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.