Thursday, November 21, 2013

Gone yet not forgotten.

It's been 7 weeks since our son, Lucas Alexander Verrall, was born still at almost 24 weeks gestation. Seven weeks of tears and heartache and questioning how such a terrible tragedy happened at all and why it happened to us, of all people.

We have no answers.

Monday, September 30th was the last day I felt my baby boy moving. By Tuesday he was still, but I convinced myself that he had probably turned and he was so little, just 1 pound, so it was totally normal to have a day without feeling him. On Wednesday I was getting anxious and tried so hard to get him to kick. I jiggled and poked my belly. I held my headphones to it with the volume turned up. I ate candy and drank juice.

On Thursday I called Dr. P. and she told me to come see her right away. They rushed me straight in for an ultrasound and that still, silent image will haunt me forever. He was 24 weeks and had just passed the point of viability, yet had inexplicably died without ever getting a chance to breathe or cry.

For some reason Dr. P. didn't realize that 23 weeks, 5 days is considered too late for a D & E, so she sent us across town to another doctor (who's office didn't inform her that surgery was no longer an option). After an hour wait, the doctor gruffly told us that I was too advanced, the hospital was Catholic and didn't allow late term abortions even when the baby was already dead, it was too dangerous, etc, etc and I would have to be induced.

Instead of a baby, we took home a box.
That night I began the unbearable experience of giving birth to my dead baby. We checked into Labor & Delivery at 8 PM and went through paperwork for nearly 3 hours. We had to answer ridiculous questions such as whether or not our house had electricity and running water (?!). It all seemed so pointless -- what did our living conditions matter when our baby would never be coming home? To her credit, our nurse was very empathetic and apologetic and did her very best to help us through a very difficult situation.

Finally around 11 PM I was given cytotec to get labor started and an ambien to let me get a few hours of sleep. Chad went home to relieve Dave and Tracy from babysitting duty and to be there in the morning for Eli. I stuffed my earplugs in my ears to cut out the joyful celebrating next door and the nursery rhyme they played through the halls whenever a baby was born. That song chimed six times during my labor, but of course it never played for Lucas...

Around 4 AM I had another dose of cytotec and some dilaudid for pain and by 6 when Dr. P arrived I was 1 cm dilated. She decided to break my water (which if I had known would be that painful I would have insisted on getting an epidural first). Afterwards she started me on pitocin. By 8 AM I was finally starting to have regular contractions and was given an epidural as the dilaudid wasn't cutting it anymore. Chad arrived around 9:30 and Tracy came soon after, and we waited...
Tiny feet that never got a chance to run. :-(

Finally just before 2 PM I was ~5 cm dilated, which was sufficient for such a small baby. He slipped out and lay there silent and still. No one clapped or cheered for his birth. Lucas  was tiny but perfect. He weighed 1lb and was 11.5 inches long. There was nothing visibly wrong, although the cord was wrapped around his neck. We'll never know if that contributed to his passing. Dr. P's opinion is that it's possible but unlikely.

Our nurse took him away immediately to clean him up and take some samples for testing, and we were left to sit in shock for awhile over the reality of what had just happened. Finally she returned and we got to hold our son for the first and last time. At 24 weeks, a stillborn fetus isn't beautiful, but he was fully formed with long, slender fingers, tiny, impeccable feet, and the fuzz of brown hair just starting to grow on his head. His face was soft and swollen, but it was still possible to see that if he had lived he would have looked very similar to Eli.

Pictures, the blanket he was wrapped in, and the infant hat I bought the week before...
We were discharged a few hours later once I convinced the nurse that the epidural had worn off enough for me to get up and walk (hobble, really, as my left leg was still almost completely numb). Going home without our baby was such a surreal experience. I felt like I left a chunk of my heart behind me and had become this strange half person who looked normal on the outside but was shattered on the inside. Yet somehow I still had to be whole and normal and loving for my living son who didn't understand that anything bad had happened and who I most definitely wanted to shield from our pain as much as possible. Forcing myself to pretend to be normal was unbelievably exhausting. Thankfully my mom, grandma Libby, and Chad's sister, Aimee, were there to distract Eli and give me a chance to stay in bed and cry.

And for those first few weeks, I was a gaping wound of grief and anger and disbelief that this actually happened to us. The stillbirth rate in the U.S. is around 1:160. How could we have won the bad luck lottery after all of the loss we'd already suffered? I couldn't sleep more than a few hours at a time as I constantly woke up thinking that it was all a terrible mistake and my baby was healthy and safe in the NICU. Which is even crazier because even if he had been born alive, we would have signed a DNR since he was still too underdeveloped to be put through heroic efforts for a very small chance of a good outcome.

We visited him one last time at the funeral home in order to put the disturbing dreams to rest. We took a few more pictures, which I won't share since he wasn't looking so good after the autopsy. We signed the papers to have him cremated.

Lucas' ashes. We will find a more fitting repository for them in time.
I returned to work after just a week and a half off. Even though I didn't feel normal, I had to pretend to be normal and keep living my life. My mom and Aimee had gone back home, and I didn't want to sit alone by myself with my dark thoughts.. For awhile I felt like I was walking the knife edge between remaining myself or falling into a deep, black abyss of depression. But I've been down that hole before, and I was determined that this time I wasn't going to let myself fall in. It wouldn't be fair for Eli, or to Chad, who was grieving just as much as I was. I started seeing a counselor to help me handle the anger and negativity.

Despite the passing of time and the professional help, I feel like my body is an inhospitable place. I have failed so many potential bright lives with my inability to nurture them as I should. I know it's out of my control, but I still feel so guilty. I have lost 8 babies in total. Eight. How many more will die if we try again? Are we crazy to consider it? I always felt like people who wanted more than one child were being greedy during the years when I was struggling so hard to finally have just one child. But then we had Eli and I desperately wanted to give him a sibling, so now I'm the greedy one. I don't know why one isn't enough. It should be especially considering what we've gone through...

I've asked myself over and over, "what if this happens again?" Is it fair to open myself and my family up to experiencing so much pain again? How many times can one's heart break before it can no longer heal? The reality is that my antiphospholipid syndrome has a 15% stillbirth rate, even with treatment. While the autopsy didn't show any sign of clots in the placenta or umbilical cord, that doesn't mean they weren't a factor. Something caused the placenta to struggle and not produce a normal amount of amniotic fluid. What if Eli being born healthy and full term was the fluke? Dr. P. can't give us any answers or statistics other than the fact that having one stillbirth raises the chances of having a second. We will have to cross our fingers and hope for the best.

Anyway, thank you so much to all who have supported us through this terrible time. We really appreciate the visits, flowers, cards, calls, and emails. Your love and compassion has really helped us. Acknowledging and sympathizing with our grief is so much less painful than ignoring it as some have chosen to do. Lucas may only have a death certificate instead of a birth certificate, but he was born just the same and we will always remember him and the dreams we had for him. 

I miss my baby so much and I want him here with us. :( 

Gone yet not forgotten,
although we are apart,
your spirit lives within me,
forever in my heart.

The adorable hat that Lucas will never wear.

Friday, September 27, 2013

23 Weeks - Viability!

I will be 23 weeks on Sunday which is considered the point of viability. If baby was born next week he'd have a chance of survival (although also a lot of health issues). Fortunately the likelihood of such an early delivery is very low. However there is about a 30% chance of my water breaking early due to the bleeding I had. Hopefully I'll make it to 37 weeks at which point he'll be full term. I asked about induction dates today at my appointment and Dr. P. said her hunch is that he will be early, but we will try to get to January 5th. After that she will deliver him for any reason.

Everything looked really good today! Baby grew a lot more than he has been and isn't showing signs of severe growth restriction at this point. My fluid levels are also good and much better than we expected at this point. Dr. P. said the only explanation she can think of is that the prednisone is really making a difference. She said typically by the time women who would benefit from it get it, the baby is already so growth restricted and the fluid is so low that it doesn't make much of a difference. But since I started it pretty early, it's had time to reverse that trend. So I guess the bad UC flare has a silver lining afterall. I've started tapering off the pred since my flare finally resolved, so we will watch over the next few weeks to see if maybe I should stay on it longer to support the pregnancy.

Gestational Age: 22weeks 5 days
Weight: 1lb1 oz (28%)
Heartrate: 153bmp
My weight: +6lbs

Wednesday, September 4, 2013

19 weeks Update

We made it through a very exhausting long weekend of 95+ degree temperatures and no air conditioning since it conveniently stopped working last week. I wanted to write this update on Friday, but since I took the day off from work and it was over ninety degrees in our home office, it wasn't going to happen.

We had a really good ultrasound on Friday as well as meeting with the geneticist to go over our AFP test results. Fortunately both the geneticist and Dr. P. agreed that an amnio probably wasn't worth the risks since bleeding can cause elevated results and we hadn't seen any signs of a neural tube defect on ultrasound. Additionally, subchorionic hematomas like the one I have often leak into the amniotic fluid, so there would be a good chance that we would still get elevated results from the amniocentesis without getting any additional information. Both Chad and I had come to the same conclusion after doing our own research, so it was good that we were all in agreement.

After meeting with the geneticist we had another ultrasound. And for the first time in the pregnancy, everything looked much more normal! It appears that the prednisone is really helping my placenta out as baby finally has normal fluid levels. Usually he looks pretty squished since his amniotic sac has been so small, but this time he had a lot more room to move around. We were starting to get concerned about the potential for growth restriction or kidney issues, but it looks like the problem all along has been with me and not with him. Dr. P. also thoroughly checked his brain, spine, and other organs and said everything looks completely normal. Also, she confirmed that he is most definitely a boy. :-)

Third leg!

I'm starting to feel more regular movement, which is very reassuring. And I still haven't gained any weight, but since the little guy is growing at his usual pace that isn't a problem.

Everyone else is doing well too. I bought Eli a little doll stroller for the baby doll our friends Alicia and Scott got him for his birthday and he is constantly pushing it around the house and wants to take it everywhere when we go out. Here's a video of him playing with it: Eli and his baby doll

Wednesday, August 21, 2013

Troubling test results

Last week I had my blood drawn to screen for neural tube defects. My results came in today and my AFP number was 2.88, which is considered a positive result (a normal result is less than 2.5). However, this doesn't mean that there actually is a problem -- the odds are 1:72 for a spinal defect in general and 1:144 for spina bifida.

We will meet with the genetic counselor again next friday and go over the options for further testing. Most likely she will recommend doing an amniocentesis to see if the the amniotic fluid also has elevated AFP as that is much more diagnostic. Last week Dr. P. did look at the baby's spine and brain and didn't see any obvious signs of a problem; however she said that very small defects are often not visible on ultrasound that early.

Please cross your fingers that this is just a false positive!

Saturday, August 17, 2013

Eli's 2nd Birthday

Lemon blueberry cupcakes!
As you know, Eli turned 2 on August 5th. What you might not know is that since he was born early, his adjusted 2 year old birthday is actually today. So, it seemed appropriate to write about it now.

We are so happy to be able to celebrate with our adorable little guy. He is rapidly turning into a little boy, and he has such a happy, outgoing, warm, and engaging personality. He loves giving hugs to everyone and everything (including doors and vacuum cleaners!) and is sometimes a bit of a clown putting random objects on his head and calling them a hat (which he finds very very funny). His language has really exploded and he's mostly speaking 3 and 4 word sentences. He's unfailingly polite and uses "please" and "thank you" automatically now. We can't help but be entertained by his very sincere,"no thank you" when we tell him it's time for bed! He's also come up with easier to pronounce names for his grandmas and grandpas: grandpa is "Poppa" and grandma is "Gah." We think it's pretty cute, but Grandma Kerry isn't thrilled with the nickname!

Lovin' his birthday hat
Physically he's also doing great. He's slightly above average height and a bit below average weight. He loves to climb and run and is always very active. His eating has gotten somewhat pickier, but he still loves to eat in general and dipping food into ketchup or yogurt makes everything delicious! His favorite foods are chicken nuggets, pizza, ketchup, yogurt, frozen peas, and any kind of fruit. He's pretty good with a spoon and fork and we rarely need to use a bib when he eats these days -- he absolutely hates to get his hands dirty and insists on being cleaned up immediately when he gets food or marker on them (just like his daddy at that age).

We've been very lucky so far in that he's not really all that "terrible" of a two year old. He certainly has his moments, but they're fairly rare and over quickly. Our pediatrician's prediction is that it's unlikely his behavior will change all that much at this point. Hopefully she's right!

He's doing very well at our preschool/daycare and usually plays very nicely with the other kids there. He has a friend, Kai Kai, who he's currently very enamored with and he talks about her constantly. He's recently started participating more in preschool activities and often has art projects to bring home (which we proudly display on the refrigerator, of course!). He's progressing well with learning numbers and letters and can sort of sing the alphabet song (while brushing his teeth) and sort of count to 10 (he skips a few numbers). He recently started swim lessons with Chad and is learning to swim underwater, kick, and blow bubbles. He loves swimming and is very comfortable in the water.

Everyone loves cake time
We celebrated Eli's birthday with a handful of friends and family on August 4th. First we all went to the association pool and had a great time swimming, splashing, and shooting water guns at one another. Then we returned to our house and ate pizza and birthday cake. Eli received lots of cool gifts and he was quite overwhelmed by it all. He ended up only unwrapping a few presents that day. We decided to save a few for later once the novelty of the new ones wears off. Thank you so much for being so thoughtful and generous to him!

Overall, we feel so blessed to have Eli in our lives and we are really enjoying the opportunity to see the world through his eyes and teach him to explore it.

Reading a card

It lights up and plays music!

The space shuttle flies upside down, Gah!

Weight: 27lbs (38%)
Height: 34.8 inches (58%)
Head Circumference: 47 cm (12%)
BMI: 15.8 (26%)