Friday, May 29, 2009

Postpartum visit and test results.

Well, today was my postpartum appt. I attempted to record it so I wouldn't forget anything but, just my luck, the batteries died shortly after I started taping. So I may miss something but this was the gist:

First of all the test results were in. There wasn't alot they could tell during the autopsy due to extensive maceration (breakdown of tissues due to extended exposure to moisture), autolysis (essentially self-digestion), and liquification of tissues (I know its rather graphic, sorry). The genetic testing came back normal. However, chromosomal testing could not be done due to "the sample" being compromised and failing to produce metaphase cells (a stage of mitosis- contains condensed chromosomes containing genetic information) for analysis. I knew this was possible since I read something that said there was a window after death that the cells need to be collected and grown, and we missed the window. Riley's placenta and membranes were inflamed but the doctor says its most likely due to the window of time between death and delivery. The only result I can't figure out, and didn't get to ask the doctor about is the result of my parvovirus b19 test which had a rather high level (0.0-0.8 is the norm, my result was 5.7)... but I don't have ANY symptoms and I would think in the last month SOMETHING would have shown.

Now that I have the test results out of the way, I asked alot of questions. He said that he can't say 100% that Riley had anencephaly given his gestational age but that the signs fit so he is going to treat me as if he did. I mentioned the appearance on most anencephaly babies and how they differed from Riley's and he said that the difference is most likely due to gestational age as well. I asked what the extent of Riley's Anen was. He said it was pretty extensive and that all he had was a brain stem. I mentioned that I had found online that anencephaly can be caused by excess androgens and that I was concerned that it was caused by me having PCOS, but he said that women with PCOS very rarely, if ever, have androgens high enough to cause something like this and that I had nothing to worry about. I asked what the minimum time we needed to wait to try again and he said that he generally recommends that couples wait until after the first postpartum period and I said well "that could be a year or two for me! *laughs*" so if I haven't had a postpartum period withing the next 8 weeks I am supposed to come in to get something to induce AF. I asked how my next pregnancy would differ from Riley's, care wise and he said that it wouldn't differ all that much. He said other than taking the higher 4mg dose of folic acid that they would probably do an ultrasound at 16 weeks next time instead of waiting for the 20 week one and then doing the 20 week as well. He said that between the 16 week and 20 week ultrasound, if there is a problem that it should be recognizable by then and if nothing is seen by the 20 week ultrasound that he believes we would be in the clear as far as neural tube defects. I can already say that is going to be the longest 20 weeks of my life! I also asked about the testing I had read about online called 'alpha-fetoprotien' (AFP) and he said that they take it a step further and order a similar blood test that measures not only AFP but also 4 other markers that test for chomosomal abnormaities like downs syndrome. I said I deffinitely wanted to get that test next time, if only to give me a heads-up. This time I was blindsided and I don't want to be again. I asked if, given Riley's condition, the risk of an amniocentesis would be warranted and he said no. He did my exam and said that everything was exactly where and how it should be then we continued talking. I said that I understood that many Anen babies died inutero but that I was wondering why his heart was beating so strong one week and literally the next he was gone. He said that there are varying degrees of Anen and the extensive nature of Riley's Anen lead him to believe that there was most likely a heart problem as well and that may have been "the final nail" as they say. However, the autopsy report says "examination of the heart is not possible due to extensive maceration" so I guess we will never know for sure.

Again, I may have asked more questions but I can't remember anymore. BUT there is some humor in all this. If you remember from my post about Riley's delivery I mentioned that the on-call doc (my docs partner) who delivered Riley kept "praising", for lack of a better word, how well I was pushing and my focus and whatnot and he had said he was going to tell my doctor how well I did. Honestly, I didn't expect him to. I mean they have soooo many patients and DH and I were just one couple. I honestly didn't expect him to remember. However, after my exam my doctor backs his seat up and says "by the way, Dr. B talked to me and he really had quite a bit to say on how well you did on pushing, and that he believes you would make an excellent candidate to VBAC again in the future. So, we will definitely have to talk about that again in the future." I couldn't help but blush and giggle. Partially because its nice to be told I CAN do it when my previous doc only ever told me I couldn't so its kinda like a "I told you so" moment, partially because I tend to get embarrassed when people 'praise', again for a lack of better word, me, but more so because I was kinda surprised at the way he really was gung-ho about making sure my doctor knew how well I did.

Monday, May 25, 2009

So depressed today, my body killed my baby...

In my ongoing quest to learn more about Anen I was doing a general search on conditions that affect brain development in unborn babies and stumbled across this:

"Environmental hazards

Exposure to household chemicals or other toxins in the environment may also contribute to impairment of the central nervous system of a fetus. In 1994 and 1995, a greater than expected number of infants along the Rio Grande in Texas and Mexico were born with anencephaly. While the exact cause was not found, it is suspected that pollution in the environment was involved. It is probably wise for pregnant women to avoid pesticides (such as weed killers) and insecticides. Some household cleaning chemicals contain substances that are teratogens and these should be avoided also."
http://www.humanill Behavioral- Health-A- Br/Birth- Defects-and- Brain-Developmen t.html

I did a search on teratogens and found a website (http://www. medterms. com/script/ main/art. asp?articlekey= 11315) that names androgens as a teratogen. This caught my attention since I have PCOS and it essentially puts a woman's hormones into chaos. So I did a search on "androgens and PCOS" and found a website (http://www. healthywomen. org/healthtopics /androgen) that says:

"Excess amounts of androgens can pose a problem, resulting in such "virilizing effects" as acne, hirsutism (excess hair growth in "inappropriate" places, like the chin or upper lip) and thinning hair. "

I have had adult acne for years as well chin hair since a few months after I got pregnant with my oldest...

After doing a search on the effects of PCOS in Anen, I found an unrelated website (http://www. ovarian-cysts- news78.html# sec2) that says:

"And since so many of you are taking metformin (Glucophage) to treat your PCOS, we decided to re-explore the possible relationship between metformin and B12 problems.

Unfortunately, there doesn't appear to be much interest in how vitamin B12 is affected by metformin, since there isn't much published research on this topic. But the research that exists indicates that people who take metformin have diminished B12 absorption and lower B12 levels.

To the extent that metformin makes it more difficult to absorb vitamin B12 from your food and reduces your vitamin B12 levels, you could develop a problem since B12 is so important for many functions in your body, including the creation of a healthy baby.

If you're on metformin therapy, consider supplemental vitamin B12. This would be especially appropriate if you are a vegetarian, since most dietary B12 comes from animal products. "

So, long story short add the excess androgens thanks to PCOS with the Metformin I was taking to treat my PCOS and Riley didn't have a chance... and I don't think any other child I have will have a chance either unless I get control of my PCOS (without metformin) and that's not possible...

'Life sucks' doesn't come close to explaining what I am feeling right now. I need to stop reading stuff. I just keep coming back to 'I*thought* I was doing everything right' but I guess it was out of my hands. Its so depressing.

Friday, May 22, 2009

Random thoughts.

A week from today is my postpartum visit. During this visit I am, hopefully, supposed to get the results of all the genetic testing on me and chromosomal testing on Riley. I am kinda scared to hear it all. I have done some reading online and know that Anen has a genetic component, however they are not sure how much of an effect genetics have on it (they are not sure on very much *sigh*). I am scared that they will find something that will mean Riley won't be my only angel baby. My mom was pregnant 8 times (total of 9 babies) and all became angels, except me. They never did ANY testing on her, they just blamed it on her Endometriosis. This has long been a fear that I would follow in her shoes and so far it has been the case (2 pgs, only my first one living). So, I am honestly scared to death to get the results. Normally when I know I am expecting results from the doc I am calling every few days but once I got the Anen results I quit calling for fear of what I might hear next. I am scared of what I might hear but at the same time I don't want to be blindsided like last time.

Also, I know logically that Anen is fatal, period. There is nothing I could have done to save Riley, but a nagging part of me wonders why he passed so soon. It really would have been nice to have been Dx and have time to brace ourselves b4 he passed, but more so I can't help but wonder if *I* did something (I am not really sure what but I still wonder) that made him pass so soon. I don't know why I am thinking this way but I am. I feel like what VERY little time we would have had to begin with was cut even shorter. Everyone keeps telling me that if I had to lose him that it was better to lose him when I did than to lose him later but I am not sure I agree. I really wish he could has made it to term and was born living even if only for a few minutes so I could have told him I loved him and look into his beautiful eyes at least once b4 he passed. I feel like I was denied so much by losing him so soon, like a chance for a REAL goodbye. Anyway, I look online and see Anen babies that made it so much farther than Riley did. I don't understand why he didn't make it as far as the others. I mean my body was providing him oxygen and just a week b4 they say he passed he had such a strong heartbeat, what could have happened in a week? Part of me keeps trying to think what I did in that week that could have made him go downhill so fast. Maybe one of the meds the doc told me was safe wasn't safe for an Anen baby? I don't think anyone can answer these questions but they are questions that are weighing heavy on my heart.

Ok, now that I am bawling my eyes out (yet again) I think I will stop here. I am not a crier but the past 3 weeks I haven't been able to stop it seems like. :'( It seems like so much triggers the waterfall. Crying myself to sleep seems to be the norm lately.

Tuesday, May 19, 2009

It still doesn't feel real sometimes.

2 weeks 3 days since we said goodbye to our precious Riley and sometimes it still doesn't feel real to me. I slid on something today and nearly fell, instead of trying to stabilize myself my first thought was to protect my stomach. Then, in the next moment the horrible realization- I'm not pregnant anymore. I kinda feel like, if I am not pregnant than where is my newborn at? I know that makes NO sense but it really hard to swallow the fact that I WAS pregnant but now I am not, I WAS expecting a baby but I don't have one.

When you get pregnant you never expect this kind of thing to happen to you. You expect 9 months of planning and prepping dusted with morning sickness and sprinkled with stretch marks, followed by your miracle being born and taking him/her home and staring into those beautiful eyes. Fussing over every baby noise and giggling at everything they do. Yet to get pregnant and expect all those things then to have all our hopes and dreams for that child dashed in a moment's time, its just so hard to wrap your mind around. Logically, I know that Riley is gone and I am not pregnant anymore but there are moments. Sad, horrible moments when for a split second I forget that it happened only to remember the pain a second later. I have never felt anything like this before, I just wish I had never had to feel it at all. I wish nobody did.

Sunday, May 17, 2009

I am kinda conflicted as far as talking to ppl about what happened. On one hand I want to keep Riley's memory alive so I will say something about him or my preg with him and suddenly everyone expression changes and I start getting pity looks and "I'm sorry"s, but at the same time when someone walks up to me and say something I kinda hurry the convo. Mostly because when other ppl mention it its always "How are you doing?" which is an innocent, well-meaning question but it urks me. I mean HOW do you answer that? If I am in a good mood and say "good" I get looks as if they are thinking "you just lost your baby, how can you be 'good'?". If I say "ok" I get the pity looks, and with a very honest "it depends on the time you ask me" I get more pitty looks. I don't dare tell ppl how I am REALLY feeling sometimes because its kinda one of those 'ok I didn't need to know all that' situations. I mean, honestly, at times I am PISSED! At times I feel like saying "I'm wishing I was a crack whore, maybe then I'd still have my baby!" I mean how many crack addicts are out there shooting up while pg and there babies will be born just fine. I did EVERYTHING right, I watched what I did, took my prenatals and an additional folic acid supplement- everything I was supposed to. But in the end I lost him. How does that even come close to fair? You know? It just sucks in general, but we are *trying* to move on with our lives, for RA if nothing else but the pity looks and 'I'm sorry's don't help. I realize there is nothing to say in this situations but I don't know, its just hard to have a constant reminder of a very fresh pain. Maybe some of you know what I mean, maybe you don't, but for me its how it is.

DH is about the same from what I can tell. I can't read his mind or know his feelings but I know he is still hurting but still trying to move on. Every night after we lay down we have a ritual of sorts. I tell DH I love him, he says he loves me to, we both tell RA we love him and he tells us he loves us too and then I hear DH say "I love you, Riley!". We are going through it differently but I don't feel at all like he doesn't care and I have heard some women say that they do after something like this. Its really nice to feel like we are in this together instead of feeling as though I am alone in my feelings.

Riley's (partial) cause of death

The doc's office doesn't have all the results back but the autopsy result (some of them) came back. Apparently, Riley's brain did not develop and all he had was a brain stem. The doc is thinking its a chromosomal disorder called anencephaly which is a neural tube defect. I have heard of this before, years ago on TV, and its pretty much fatal in 100% of cases either before birth or shortly thereafter.

Knowing this gives me peace to know that A: I didn't do anything wrong and B: that it means more than likely he didn't feel any pain. Also, the doc said it's very rare to have this issue recur in future pgs.

It doesn't make it hurt any less but it does give us a little peace in our sorrow. It hurts to know that even though I took my prenatals as well as a folic acid supplement for months prior to and during my pregnancy that my poor Riley still succumbed to this condition, but honestly I do feel like I did everything I could so at least I don't have the nagging "why didn't I..." feelings and that offers a small amount of comfort.

Like I said this may not be the final Dx, there may be more to this since all the results are not back (could take a month or more) but as of right now either way it goes I know he never would have made it no matter what I did or didn't do. I need to do more research on this but for now this is all this info I have.

Riley's funeral

I loved the way they set everything up, it was really pretty. Oh, and pardon the date, I was using a friends camera and didn't realize the date was wrong...

This is the outfit he wore after he was born, his receiving blanket, and what would have been his bed tag, all given to us by the hospital.

Goodbye, sweet baby Riley

After over a year of trying to conceive our second we were thrilled to learn that finally our efforts had paid off. We were expecting. My pregnancy was so good. Sure, I got sick but nothing like I had with my oldest. We were glowing with the excitement that expecting a miracle brings. Never in our worst nightmares did we ever conceive the pain that we were about to experience, and nothing could have prepared us for it.

We were scheduled for our level 2 ultrasound on May 1st, 2009. We were excited and anxious to discover the gender of our baby. All morning I tried to get baby moving in case they were in a bad position they would be more apt to be able to find out if baby was active. Nothing worked but, since I had not felt a whole lot of activity on any given day, I wasn't too concerned. I just figured I was having a lazy baby. We get pulled back for our ultrasound and the tech was pointing everything out saying "that's the babies head, this is their thigh bone" She moved the wand a bit and I couldn't make out what I was seeing so I asked and she said "that's the babies head and body" the first thing I noticed was their was no heartbeat. The tech quickly left the room to go get the doc. Part of me knew then but another part of me was hoping that she just had it at the wrong angle. The doctor came in looked at the u/s and said "I'm so sorry". Robert and I lost it, our world came to a crashing halt. Our baby was gone. Judging by the baby's measurements they said it had probably happened a few weeks before.

We went to the hospital and began the induction process. I was concerned this would be dangerous, considering my prior cesarean scar, but the doc reassured me that with a preterm delivery there was very minimal risk involved. We arrived at the hospital after arranging childcare, informing work that we wouldn't be in and gathering what we needed for our hospital stay. They started the cytotec around 8pm and I was given another dose every 4 fours until Riley was born. Around 10:30-11pm on Friday I started having mild cramps and back labor. Early the next morning I was in full blown labor. I wanted so badly to get out of bed but the doctor had told me their was a excellent possibility that I would feel pressure as if I had to have a BM and that the baby could fall out on the way or in the toilet, so I refused to leave my bed. I just couldn't bear the thought of that happening. Once full labor began I had an insatiable urge to pee. I was not drinking near enough to compensate for my fluid loss and, since I wasn't on an IV, I was becoming dehydrated. Finally, at about 10 am the doctor came in. We had no expectations to push as the doctor had told us that about 90% or more deliver spontaneously either in bed on while walking to the bathroom. So it was a bit of a shock when he said that he was going to have me start pushing. His hope was that since my water was still intact that, during the process of pushing, my water would break and the baby and placenta would deliver at that point. However, my water refused to break. The doctor said he couldn't believe how good I was doing at pushing and that he couldn't believe that despite that my water still refused to break. I asked him if he could break it manually since that was all that was standing in the way of having the baby but he said it wouldn't be a good idea and that eventually it would break on its own. Suddenly I felt what felt to me like a full sized babies head pop out... either that or a mac truck. It hurt so bad and continued to hurt to the point that it took me several minutes to overcome the pain and keep pushing. I thought I was almost done then learned that I had only delivered a portion of the water bag, a very large portion- DH said it was almost the size of RAs head- but still I was far from done. The rest of the water bag was still in there as was Riley and my placenta. I kept pushing and finally the water broke and Riley was born sleeping at 10:44 am. I continued to push as the placenta did not want to come out. Finally, the doctor ordered for an IV to be hooked to my heprin lock and pit and nubain (a pain med) to be put in my IV. Shortly thereafter the placenta came out and I waited as they clean Riley up and the doc checked to make sure the entire placenta was delivered.

When everything was done we got to finally see Riley. He was so tiny, his entire body was about the size of Robert's hands. We cried for a long time, grieving and thinking of him and the life he missed out on. I wondered what he would have been like, what color would his eyes have been, what color hair, what he would have sounded like, how tall would he have been, so many unanswerable questions.

I know this may sound crazy but even considering the circumstances I had I light bulb moment and thought "I'm a mom". To me, that shows that I consider him no less than my perfect baby boy- just like his brother. We will never forget him, never stop loving him he is our baby, alive or otherwise. I'll be honest, it hurts like hell to have lost him and that may never change but he will have a special place in our hearts for the rest of our lives. I think the only things keeping me sane right now are knowing that and knowing that we still have RA and that he needs us as much as he ever did.

Rest in peace my sweet baby boy! I love you and miss you so much.

Hi, its me!

I feel the need to have a place I can vent, somewhere my family is unlikely to find. Some feelings are just too personal for those who are around you to know, and with a pain like we have experienced sharing feelings could be hurtful (aka pain inducing/painful memory recalling) to those directly related to the situation.

Also, I want others to know that sometimes, even when you do everything right, life just sucks and that there are people out there that have been through it and they are not alone. Honestly, it hard for *me* not to feel alone when a condition so rare took the life of my sweet Riley. However, I know I am not alone and I want to have other families know the same.