Sunday, January 31, 2016

Looking for Survivor Stories


Last year's crew
The Chicago Promise Walk is 15 weeks away. The extended Runner family is once again training hard and hopes for a good showing. You can donate to our team here. As I train for this and also another marathon, I'd like to revive Survivor Saturdays. If the course of your pregnancy, birth, and/or post partum was altered by preeclampsia or a related condition, I would like to share your story. It doesn't matter how dramatic or "routine," you are a sister survivor. I hope to find 15 stories to feature, and my weekend training run will be dedicated to you and your baby. Stories can be submitted to whatyourunningfor@gmail.com.

Sunday, January 10, 2016

Alyssa's Story

I haven't done a Survivor Saturday in a while, but Alyssa found my blog and wanted to share her story as well. I ran six miles yesterday in her honor and in memory of baby Mack. If anyone else would like to share a story, I would love to hear it and run in your honor as well.

Alyssa's Story

My husband and I are high school sweethearts. We played by the rules... date, finish college, engaged, married, enjoy marriage for a year or two, grad school, big girl job, BABY. Well every went perfectly according to my Type A personality plan except for the Baby part. We started trying thinking it may take a few months since I had been on birth control for several years. Well that turned into a year and a half and a fertility specialist. Being emotionally exhausted we decided one more try with meds before IVF. Well that month was our month! We found out we were expecting Memorial Day 2015.

During my pregnancy I thought I was having a normal wonderful pregnancy, looking back now there were some issues from the beginning.

At about 6 weeks I had a pretty good bleed, I knew the pregnancy was over, I just knew it. Well to my surprise we went in the next day and there he was with a perfect tiny little heart beat. I had what they called a "moderate" sized implantation tear and was on pelvic rest for 5 weeks.

After that hurdle was over, I was feeling good. No nausea, no extreme fatigue, just a few minor headaches occasionally. I'm a pretty active person so wanted to be sure I was clear to continue exercising and playing tennis. When I would play tennis I would occasionally get sharp pains in my bladder. I am a nurse practitioner so after doing a urine on myself I called to tell them I had a UTI. It was treated and the pains improved. But a week or so after that episode it happened again, this time no bacteria in my urine but it hurt with every step I took. I went in but my OB wasn't in so I saw the Nurse Practitioner. She went ahead and treated for UTI. I remember mentioning that my stomach would get tight at the top sometimes but I just thought that was him moving around. Looking back, I'm pretty sure these were contractions. So I just chalked this up to I have a sensitive bladder or maybe he is just super low pressing on my bladder, or this was just normal and I didn't know what to expect. Either way the pregnancy seemed to be sailing right along pretty smoothly. Until...

Right before our 26 week appointment we went to dinner with some friends. We sat at a pub table and my feet were dangling most of the night. I could literally feel them swelling as we sat but I didn't want to be a complainer and I sure didn't want to be that pregnant person that was so swollen. We made it home and my poor legs and feet looked like elephants. That should have been my sign (sudden edema) something wasn't right but I had an appointment the next week and they seemed to stay down as long as I kept them elevated. At my 26 week appt. my blood pressure was elevated and I mentioned the swelling. She asked about visual disturbances and I said no. Well looking back I had seen spots a time or two before hand that lasted a few seconds but it didn't register that it should be alarming, again assuming just part of pregnancy. As a nurse practitioner I didn't think the pressure was that high, but apparently in pregnancy its more of the increase from baseline than the actual number. She ordered home monitoring through the weekend and 24 hour urine for Monday.

I took it easy over the weekend and my BP remained elevated but never over 150 and never over 100 diastolic. I had another episode of seeing spots so mentioned it to her on Monday's visit. After looking at the home readings she decided bed rest was our plan but she wanted me to go to L& D to be monitored before driving an hour and a half home. Well we get all hooked up and a few minutes later the nurse comes in: Did you know you were having contractions? Um well no! Well you are about every three minutes.

Now I'm freaking out, my husband isn't here, I'm only 27 weeks, and he only weight 1lb 12oz at the last ultrasound! This can not happen. I was started on Procardia. It seemed to be working. My husband arrived and we were all able to breathe a little. My OB came in and said I did have protein in the urine but it was mild. She said if we could keep contractions at bay and BP controlled with meds we could do bed rest at home.

No activity through the night and looking better on Tuesday. Our plan was to go home Wednesday.
Again here goes that plan out the window. The contractions started back this time stronger and more frequently. I was given three injections none of which worked. Labs revealed that the Procardia was just masking the problem, I was developing HELLP! Thankfully my OB had enough sense to give my first steroid dose for the baby's lungs in her clinic that day and I would have time to get the second one in also. I was started on Mag but our only option was to deliver at 27 weeks 4 days.
I can't even describe the fear of knowing you are about to deliver a not even 2lb baby! We prayed and prayed and prayed.

Mack Thomas was born on November 4th 2015 at 2:30pm by Csection. He had the tiniest little cry. I was able to touch his little hand before he was off to the NICU. He was so strong, never even had to be intubated! I couldn't believe it. I don't remember any thing from recovery until I woke up the next morning. I was dying to see him. They took me off the Mag and back on oral meds. It was all such a blur that Mommy mode kicked in and I was no longer concerned about myself, my BP or my labs. Looking back on it now, I didn't realize how serious and life threatening these conditions could be. I ended up staying in the hospital for a total of nine days due to labs and BP not trending down. But everyone including GI kept saying you just don't match your labwork, you feel too good and are getting around too good. After being put back on fluids and steroids I was discharged home, but we knew Mack had a long way to go.

He was the rock star of the NICU, graduating from CPAP to regular oxygen in just a few days. He was tolerating feedings through his tube well (too small to have suck/swallow reflex). I was honestly amazed by my tiny baby boy. I was able to hold him a few times and we were making arrangements for long term stay an hour and a half from home. This was going to be our new normal for a while, whatever this little boy needed.

Again here goes my plan, we got the call on Day 13 of his NICU stay that he had a spontaneous pulmonary bleed and had to be intubated. He was tried on three different vent machines after the max settings had been reached. His little body would not be able to recover. He made his entrance into heaven on November 19th 2015 at 3:30pm in my arms.

The grief is still fresh and the hardest thing I have ever been through. PE and HELLP stole my plans of a  happy pregnancy, a spontaneous experience of rushing to the hospital when my water broke, of a vaginal delivery with family in the waiting room, of holding him after delivery, and of bringing my first born home. I have found comfort in reading other's stories and knowing there is hope for future pregnancies.

But though this terrible journey, I know that
I WILL have another pregnancy.
I WILL be terrified through that entire pregnancy.
I WILL be aware of the symptoms sooner.
I WILL appreciate every second of my future children's lives.
I WILL trust in my God's plans.
I WILL always be the mother of an angel and
I WILL forever be changed by this experience.

Tuesday, December 8, 2015

The One Rare Case

My first miscarriage was an unusual type of loss called a blighted ovum pregnancy that lasted past 10 weeks. Pregnancy and birth are my geekdom, so I find the science fascinating. I'll spare you the details, but if you asked I could talk your ear off. One interesting fact, though, is that as far as scientists can tell, this type of loss is completely random. You can't point to any risk factors and say, oh, you have XYZ, that's why it happened. Any woman in any given pregnancy has exactly the same risk as anyone else. And because it's random, having had it once does not put you at any higher risk of having it again. It's not that common to have a long-lasting blighted ovum once. It's really rare to have it twice. My most recent loss was also a blighted ovum pregnancy that lasted past 10 weeks, which makes me The One Rare Case.

I'm part of a peer-to-peer support group for survivors of preeclampsia. At least once a week, someone will ask what the chances are of having it again. We always quote the statistics: It most often happens in a first pregnancy and doesn't recur. The earlier and more severely you got it the first time, the greater the risk of recurrence. If it does happen again, it's usually later and milder. Regardless, your doctor will monitor you and baby closely. Even if you get sick again, your chances of taking home a living baby are good. But then we add this caution: There are always rare cases.

Statistics mean very little to the individual. If you happen to be The One Rare Case, it won't matter that you had a 99.9% chance of a living child.

I do actually have a number of risk factors that put me at greater risk for recurrent preeclampsia, so it's not that surprising I've had PE three times. But one of my miscarriages was in the second trimester and just four days after a perfect ultrasound when the statistical risk was very low--The One Rare Case. And while I've done everything in my power to manage my various conditions, I've been struck by random bad luck not once but twice. I can't exactly manage randomness.

My first loss was my physically hardest, my second was more emotional, my third affected me spiritually. This one seems to be mental, falling into negative thoughts. I don't believe in jinxes, karma, or manifestation. But having been The One Rare Case over and over, it's hard not to feel cursed. That is what I've been struggling with this time around.

Sunday, November 29, 2015

Our baby is gone

Then Aslan turned to them and said: 
"You do not yet look so happy as I mean you to be."
Lucy said, "We're so afraid of being sent away, Aslan. And you have sent us back into our own world so often."
"No fear of that," said Aslan. "Have you not guessed?"
Their hearts leaped and a wild hope rose within them.
"There was a real railway accident," said Aslan softly. "Your father and mother and all of you are--as you used to call it in the Shadow-Lands--dead. The term is over: the holidays have begun. The dream is ended: this is the morning."
And as he spoke He no longer looked to them like a lion; but the things that began to happen after that were so great and beautiful that I cannot write them. And for us this is the end of all the stories, and we can most truly say that they all lived happily ever after. But for them it was only the beginning of the real story. All their life in this world and all their adventures in Narnia had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story, which no one on earth has read: which goes on forever: in which every chapter is better than the one before.
Passage from The Last Battle by C.S. Lewis

I started bleeding lightly Monday night, and broke down and called the doctor Tuesday morning. An ultrasound revealed our baby was gone. By Tuesday night it was all over. We have named her Lucy, an English name that means light and a character in my favorite book, quoted above. This passage has always meant so much to me, and even more to know my four children have experienced it first hand.

Saturday, November 21, 2015

The Streets of the City

"And the streets of the city shall be full of boys and girls playing..." Zechariah 8:5

This verse was featured at the funeral of my best friend's son, who passed of a genetic disorder just short of six months old. He died about a month before my own first miscarriage. While it doesn't make me miss them less, it does bring a bit of comfort to picture my three little ones along with her Micah, and another friend's Kimber, and all the other little ones I know about, running around laughing and playing.

My due date for Declan is approaching. Thanksgiving Day. With my history, it's likely he would have been born 3-4 weeks early, and I had a vivid dream of nursing a slightly premature newborn at what would have been 36 weeks. I think of him often.

My heart is also heavy for a family
who lost twin boys this week. Two more sweet children joining that eternal playdate. Two more parents whose lives will never be the same. Love and prayers to all parents missing children today, no matter how old they were or how recent the loss.

Tuesday, November 17, 2015

9 weeks 1 day

After losing our son in May and getting through the recommended three month recovery period, Papa Runner and I talked about what we wanted to do. Neither of us were excited about jumping back on the TTC roller coaster, but at the same time we aren't getting any younger. The longer we wait, the harder (and higher risk) it would be. In the end we decided to "stop trying to control everything and see what happens," fully expecting it to take a while. 
Knock Knock
"Who's there?"
The stork.
"Say what now?"
God had other plans.

I've started writing and deleted this post a number of times already. I keep shaking every time I try, but here goes. Today I am 9 weeks 1 day into my seventh pregnancy with my eighth child. Yes, I'm counting days. Everything has gone well so far, and yet it's also been really stressful. I'm hyper-aware of every twitch and twinge. 

It was hard telling the kids. They are excited but also cautious. They asked if this baby will die, too. It's an important conversation to have, and a healthy one, but so hard. Monkey, especially, really really wants to be a big brother. He talks to the baby a lot, and reminds him/her not to come out too soon "or you'll die." He's been really sweet, reading stories to the baby and showing it how to try foods you don't like. Tonight when I put him to bed he said, "Oh, no, I didn't teach the baby anything today!" I said he could show it how to stay in bed at bedtime.

I haven't been to the doctor yet and don't plan to for a while. My fellow loss moms are like WHAAA? and my fellow high risk moms are like WHAAA? and my medical professional friends are like WHAAA? But last time I went early and often, submitted to every test no matter how ridiculous, and followed every recommendation, and none of it made a difference in the outcome. I can't think of a single thing they do in the first trimester that is either necessary or helpful for me. 

STD testing? I've been in a monogamous relationship for 13 years and had a clear test 6 months ago with the last pregnancy. No need to repeat it so soon.

Check hormone levels? None of my losses have been due to low progesterone. If they had been, I'd definitely do this one, but they weren't. 

Dating ultrasound? I've charted my cycles for 13 years and have scientific evidence proving when I ovulated. You can't get much more accurate than that. 

Do an ultrasound anyway just to make sure everything is okay? If they find a problem, there is nothing they can do about it at this stage; knowing won't change the outcome. And if they tell me everything is fine, that won't reassure me. Everything was fine just four days before Declan died, too.

Check my weight and blood pressure? I'm quite capable of checking it myself at home.

Remind me to take my vitamins and avoid alcohol? I should have that down by the seventh pregnancy.

The one thing I am curious about is the possibility of multiples. But because I have a tilted uterus, it's hard to get a clear shot abdominally at this stage. I'm not curious enough to use the dildo-cam just for this when, again, knowing won't change anything. 

I did call the OB's office and let them know so it's recorded in my chart. I'll probably make an appointment for around 20 weeks for an anatomy scan and start regular appointments then. Until then, I'm taking it one day and sometimes one hour at a time.

Prayers and positive thoughts are always appreciated.

Saturday, October 3, 2015

Pregnancy and Infant Loss Awareness Month

October is Pregnancy and Infant Loss Awareness Month. I've lost three children to miscarriage at 10, 9, and 13 weeks, most recently in May. When Declan died, I entered the Anger stage of grief. I had a lot of pent up energy, and I couldn't sleep unless I worked myself to exhaustion. Exercise became my therapy, and I trained myself entirely too hard and racked up a lot of miles.

I now seem to have moved into the Depression stage. I don't want to do anything or go anywhere or see anyone. I'd like nothing better than to sleep 18 hours a day and veg out the other 6. Unfortunately, we are really, really busy with activities and programs, several of which I'm somehow in charge of (and that's after dropping two from last year!), on top of home schooling, cooking for my diet, and housework. I've been feeling very overwhelmed, exhausted, and stressed lately, but I have no idea how to cut back. I don't even want to run anymore, although I'm too stubborn to give up on my streak (125 days and counting) so I've been power walking single miles and calling it good. I have at least given up on reaching 1000 miles for the year.

Also, a lot of people think depression=sadness, but for me it's more numbness. I think if I could have a nice, long cry I'd release a lot of this and feel some relief, but I can't cry. And I've tried, even getting some really sad books to read. The tears just won't come. And I really don't feel like reading right now, either, although I'm too stubborn to give up on my reading challenge either (35 of 52 books and counting).

There's not really a point to this, so yeah, that's it.