Friday, January 29, 2010

The Doctor Will See You Now

Okay, so not exactly right now but apparently the Super Doc has agreed to see me. How excited am I? Well, not as excited as I thought I would be and here's why:

Let's journey back to May when I found out that I have a Protein S Deficiency and my ob/gyn referred me to the Super Doc to get advice on doing anymore fertility treatments and also how not to have anything bad happen if I were to get pregnant. When I called to make the appointment a very nice nurse informed me that the Super Doc only sees women who are pregnant, not those who are merely hoping to get pregnant. Super Doc referred me to another doc who I ended up having a consultation with. The gist of the appointment was that although the clotting disorder has been know to cause fetal loss she wasn't concerned about that given my great history (at the time) of two successful pregnancies and no losses. She suggested 40mg of Lovenox once a day during any fertility treatments and also while pregnant. Her main concern was preventing me from forming another clot and there was no need to worry about the baby - or so she thought.

Now we're in October when I find out that I am pregnant and call my ob/gyn for a Lovenox prescription. He recommends doing 40mg twice a day. His theory is that Lovenox is made to be effective for 12 hours and so doing only one shot a day would only protect me from clots half of each day. That sounded like common sense to me and so I began doing a 40mg shot of Lovenox every morning and every night into my stomach.

Jump to the discussion with my ob/gyn regarding the pathology report on the placenta when he once again refers me to the Super Doc. I remind him that I was told she only sees pregnant women and he says that no, the magic password is "miscarriage" and I'll get an appointment. Because she's the Super Doc though there are no available appointments and I'm promised a call back. When nice nurse calls me back it's only to say that Super Doc has reviewed my records and doesn't think she really has anything more to say than what the doc she referred me to already has said. Really? She still doesn't think there is any need to be concerned about fetal loss even though I have now experienced it? I was very confused and almost felt stupid asking the nurse if Super Doc realizes that my son died because she's the Super Doc so shouldn't she know? Nice nurse goes on to say that she's called my ob/gyn and just wants to let him know why she doesn't think seeing me is necessary. Just great.

Now it's the next day and nice nurse calls to inquire if I can come in on February 22nd at 8:00am or was that too early for me? Joy of joys - Super Doc will see me! Or wait, why will Super Doc see me? Is it just a favor to my ob/gyn? Did their phone conversation go something like this:

Super Doc - Hi ob/gyn, I'm looking over this info and I don't think there is really anything I can add

Ob/gyn - Well Super Doc, my patient is pissed off, she's angry and she's bitter so I need someone else to deal with her

Super Doc - oh yea, I have a few patients like that myself

Ob/gyn - we all do, so can you just see her before she sues my ass?

Super Doc - okay, okay but you owe me, big time.

End of call.

So, is Super doc seeing me just to tell me all the same stuff I've already heard? Or, is she seeing me because she realized something is horribly wrong with me and something could go horribly wrong if I ever get pregnant again and so she must see me? None of those options are really good ones.

Tuesday, January 26, 2010

A Negative Positive?

You know the world has completely turned upside down when you are gazing at a positive pregnancy test and all you feel is sadness and anger that your body still hasn't caught on that it's no longer pregnant. I never thought I'd think of a positive pregnancy test as such a negative thing. Depressing.

Monday, January 18, 2010

Mysteries of the Miscarriage

So, the pathology report on the placenta came back and things didn't look good. The placenta was described as appearing more like that of a woman who gave birth at 42 weeks than at 14 weeks. There were a lot of fibrin deposits and calcification and overall degeneration. His opinion is that the pregnancy was doomed from the beginning and that nothing could have been done to prevent this. My opinion is that my blood clotting issues played a role in what happened and Dr. Google seems to agree. If you google fibrin and placenta you come up with a whole lotta scientific articles that link fibrin deposits to clotting disorders and at least one article I read specifically cited Protein S deficiency. What I find worrisome is that the standard treatment is always listed as taking blood thinners and I was on blood thinners my entire pregnancy (and for six months prior). Possibly even more worrisome is that the data seems to suggest that this issue is likely to reappear in future pregnancies. That is, assuming there are any future pregnancies.

What to do next? My doctor referred me back to the same doc he referred me to in May but she then refused to see me. I called this morning to make an appointment and I could tell that the nurse was about to give me the same brush off and refuse to make the appointment because I'm not currently pregnant but then I played the miscarriage card and everything changed. It seems that losing a baby may just mean that some of the standard rules don't apply. Unfortunately, losing a baby does not move one to the front of the pack, and the nurse stopped looking for an open appointment once she hit APRIL. She made a comment about having job security (yes, it must be very reassuring to know that women will always be losing babies and having high risk pregnancies) and then promised to check with the doc to see if she could squeeze me in. I was promised a call back but that call didn't come today so please cross your fingers and toes that the call comes tomorrow because I really need someone to not just explain all this to me but to reassure me that there is hope for the future.

Thursday, January 14, 2010

What to Say When You Don't Know What to Say

Losing a child is a horrible, horrible thing and the pain only gets compounded when people make insensitive and stupid comments to you. I haven't decided yet though which is worse, having people say something stupid or not having them say anything at all. You know, instead of just saying "I'm sorry for your loss" they look at you with sadness and pity and then quickly look away. Or, they ask in a cheery voice "How are you?" clearly hoping and praying that you will say you are fine and quickly change the topic. After all, if they really wanted to know how you were feeling mere days after losing your child they wouldn't ask in such a chipper tone of voice.

Talking to someone who has just experienced a loss is awkward and I completely understand that. So, my advice is this, just say "I'm so sorry." That's all that is really needed. You don't need to ponder the whys of the universe, you don't need to say that there must have been something wrong with the baby (because does the fact that someone has something wrong with them, perhaps cancer, make anyone feel any better when they die?), you don't need to say that God has a plan or how He needed another angel in heaven, or whatever other platitude you were considering saying. Trust me, none of those things are going to make the person you're talking to feel any better. Knowing that someone is feeling your loss with you and that they are sad it happened may not make them feel better but at least it's not going to make them feel worse. Being available to them and not being too scared to talk about what happened is even better. So many people get a look of fear in their eyes if I even dare to say the words "miscarriage" or "when I lost the baby" or anything of the sort. I need to talk about what happened, I need to talk about my son and I need someone to listen. I don't think that is too much to ask of a friend.

And, one last thing, yes, it is totally appropriate to send sympathy cards. I have been astonished by how few I have received, especially from those that I am close to. I'll admit that in the first few days after our loss I couldn't even bear to open and read those cards. But as the days passed I opened them, read them and wept over the kindness of those people who took the time to send them. I have gathered them all together and they are with Trey's things and I'm certain that over the years there will be times when I pull out his things and go through them and remember. I don't want to just remember the bad, but to remember the caring and kindness that I felt from my family and friends.

Sunday, January 10, 2010

Love, Loss and Hope

Love -

In October our family took our first "real" family vacation together. We packed the kids into the car and headed to northern Wisconsin. It was fall and beautiful and everything seemed so good. Sure, taking two small children on vacation is a lot of work but it was fun. While we were gone I found myself dizzy off and on, extremely tired at times and suffering from heartburn. Upon our return home my period didn't come when I was expecting it to so I decided to use a home pregnancy test. I remember setting it on the shelf in the bathroom closet to process while I dug out the hair dryer. Before I could even start drying my hair I could see the second line coming up. To say that I was shocked would be putting it mildly. We were told that our chances of conceiving on our own was less than 4% so this was a miracle. I was stunned and just walked with the test into SB's room where the husband was asked him if he was sitting down. He instantly knew that I was pregnant and we hugged while I cried out of happiness, shock and worry.

The same day I got the positive test was the day I was supposed to have my last check for my coumadin levels. The minute I got to work I called my doctor's office so that I could be switched from coumadin to lovenox. I was put on 40mg of lovenox twice a day which I inject into my stomach. I went in for a beta and it came back over 100. Multiple repeat betas showed good, strong, doubling numbers. At 6wk 1 day I went for an ultrasound which showed one little baby and one strongly beating heart.

Over the next few weeks we told our family and friends the good news. We were having our third baby! I started picking out names and making plans to buy a bigger car and wondering where I was going to fit two cribs. I tried not to get too worried about how we were going to handle two kids under the age of two and three under the age of four. I was excited.

At 11 weeks we had the nuchal translucency test done and the results came back great. What a relief that was since I am of advanced maternal age. Who knew 38 was so old?

At 12 weeks I had a small bleeding episode but an ultrasound showed a perfectly healthy baby and no reason for the bleeding. I had been throwing up quite a bit and was violently throwing up when I had the bleeding so I thought maybe I had just pulled something. I hadn't been doing too much because I was very tired but I vowed to do even less.

At 13 weeks, on Christmas Eve, the husband and I were putting toys together for the kids when I felt like I was wetting my pants. I was horrified because although my bladder control is not great while I'm pregnant it was too much to think I was soaking my pants for no apparent reason and with absolutely no control. I stood up to go change and when I looked down all I saw was red. Bright red blood EVERYWHERE. It was all over the carpet, soaked through my pajamas, streaking down my legs and onto my feet. I screamed and made my way to the bathroom with the husband following close behind. My mind was reeling and as I started to pass clots I was certain that I was losing the baby. I bled for perhaps 10 minutes and then after it stopped we made our way to the emergency room. There a nurse searched for a heartbeat and found one after the longest five minutes of my life. She said that it was strong, high actually, around 190 but that my heart rate was very elevated as well so the baby's would go down as I calmed down. I was sent home and told to rest.

Naturally, upon my return home I began googling and wondered if what I had was a subchorionic hemorrhage. My bleeding sounded much like what women have when there is a hemorrhage and so I decided to call and request an ultrasound to see if there were any clots in my uterus. I wanted to know if I could expect more bleeding and what, if any, restrictions I should be following.

Loss -

On Monday, December 28, 2009, I went to my doctor's office for an ultrasound. The screen was turned away from me but I could see it partially. The tech scanned my stomach and I could see the baby but couldn't make out the flickering of the heart. She asked if I had cramps during the bleeding episode on Christmas Eve and I told her no, not really and then I said "is everything okay with the baby" and she just shook her head no. The husband grabbed my hand as I let out a scream and then began crying and begging her to not say that. She said that she couldn't find any cardiac activity and that she'd have to go get the radiologist to be a witness. I was stunned and heartbroken. When did my baby die? Why did my baby die? I was 14 weeks that day and the baby measured a perfect 14 weeks.

The radiologist confirmed that there was no longer a living baby inside of me and then we were ushered down the hall and into a doctor's office. My doctor was on vacation so I'd be seeing someone I had never seen before. She came in and explained that I would need a D&C and did I want an epidural or would I rather be put to sleep. I wanted to be put to sleep and just wake up to have everything over with. She said that they would try and schedule the procedure that same day and so I questioned if that was okay since I had done a shot of lovenox that morning. No, it wasn't okay and I would need to be off the lovenox for at least 24 hours. We were sent home and someone was going to call us once the procedure was scheduled.

That whole day I had been quite sick, throwing up twice prior to the ultrasound and then every ten minutes or so after we got the horrible news. I also had a massive headache which I had since Christmas. I look back at that and assume my body knew that there was something wrong and the headache was most likely triggered by dropping hormones. Maybe an hour later the doctor called to say that the time the hospital had available wouldn't work with her schedule. She had a ton of patients and couldn't reschedule them in order to take care of my dead baby. She also wasn't the doctor on call for Wednesday so she had checked with that doctor and low and behold he doesn't perform D&Cs on women who are over 12 weeks pregnant. His suggestion, and hers since it would make all this scheduling issues disappear, was that I go to the hospital and be induced and deliver the baby. The dead baby. I was horrified at her insensitivity and hung up on her.

Shortly after I contacted a friend who had lost her baby at 16 weeks and had delivered him. She said that it actually was better than her D&C at 11 weeks and gave her more of a feeling of closure. So, perhaps I could be strong enough to labor and deliver my baby. Perhaps it would help me to process all that had happened. Before I could give it more thought I began bleeding again. A call to the doctor confirmed what I assumed would be the case, my body was starting to miscarry the baby on it's own and I couldn't stay at home as I was too far along for that to be safe. We reported to the hospital and the induction started. I was given cytotec to open my cervix, zofran to stop my vomiting, frova to help my headache and narcotics to make certain I didn't have to feel any physical pain during the delivery. At 10:15 p.m. I gave birth to a little boy. We had as son and we named him Trey Barton. The nurse took him away and cleaned him up as best she could and then brought him back to us. He was in a little sleeping bag and then wrapped in a blanket and placed in a basket. The husband and I took turns holding him and talking to him. We told him how much we loved him and how sad we were to know that we would never get to know him. About an hour later the nurse took him away and on Wednesday he was buried at a cemetery near our home.

I lost a lot of blood during the delivery and was passing huge clots, one the size of a softball. I don't understand where all those clots were coming from given that I have been on blood thinners since April. No doctor seems to have an explanation for that either. Nor do they have an explanation as to why our baby died. Was it a blood clot that then caused the placenta to pull away? Was there a clot in the umbilical cord? Was it just bad luck? I have no answers.

Hope -

Last week I had a follow up appointment with my doctor. Although I got no answers as to why all this happened he did tell me that he would have a perinatologist review my records and have her meet with me so that we can develop a treatment plan for when and if I get pregnant again. Apparently, there may be a need to place me on a higher dose of lovenox.

I'm still really hurting. I'm sad and I feel empty. I look at my children and see the little baby boy who will not be. I'm scared that we may never get so lucky as to have me get pregnant again and at the same time I'm petrified to get pregnant again. Losing another child would just be too much to bear. I feel lost and yet somewhere in me there is hope. Hope for our future and hope for future children.