Month: August 2018

We have had 10 weeks now to mentally prepare ourselves for the inevitable passing of our precious baby boy. We’ve known for a majority of that time that we didn’t think the path to heroic measures was the one we were going to choose. We left it sort of open ended, choosing to deliver at a hospital where IF the baby surprised us, we could intervene. We would be surrounded by the resources to keep his DA open and make a decision, if in that moment it’s what we decided to do. Our cardiologist had conferred with several of her esteemed colleagues all over the state about our baby and about his condition. For a few appointments, not much changed, but as the weeks go by, more and more is happening. We knew the valve had begun to leak. Three weeks later, the MFM group found that baby had a big blood clot in his left ventricle (which can happen when that part of the heart isn’t pumping well, the blood kind of coagulates and forms a clot). The next week, the clot was taking up the entire ventricle. Because our baby’s chance of survival was “negligible” as the cardiologist put it, the clot is just a consequence of the physiological failing of his heart. If his prognosis weren’t so poor, this would be a big big deal because pieces of the clot would likely break out of that ventricle and cause a stroke when it found it’s way to his brain. Yesterday, I had a follow up at MFM and new finding this week is that my fluid is high. This is a natural consequence of heart failure in the baby. The right side of his heart has been pumping away but it’s getting tired. It’s getting tired and the doctor thinks we might be just a couple weeks away from losing him. It just got real.

We have mentally prepared for this whole situation but there’s something about picking up the phone and calling a funeral home that I just have not been able to do yet. We haven’t figured out any of the details. I don’t have an outfit. We haven’t figured out if we should introduce Max to baby. I never bothered to straighten out my LOA from work or even get educated on the process. We’re ready, but at the same time, we’re so not ready. Because how can you be really ready for something like this? I knew it was going to come. That sometime after November we would have met and said goodbye to sweet baby murph and would be on our journey to healing. But all of a sudden, two weeks sounds really.fucking.soon.

So I guess in between working full time, juggling 8-10 appointments per week, and making sure my family has clean underwear, I need to start nailing down the details. I am starting to realize this is going to be harder than I ever imagined it would be.

You never really realize what good company you’re in until you’re faced with a situation that makes you feel so very alone. I think that this can go for so many different life situations, but it’s especially true in our case. But the caveat is that you have to open up and you need to be vulnerable. We have had an outpouring of support from everyone we know. Friends, family, neighbors, colleagues, and the list goes on. There is a subgroup of people in my life who have reached out as moms who have gone through something similar to us. For some, it’s been decades since they’ve lost their baby. Others it’s been a matter of months. Others have lost more than one child. But every single one of them have reached out to me to offer support for something I can imagine is still so painful for them to think and talk about. According to the CDC, 1 in 100 pregnancies end in stillbirth, which is death after 20 weeks of gestation. Additionally, 15-20% of pregnancies end in miscarriage before 20 weeks and about 6 infants in 1,000 in the US will die in their first year.

I think that miscarriage has become less of a “taboo” subject in recent years, and I’m guess you’d be hard pressed to find someone who doesn’t have firsthand experience with it. We’ve had three miscarriages, all after Max and before Lauren. And it is painful to those who go through it. Whatever situation you’re faced with where you don’t get to take your baby home, or don’t get to raise them into childhood, adulthood and beyond, sucks. But an even crazier thing is that when you open up to people, you realize you are not alone. There are a lot of people in your life that you may not realize have buried a baby or suffered an immeasurable loss like you’re facing or have faced. Some of the strongest and most badass women I’ve met, known and worked with have walked in my shoes. They’ve lived this nightmare, and they’re strong enough to come and embrace me through mine. I am eternally grateful for this group of strong, powerful and resilient people who can help to lead me to the other side. Because I’m still over here, feeling my baby kick but I know it’s only a matter of time before it will be time for me to cross the other side. To the side where I’m no longer just a mom, but a bereaved one. Baby boy’s life here on Earth will end and I will be tasked with keeping his memory and my love for him alive despite not having him here with me. I need all the guidance I can get even though I know that no amount of preparation will make it easier the day it comes. So for now, I continue to wait. And all of the love and support from everyone around me helps to get me through the hour by hour life I’m currently living in. So, thank you <3

 

I’ve said it before, but I’ll say it again: I am a planner. I am not spontaneous. I don’t really love surprises. I need to mentally and emotionally prepare myself for everything and part of that for me is knowing exactly what is happening and when. I’ve really always been this way, but it’s especially important now because Lauren, in an average week, has a physician’s appointment and at least 1-2 hours of therapy. I coordinate her appointments with nap times, mealtimes, my work schedule, Barry’s work schedule (when he’s home), school drop off for Max, appointments for myself and all the other miscellaneous commitments I have in my life. There is not one day of any given month when I don’t have something planned. It’s busy, but I know where I have to go and what time I have to be there.

It is absolute torture for me not to know when baby boy’s heart is going to get too tired to continue beating.

Where am I going to be? Am I going to be at work? In the car rider line picking up Max? At a doctor’s appointment? In the grocery store?

How am I going to know? Will I feel him stop kicking? Will my water break? Will I start bleeding? Will it be at an ultrasound appointment where the flicker of the heart beating is no longer visible?

Will my husband be in town? If he’s not, or even if he is, what am I going to do with my kids when I’m at the hospital? How am I going to mentally and emotionally prepare myself for THAT?

Should we bring Max to meet him? Or will that be too much for a four year old? Will we regret him not meeting his brother? Is there even a right answer?

The other day I booked a vacation trip for Barry and me (Can I get an amen?). The first real vacation, aside from small weekend or overnight trips, we’ve gone on since our honeymoon. It’s in January. And I CAN.NOT wait. I keep thinking about how much we need to get away and how nice it will be to go away without kids for several days to just relax. I feel almost guilty about how happy I am to be taking a trip, because it will obviously be taking place after we lose our baby boy. I’m caught between wanting to continue being pregnant because I know he’s still alive, and wishing the pregnancy away because I know what’s coming. I just have no idea when. Or how. Or under what circumstance. There is a possibility, though ever so slight, that he will make it to term and be born alive. So three more months of this. This waiting. As I’m more noticeably pregnant, more people ask me about the baby. It is getting so hard for me to pretend like everything is okay, and sometimes I do find myself blurting out “I’m due in November, but the baby is sick so it could be any time now”. Or “We’re just waiting now….for him to pass away”. My gosh, that’s so depressing to say to someone who is asking you about your baby. And so awkward. But it’s true. At this point, and in every moment going forward, we’re just waiting. I almost feel like it would be better if I knew when it was going to happen. I don’t like surprises, and even though we know what’s coming, it will be the worst surprise of all when it finally happens.

 

It might not come as a surprise to many of you that know us, that our first reaction to finding out I was pregnant again was most certainly not joy.

Last year, starting in March (when Barry was gone, of course) we began what ended up being a three month roller coaster when I was pregnant with Lauren. What was supposed to be a routine anatomy sonogram went from “we think we see something with her heart”, to “I see a major defect with her heart” to “She also appears to be missing part of her brain” to “We think your child may have some sort of a syndrome”. Blood tests, amniocentesis, fetal echocardiograms, fetal MRIs, consults with neurosurgeons, cardiologists, neurologists, MFM, neonatologists, and geneticists. And every single appointment ending with “Your child could be completely fine, or she could have profound delays without any quality of life”. We knew she was missing her corpus callosum, and we were expecting she may need heart surgery and would be admitted directly to the NICU at birth. As her due date approached, we received news that Barry would have to leave with his boat, despite the fact that I was almost due with a baby we knew would be sick. So he left, and four days later at my routine 38 week appointment, I was told I had to be emergently induced due to low amniotic fluid. I’m forever grateful for the friends that stepped in to help me, but my husband missed the birth of our daughter. She was sent to NICU and I wasn’t able to see her for 8 hours after her birth.

All that to say: we were done having children. We had our boy and our girl. Our daughter was likely going to have special needs, even if she presented on the more functional side of the spectrum. A third child was something we joked about, like “look at those poor parents with three children, they’re outnumbered and their life looks pretty chaotic, glad that’s not us!”

Barry was on patrol when I got those two pink lines, and I sent him a vague e-mail:

Subject: Can you call me later

When you get a chance

Sent from my iPhone

He must have been online, because it wasn’t even 20 minutes later that he called me. They have a satellite phone that really is supposed to just be for emergencies. I remember picking up the phone and just crying. And then saying, “I’m fucking pregnant”. Luckily, I married someone who’s actually able to deal with unexpected life circumstances without freaking the hell out (unlike me, obviously). I remember exactly what he said. “Jesus, Jessica. I thought someone died or something!”. “No, it’s way worse than that” (I can just imagine the eye rolling). He let me cry, and lament, and have my pity party and as soon as I was done, he told me to calm down and that it was going to be okay. He told me that if the reason I was so upset was because I was afraid what his reaction would be, I could relax. As he always does, he calmed me down and again able to the be the rational one in the relationship.

It was several weeks before I was able to think about being pregnant without crying. I was not happy. I was going to have kids 18 months apart. Lauren was 9 months old and I was still busy carting her around to multiple doctor appointments, weekly therapies, tests, on top of working full time and managing a household while my husband was gone for months at a time. How in the actual hell was I going to even survive. But then, all of that worry and anxiety eased and we both started to get really excited. We were going to have another boy. Max is our buddy and how awesome was it going to be for Lauren to have a big brother and a little brother to look after her? We knew it’d be hard now, but the thought of big family holidays and vacations, and just making more memories with another kiddo started to sound better and better. It was going to be great, and we were ready.

I stayed on all the medications I was taking. A few of my allergy medications, and Zoloft that I was still on for my PPD after Lauren. They all were considered safe per my doctor. I ended up weaning myself from the Zoloft just to be safe, but had continued to take my Singulair and Claritin. And of course the prenatal vitamin. I toned down my coffee intake in the first trimester, though I still drank about a cup a day. Again, considered safe in moderation.

With Lauren, we knew that her random gene mutation caused her ACC. Neither Barry nor I have that mutation, so it was a totally random event. With baby boy, his genes are perfect. Literally every other part of his body, is perfect. I remember rejoicing when they said his brain was perfectly normal. Because that is what I was worried about.

I’m always the first person to say “it’s not your fault” or “it’s nothing you did” when someone is faced with a situation like ours. Because, it’s not. But I find myself feeling so guilty every day. Guilty that I didn’t want him for so many weeks when I found out I was pregnant. Guilty that I wished on so many occasions I wasn’t pregnant. Or that maybe the pregnancy wouldn’t “stick” as we had happen so many times before. Guilty that I continued to take medications through the first trimester. Guilty that I caused this somehow, by something I did, something I didn’t do, or that we’re being punished for ever having thoughts that we didn’t want a third baby. Because now we’re being tortured by wanting him so bad, and knowing that we won’t get to take him home.

Today I am bitter. And maybe even a little bit angry.

This past week, a mother dragged her 4 year old daughter into a river in Tampa and intentionally drowned her. The little girl was kicking and screaming as her mother, the very person that conceived, carried, birthed and raised her for 4 years, held her under the water so she would die. And die, she did.

Every 25 minutes, a baby is born addicted to drugs. Drugs its mother intentionally decided to take while carrying her innocent baby.

Today, I got to take care of a mom who decided to partake in illicit drugs while pregnant, who received no prenatal care, but who got to take her baby home. She got to spend her pregnancy blissfully unaware of any complications she was causing by introducing her baby to cocaine before it was even born. And then, the baby was born healthy. Fucking healthy. And this person got to take.her.baby.HOME.

I am not a perfect person. But never have I ever smoked, or touched an illegal or illicit drug. I have never had a sip of alcohol while pregnant. I go to every appointment, I consent to every test, screening, blood work order my doctor suggests. I take that horse pill of a prenatal vitamin every.single.day. In fact, I have literally never missed one. I have a safe home. A good job. A wonderful marriage. I’m a good person who puts my children’s needs above my own. And I don’t get to take my baby home. I don’t get to take my baby home. 

I hate that I feel this anger and this bitterness. But I can’t help but wonder why we are surrounded by people who don’t want and have no intention of caring for a baby, but continually have them anyways. Who choose to do drugs and refuse to care for themselves and their growing child, but have a baby who is born without catastrophic birth defects. Why there are so many GOOD people who try for years and years to get pregnant but can’t. Or people like us, who have to withstand the heartbreak of carrying a baby who isn’t going to survive because we hit the shitty jackpot of our baby not developing correctly. And we probably will never know why. Some things in life are really not fair.