a BIG neurological problem? Don't they look into babies' eyes during the first 12 hours? Didn't they notice her eyes were fully dilated and never changed? Didn't they notice she couldn't swallow or suck or move or wince? Why did it take until the next morning when we went to the NICU--a full 24 hours later--for the neonatologist to let us know there was way more wrong with her than a little lung immaturity?
On 10/29 while Addison was undergoing testing, a male OB from my practice was making rounds. He asked what the problem with Addison was. When we told him the neonatologist told us it was a potential cord compression injury, he scoffed and said that "everything is blamed on cords." If he thinks a cord injury sounds like a wrong possibility, then what is his hypothesis? What other possible cause does he know of? What was it that caused our baby to be born with severe brain damage? And furthermore, why was there NO direct communication between my docs and Addison's docs?
When I saw my OB for my 4-week follow-up, why did she ask me if the neonatologist mentioned what could be done in future pregnancies to keep this from happening again? What was the cause of my baby's hypoxic ischemic brain injury listed in the chart? Why doesn't anyone know what the hell happened? If it's all such a mystery to the docs, why wasn't a more thorough work-up done of the cord and the placenta? If it wasn't a cord compression or a faulty placenta, what was it? And if it was a complete mystery, why wasn't an autopsy done? Why am I being asked what can be done to prevent this in the future? Aren't they supposed to be telling me what can be done so I don't have to go through this again?
P.S.
I found some incredibly interesting information online at:
http://preginst.com/
Rebecca
And probably because it was in my mind when I went to sleep the night before, I woke up Saturday morning feeling shitty and sad. I had to go to Dream Dinners at 10am, where you prepare meals for the following month. On my way over there, I started feeling really ill, like I could puke at any moment. That's how my sadness seems to be manifesting lately. I feel like I'm suffering morning sickness--like I could just open my mouth an puke all over the place. I was ill because I realized that I would be seeing a woman there who had twin girls a few months ago. They came at about 24 weeks, and she was due a few weeks after I was. Her sister owns the DD franchise, but was always there to help out, so I saw her every month. When I saw her in mid-October, right before I was due to have Addison, I saw pictures of the girls and got the update. I was relieved to hear they were both thriving and doing well. I had sent her sister an email after Addison died so she knew what had happened, but I hadn't seen her yet. I knew that seeing her would make it all too real that some people have babies that--despite rough odds--make it through safe and sound. I had great odds, yet was not that lucky. I saw her and we hugged, and I showed her pictures, and she gave her honest sympathy. And I held it together while putting my meals together. And then afterwards, since Chris was at home with Calvin, I ran a couple of errands before returning home. But when I hit the safety of home, I just fell to a heap on my bed and lost it. And then I slept for 4 hours. It was so crazy, but I guess I needed it. Calvin woke me up at 6pm for dinner, which Chris had put together (a Dream Dinner, of course). I was so grateful to Chris for spending the day with Calvin AND making dinner. I felt pretty tired and crappy the rest of the day, but somehow I woke up feeling okay on Sunday. It's just weird like that...how some days are incredibly horrible, and other days are just mildly sad. Today is another mildly sad day. I can think about it, talk about it, and I don't want to throw up all over myself.
Hi mom. Remember when we had that conversation a few weeks ago about what kind of post-stillborn-workup [your medical group] does for its patients and I said I didn't see the point in going back to my doc for additional "closure" because it wouldn't change Addison's outcome? Well, I think I've changed my mind.
In fact, more than ever, I want some answers. I've been reading some research (or lack thereof) on "cord injuries," and I'm getting really scared for any future pregnancies. I haven't finished reading everything yet, but there is a suggestion that cord injuries may be a recurring theme for certain moms. (For example, there are studies that show a big percentage of cords wrap around a fetus in the same direction, which makes cord accidents seem not as unpredictable as we imagine.) And the way my whole [prodromal] labor with Calvin went down, it seems pretty evident that there was some cord play with him, too. I'm getting really paranoid that I'll have to suffer another loss in the future.
My mind is a garbled mess, so I thought I would write down some of the questions I have about my ordeal in the hospital (and my pre- and post- OB care). I really wish I had some more definitive answers besides "shit happens." You know? I am curious of your input regarding any of these items. So, here goes...
Why did my OB NEVER talk to me about kick counts during my prenatal visits? Why was there never any information given to me on paper? The only thing she ever did was ask "is the baby moving well?" Research I've read suggests overactivity and/or cases of prolonged hiccups in the last weeks may be indicators of cord accidents in the making.
When I saw my doctor on 10/26 (the day before I went to the hospital), why did my OB only listen to the dopplar for a few seconds? Why did she never tell me what the baby's heart rate was during ANY of my prenatal visits? I never realized that heart rate (not just HEARING a heartbeat) was important until Addison's death.
When I went to the hospital for decreased fetal movement, why didn't they perform an ultrasound? Why did the on-call doctor ask me if I wanted a c-section instead of giving me information on my current situation and making a true recommendation one way or the other? When my husband arrived, why did she tell him that I "adamantly refused" a c-section? When I mentioned to a nurse on duty that I was stressed because I felt like the OB was asking what I wanted without giving me all the information, she told me, "Don't worry; It's the doctor's job to make that decision. If this was an emergency, you would be in surgery right now." What does my chart show regarding the doctor's recommendations and my statements that night? I would like to know.
How long is too long for a baby's heart rate to be in the 178-180 range? Why did they keep taking my temperature to make sure I didn't have a fever (I didn't have one)? And if a high fetal heart rate is a bad thing, why didn't they deliver the baby sooner?
When Addison was born, how in the world did she score an 8 APGAR after 10 minutes? Her scores were 2/4/8, if I recall correctly. Even if her color was good and she was breathing on her own, she was 100% floppy, and NEVER made any kind of cry.
I asked the delivering doctor during her rounds later if there was "a cord," and she said "no." But I want to know...what did the actual cord look like? Even if it wasn't wrapped around Addison's neck or body, was it longer than normal? Thicker than normal? Twistier than normal? I was told that the "placenta was fine and the cord gases were good." Is there any other kind of test that can be done to potentially determine why Addison sustained profound (or severe--depending on who you talk to or what report you read) hypoxic ischemic brain injury?
Addison was born at 8:56am on 10/28. When I saw her that night at 9:00pm (12 hours later) we were still working on the information we were given earlier in the day--that it was possible she was lacking surfactant. At what point during her stay in the NICU did they truly notice there was a BIG possibility of a BIG neurological problem? Don't they look into babies' eyes during the first 12 hours? Didn't they notice her eyes were fully dilated and never changed? Didn't they notice she couldn't swallow or suck or move or wince? Why did it take until the next morning when we went to the NICU--a full 24 hours later--for the neonatologist to let us know there was way more wrong with her than a little lung immaturity?
On 10/29 while Addison was undergoing testing, a male OB from my practice was making rounds. He asked what the problem with Addison was. When we told him the neonatologist told us it was a potential cord compression injury, he scoffed and said that "everything is blamed on cords." If he thinks a cord injury sounds like a wrong possibility, then what is his hypothesis? What other possible cause does he know of? What was it that caused our baby to be born with severe brain damage? And furthermore, why was there NO direct communication between my docs and Addison's docs?
When I saw my OB for my 4-week follow-up, why did she ask me if the neonatologist mentioned what could be done in future pregnancies to keep this from happening again? What was the cause of my baby's hypoxic ischemic brain injury listed in the chart? Why doesn't anyone know what the hell happened? If it's all such a mystery to the docs, why wasn't a more thorough work-up done of the cord and the placenta? If it wasn't a cord compression or a faulty placenta, what was it? And if it was a complete mystery, why wasn't an autopsy done? Why am I being asked what can be done to prevent this in the future? Aren't they supposed to be telling me what can be done so I don't have to go through this again?
P.S.
I found some incredibly interesting information online at:
http://preginst.com/
Rebecca
And probably because it was in my mind when I went to sleep the night before, I woke up Saturday morning feeling shitty and sad. I had to go to Dream Dinners at 10am, where you prepare meals for the following month. On my way over there, I started feeling really ill, like I could puke at any moment. That's how my sadness seems to be manifesting lately. I feel like I'm suffering morning sickness--like I could just open my mouth an puke all over the place. I was ill because I realized that I would be seeing a woman there who had twin girls a few months ago. They came at about 24 weeks, and she was due a few weeks after I was. Her sister owns the DD franchise, but was always there to help out, so I saw her every month. When I saw her in mid-October, right before I was due to have Addison, I saw pictures of the girls and got the update. I was relieved to hear they were both thriving and doing well. I had sent her sister an email after Addison died so she knew what had happened, but I hadn't seen her yet. I knew that seeing her would make it all too real that some people have babies that--despite rough odds--make it through safe and sound. I had great odds, yet was not that lucky. I saw her and we hugged, and I showed her pictures, and she gave her honest sympathy. And I held it together while putting my meals together. And then afterwards, since Chris was at home with Calvin, I ran a couple of errands before returning home. But when I hit the safety of home, I just fell to a heap on my bed and lost it. And then I slept for 4 hours. It was so crazy, but I guess I needed it. Calvin woke me up at 6pm for dinner, which Chris had put together (a Dream Dinner, of course). I was so grateful to Chris for spending the day with Calvin AND making dinner. I felt pretty tired and crappy the rest of the day, but somehow I woke up feeling okay on Sunday. It's just weird like that...how some days are incredibly horrible, and other days are just mildly sad. Today is another mildly sad day. I can think about it, talk about it, and I don't want to throw up all over myself.
Friday, December 18, 2009
A Christmas Poem
Baby’s First Christmas
Christmas is here and you should be too;
You’ve not been forgotten—there’s a stocking for you.
It hangs on the mantle with your name in red,
The same letters that in wood hung over your bed.
Just two months ago you were safe inside,
Now everything’s changed and all joy seems to hide.
To have a girl seemed so scary—I didn’t know how I’d deal;
But after losing you, I don’t know how I’ll heal.
My hopes and dreams for your future died with you,
But you’ll always be my daughter—that much is true.
I loved you so deeply even before you were born;
Our family’s tight-knitted fabric has now been torn.
Although I did get to meet you, you’ll never know me,
Never feel my embrace, never bounce on my knee.
Your brother will never get to teach you “cool moves;”
Your daddy will never get to hear your sweet coos.
I hope you knew you were loved and always will be;
Your life, although short, meant so much to me.
So we hung your stocking because you belong here with us;
Oh, sweet Addison, this should have been your first Christmas.
-Your Mommy
12/18/09
Christmas is here and you should be too;
You’ve not been forgotten—there’s a stocking for you.
It hangs on the mantle with your name in red,
The same letters that in wood hung over your bed.
Just two months ago you were safe inside,
Now everything’s changed and all joy seems to hide.
To have a girl seemed so scary—I didn’t know how I’d deal;
But after losing you, I don’t know how I’ll heal.
My hopes and dreams for your future died with you,
But you’ll always be my daughter—that much is true.
I loved you so deeply even before you were born;
Our family’s tight-knitted fabric has now been torn.
Although I did get to meet you, you’ll never know me,
Never feel my embrace, never bounce on my knee.
Your brother will never get to teach you “cool moves;”
Your daddy will never get to hear your sweet coos.
I hope you knew you were loved and always will be;
Your life, although short, meant so much to me.
So we hung your stocking because you belong here with us;
Oh, sweet Addison, this should have been your first Christmas.
-Your Mommy
12/18/09
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