Last month I had a physical with Dr. Looove. I hadn’t had an exam since before I was pregnant with Maddie, so it was definitely time. It was good to see Dr. Looove. I was so used to seeing her at least once a month for Maddie’s check-ups, shots, etc. We talked about Maddie for 25 minutes before she even got to the exam.
Because my pregnancy had so many complications, Dr. Looove ordered more than the usual panel of tests. I had some major blood work – 14 vials of blood were taken that afternoon. Yeah, I practically needed a transfusion after the nurse was done. I will say, the nurse that took my blood was so amazingly gentle that I started to cry. I cried because she was always Maddie’s nurse. She didn’t hurt me, and I realized she never hurt Maddie. It was a relief.
I didn’t think much of the tests until Dr. Looove called me a few weeks later. Everything had come back normal except for one thing – I had an indicator in my blood that is common in clotting disorders. She’d run it because I’d had so many blood clots during Madeline’s pregnancy. Dr. Looove hypothesized that this could have been the reason Maddie was born eleven weeks early. She referred me to a hematologist, and that appointment was yesterday.
I was very nervous about the appointment, I barely slept the night before. Luckily, the hematologist immediately put us at ease. He went through my whole history and asked a zillion questions, examined me, and then poured over the test results. He was very interested in hearing all about my pregnancy with Maddie, and requested access to my pregnancy records. He is especially interested in the pathology results from Maddie’s placenta.
Dr. Blood (come on, you knew I was going to give him a nickname) doesn’t want to make a diagnosis until he reviews my pregnancy and gets new tests results (eight more vials of blood were taken, yay). But he said that I may have something called Antiphospholipid Antibody Syndrome. Basically, that means my body’s immune system “attacks” its own clotting mechanism.
Our biggest question after getting all this information was – should I have been tested for this when I was pregnant? My general practitioner thought to test for it, so it seems like something my obstetrician and THREE high-risk OBs would have thought to check for, too, right? Dr. Blood said, “well…” and his pause and the look on his face spoke volumes, “some doctors are not used to this sort of thing, and might not think that way…but with the presence of clots I would think that yes, you probably should have been tested.”
Oh good! I LOVE the Coulda/Woulda/Shoulda Game! Now with the exciting What If? Bonus Round!!!
So what does this mean? Well…there is still a lot of testing to be done. Like I mentioned, I had repeat labs run today, and they will be run again in eight weeks. Right now we just have to wait. My pregnancy records are being sent to Dr. Blood (my former OB is associated with a different hospital), and once he reviews them he’ll decide on the next step.
Until then, all we can do is wait and wonder.
Bec says:
I don’t know what to say, it’s very…disappointing that your OB’s didn’t test your for it, very disappointing. How are you doing with it all?
Bec’s last blog post..Itti Bitti D’lish – snap ins
Kathryn says:
Seems like your in good hands with Dr. Blood..thank goodness!! I hope that if you become pg again, your next time will be much much easier all around.
Sending you hugs, bandaids and a gallon of water to help you replace all that blood loss.
Joe @ Irrational Dad says:
It sounds like one of those situations where it will be nice to have some solid answers, but devastating to know that things could have taken a different path had those answers been known earlier. I do hope you get the answers you need, and that they could possibly help someone in the future.
Joe @ Irrational Dad’s last blog post..Got to keep on movin’
Rebecca says:
I love Dr Blood’s nickname!
Oh yeah all the what if’s. Been there, try not to go there anymore. Hope this gives you some answers.
Rebecca’s last blog post..expecting the worst
Lynn from For Love or Funny says:
I’m so glad that you might have found the answer to why you had those clots during Maddie’s pregnancy. Keep us posted.
Lynn from For Love or Funny’s last blog post..Don’t go there!
Jennifer L says:
You’re a real trooper with having all that blood drawn…I usually feel weird after only having 5 vials drawn. I understand the annoyance with the whole “some doctors aren’t used to this sort of thing.” No one bothered to even try to figure out what the heck is wrong with my kidney or why it decided to be especially naughty when I was pregnant.
Jennifer L’s last blog post..The whole weekend and then some–but quickly
catherine lucas says:
In Belgium (Europe) there is a saying: “If my aunt would have wheels, she would have been a carriage”. What if’s are the most daunting and haunting for a human to ponder about.
Would and Should live together in a tree…
I hope that the tests they perform now will help you in the future, I am sure that if you would ever want a baby again, that they will be extra careful with you.
It is strange that in a world where they can keep people alive against all odds, now and then a simple thing is ignored with all the following horrific results.
You might have to kick some ass Heather… I do hope that the answers you will get are answers to questions you might have!
catherine lucas’s last blog post..Officially crazy…
Krissa says:
Oh my goodness. (puzzled, frowny face). The one thing I am so glad for is that you had that nurse and you have the peace of mind to know that all the needle sticks that Maddie went through with at least that nurse didn’t hurt her. … Still thinking of you guys. I hope you get some answers soon.
Meg says:
I have that, too. In my first pregnancy, no problems. In my second, I took a baby aspirin each day but had an “aging placenta” which just meant they induced labor a couple of weeks early. No problems. For my third, they advised me to come in the minute I confirmed pregnancy and I began daily heparin shots, which is about as much fun as it sounds – throughout pregnancy and for 6 weeks postpartum.
I was lucky – I was 3 for 3 with my pregnancies – but was told that the test isn’t necessarily common or routine, and that many women don’t find out they have it until they miscarry a few times. (!) I’m done having babies and am supposed to be taking a daily baby aspirin to help prevent clotting – that’s all. No blood thinners, no nothin’.
If you want to know more about my experience I’d be happy to share – just email me.
Meg’s last blog post..Worlds collide
Kristen McD says:
Pregnancy complications are such a mystery because nobody wants to test/research/experiment with pregnant women. I had hyperemesis with both my pregnancies – and while it is NOTHING to compare – there is so little information because poking and prodding a pregnant woman and her baby is unethical. It’s so frustrating. I hope you get answers.
charlane says:
OH MY that is a lot of blood to be giving away. I hope that you used that very good excuse to eat a brownie! I am glad to know tha the needles did not hurt, and what a releif to know first hand that this nurse was gentle and did not hurt Madeline either. Good luch with all of the labs, and I am sure contiued blood work.
charlane’s last blog post..Off the Charts
J. says:
Ugh. How awful to contemplate a different path. What could have been.
And yet the good, beautiful things about the path you walked would not be there on a different path.
Al_Pal says:
Gosh, how heart-wrenching. *HUGS*
Glad you have a thorough doctor on the case now!!!
Suzanne says:
Oh, I would be ruminating over the what ifs, and stewing in my angry juices over this one. I am so sorry that your OBs did not investigate this further, if only so you could know that every avenue was pursued during your pregnancy.
Lora says:
Heather, I have antiphospholipid antibody syndrome. If you want to ask me any questions about it, feel free. I did have high risk, complicated pregnancies, but with the proper treatment (Daily shots of heparin, and aspirin) things turned out fine. I’m so sorry that you weren’t given the tests you needed. Again, email me if you want to ask anything.
Kelly says:
It is so unfortunate that some doctors seem to be there just to get ’em in and ship ’em out and send ’em the bills… Disgusting how they play with people’s lives. Disgusting how you’re left with these questions – the what ifs are horrendous to have to live with…
Love the nickname!
Sending you love and virtual hugs, as always…
Kelly’s last blog post..The Rusty Ride
La Petite Belle says:
good luck! I hope it’s nothing serious, but also that you are able to get some answers. Also, I wanted to tell you how much I look forward to your blog posts & tweets!
La Petite Belle’s last blog post..Week Recap (in Bullets & Pics!)
DesignHER Momma says:
Hopefully your mind can stay away from the wouda/couda.shoulda game – it’s evil, nobody really wins. Sounds like you’ve aligned yourself with some really talented folks, which should be comforting. Still thinking about you and praying for you daily. love ya…
~emily
DesignHER Momma’s last blog post..Eat it like a long weekend
Amanda says:
When you said that you had 14 vials of blood taken I was fairly sure that was was what they were checking for
Should they have tested? Yes, even if it was post pregnancy. This is one of those things that has implications for you as well as a potential second pregnancy.
I would like and encourage you to joins us the preclampsia.org boards – even if to look around. There is a wealth of information. You will find that there are experts who deal with this specific disorder and women who can help explain the disorder in laymens terms and also help you understand all the acroymns they are testing for (or will test for).
I would like to talk with you about getting some expert advice in this subject and how I might be able to help you when and if you desire.
Ali says:
Heather, I hope you get some answers out of all this! Good Luck Mama!
Ali’s last blog post..Frazzled.
Heather says:
I have A.A.S. too. Mine was diagnosed by a perinatologist at my 13 week nuchal screening, only after my OB and 2 midwives told me that the presence of these antibodies, and the fact that I had already had a blood clot (which they were aware of early on) were “nothing to worry about.” I often think of the “could have beens” if I hadn’t started on blood thinners, and my heart goes out to you.
Heather’s last blog post.."Vintage" B.B.
cindy w says:
I’m glad you followed up on this topic, I’d been wondering what the 14 vials of blood were about since you mentioned it on Twitter. And I’m glad you’re getting some answers & are being proactive about your health, but I HATE that you’re going to have the “what if?”s now. I hope that you don’t focus too much on that. (Which is pretty much impossible, I know. I couldn’t do it.)
Love the name Dr. Blood. And now I’m curious as to what you’re going to nickname your next OB-GYN. Hee.
cindy w’s last blog post..28 months
Jen says:
Hi, Heather-
I check your site from time to time-you and your family are in my prayers daily.
I have the disorder that you are talking about. After several heartbreaking miscarriages and one “late” miscarriage, I was diagnosed in 2005.
The treatment plan that led to one beautiful baby was rather simple when I finally got an accurate diagnosis. I took lovenox shots and then heperin injections during my pregnancy and the placenta was monitored via ultrasound the entire pregnancy for clotting. Please don’t hesitiate to contact me if you have any questions.
Christy says:
I am not a fan of the ‘what-if’ game…it’s a very slippery slope to tread. I’ve never heard of that disorder before. I hope everything gets figured out and your doctors are able to treat it & prevent any future problems.
Christy’s last blog post..mysqlerror
Aurelia says:
I’ve had a blood clotting disorder in pregnancy as well and done the heparin and baby aspirin routine, which isn’t pleasant, but if you do the shots the right way, pretty painless.
http://stirrup-queens.blogspot.com/ If you go here, Mel has a lot of resources for IF and prematurity and APA and other clotting disorders, as well as videos on how to do the injections pain and bruise free. She herself has a clotting disorder, (the same one as mine) and her twins ended up in the NICU after she had IUGR as a result.
Soooo, you didn’t mention which one, but if it really is APA, I’ve always been told that starting heparin and aspirin after 12 weeks is pretty late and may not stop whatever is going to happen from happening. Depends on which genetic issue it is? MFTHR, needs high dose folic acid (5 mg) from prior to conception as well as heparin, etc. so it might not have helped to do it later in pg.
Plus—not all the clotting disorders have been discovered yet. Seriously. Mine, PAI-1, is rather new, and has been shown to be the cause of endometriosis, and linked to IUGR, miscarriage, stillbirth, prematurity, etc—but not definitely proven so lots of Docs just tell women to try again, and so what! Which makes me crazy. Please don’t listen to any doctor who says that heparin and aspirin don’t matter. Just don’t.
Look around Mel’s site, email any of us who are on the list as having clotting disorders, and hopefully, you will get some answers. As painful as it is, knowing something is better than knowing nothing. Take care hon.
Aurelia’s last blog post..mysqlerror
Lindsay from Florida says:
This is such a double-edged sword. On the one hand, it will certainly leave you wondering what could have been with beautiful Maddie, and that is unthinkably difficult. However, it might also (ever so slightly) ease some of the justifiable fear and concern you have voiced over another pregnancy. Any future child of yours would have a big sister to be SO proud of.
Connie @ Young and Relentless says:
I’m guilty of playing the ‘What If’ game. And I know if it were me…I would be furious to find out that something could have been prevented. Hang in there Heather.
I want you to know that I think about you, Mike and Maddie every day. You are in my prayers….
Connie @ Young and Relentless’s last blog post..Martha Talked To Me on Twitter!
Casey says:
I once had an OB tell me (after 2 miscarriages) that she didn’t really have time to “keep up with all the literature” regarding treatment for recurrent miscarriage. This in response to my questioning why I wasn’t put on progesterone as soon as I was pregnant after my first loss.
REALLY? You don’t have time to keep up with all the literature? THAT’S YOUR JOB! Or, how ’bout you refer me to a specialist (RE), whose job it is to keep up with all the effing literature. At the very least, find a different way of saying “I don’t know.”
Aaaaargh. So, Dr. Blood is probably being gracious and correct when he says that some doctors aren’t as familiar. Doesn’t mean that it sucks any less.
I hope you get some answers.
AnnD says:
I’m glad it sounds like you are getting some answers as to why things might have gone the way they did with your pregnancy. My daughter has an auto-immune disorder so she sees a hematologist at a Riley Children’s Hospital here in Indiana. (I really chuckled at the name, Dr. Blood). If you find a good doc, you gotta stick with them (which I’m sure you know already) but I do think that those truly motivated and determined docs are less common than what we all think.
AnnD’s last blog post..
Tami says:
If would of been nice to of know that before you were Pregant with Maddie.. Allot could of been different.. I hope all works out with your test and they can prevent any thing else happening.. You are in my thoughts.
Heather says:
I also have a clotting disorder- slightly different from what you suspect you have. It wasn’t tested for until after my 3rd miscarriage which is maddening. In order to have successful pregnancies I had to have daily shots of Lovenox (low molecular weight heparin) from the minute I got my BFP until 2 weeks before giving birth. Every pin prick was more then worth it!
I hope you’re able to get the answers you need and that you realize that regardless of all the “what-if’s” running thru your head nothing- absolutely nothing- that happened in regards to your beautiful Maddie’s early birth was your fault. You worked with the information your dr’s gave you- something we all do.
Thinking of you and Mike!
Megan says:
Hopefully you will get the answers you need and I pray that those answers will give you some peace.
Megan’s last blog post..Hard.
McMommy says:
Hi Heather,
As soon as I read your diagnosis, I thought to myself….I’ve seen that word before. Where did I just read about this? And then it hit me….the Bloggess! I believe this is the same clotting disorder, correct? http://blogs.chron.com/goodmombadmom/2009/05/every_day_1.html
McMommy’s last blog post..The Elusive Family Photo
Dawn says:
ugh. will there be a “stab a fork in the eyes of the OBs” round?
Dawn’s last blog post..Random thoughts on housekeeping
Danes says:
UGH. I know that clotting test. That sucks they didn’t have enough foresight to test you waaay before this ~ but if you ever decide to have another baby at least they’ll be one step ahead of the game. I know that doesn’t bring Mads back, I just hope and pray for peace of mind for you…someday. ***HUUUGGG***
Mary says:
Wow, that’s a lot of blood! The most I’ve ever had taken is 2 and I couldn’t stand to look the entire time. It sounds like you’ve got some good doctors in your corner. Yes, it’s difficult NOT to think what might have happened had something been done differently. But a different turn on a path leads to so many different things, and really what you and Mike had with Maddie sounds like it was amazing. Difficult, yes, but still filled with love and a blessing for all three of you. Since there aren’t many “re-dos” in life, it’s better to try to live with no regrets (yeah, I can’t do that either.). I continue to keep all of you in my thoughts.
BeautifulWreck says:
I hope you get the answers you need. I know you will question everything and what shoulda,coulda, woulda happen but just try to live in the present – as difficult as that is right now for you. One step in front of the other – just go slow. Still praying for your family.
BeautifulWreck’s last blog post..Sometimes I do wear my feelings on my sleeve
Jennifer says:
My sister had this APLS–she had 2 miscarriages (late ones)before they figured out what was going on. But once they figured it out, she had 2 more pregnancies–but had to have blood tests weekly and take Heparin shots daily as well as a steroid.
Not sure why I’m gining you all this medical detail! I guess what I’m trying to say is that if you do have this, you can go on to have a healthy pregnancy.
Also, I think it’s surprisingly common (though I can’t imagine why) that OBs miss this diagnosis and don’t test for it. I don’t blame you at all for being angry no one checked for it w/ Maddie’s pg–it seems so obvious now that they didn’t figure it earlier w/ my sister.
Anyway, good luck w/ all the testing–that’s a lot of blood!
Jennifer’s last blog post..Blogiversary!
Molly says:
Ug, I’m so sorry. I hope your test results will be enlightening.
Lady Lemon says:
Damn, woman! That’s a lot of blood they took from you! I hope that they can put it to good use finding out about this clotting issue.
Lady Lemon’s last blog post..I Don’t Want to Set the World on Fire
Lisa says:
Sounds like Dr. Blood (love the nickname BTW) is on the ball and you are in good hands.
Ah, the “what if” game. Try not to let it all get to you. My best friend’s son was born with Cerebral Palsy and she has played the “what if” game for 5 years now. She tries not to do it as much anymore, but she finds it hard not to questions every little thing especially since they don’t think it was a result of her delivery but rather something that happened during her pregnancy. She says it can really get her down sometimes.
Thinking of you always.
Lisa’s last blog post..Simpson Lake
KK says:
I was diagnosed with ANA (Antinuclear Antibodies) after my 2nd miscarriage. The testing was only done because I pushed for it after speaking with someone I worked with who’d gone through about 11 miscarriages. She told me exactly what I needed to research, question to ask & what testing to request. Had it not been for her, I may have been subjected to many, many more miscarriages unnecessarily. I took Progesterol for the 1st 20 weeks of my next pregnancy as well as a baby aspirin each day through out the full pregnancy. My son was born 10 days past his due date. After your testing is completed, you may want to request a referral to a Rheumatologist. The best advice I can offer is to do your research, be your own best advocate, & be a B*tch when necessary.
jean says:
Oh please, please, please don’t spend too much time wondering if it would have made a difference, would have led to fewer pregnancy complications, etc.
I have a child with autism and I have been down that path and I can tell you that it is not a happy place. (Was it the vaccines, was it my metal fillings, my rho-gam shot, the Sudafed I took before I knew I was pregnant, the plastic in his bottles…) The what if game is a lose-lose proposition.
You are in my thoughts and prayers every day.
Kellee says:
The more I hear about doctor FAIL, the more appreciative I am of the fact that my (other) best friend is a doctor, and brilliant on top of that. I am so sorry they didn’t catch this when they should have. What ifs are perhaps the worst things in life. I’m sorry, sweetheart.
Kellee’s last blog post..Wordless Wednesday – Catching up on P-365
Just Jiff says:
I hate that you may find out afterward what could’ve prevented Maddie’s passing, but I hope that you find a way to heal and learn how to prevent the same thing from happening should you (don’t hate me for suggesting this) decide to have more children. That road of what if is painful and I sincerely hope you can avoid a long trip down it. I pray for you all the time.
I think a friend of mine had this condition but somehow it was detected while pregnant. She ended up being able to have her baby and she’s also had another, so there is hope.
Am I being rude by suggesting more kids? Not that they’d ever take Madeline’s place, of course…
Just Jiff’s last blog post..Rude people in traffic.
Ramee says:
I am so sorry to hear this. I have been reading your blog and praying almost daily for you and Mike. I understand that in times like these you may just feel like it would be nice to catch a break. The Lord is near and I’m praying you feel His sweet arms around you, lifting your spirit and healing your body. I will continue to pray and hopefully you will get a solid idea of what is happening in your body. Clarity. I’m praying for clarity….
thinking of you guys often…
Ramee’s last blog post..Come to my window…
Jamie says:
Don’t focus on the coulda/shoulda/wouldas. You’ll drive yourself insane. Dr. Looove sounds like a fantastic proactive doctor and Dr Blood sounds pretty good too. You’re surrounding yourself with the type of people who can give you the help you need.
Jamie’s last blog post..Wordless Wednesday
Heidi says:
Hugs.
Heidi’s last blog post..Steps
Libby says:
ugh…as if you don’t have enough to keep you up at night. I’m slowly learning from my experience and stories like yours not to put all my trust in what doctors say. I hope you get some answers. Take care.
nic @mybottlesup says:
oh heather… the woulda/coulda/shoulda road is so dangerous. i imagine it’s impossible to not travel down that road when you’re enduring all that you are right now… but it’s dangerous my love. be careful with your thoughts.
you are in good hands. you’re taking care of yourself. that’s important.
i’m thinking of you constantly.
nic @mybottlesup’s last blog post..effing angry teenager!
Insta-Mom says:
Ugh…nothing is worse than the woulda/couldas. Hugs, my friend. Lots and lots of hugs.
Insta-Mom’s last blog post..The first test I’m glad I failed
pgoodness says:
Dr. Blood should have more o’s like Dr. Looove…. Dr. Bloood….hehe. (And yes, totally saying Dr. Blood in my dracula voice).
I’ve nothing to add, never heard of such clotting disorders and such, but I’m glad you’re learning more about your body. But please try not to do the what-ifs…. xoxo
(funny, i wrote a bloody post last night too!)
pgoodness’s last blog post..Failure to give
Tiffani says:
Heather, I have not posted to your blog before but been following your blog for quite a while. First I want to say that you are an amazing mom and your daughter Madeline was beautiful and did so well being a preemie and going through all that preemies go through! You did everything you could for her and she was sooooo lucky to have you and Mike for her parents! I am the mom of 23 weeker preemie twins. Our son passed away 10 days after birth. Our daughter Claire is still with us and was 1 year old this past Saturday. Maddie reminds me alot of Claire! The OB doctor I had caring for me during my pregnancy seemed to be great. He had alot of experience with high risk pregnancies. When the twins were born at 23 weeks it was a complete shock as I had what I thought was a very healthy pregnancy up to that point and hadnt been on bed rest or anything. Once they were born, I never heard from the OB again not even once! My husband had to go to his office to get my records as he wouldnt answer phone calls or anything. I always thought that maybe he had not checked up on something or was afraid of being sued so he just ceased all communication. The only explanation I have for the preterm labor and delivery is that I had a possible infection called GBS strep type B or something. I have since gone to a new OB and he is looking through all my medical records. It is so scary to think about the coulda woulda shoulda!!! I know it wont change anything for us but it is something we have to be on the up and up about if we decide to have another baby in the future. I am scared to death! I just want to say you are doing the right thing and they will hopefully take good care or you and do whatever needs to be done so it wouldnt be something you would go through again! Take care and know that we are thinking of you daily and praying for you and Mike! It is blogs like yours that moms who go through what we have been through find strength and support in reading! I only hope we the readers can give that strength and support back to you!
Tiffani
Jodee says:
I hope they get this all figured out. I am sorry you are having to go through this on top of everything else. Big Big (( hugs)) and lots of love!!!
Jodee’s last blog post..Our Trip….
Courtney says:
I hope everything turns out ok for you! I can’t imagine what you are thinking about if the other doctors had checked? Always in my thoughts and prayers.
Courtney in New York
Courtney’s last blog post..Thought of the Day
Christian singles says:
I hope you’re able to read this comment. I think that taking Omega 3 Fish Oil, if you aren’t, will do wonders for your potential clotting issue. The research is stacked concerning Omega 3. You need to get a high quality brand (Carlson is a very good one) and you need to take a considerable amount. To start with, try to take 3 with breakfast, lunch and supper for a total of 9 a day. Most medical doctors are starting to tell their patients to take fish oil. It is especially good for clotting problems. Please look into it. Ask your doctor if you have doubts.
Lindsey says:
I went to a specialist yesterday who basically told me that some of my fertility issues could have been “preserved” if had been taking a birth control pill continuously, not having periods. I mean, preserved fertility, that’s a big deal . . . and such an easy thing to do. It’s frustrating when doctors drop the ball, I so hope that you get answers soon.
And I’m really glad that doctor never hurt Maddie.
Lindsey’s last blog post..Uterus Fail
badassdadblog says:
If it does turn out that this was the reason things were so difficult when you were pregnant with Maddie, I can’t imagine all the conflicting feelings and thoughts that will bring. I hope somewhere in there will be some comfort, or at least satisfaction, in having an answer. An explanation. And a new set of tools you can use as you look ahead, should you decide to have more babies. It’s so hard not to look back and think about what might have been had you known. There’s not much point trying not to do that. But maybe you can spend the time you need there and move on, knowing more than you did, looking ahead. So much love to you and Mike and Maddie.
badassdadblog’s last blog post..tuesday and everything after
Amy says:
I’m glad you are getting the testing done, I’m sorry it could not have been earlier and now you have even more “woulda/couldas” to think about.
Amy’s last blog post..My frugal "topsy-turvy"
Debby says:
How nice of your doctor to take the time to talk with you about Maddie. She must have cleared her schedule for your visit. It’s bittersweet information leaving you with all kinds of scenarios and that sucks. I wish that I could turn off the switch in you mind and you could only focus on how this information will help your furture.
Debby’s last blog post..SHE LOVES ME, SHE LOVES ME NOT
Amy says:
The “what if” game is the worst game to play. But you are human and SO many of us play that game all the time. It seems so unfair to be dealing with this on top your your grief too. I am so sorry my dear!!
Alexandra )(? says:
Your words can be amusing and heart wrenching at the same time. I’m so sorry that you have to go through this. I totally hate the what if game. It’s pointless, yet you can’t get it out of your head.
P.S. I know that this isn’t going to comfort you and it isn’t meant to, but I just thought I’d point this out: if things could have gone differently if your OB had bothered testing your blood, he or she is going to owe you a pretty penny.
Anna says:
5 1/2 years ago, 2 weeks after giving birth to my daughter, I suffered a severe stroke due to having APLS. My girl was born at 35 weeks gestation and thankfully she was ok and I have had a successful pregnancy since then. I had to be on Lovenox shots even before conception all the way up to one week pre-delivery. I took heparin shots throughout giving birth to my son and also for 4 weeks postpartum.
I don’t really know why I’m boring yo with all the details and I suspect that getting pregnant again is the LAST thing on your mind but I just wanted you to know that if in the future, when/if the issue arises, that you guys want to give your sweet little angel a sibling it is totally possible.
Anna
Becky says:
The what-if game makes me sick. I’m so sorry. Another thing to wait and worry about.
Becky’s last blog post..Damn You Staph Aureus!
ali says:
oh, hon, I hope you get some answers. I wish I could hold your hand while you wait.
ali’s last blog post..do I even want to know?
Karen McB (carebear) says:
I just found your blog a couple days ago and have devouring it every since. I am so sorry you are on this journey My son was diagnosised with a fatal birth defect in utero and was only given a 5% chance of making it to birth. Next week we will celebrate his 1st birthday (though we weren’t supposed to celebrating until August when he was due). I have no words of comfort, as I have never been in your shoes…but I wanted to tell you that I will be adding your family to the prayer list at church in hopes that you will find comfort, strength and peace in carrying on the memory of you beautiful little girl. My older 3 yr old son saw her picture and asked if they could play together…I told him one day they will. Seeing her videos and pictures brings both goofy grins and bittersweet tears. I thank you for sharing her with us.
And please, don’t do the “what if’s game”. I did that with Matthew when he was first born, a preemie in kidney failure. What did I do wrong? What if I could have done more? It will eat at you. Vent it and leave it. I’m glad you and your husband have a loving relationship and are helping each other. Please let me know if there is anything I can pray for specifically. Lots of love and hugs!
Karen McB (carebear)’s last blog post..numbers
sue says:
God wanted Maddy more than you wanted her and for your own peace of mind, you both should leave it at that. Maddy came into your lives for a reason and for a season. Once her purpose in life was over, she returned to God.
Completely trust, rely and depend on God everyday of your lives and look after your health. Lead your lives without regrets and that will give you good emotional and mental health.
Chiropractor says:
Medical folks are imperfect people too, but I don’t understand why certain standards are not always applies. You know, certain tests. But maybe you were a special case. I wish you better health and wonderful days ahead!
Jenn says:
Hi Heather,
I’m so sorry to hear you’re having to go through so much right now but, the good news is once it’s done, it’s done. Hopefully you’ll get some good answers so if you and Mike do chose to have another baby, hopefully you’ll have an easier pregnancy and will be able to carry your baby to term.
Good luck to you both and please never forget….You are NEVER EVER ALONE!
My Best,
One of your many new friends,
Jenn
admin says:
Sue,
There is absolutely NO WAY that ANYTHING wants my daughter more than I do.
Please think about your comments before you leave them.
Heather
Blondie says:
I have APA’s too, discovered after we lost our daughter when I was 21 weeks pregnant. I have since gone on to have two successful (term) pregnancies. IMHE, APA’s is not something that’s typically tested for in pregnancy, mostly as the presence of APA’s in pregnancy does not mean you have the syndrome. Also 1 positive APA in a non pregnant state does not mean you have the syndrome so you need to be tested at least 3 times over 6 month period. You really need to see an immunologist. I’m a walking encyclopedia of all things APA so please feel free to give me a shout if I can help in any way. The treatment for APA’s is Heparin or Lovenox (injected) throughout the pregnancy as well as Baby Aspirin for life, as your risk of stroke is slightly higher.
cindy w says:
Sue, really??? Heather & Mike are supposed to just shrug off the death of their child as “eh, God wanted her more, c’est la vie,” move on, and forget about it? People like you make me ashamed to call myself a Christian. You think Jesus would approve of you trying to tell a parent how they should grieve the loss of their child? How dare you.
cindy w’s last blog post..28 months
Katie says:
Heather I am so sorry. Your daughter was beautiful. I hope you are able to go on to give her siblings that will know what a special little girl came before them.
Mr Lady says:
Oh, baby. I’m so sorry.
I’m not touching Sue’s comment, not with a ten foot pole.
Mr Lady’s last blog post..I Give Myself Very Good Advice…..
pgoodness says:
Heather, don’t listen to idiots like Sue. In fact, you should delete her…or let the rest of stalk her.
xoxoxo
pgoodness’s last blog post..Failure to give
Issa says:
Sue, that is one of the most harsh, horrible comments I have ever read in my life. (and I got told to go kill myself yesterday) You should be ashamed of yourself.
Heather, some people are just horrible. But you are absolutely amazing and one of the strongest people I know and we haven’t even met yet. Please, please delete her. She isn’t worth the space on your beautiful site.
I adore you and Mike and your beautiful angel, Maddie moo. I will never forget her. Never. Woulda, coulda, shoulda is easy to play. And I understand it. I wouldn’t bother to tell you not to do it. But that beautiful girl of yours was a gift too us all. It wasn’t your fault what happened to her. You loved her every, second of every day and that is what is important. She left this earth knowing true love. Every person should know that kind of love.
Issa’s last blog post..Why it bothers me
moosh in indy. says:
Emily and I are eating bacon, salty cured italian bacon on carbs with cheese.
There is good in the world.
And then there is ^her^
Focus on the bacon.
moosh in indy.’s last blog post..namecalling.
avasmommy says:
Sue, NOBODY needed or loved Maddie more than Heather and Mike. I can only assume you’ve never lost anyone close to you or you would know what an asinine remark that was.
I can’t do better than Issa’s comments, so I’ll leave it there.
avasmommy’s last blog post..Revelations
Andrea's Sweet Life says:
I hope that with a diagnosis, you’ll be able to focus on what it means for the future rather than what it means about the past. I hope, hope, hope, but I know that doesn’t necessarily make it easier to stop thinking about it.
Ignore the Sue’s of this world. There’s no leaving it.
Andrea’s Sweet Life’s last blog post..The Little Guy
Marinka says:
I’m so sorry, Heather. (and I agree, shouldn’t it be Dr. Blooooood?)
xo
Marinka’s last blog post..Internet Safety
Dina says:
Heather,
Everyone who reads your words unquestionably knows that Maddie belongs nowhere more than here, in your arms, with the parents she loves. There are good things about religious views, but it irritates me when people use their views and cause others pain, even if unintentional.
I have almost the opposite of what your doctor suspects you have – my bleeding time is faster than average because my blood clots slowly. I was tested for Von Willebrands before a surgery about 10 years before I became pregnant. So I actually never take aspirin.
I think it’s only human to play the “what if” game, especially if something that seems so easily fixable appears to be right there. Everyone does it, but please, please take it easy on yourself. I know that you will channel your energy into a direction that will provide answers and hopefully, when/if you are ready, onto a path to an easy pregnancy.
Best of luck to you right now. I am so glad that you have caring – and competent!! – doctors now on your side.
PrincessJenn says:
Sometimes life throws things at us so fast and hard there isn’t time to do anything but deal with things in the moment. It’s easy to play the ‘what if’ game after the fact, but there’s never any guarantees that, even with more knowledge of the situation, it would have changed anything. Right now, you’re doing an amazing job at dealing with everything life has thrown your way. Maddie may not be physically here, but you’re still her mom, and she’s so lucky to have an amazing mother like you.
PrincessJenn’s last blog post..Uneven Equality
moosh in indy. says:
And the COULDA WOULDA SHOULDA WHAT IF GAME IS MY FAVORITE. EVER. SRSLY.
moosh in indy.’s last blog post..namecalling.
Maura says:
Waiting to hear news you’re not sure you want to hear, either way, sucks. So does the way our minds insist on playing those “what if” games on us. Not as much as mindless holy (t)rollers who tell us their god is the answer to it all suck, but a lot.
Maura’s last blog post..Ping: A Short Bite
Undomestic Diva says:
Wow, Sue. In a single comment you’ve managed to put a dent in my faith in humanity. Fortunately, in the weeks since Maddie’s passing the number of thoughtful, considerate and generous people I’ve met and read and seen far outweigh those like you and for that I am grateful.
Undomestic Diva’s last blog post..You so funny
rachel-asouthernfairytale says:
Heather,
I love you.
sam {temptingmama} says:
I second Dr Bloooood. (Or third, whatever)
And that comment? What the hell ever. That makes me so mad I can’t even tell you. (wel, I did tell you but you know what I mean).
Love you both.
sam {temptingmama}’s last blog post..Time to Lighten The Mood…And Your Hair… Down There
Undomestic Diva says:
Also – I wonder if there are any similarities between Antiphospholipid Antibody Syndrome and ITP (the body attacks its own platelets, depleting them and not allowing you to clot) which I experienced with all three of my pregnancies. Waiting is the worst. XOXO
Undomestic Diva’s last blog post..You so funny
lyndsey says:
Heather, please keep us posted. I’m starting to wonder if perhaps I have this too. Seriously. I was in touch with you before about the clots I had with my first pregnancy, my 20 week miscarriage and the two miscarriages I had following that. I switched OBs and he had me on a baby aspirin daily and my two miracles are now 2 and 4 years old. He never tested me for the syndrome, I don’t think, but I swear it was the aspirin that helped my babies be born.
Take care of yourselves. You’re in our thoughts and prayers,
Lyndsey
Jackie says:
One more thing to deal with. Just what you need.
I hope that Dr. Blood brings you more answers and solutions than questions soon.
Love you pretty princess.
cjrymommy says:
Heather, I read everyday but don’t always comment. Please DO NOT listen to Sue. While I believe your beautiful little girl is playing in heaven, in no way did anyone want her more than you and your husband!! Oh and Sue, her name is MADDIE not Maddy. Sorry, but that bothers me!!
Love to you both from a stranger in STL.
cjrymommy’s last blog post..Memorial Day Weekend
Nickie says:
@ Sue- seriously? Are you a mother? Do you have kids? Do you believe the crap that spews out of your mouth? Spout that crap to the mirror because nobody else wants to hear it. What kind of person are you to say such a thing to a grieving mother? What kind of Christian do you propose to be? YOU are the very reason Christianity gets a bad rap.
Nickie’s last blog post..Signs your 3 year old has been watching you…
Heidi says:
This may sound strange, but I’m glad they found out about the Antiphospholipid Antibodies, because that means you have an answer and there IS something you can do to have a successful, healthy full-term pregnancy again if that is what you want. I know because I also have it along with ANA and anti-thyroid antibodies. I also was able to have two successful, healthy full-term pregnancies after my first miscarriage (which is how we found out that I had these clotting issues). Granted, I was closely monitored throughout my pregnancies and also had to take prednisone, baby aspirin and do heparin injections (2 -3 times daily), but it was all worth it and ultimately it really wasn’t that big of a deal. (Yeah, I figure I between infertility treatments, IVFs, and heparin injections, I’ve given myself thousands of shots.)
Of course, I’m so sorry that you went through what you did and that Madeline was born so early and suffered so many health problems. My understanding is that these issues are not tested unless there is reason to suspect problems, usually through recurrent miscarriages or premature deliveries. I was fortunate that my Reproductive Endocrinologist tested me for them after my first miscarriage rather than make me go through 3 before testing, like a dear, close friend of mine.
As hard as it is to hear, I do believe it’s good to know what you are dealing with so that you can, hopefully, treat the issue.
I cannot express enough how very, very sad I am about Madeline’s passing and how my heart breaks for you and your husband. I cannot imagine what you are going through. Your post about Madeline’s little handprint hit home for me, as I have another friend who lost her little girl who commented that she could not ever wash any fingerprints or handprints off her walls or windows and that when she was forced to move homes she thought she simply couldn’t leave the last place her baby had been with them.
My thoughts are with you. My heart aches for you. I keep thinking about if I were in your place how much my arms would ache to hold my child and my heart breaks again for you. Madeline was beautiful and I’m so glad you’ve shared her spirit and her beauty with us all.
Jeffra says:
HHHmmm…Sue…what should we do with you…be careful what you espouse…one day it just might come back to bite you…wonder if you will feel the same when you lose someone one day…inevitably it will happen to us all.
Heather
Can’t wait to see you Saturday and give you looove…but also..this is exactly why we need to advocate and implore the medical community for more thorough prenatal testing to catch these issues that can be preventable in some cases. I know DNA testing is expensive…but it should at least be an option we are aware of and can choose to test for…thoughts??? We talk more later…xoxo
Melanie @ Mel, A Dramatic Mommy says:
The Woulda Coulda Shoulda’s are a scary road to go down but I think all of us have been there at some point. Try not to drive yourself (too) crazy.
Sue: this is Heather’s space so I will keep my initial thought to myself but that was one of the most un-Godlike things I’ve ever read.
Melanie @ Mel, A Dramatic Mommy’s last blog post..Meet Me at the (San Diego) Zoo
LU says:
Heather I know (personally) that the what if’s and whys can tear you up. I know with your strength and dedication to The March of Dimes you can get this out there so that EVERYONE w/similar characteristics gets tested. Much love and strength to you and Mike. (((HUGS)))
SusieO says:
Two things…
The comment about the nurse’s gentleness totally made me tear up. I hope the realization of her gentleness with Maddie warmed you and your memories.
Sue can suck it. And she made me tear up… in outrage that someone can be so hurtful. It depressed me… til I thought of Maddie’s face and smiled again.
xoxoxoxo
Creepy Mommy says:
Sue, you obviously made a wrong turn somewhere. Time to hit the road.
I can not believe someone would say that to a grieving parent. Now, I really don’t condone physical violence, but seriously? I kinda sort of want to punch someone in the face right now. Oy vey.
Creepy Mommy’s last blog post..wordless wednesday
Lex ~ @laprimera says:
Heather (& Mike) please know and believe that there are thousands of people out here that pray for you and Maddie and know a loving and generous God. Sue is sorely misguided and so thoughtless in her comment!!!
Maddie was a gift to you and so many of us. She has touched so many lives. You both have also touched mine.
The what if game is cruel. It’s hard not to think that way when you have been made an unwilling participant. I hope Dr. Blood (would that be Carlisle from Twilight? heh!) gives you the right answers and the treatment!
I love you both! Sending many hugs to you today. Focus on the bright light that Maddie continues to be. xoxo
nic @mybottlesup says:
heather- if i could protect you from the inconsiderate and inhumane bullshit that sue vomited on you, i would. i would build a wall that consisted of maddie’s heart and smiles and laughs and giggles and silliness. i would build a wall of support that your friends/strangers would hold strong and high for you, creating a fortress, a barricade from the stupidest bullshit i’ve ever heard… ever.
shame, shame on you sue for posting that… suggesting heather and mike “should leave it at that.” as if a grieving parent can “leave” anything… any memory, any kiss, any scent of their child’s effervescent presence.
how dare you. how. dare. you.
nic @mybottlesup’s last blog post..effing angry teenager!
PsychMamma says:
Sending hugs and a little more strength to deal with all the crap that’ getting thrown at you (including Sue’s horrible, thoughtless words above).
Any unknown medical stuff is unsettling and worrisome. Add all your other circumstances and it borders on overwhelming. Know that you have this wonderful support network thru all the woulda/coulda/shouldas. I’m just an email away & will do whatever I can to help you, whatever that might be. Lots of love & hugs!
PsychMamma’s last blog post..Chicken Pox Parties and Vaccinations
PineappleBabble says:
Sue. Seriously. SHUT. UP.
As a mommy, I can for sure, and without a doubt say that is possibly one of the most ridiculous comments I have ever seen posted. Please do not attempt to speak for God or for this family dealing with a truly tragic and life-altering experience. Try (TRY) to speak for yourself. I’m sure God loves Maddie very much – but a mother’s love is infinite and impossible to define. Now I’m crying.
My heart aches for your family and your loss. I wish you all the strength and love and fortitude possible. God bless your family during this difficult time.
PineappleBabble’s last blog post..Naughty Auntie!
Davezwife says:
I belong to a mom’s group online that has many many women who have delt with infertility issues, and many have clotting factors as well. Common ones I see are MTHFR and Factor V, and the one you mentioned. Most, if not all, take some minor medicines to help future pregnancies, and are fine. (if that’s the road you take someday)
I myself are being tested as we speak, for I just lost my 5th pregnancy yesterday. It’s scary to think there’s something “wrong” with me… yet I am looking forward to having every anwer I can in my arsenal.
My thoughts are with you. (and your husband… how’s he doing?)
Davezwife’s last blog post..Slap.
Domestic Extraordinaire says:
Dude, that is a lot of blood. I would nickname the nurse who took it all Vampiria.
(((hugs)))) knowing things after the fact that may or may not have changed outcomes is very hard. I will be thinking of you xoxo
Domestic Extraordinaire’s last blog post..I go from crazy to shampoo in 6.5 seconds flat
Colleen says:
GOOD Lord! After reading what I read above by “Sue” I have to wonder if people realize what they are saying when they type that kind of absolutely ridiculous statement.
There is nobody in this world who wanted Maddie more than her mom & dad and to even INSINUATE that “God” wanted her more is outrageous. You need to take whatever ridiculous beliefs that you have and WRITE THEM ELSEWHERE!
Colleen’s last blog post..The Devil doesn’t always wear Prada
CorningNY says:
Heather and Mike,
I think, as in so many situations in life, it comes down to the fact that you did the best you could with the information you had at the time. Thinking, “If only we had known” doesn’t change the past. Maddie was born, you loved her with all your heart and in return she brought you great joy. That’s what matters.
I hope you both find peace.
Kellee says:
Wow. I left my comment before Sue showed up. Freakin’ insane. I had this same furious, pit-of-my-stomach response while reading Mike’s blog as well. He wrote “People have told me that Maddie is in a better place, that she is now with one who can love her more than Heather and I could.” Seriously, who SAYS this stuff to people? I do not believe for one second that anyone or anything could possibly love that little girl more than Heather and Mike. And while I generally believe that they mean well, I really want to punch people in the face for saying things like that. I’m sorry Heather. Love you!
Kellee’s last blog post..Wordless Wednesday – Catching up on P-365
H. says:
The second pregnancy after a complicated first one is very scary. I am not someone who freaks out, but when the OB said there was a 95% chance of me NOT having a normal pregnancy after my son was born at 32 weeks (massive and sudden P/E), I was devastated. I went high-risk the whole way for #2, testing for all the clotting disorders, etc. Nothing came up, and the PE did come back, but later in gestation. I was scared until the day she was delivered.
All this to say… it’s easy to believe all the answers are there if we just look hard enough, so we can prevent the bad things from happening. But there is so much that doctors and Medicine (the science) *don’t* know. It’s scary to go forward with a leap of faith that may or may not turn out. I am wishing nothing but good things for you from this point forward.
Glenda says:
Thinking of you and sending you hugs! I love the nickname Dr. Blood Keep us posted! XO
Alexandra says:
Shuttup,Sue. Just shuttup.
Lee Wilson says:
Sue,
There’s no need to blame God or suggest that Heather didn’t want her daughter enough. God doesn’t work that way! Cause and effect is what took Maddie. She is safe with God, but not because God wanted her more or some philosophical nonsense.
Ellen says:
Hi, I’ve been following your family’s story for quite a while now. I also have a preemie, she’s a 30 weeker born weighing 2 lb 4 oz. I had developed severe HELLP syndrome and full blown eclampsia and had an emergency c-section less than 3 hours after I was found having a grand mal seizure at home. My sweet Violet had IUGR and clots in the placenta. So… my docs ran blood tests for a zillion things and found I have APS, too. My hematologist had me get the tests run about every 6 weeks until my baby was 8 months old or so to “prove” that the positive results were consistent. I hope they don’t do that for you– I felt like I was running out of blood! Now I’m on baby aspirin everyday and (if my new OB says that I’m allowed to) will need daily Lovenox injections with any future pregnancy. It’s helpful to have a medical reason for the prematurity because then it’s kinda not my fault (I’m sure you know the guilt involved), but also scary because it could definitely happen again. I don’t know if anything I could say could really be helpful to you, but I just felt the need to connect with you and let you know how much you are in my thoughts. Feel free to contact me if you get the chance, but I can see you are a busy gal!
Brie says:
I’m sorry to hear this.
Lauren says:
How frustrating it must be to have another thing to deal with in the midst of all of this. I’m thankful you have doctors who are smart and proactive and hoping this all turns out to be nothing or something easily resolved.
Lauren’s last blog post..Laugh.
Loralee says:
I hope your disorder is manageable. I have managed my clotting disorder and while it can be really stressful, being on thinners and getting frequent ultrasounds has really helped.
Man, as if you weren’t in enough suck. But at least someone is looking at the problem and hopefully there is a good treatment that won’t endanger any future children.
xoxoxoxoxoxo
Loralee’s last blog post..What we’ve been up to the last week…
Mar in the mn says:
I came over to you blog from Matt Logelin’s blog, I’ve been reading your blog for awhile now. Just wanted you to know that I pray for you and Mike often. You gave Maddie such a beautiful time on earth, I read your blog and see how much you love her still. Ignore people and their insensitive comments. God loves Maddie, you, Mike, and all of us more than we can grasp. That DOES NOT mean He loves Maddie “more” than you, just differently.
tara says:
heather, i’m so sorry you have to go through this. thinking of you…and every day i send you, mike and beautiful maddie a giant hug.
and sue – go crawl back under the rock you came from. and keep your horrific comments to yourself.
Alyssa S. says:
Ugh…I just threw up in my mouth a little. What is wrong with you, Sue? When I was in the process of losing my first baby, a co-worker told me “God has a reason for everything and apparently He needed this baby in Heaven. It’s a part of His plan.” I told her to mind her own f**king business; it wasn’t a part of MY plan!
Heather,
I found out later that there was a health/medical reason that could have made a HUGE difference in my IUI’s, my 1st IVF-possibly making my 2nd IVF unnecessary, preventing my 2nd pregnancy loss…when I start to think about it all too much, I get upset, angry, sad…and since there’s nothing I can do to change any of it at this point, I start singing a Little Texas lyric in my head: “I try not to think about what might have been, ’cause that was then and we have taken diff’rent roads…” If things hadn’t been done the way they were, I wouldn’t have my daughter from IVF #1 & my son from *SURPRISE*. Everything I’ve been through in my life has made me who I am. Maddie made your life & the lives of thousands of others richer in her short time on this planet…and I didn’t even know of her until she was already gone, so she continues to bring people together…now that’s a special little girl.
Haley-O says:
I hope you get some answers quickly – you don’t need the stress. Thinking of you….
Haley-O’s last blog post..I Showed Howard (or His Temp) My Squirrel….
Jenn says:
There are many extra blood tests Ob’s can perform, but don’t right now. Factor V leiden is a huge debate on pediatric strokes. I personally believe (and so does my hematologist) that it can in fact cause strokes in utero. It’s a SIMPLE test, and if someone has factor v they should NOT be on birth control, but yet again they don’t test. Even tho 20 % of the population has the disorder. Turns out I had an underlying platelet disorder (a bleeding problem), and if my husband had factor v it was a stroke waiting to happen!!! I am sorry they didn’t test…..but there is no use in looking back. A doctor told me once to make my decision to move forward, and never look back regarding what caused the problem. I personally couldn’t do that. I still research, and I still raise awareness. Hang in there girl!
Jenn’s last blog post..Softball games, and innocence
Ginger says:
Coulda woulda shoulda is my middle name! I read this and wonder if my excessive platelets contriubted to the IUGR and low birthweight first baby, who was a 34 weeker, but honestly, she is great and I should let it go. Gotta lotta CWS with the baby who now has Cerebral Palsy from a medical crisis that happened in the hospital. Should they have known better? When should they have acted? What should I do about it on behalf of my daughter?
Heather, you will think about these things because that is what mothers do, all you can do is try to stay healthy – in mind and body.
Be careful with you, dear.
Ginger’s last blog post..The doctor your mother warned you about
Leslie says:
Seriously, Sue. Seriously? Heather, I’m so sorry you guys have had to deal with any of this ignorance at all. When I was 5, my kitten “ran away” while we were out of town visiting my crazy Aunt (do you have one? I think everyone does!) and she said something like that to me, i.e. God wanted him, blah blah, bullshit bullshit. I was 5 and I was horrified. My mom told me right then that my Aunt? She was crazy. It’s been 20-some years and Mom was right! Sue? You’re crazy. Keep smokin’ whatever you’re smokin’ or drinking that special Kool-Aid, but do it somewhere else. No one here needs your kind of “wisdom.”
Heather, I hope you find some answers and some peace in those answers for the future. I think about you and Maddie and pray for you all every day.
Mary from WA says:
Oh God! WTF? I’m so sorry you are going through this now…
Medical what ifs suck. I’ve played them myself…what if that 1st neurologist believed me & ran simple blood work…what if my neuro probs had been caught 2 years earlier…what if this…what if that…would I be healthy & able to have a normal life now? Well, while having 20/20 hindsight is wonderful, it can also drive you literally crazy.
Hang in there. You are in my prayers & thoughts even more now (if that’s possible!).
PS-glad the vampires are being gentle with you!!!
Mary from WA’s last blog post..My Grandmother’s Purse
Mary in Texas says:
Heather-I know part of what you are going through with the clotting diagnosis. After 3 years and 3 miscarriages, an RE finally ran a blood panel and discovered I have Factor V Leiden, also a clotting disorder. I had to go to the hematologist, which was really scary, and then she thought I was also a hemopheliac. (Medical confusion at its best: They thought I was a clotter and a bleeder at the same time.) Thankfully, after a genetic test, I know I’m just a clotter. I got pregnant and saw a BAD ASS high-risk OB who was all over my condition, put me on daily Lovenox shots, and saw me weekly throughout my pregnancy. For every doctor who misses something out there, there are doctors who don’t. It just sucks that it takes tragedies and heartache to get the attention of the doctors who are on the ball.
Boy is it easy to wonder what if. I certainly won’t tell you not to go there…how could you not? Hopefully all this bloodwork and having the right doctors on the case will at least sort of out any medical mysteries and protect YOU as well as any future pregnancies.
By the way, the picture of Maddie’s partial handprint was like a sucker punch to my gut. I can only imagine how it made you feel.
Kristen says:
big hugs to you and Mike….hang in there – thinking of you all, always.
Yo says:
sigh.
Yo’s last blog post..polly ticks
Deb says:
@ Sue – Who do you think you are? WTF?
Heather – I’ll add to those who say not to go down the “coulda woulda shoulda” route. It won’t change what’s happened to you, Mike and Maddie. Don’t go there. What would be accomplished? ON THE OTHER HAND – so glad you’ve found a great blood doctor and Dr. Loooove is fantastic. Knowing whether or not you have AAS will help to ease your fears if and when you become pregnant again. Knowledge is a powerful thing and knowing that you’ll have proper treatment will make the process much easier.
That said, it’s tough not to wonder. Worry. Share with us…your friends are here. Praying and thinking of you daily.
Catherine says:
Heather, just letting you know that I send out positive thoughts to you and Mike and Maddie every day. You have lived every parent’s worst fear, and there is nothing any of us can say that will salve that wound, but I wanted you to know that I send you cosmic good-will and positive feelings everyday.
The woulda-coulda-shoulda game will just make you sick with regrets. Instead, I hope that whatever you learn from Dr. Blood will prevent any complications in future pregnancies. *love and hugs*
Brittni says:
Hi, I’m new here and I wrote you this email that didn’t go through to thesporhs at gmail dot com. Do you have a new address that I could send to? You can contact me at feminist137@yahoo.com if so. Thanks.
Kristen says:
Chris is playing this and singing it in the kitchen right now as I type this, wondering how to say what I want to say, I think I’ll just share the song and leave it there. It’s for You & Mike & Maddie, and it’s how I – how all of us – feel about you. Love forever, K
If Not For You
If not for you,
Babe, I couldn’t find the door,
Couldn’t even see the floor,
I’d be sad and blue,
If not for you.
If not for you,
Babe, I’d lay awake all night,
Wait for the mornin’ light
To shine in through,
But it would not be new,
If not for you.
If not for you
My sky would fall,
Rain would gather too.
Without your love I’d be nowhere at all,
I’d be lost if not for you,
And you know it’s true.
If not for you
My sky would fall,
Rain would gather too.
Without your love I’d be nowhere at all,
Oh! What would I do
If not for you.
If not for you,
Winter would have no spring,
Couldn’t hear the robin sing,
I just wouldn’t have a clue,
Anyway it wouldn’t ring true,
If not for you.
Copyright ©1970 Big Sky Music
heather says:
I have the same disorder as Aurelia, and I’ve also done the lda/lovenox route (6 weeks through 6 weeks post). It took four doctors for me to find one to say, “what the…” So I’m glad you’ve found one, but it sucks that it takes so much to get someone to see the flags waving. Thinking of you and your beautiful little blond girl, as always.
merlotmom says:
Hey sweetie,
Sorry that you’re now going down that painful woulda, shoulda, coulda road. Shit. As if you needed another layer to the senselessness of Maddie’s passing. I do hope, though, that this doctor can accurately diagnose you and that it’s something easily treatable should you choose to have more babies in the future. Oh, and I’m sorry you had to read that comment by “you know who”. You did not deserve to be hit with such ignorance. xoxo.
merlotmom’s last blog post..Children of the Recession: The Education Blame Game
Kristen says:
“Until then, all we can do is wait and wonder.”
And keep going. I hate that even if we get the answers we can’t change how it went. We’re here to walk with you through the hurt of “what if”. Don’t listen to anyone who tells you to do this or not do that. Listen to yourself. You are a wise woman, you are connected to your own soul, you stay in the cave tangling with this as long as you need to and we’ll stay out here holding up the moon.
JoAnn says:
I am a Christian. Well- a Catholic, actually. And I have a shred of faith left… But I have to say this- and do not mean this as a blanket statement against Christians.
Sue, you’re a f*cking idiot sheep. So knowing this- I would encourage you to follow your crazy, looney flock right off a f*cking cliff. It’s troglodytes like yourself that have turned me from organized religion. You make me SICK.
Heather- I don’t know you. And yet, I hurt so badly for you. I think of you and your husband and your beautiful daugher so often. No one wanted her, no one deserves her, or loves her more than you. NO ONE.
Jenn says:
Hi Heather and Mike,
I read your blogs daily and am inspired by your courage to record your feelings and emotions. I have not left a comment until now and I am sorry to say that it was the insensitivity from a certain comment that made me sure that now was the time.
I found your blog through Twitter about 2 weeks before Maddie passed. I remember thinking how beautiful she was, that big bright smile showing off her budding teeth. I, along with so many strangers, was just blown away when news of her passing spread along the internet. While there is no comforting word that could ever bring her back, please know that all the people here posting everyday are aware that there is no better place for Maddie than in the arms of her mommy and daddy. I wish there was something better to say than “I’m sorry” but there isn’t. I hope somehow you can find some kind of solace in knowing that Maddie has touched millions of people all over the world and that no one will forget her, ever. I, myself, know that the image of Maddie busting a move in her chair or the wonderful sound of her Wows, those moments are forever glazed in my brain.
I thank you for sharing her life with us and the only way I can show my appreciation is to share your story with others and support The March of Dimes.
Ninabi says:
What a discovery in the lab work.
I can’t imagine that the results would give mixed feelings. I guess I’d be angry that somebody in the medical field didn’t think about this disorder during your pregnancy with Maddie. But I’d be comforted, a bit, in knowing it could be treated in the future.
I am so sorry for all that you went through. I think about you every day and how much you love and miss your dear Maddie.
Cindy says:
Ugh. I’m so sorry, Heather. I know the ‘what if’ game well, it’s impossible not to go there. One of the hardest things in life is trying to move on from a past that you would give your entire future to change. It must be so strange to have this possibility of answers all of a sudden. You remain in my thoughts….
Also – SUCK IT, SUE!
Cindy’s last blog post..Dudley’s new bed.
Digital Body Fat Tester says:
Wow, cool site. Thanks for posting. Really like reading sites like this. Drake
MommyNamedApril says:
Hi Heather – I have antiphospholipid antibody syndrome and have had two successful term pregnancies since the diagnosis. If you have any questions whatsoever or ever want to chat about it, please please feel free to drop me a line. mommynamedapril (at) gmail (dot) com
-April
MommyNamedApril’s last blog post..How Do I Love My Gramma’s House? Let Me Count The Ways…
MommyNamedApril says:
and (((hugs)))
MommyNamedApril’s last blog post..How Do I Love My Gramma’s House? Let Me Count The Ways…
Alexicographer says:
Yikes. I have to say I think one of the worst things that a person could experience, beyond having a child pass away, would be to learn that it might have been preventable. I’m so sorry you’re contemplating that possibility.
I came to your blog only recently, but I do wonder why given the clotting you describe experiencing in pregnancy, your doctors didn’t recommend tests. I don’t, just to be clear, wonder why you didn’t. They’re the experts — you’re not. And I do know enough about these issues to know that testing for clotting disorders as a cause of problems in pregnancy is a relatively new and somewhat controversial area. Still, my opinion is that doctors should tell patients about controversies and let the patients decide far more often than they do (as often as not, I don’t think that withhold information, but instead are just not themselves current. I don’t know which is worse.).
I hope you’ll get clear answers. I don’t know whether to hope they’re positive, giving you prospects for a problem that can be effectively treated if you want to become pregnant in the future, or negative, eliminating the CWSs.
It saddens me to see the sort of hurtful comment that appeared on this post, but I think you do the right thing by leaving it there. You, and other parents who experience loss, have to deal with this sort of stupidity; your readers should know that.
NoL says:
Heather- with so many things right now, I am sure this isn’t the time- but if it turns out this was the thing that could have led to a different path, and that some day we, as cyber friends, can get the word out to other women who may need this test, can mobilize somehow to prevent this awfulawfulawful thing for another family, please call on us. I know nothing about how testing protocols get changed, but if you need me to, I will knock on every OB practice in Portland Maine and pass out leaflets or whatnot.
K says:
I’ve been tested for APLS too. I lost my baby at 16 weeks gestation due to pPROM (just like you had with Maddie) and there were clots involved. I’ve actually tested negative for all the antibodies so it just leaves me wondering. But I actually had to ask to be tested and was told the medical community normally only tests for it after three miscarriages orsomeone has a stroke or something. That’s crazy!
I’m glad your GP is so perceptive and you are getting the testing. No one should have to lose a child because they were not tested for APLS! I don’t understand why it’s not a standard preconception or at least prenatal test for all women.
K’s last blog post..Nurse Ratched
Debbie B says:
Sue – WTF????????? Are you really that stupid?
fsh says:
Sue, you are a bitch. Go away and don’t come back.
Heather,
Waiting for medical answers blows-I’ve done it more than once with my son (congenital heart defect diagnosed when I was 20 weeks), I know. I also know a girl who has APLS- she had and lost her first at 25 weeks. I do believe that it is pretty rare and not something they automatically test for unless there is a reason (and I live in NYC where they automatically test for alot more than most places-though obviously not enough). She went on to have another little one a year or two later. I hope that it all turns out ok and if not, that you get the best treatment possible. Sorry you have to go through this on top of everything else right now. Good luck!
fsh says:
p.s. as a lawyer, the fact that you had TWO clots should really have tipped SOMEONE in the direction of testing for it.
Barb Miner says:
I love your nickname for the doctor and it is very good that you went to follow up with this. You have been your last priority for the past 2 years so it is not surprising that it is only now that you are looking into it. I do not have a blood disorder (at least not one that they have found) but I for the past 3 years have seen numerous specialists to find out what caused my blood pressure to raise to seizure/heart attack levels while I was pregnant. Because of my blood pressure I was forced to have my daughter at 26 weeks. I have yet to have a doctor that can give me a concrete answer on what happened or why it happened. Although I have been advised by several that it is not in my best interest to become pregnant again no one can tell me what happened. And some doctors have mentioned things that should have been tried and questioned stuff that was done but no one really knows. It is amazing with the technology out there that so many things are left in limbo. I understand your frustration with the lack of an answer.
Barb Miner’s last blog post..Pooh Bear
cindy says:
Sue, you are a freak. Crawl back under the rock you came from because your “purpose in life” was over a long time ago.
cindy’s last blog post..Ten Randomly-Ordered Questions for Which I Need Answers
Rose says:
crazy religious people should not be let out in public. that was a horrible comment to make.
what a heartbreaking reality i’m really sorry this is coming about, i’m sure it’s not going to make anything easier. but maybe this can change some things for the future.
love and positive thoughts…
Rose’s last blog post..memorial day in pix
KK says:
Memo to Sue:
You are a complete & utter ass. Do the world a favor & f*ck off. You are a waste of space & air.
Liliana says:
Well Good luck! I hate all of this unique health issues. I barely get colds but then I get all kind of interesting never heard of stuff. Hope you find some answers and ways to improve your health.
mony says:
so many people here are harsh and angry with “Sue”….be a better person and just ignore her instead of commenting about her, and calling her names and swearing at her.
Heather and Mike…i am so sorry about your loss of your precious Maddie and hope you get strength and courage to cope with this loss. Hope you also find answers regarding your health.
Jordan harlacher says:
Go bang yourself Sue!!!!
preTzel says:
Heather – I certainly hope Dr. Blood can give you some answers. It sucks when your body goes wonky on you.
I’m glad you’re blogging. I’m trying to get around to all my bloggy buddies but I’ve sucked at it lately. Just know that I keep you close in my thoughts.
preTzel’s last blog post..Day 7: One Week Not Smokiversary & Being A Non – Smoking Mother Sucks!
Marti from Michigan says:
I work in the medical field, sort of, typing medical reports at home. My coworkers who are all working from their homes too, yet we have a special email place where we all communicate, we all call the hematologist(s) Dr. Dracula!
In my personal prayer times, I have been praying for you and Mike, and asking God to give you a healthy pregnancy all the way through the 40 weeks with no problems at all. I believe the steps you are taking, may be part of God’s plan. I continue to pray for you two.
eden says:
I hope you find some answers too, mate. Answers that will possibly be bittersweet.
Thinking of you and your sweet Maddie today, as usual.
Sometimes I wish I could fly over to you and just hold your hand.
XOXOXOXOXOX
eden’s last blog post..Gratitude. It’s what’s for dinner.
Cindy says:
Dear Sue,
You are a freak. Crawl back under the rock from which you came because your “purpose in life” was over a long time ago.
Cindy’s last blog post..Ten Randomly-Ordered Questions for Which I Need Answers
Leslie says:
Heather,
My sister had a clotting thing..second pregnancy went fine with heparin shots…not fun, but worth it! Daria is three years old now! The worst part was they lived in FLA and had a hurricane that basically shut down the area. My mom in PA had to call all the Walgreens that they could drive to in order to get her heparin shots! They ended up driving an hour (with no working street lights) to get enough for a week! So, if you end up having to go that route…don’t let your prescription get low, just in case of an earthquake or fire!
MG @ MommyGeekology says:
Heather, the waiting game is never fun – in fact it is really nervewracking – I hope you’ll keep us posted on your condition and state of mind so we can keep on sending virtual love (and pounding the shit out of those who type before thinking. Or, worse, those who type after thinking and still act like fools)
MG @ MommyGeekology’s last blog post..Knock knock! Who’s there? Three! Three who?
amy says:
I hope the testing and results do not upset you further, however they turn out… Hindsight is always so clear and I am sure you and your doctors did all you could for Madeline at the time. I know you did. Please don’t let any results sway you from this.
If anything, I hope the results help other women and their babies.. and perhaps, in time, your decision to have more children, safely.
Hugs to you and Mike. Think of you both so often and your dear Maddie Moo.
Amy
Trish says:
There are a lot of conditions that they don’t test for until a tragedy occurs. Like a weakened cervix, uterine polyps and fibroids … the list goes on. They would never, ever have tested you until they knew the clots were present. And the aspirin and heparin wouldn’t have gotten rid of those large clots that were already there; they would have just prevented the formation of more clots. Try … and I know it’s got to be damn near impossible … but try not to play the woulda shoulda coulda game. The outcome won’t change; you’ll just hurt more, if that’s even possible. Nobody wants you to hurt, sweetie.
The good news in all of this is that, if this was the condition that caused the clots to form, they should be able to treat it early on in the future, and you won’t get any clots at all next go-round. A hint of a silver lining in this terrible devastation … the tragedy will not repeat.
(((Hugs)))
Trish’s last blog post..Chuck E Cheese is not …
Stevie says:
Maddies Mama,
I am so sorry for your loss, and I am so glad that you didn’t delete Sue’s comments, otherwise the other comments like SUCK IT SUE, wouldn’t have made any sense.
As much as you are reeling from your loss, I would take the radical God people with simply a grain of sand. I can’t imagine having someone tell me that God wanted my child more than me, but just take a deep breath and let it go. The negative responses from your friends feel more violent than the woman, Sue, whose comments she shared to help you. (EVEN tho it didn’t, the energy behind it was one of love.)
Then again, if you can find some truth in everyone’s comments then you’ve already got the grace of God.
Good luck with the testing and with your next pregnancy.
Kristel says:
Heather,
I think of you, Mike and Maddie every day. If you could feel each hug I send… every wish I have for you. For Mike. And especially for Maddie. You have lost such love, joy and hope that I have never known and, for the first time in a long time, I mourn your own loss more then my ‘never haves’. I feel a fool for being so forlorn for what I do not have in comparison to what you have had and lost. You make me want to make my life worthwhile. Maddie does that. Because I owe her, and you, and Mike that. Because you have shown me how precious life is. And if there were anything I could do to change things, to make things better for you, to bring Maddie back, I would. But since I can’t the least I can do is be the best me I can be, in Maddie’s honor. Thank you so much for sharing so much of yourself. I can only hope you know just a little bit of the impact you and your beautiful baby have made. *hugs*!
Kristel’s last blog post..You Are Here
Tina says:
Heather,
First of all.. I love you and think of you constantly (and I mean constantly).
Second of all, Sue can fuck off (I don’t usually curse-but shit…she deserves it).
Megan says:
I am so sorry you are going through such heartache and now having to deal with a potential diagnosis. My husband was diagnosed with Antiphospholipid Antibody Syndrome in November after a DVT. My biggest advice would be to (if you haven’t already) be careful with researching it online. Some of the “support” groups you will find are more like scare the living heck out of you groups. I have found this yahoo group to be very informative http://health.groups.yahoo.com/group/APLSUK/
Also, if you are diagnosed, this disorder is fairly new and many Dr’s are not educated fully on it. We found we had to do the research and advocate on my husbands behalf in order to get proper care (we are on our 3rd Dr). Please feel free to email if you ever have any questions and we would be more then happy to help. I will keep you all in my prayers.
Megan’s last blog post..BLESSED!
Calla says:
You are in my thoughts, Heather. Take care of yourself.
Em says:
Still praying for you!!!
I don’t know you or Maddie but fromt he videos and stories that I see on your blog I just keep getting this feeling that Maddie was such a blissfully happy and loved little girl and you were both so utterly devoted to your precious girl.
Em
from Australia
Kelly says:
Oh Heather how crazy-making the woulda, shoulda, what-ifs. I am certain that helpful answers will come from your work with Doctor Blood.
When I read this post and Mike’s recent post…really, every post since Maddie passed away, I felt such a strong sense of awe. You are such fine parents. Both of you working mightily to make sense of such senseless loss, to continue Maddie’s legacy of love and joy.
I haven’t been able to update my newbie blog because Maddie’s beautiful smile, her gorgeous little hands clapping, is the first image on the page and I dearly love seeing her.
Today, I saw a flickr image of Maddie and her Daddy enjoying what looks like some very colorful frosting. This led to Maddie on the swings. Smiles and love. So much love! Your daughter matters. She is that ray of light that points out how rich life is.
I wish Madeline was home with you and Mike. I wish you didn’t walk through a world full of emotional landmines moment by moment, suffering the most tremendous loss. And I hope you know that you are such a fine mama and Mike’s a fine daddy. I feel like that can not be said often enough.
Your wonderful Maddie Moo reminds me to be joyful, to smile, to be grateful for each day. I know words from a stranger can be meaningless. I’m fumbling to reach out to you simply to say that your ability to share yourselves with the world is a great gift. Thank you.
I will never forget your family. I’m not a christian. I do not believe such loss can ever make sense; however, I am asking the universe to send you some peace and comfort. Because I wish that with all my heart.
Kelly’s last blog post..Beautiful Child
Elizabeth Ann says:
Hi Heather,
Totally delurking here. First let me say how sorry I am about Maddie, she was an extraordinary and beautiful little girl.
I was diagnosed with APLS/Hughes Syndrome just last year. I was 24 and had a stroke a week after I was married. I am still learning about everything myself, but as it is I have a fairly “severe” case, hence why I stroked out at 24 years old. Because I had an episode so early in life without any reasoning (was not pregnant, always very healthy, had not been on any long plane ride etc)
I have to take the blood thinner coumadin, and a seizure medication (when the clot in my brain broke apart is caused seizures). But. my life is very normal, really the worst things I experience are a few after effects from the stroke (wonky hand, weird memory issues) but all very benign considering. People with APLS also tend to have a lot of headaches/migraines, joint and muscle issues. Because the disease is attacking your cellular membranes it can really mess stuff up in a variety of ways.
The good news is your fabulous Dr. Looove caught it before developing more clots, it is possible you could only have to do a mini-aspirin regiment and thats it. But, then again maybe not. Anyway, I’ve rambled on way too much, but just a voice from someone who has this, it has been (at least for me) not too bad to live with. Please email me if you have any questions, I’m constantly researching and trying to learn more about this disease. If I can help in any way I would love to do so. XOXO Elizabeth
mimi says:
hi,
Heather and Mike
i am so sorry about your loss. Your Maddy had beautiful curls and a gorgeous smile.
People are people and one cannot change them and they will say what they need to say. Only you both know what you are dealing with on a daily basis and you have each other to lean on.
Maddy for sure has touched a lot of people’s lives and that should give you both comfort.
Take care of your health and hopefully you will get answers about your health and you both are never alone, always remember that.
God bless you both.
Daria says:
Hi Heather.
Once again, I am so sorry about beautiful Maddie, you are doing amazingly well & I am still glued to your blog every time I see an update.
The last time we emailed I was telling you about my pregnancy after having a previous 27 weeker. I know it is probably not very appropriate now to be sharing this news with you, but I did carry my second baby to full-term. I sincerely hope this isn’t offensive or upsetting to you in any way.
The reason that I am telling you now is that with my second pregnancy I by chance found a fantastic High Risk Obstetrician who had done alot of research into causes of premature birth.
One of the first things he did was do extra blood tests for clotting disorders. I was diagnosed with having Lupus Anticoagulant (you guessed it – otherwise known as Antiphospholipid Antibody Syndrome). I was put on medication for the rest of the pregnancy to thin my blood.
He too suggested that in alot of premature birth cases it was later discovered that this may be a factor. He said that it is not common practice to do these tests unless there are indicating factors.
In your case I agree, they really should have thought of testing you.
Of course, looking back at my own first pregnancy, there is no way my obstetrician could have known what was going to happen. And sadly, playing the ‘blame game’ or as you said the ‘woulda/coulda/shoulda’ game can’t change anything.
But it does make me wonder why more thorough testing isn’t the norm in pregnancy these days?! If we have access to these extra little things that could possibly help even 1 mum have a healthy pregnancy, why aren’t they encouraging this?!
I hope this has helped you to find peace of mind, & not made it harder for you. I hope information like this just helps more women & babies in the future.
I think of you & Maddie often (even though I don’t know you). All my love.
Daria.
Daria’s last blog post..
Heather says:
Hi Heather, I’m a Heather as well, found your blog through Matt L’s blog and have been reading for awhile. My lil’ man was a prem as well, and I can’t IMAGINE what you and Mike are going through, you are one strong woman to continue to share with us your feelings and we pray for you all the time.
Now this Sue thing … I’m catholic, I believe in God, but HOW IN THE HELL can you justify coming onto this blog and spewing THAT kind of crap on here ??? I mean do you not have a heart ?? Are you not a mom, sometimes it is all well and good to say that it is gods plan, but COME ON !!! HERE !!! WHY HERE !!! NOBODY wants or deserves Maddie more then you and Mike !! I am angry for you that Sue would come here and spew that here NOW, because you do not want or need to hear that !!
Love and prayers from another stranger, Heather
Manda says:
Hi, wow you have so many replies you prolly won’t even notice an eztra one but i wanted to let you know that i’ve read you whole blog and Maddie was so beautiful, such a terrible loss. i bet shes the prettiest, funniest angel in heaven!
Anyway i also have a blood clotting problem. I found out after i lost my bub before the end of the first tri, i’ve lost an earlier one too. they were IVF no’s 3 & 4 so it’s tough for us to concieve and now we find out to keep a bub also cause of my blood.
I have the prothrombin gene mutation or factor II. most of the blood issues cause the smame probs though. My doc put me on low dose asprin while cycling/ttc and now i’ve got a positive test i’ve switched to Clexaine (Lovenox in the USA) it’s a daily sub q shot to thin the blood and stop it from clotting where it shouldn’t and causing a loss. (hopefully)
So i guess that may be an option for you if you try for a baby in the future to prevent it’s loss or early delivery.
I too would have thought that high risk OB’s would be familiar with the main blood clotting probs and would have thought to test for them.
A million Good Lucks to you
Hugs from accross the globe
Manda
Amy says:
I was diagnosed with that and positive ANA after my first pregnancy ended in early miscarriage. The bad part is that they usually make you go through 3 or so miscarriages before they even perform tests like this, but because of my family history (Rheumatoid arthritis and multiple miscarriages) I was fortunate not to have to go through another one. I took a baby aspirin once a day throughout my next pregnancy and everything was just fine. I pray that the new doctor will give you all the answers and information you need to go forward.
Thank you for sharing the stories and pictures of your beautiful daughter with us. My heart aches for you and your family during this time.
And Sue, that was probably the most insensitive thing I’ve ever read, you horrible cow.
Amy
denise says:
Heather –
I’m really glad that you are getting a lot of good feedback and resources for the AFS and similar health conditions. I think it’s a great idea to get second and third opinions when it comes to medical issues.
I remain so grateful that you and Mike are sharing so much of your hearts with the community – I honestly believe you are helping so many people deal with their individual grief and loss by allowing them to share their stories with you. You continue to honor Maddie’s life by sharing your memories.
On the other hand, I am disgusted and infuriated by TOTALLY IGNORANT people who would try to tell you to “just accept it”. I know you have heard it a million times since that “Sue” person made that ignorant comment but, people like that are not what faith is about. I have questioned my own faith since Maddie’s passing. That ugly person does not live in reality – they live in their own psycho dimension where some other “being” controls everything.
All that being said, I still wish to see her as an angel – her spirit living forever in your pictures and words and love.
Hugs to you from Texas . . .
Kylie says:
Sue you are a deadset idiot!! One word – karma!
Megan says:
I never typically comment on blogs, but Sue, you have forced me to. I doubt you will even read this because you unfortunately probably don’t even realize the error of your words. But, I am compelled to write anyway.
I am a Christian. I am married to a pastor. And Sue, I am ashamed to be a part of the same faith as you. In your one, brief sentence you have accomplished two horrific things: 1) characterizing a loving God as a brute and 2) insulting the amazing, boundless, selfless love of two grieving parents (as if their love wasn’t enough and that is why God took Maddie). I called my husband to read your comment to him and he was truly angered by your words. You are the very example why Christians turn the world off and away from God. Instead of sharing his love and grace to this grieving family, you have used him to insult and excuse away an unspeakable tragedy. You have tried to give a reason when there is no reason for us to understand. As my husband said, it is “a cheap excuse of a statement by a Christian when they don’t know what else to say.” May I offer you advice, Sue? Please, please-if you don’t know what to say-say nothing-do not resort to the all-too-common Christian cliches.
And, the comment “to leave it at that….” Untrue, impossible, and deplorable. “Blessed are those who grieve, for they will be comforted” is how the Bible actually reads, Sue.
I do not want to come across preachy-my hope is to bring a better light to people of faith-and remove some of the tarnish Sue has rubbed on us all.
Heather, I love you and your family. I’ve never met you, but I ache for you and pray for you every day. Thank you for sharing your angel with us. Your courage and strength are an example to us all. I apologize for Sue’s comment.
Michelle says:
Heather,
OMGoodness, I am so sorry you had to endure reading what Sue said. Obviously, Sue has not had to endure something as tragic as you have. I am a firm believer in “if you don’t have anything nice to say, don’t say anything at all….so I am trying with great restraint to not just go crazy on Sue! I do hope Sue will realize the community of individuals that have been lifting you and Mike up in love and prayers is similar to a “mama bear” protecting its’ own, the 99.9999999% who read and follow you only wish you and Mike the best. The other minority can please stop reading!!!
Michelle
Herculaneum, MO
paris says:
people here are so violent and toxic and keep on judging “SUE”..instead pray for her…these same people say they are Christians and yet swear and call “SUE” ugly names and get angry about her response here. One repeatedly says if one cannot say something nice here do not say anything, and yet toxic people here keep on bashing “SUE”.
please leave “SUE” alone., and all your toxic comments about her is doing no-one good here.
This blog is about precious Maddie and NOT about “SUE”.
i am so sorry for your loss, Mike and Heather, she was so beautiful with gorgeous eyes and cheeks and her laughter too.
You both do what you need to do to give you peace of mind regarding your overall health.
T says:
My favorite things here: the tiny reassurances that you find relief (like in a good nurse’s care) and that you share Maddie’s laughter with the world. I wish your blog never needed to turn the topic of grief, wish I could ease your suffering for just a minute or two. I have a lot of faith that you are doing good by sharing your journey with us here. I’m excited that learning about pregnancy clotting disorders and complications could help you in the future and also get the word out about how treatment can help. It took me a lot of heartbreaking losses, including holding my son as he died on the vent, to learn that anticoagulant treatment could make a difference. I’m happy to report that aspirin & injected anticoagulants (Lovenox and heparin) were the right treatment for me and I now have two thriving sons after burying 3 others. And as a parent who went through that horrible grief, I highly recommend that you find a good spot to collect that medical data and then make sure it can be pushed out of sight when you need a break- nothing wears at your emotions more than facing a pile of bills, medical notes and test results. There will be laughter again. You’re doing good work here.
Jenn says:
Hello Heather,
Wow, lots going on this board today! I know nobody wanted Maddie to stay here as much as you and Mike and your family. I’m sorry you have to go through all of this but, once it’s over, it’s over. Although there has been so negativity on this board right now, I hope you will still post and ignore people who think they know everything….they don’t – how could they???
All my best and please take care,
((HUG))
Jenn
Are you kidding? says:
Oh oh! Pick me! I’ll GLADLY touch Sue with a ten foot pole! Give you one guess where I’d like to “touch” (read SHOVE) her with it.
JustAMom says:
Sue – Going to church doesn’t make you a Christian any more than standing in a garage makes you a car.
Heather and Mike – I’m so sorry. NO ONE wanted Madeline more than you, and GOD knows that. That is why GOD entrusted YOU with her. GOD gave her to YOU because she was special and she deserved great love.
lionel says:
xxx
ashby says:
“SUE”…rip.
Mike and Heather,
i looked at all the pictures from birth of Maddie’s…she was a very happy baby indeed.
Sorry for your loss…hang on to all the beautiful memories and take it day by day/hour by hour.
cuthbert says:
Mike and Heather,
Maddie was a very cute baby and always happy and is watching over you both.
Hope you get answers regarding your health and will have the strength and courage to deal with your loss.
Best of luck to you both.
patois says:
Certainly easy to say and much harder to do, but I hope you can channel your wondering and what ifs to the future and try not to let it eat at you regarding Maddie.
You all remain in my thoughts and prayers. And now I’ll hope for a good prognosis for you from Dr. Blood. (And, how very un-Christian-like of me, a not-so-good prognosis for Sue. Sorry, I am a bad person.)
patois’s last blog post..The Weekly Wonderings #110
Julie B says:
Dear Heather, I discovered your blog through Matt’s blog. I am a mom as well, and my youngest son was born around the same time that Madeline was, and so, of course, your story strikes a chord with me. I just wanted you to know that I have been in tears sitting here reading your blog; your pain is palpable. What horror you and your husband are going through with the loss of Maddie. She was absolutely adorable, and so well cared for and loved. That is obvious; she was so happy! Anyway, I don’t really know what to say. You are living every parent’s worst nightmare; I don’t understand why anyone should have to go through something so horrific. It’s just not fair. I just wanted to be another voice letting you know that you are in my thoughts and prayers, and thank you for sharing your beautiful daughter with us.
Denise says:
It breaks my heart to know the people we trust don’t always do the very best job. I’m sorry Heather, thank goodness for Dr.Looove
Denise’s last blog post..School Is Out For Summer
Jill says:
Heather, as a mom and someone who loves Jesus, I burst into tears at Sue’s comments. There is nothing farther from the character of God than the idea that He took Maddie from you because He loves her more. I feel like anything I say about Him or you or Maddie right now will sound cliche or contrite. But I would like to thank you for the privelege of being a witness to your thoughts. Anyone can see how much you love Maddie…how much your heart aches. I cannot imagine, but you are in my thoughts and prayers so much, even though we are strangers. Your Maddie is a beauty.
Betsy says:
I just had the same blood work done, 16 vials and a black & blue arm – still awaiting the results! After two babies and a plethora of doctors, I finally found one that gets it. So I understand completely inadequate care. My OB’s the second time around, although high-risk, didn’t seem too interested in preventive medicine, which brought my Soph here almost 11 weeks early!
I am glad that you have a hematologist that may be able to provide some answers, but am terribly sorry they are so late and at such a cost! Continuing to think of and pray for you all Heather!
Betsy’s last blog post..Wait!
zeena says:
I just read about Trenton who passed away on April 12/2009 and his mother has a poem on his caringbridge website (trentonlamadline) which is so beautiful and i am sure would give you and your husband a lot of comfort.
I dont know how to copy and paste or else i would do it here for you to read.
Hopefully you will find some answers regarding your health.
Peace be with both of you…she was a beautiful baby.
nima says:
i found a website called “compassionatefriends.org” for chatting with parents who have lost their child..perhaps this help the two of you to cope with your loss.
God bless you both.
katie i says:
girl…what the gammet you have been thru. after my miscarriage i demanded some of these blood tests only done by the peri. turns out i had one mutation of mthfr (a clotting factor). simply treated with baby aspirin, more folic acid and a b complex. i think you take lovenox for both mutations. it just sucks there can’t be more testing prior to getting pg so you know what you are dealing with. it sucks anyone has to go thru losses to find out what is wrong, and especially when your miracle is ripped away from you. but modern medicine is good- best of luck!
.-= katie i´s last blog ..its october! =-.