So, yesterday... Sarah picked me up and we drove to the hospital. You've gotta love Philly traffic on the Sku... We must have sat still, for no reason, for 20 minutes before finally moving and hitting the City Ave exit. From there, straight forward. Get to his office and, I shit you not, it is empty- then a woman comes in with her few days old baby and everyone starts to freak (in a good way). I wanted to shrivel and die. Right there. On the floor. Deb, Dr. B.'s nurse, came out and did some freak, saw me there, and took me to a room right away. She hugged me and even cried. That was rough but it also made me feel like she really cares too. She took my BP (high, but not as high as was feared) and gave me a lab slip. Went downstairs to the registration for the lab (LONG) and then the lab (LONGER) but was lucky enough that the phleb got it on the first poke (yay!) Back to Dr. B.'s where there are now 4 folks waiting. Sarah whips out her knitting and, as she's been doing all morning, makes jokes that, for the moment, lighten the mood enough that I'm not ready to shoot myself with 4 happy pregnant women sitting around me. There's another doctor in his practice now, so 2 of them weren't his. When Deb came out to grab one of them and saw me (I didnt have an appt, he had just said to come in and that he'd see me), she took me back next- to the us room, where my entire pregnancy felt like it was spent. That was rough. But, soon, Dr. B. came in and we talked. Truly, I love this man.
The lab was backed up so my repeat tests weren't ready, so we discussed what we did know. The previous tests showed elevated uric acid (double the norm) and high liver functions, which while not terribly high, showed liver irritation, which means the preeclampsia has made a mark. He took my BP chart (which I was keeping at home) and was happy no more 100s in the diastolic but they were still in the mid-high 90s, with meds. He didnt want to increase the meds to mask symptoms, since more symptoms mean hospital admittance. We discussed the headaches and pain, and decided at what level I need to go to the ER. Then, we discussed Alexander a bit, and finally our next pregnancy. We talked about the Shirakdar stitch (think basket weave through the cervix) as soon as week 12 ends, which would mean 2w of bedrest and then through 36 weeks on modified duty. He said I could do light housework, light shopping, but no more than 90m - 2h on my feet at a time, with 60-90m off after. I'd have us every 2w again to make sure the stitch was holding up through 24w then possibly weekly until 36w, when it would come out. In addition, some of my results indicated **possibly** Factor V Leiden. Basically, Mother Nature's way of adding insult to injury. He wants to test now just to be sure, but even if it comes back negative, will run again when pregnancy since, sometimes, it only presents clearly when pregnant. This is a clotting disorder, which can cause preterm labor and still birth. I know... Let's see what else Mother Nature has in store.
His hope was that the repeat tests would show a decrease and that we would be on our way back to some symblance of healthy. He said he didnt expect my BP to go back to "normal" for 2-6w. He also said that he thought I should stay home 4-6w from Alexander's birth, not completely for physical reasons, although he said that played a role, but for my mental health. That just because I feel like I should be able to take it because I'm an "old hat" doesn't mean I'm not going to crash when I least expect it. And while there is no guarantee that wont be after the first of the year, at least to give myself the holidays. And he gave me a doctor's note to that effect. I can work from home a few hours to do payroll, etc., but nothing major. I left and gave him a card that included the memorial card for Nick and Sophie, which I hadn't given him when we first started back with him because... I'm not sure why. To say I forgot sounds bad, but it's true... And the one for Alex, which just came in.
So, last night, I was feeling scared (I've read on Factor V, which it was funny, he got a kick that I knew anything about it b/c it is rare and, when he said "how do you know about heparin injections?" (one of the treatments), I actually laughed and said "I'm a librarian", to which he got a kick). But, I felt okay, too. Like perhaps things were going to get better. But, that just couldn't be. We were at Sarah's for dinner and my cell rang at 6:40pm. I recognized the first numbers as part of the hospital. It was Dr. B. He started off by thanking me for the card, by saying that we were good people and that he was honored we had chose him for our doctor and for this journey with our children. I almost cried because what he said touched me so much. But then, the primary reason fro the call... The results were back and they were worse than before. Uric acid went up a bit more and my liver function tests doubled. He wasn't pleased. He hadn't ordered the Factor V panel (b/c he wasn't sure until he reviewed the file that he wanted to test now when it could be a false negative) but based on the other results is sending more tests (including repeats of the ones done) and the thrombosis panel. What made me more sad and scared, though, is that he gave me his personal cell with instructions to call him for admittance if A, B, or C happened with my BP or how I was feeling. He's not on call this weekend and wanted to make sure we could get hold of him. I can't imagine things are great if he felt the need to give me that.
Last night, I didn't really sleep. I held Peter a lot while he slept and mostly just tossed and turned. There's a level of it that is head pain and the feeling that my head my explode under the pressure. But more of it was mental. I'm truly scared. Pre-eclampsia is a problem usually relieved by going into labor. Because of this, there is an even greater risk that I will become pre-eclampsic in subsequent pregnancies. I'm already at an increased risk of preterm labor, which we are trying to stop. Dr. B. says that, best case with pre-e, is that they can get me to 28w-30w. If the pre-e doesn't present until after 24w, best case is 34w. If after 28w, then full term. But, it's a guessing game. No one can give an answer until we are pregnant again and the symptoms start. And right now, the rules are just get to 12w so that we can do the stitch and hope for the best.
This sucks on two fronts. Not only am I scared because of how I feel, but it impacts how I mourn. I miss my son. I miss all my children, but right now, the hurt of Alexander's death is more than I feel like I can bear right now. It has cut me to a quick that even Nicholas and Sophia didn't touch- I think because I knew such a deep grief with them. I feel like the focus has moved from our son... our precious, perfect son... to me, this mother who deserves to feel like shit because she's killed another baby. And while we can all argue the semantics of it, my sons and my daughter are dead because my body failed them in the most basic of ways. And while Peter is worried about even leaving me alone to go to work, and while our parents are worried about my health and the whens of when we will try again... I want to mourn my son. I want people to stop thinking about me and mourn him. And I know that they do, but I hate that now my body can hijack even that most basic thing.
And, on top of that, the planning for more kids. We want a big family. Always have. And until we can afford to adopt a brood, our insurance covers what allows us to try for babies just like everyone else (given, a more watched version of everyone else...). We've always planned on trying again soon after the births of our babies, because we both would like closer ages if possible. But there's an added dimension after you suffer a child's death... Everyone else suddenly wants to know your business too. And the things they say... Even our parents have made the slip of "One day you'll have a living child" as though a living child is better than a dead child or a living child replaces a dead one. It isn't like that. It doesn't work that way. And the rest of our family and some of our friends... It's the same or the "why dont they just adopt" as though adoption is some second rate option. I realize that, because I'm adopted, I have a chip on my shoulder about that comment, but still... I feel like responding "why dont you pay for it?". Do they think we havent'??? Do they think that over 9 barren years and after the pain of losing 2 very wanted babies to deaths too early to even fathom for most people that we didnt look into it at some point??? Do they even care??? Or is that the miracle answer to them? Do they know that we've gone through 2 adoption losses? Children that, although we'd never met, we'd fallen in love with, only to have something get in the way of adopting them and seeing them go to other homes (homes, I'm sure, that they were meant to be with and are happy with their parents, no doubt)... No, they don't know that. They dont know that, when we pray for our children, we include two names that no one else ever hears, ever sees... They don't know...
Today is a bad day. I am feeling so low and am trying to perk up, as though that will somehow help the weekend and the repeat blood and urine tests on Monday. I am trying to remember that our precious son's photo album is complete and that I can enjoy that time with him, looking back and remembering. I am trying to remember that there are so many people going through this journey with us, feeling this pain with us, holding all of us close to their hearts that- even though they may not personally know this pain or loss- they are so close to us and our children that they go through this with us, not looking at us. These are blessings and I am trying, desperately, to hold onto these...
This is truly very difficult news to hear. It is so unfair and so immensely difficult. I can hear the anger and despair in your post and it is so justified.
But let me say one thing.
YOU DID NOT KILL YOUR BABIES.
and in case you did not get that
THIS IS NOT YOUR FAULT.
I know you won't believe me, as I did not believe others who told me that. I knew that in each cell of my body held the chromosomes that killed my child. I was riddled with her death, and the death of future children. It was me. I hated hated the fact that my self loathing distracted from the purity of my grief.
Can I be rude and be a little bossy?
If your anger turns inwards towards yourself you need to tell someone. You can tell us here - you can write me an email (barbienance at hotmail dot com)but do not carry those dark dark thoughts on your own because they will take you to a bad place and it is a burden that cannot be carried alone. I promise not to be afraid of whatever you think or say.
Also, I would really encourage you to have people around - not to hang out with but to sit and knit in the next room while you wail on your bed. You probably don't want it but if there are a few dear people around who would be happy to do that ask your husband to arrange for them to come over at some point while he is out. Just in this really really difficult stage.
I'm sorry to be all practical like that but I remember something of that feeling. It sucks so totally and unbelievably. I think that the stage of self blame was the darkest part of my grief and took me a long time to get past it.
I am with you in this, even from the other side of the world. I will pray that there are some who are with you in a more practical way.
Just keep going. You only have to get to the end of today. Tomorrow will be something different.
All my love and care
I'm so sorry Michelle. It's so unfair. I hope, at least, with the new knowledge about what is going on with your body, they will be able to get you to that happy ending. I am also SO glad that you have such a wonderful,caring doctor watching over you. What a huge difference that will make for you.
I hope you get some peace and rest in the coming weeks. Your heart and soul surely need both.
I have no words.
I am so very sorry. Thoughts and prayers.
here via Mel
Michele, I need to echo B and say that it really really really wasn't your fault. It's a screwed up duality-- living in our physical bodies, having these bodies be such a big part of our identities forming, of our understanding of who we are, but having little to no control over them. My body seems to be into letting infections into gestational sacs. But I don't feel responsible for my son's death. And though I know it's a lot easier for me to say than for you to believe, you are not responsible for the loss of your beautiful babies either.
I also want to say that your doctor sounds wonderful. I have an OB who I adore and trust. Having him on my side made my subsequent pregnancy (somewhat) bearable.
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