Monday, December 21, 2009

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?

I found some incredibly interesting information online at:


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 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.

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