Our Journey With Child Loss Posts

The only word I can use to describe this week is rollercoaster. It has been the fastest, most wild and most disappointing rollercoaster we’ve been on thus far.

Since 17 weeks, we’ve had the news that our baby boy’s critical aortic stenosis had rendered his left ventricle dilated, scarred and severely dysfunctional. His aorta is tiny, and he is not a candidate for any surgical intervention both now in the womb and also at birth. His leaky aortic and mitral valve were absolute contraindications for the palliative surgeries, and a dilated left ventricle complicates the Norwood procedure and decreases its chances of success. The Norwood procedure is the first of three “band aids” they perform on babies born with Hypoplastic Left Heart Syndrome, and happens to be the most complicated one with the highest mortality rate. Until very recently, baby G did not have a diagnosis of hypoplastic left heart syndrome (HLHS), as his left side of his heart was not hypo plastic, but instead dilated.

At our last echocardiogram, we discovered the mitral valve and the aortic valve were no longer leaking and that the aorta was even smaller in comparison to the pulmonary artery. The cardiologist mentioned that our case was discussed during their grand rounds, and mentioned in passing about the Norwood again, but that she wasn’t sure baby G was a candidate and if he was, he would certainly be a high risk one because of the other cardiac comorbidities that he has.

When I showed up to my regular MFM appointment on Monday, she explained again that our case was discussed the previous week among all the disciplines involved in our care. She told us that several of the cardiologists on the panel felt strongly that our baby’s condition had evolved into a HLHS, which in some cases is “fixable” with a success rate of up to 85%. WHAT. She explained that she was feeling like we were lead down a very specific path where we had chosen a palliative route, due to the initial information about G’s heart, but that his condition had evolved and it was possible that this was something that surgeons could, in fact, fix. We could potentially bring our baby home with us. She strongly urged us to seek a second opinion with a congenital pediatric cardiac surgeon at St. Joseph’s Hospital in Tampa. I left that appointment in total shock and emotionally drained thinking about the possibility of taking a baby we have completely prepared to lose, home with us.

On Tuesday, I called the surgeons office to see when they’d be able to see us since I’m 32 weeks pregnant. If we were going to completely veer off the course we’ve prepared for, time was of the essence and this ball needed to get rolling. They already had all of our images and information and asked if we could come in on Wednesday at 10am. I said yes, and the appointment was set.

Wednesday came and off we went to the surgeons office. We met with him and his PA and discussed the course of the pregnancy and relayed the information we knew. He had reviewed our images from our last echo, as well as all the office notes. He spoke a little bit about HLHS, and the surgery, but didn’t want to go into too much detail because he wanted us to go and have another echo and consult with one of the perinatal cardiologists at St. Joe’s. He asked if we could go over right then. Of course, we said yes.

The MFM nurse navigator met us after the appointment to discuss more about the processes at St Joes, and shared with us about her personal and professional experiences with congenital heart malformations, and how these things are handled at their facility. We toured the PCICU. She set the echo appointment up and we headed over there. When it was complete, we met one of the perinatal cardiologists and discussed in depth his findings on the echo. I guess since we had just had one two weeks prior I wasn’t expecting any changes, but considered we’ve never had an echo without a new finding I shouldn’t have been surprised.

First of all, the left ventricle was no longer big and dilated, but had shrunk significantly. This, he explained, is the natural course of malformations that lead to HLHS. Initially, the LV dilated and calcifies, and eventually it does shrivel up and become hypoplastic. The surgeon had explained that a hugely dilated left ventricle would make the Norwood a bad idea, and that his understanding from speaking with Dr. Gupta and reviewing our images was that baby G’s LV was still large. So, I guess this was “good” news? This particular doctor clearly likes to deliver good news first, because he went through HLHS in detail, explained the three surgeries performed on these babies and their success rates, expected hospital stays, etc. St Joe’s has been able to cut the length of stay significantly (which, for those of you who are not medical people, is really really good).

And then, the sucker punch. Our baby had an official diagnosis of Hypoplastic Left Heart Syndrome, which according to our MFM does not generally lead to the decision for palliative care, at least not right away. But our baby had also developed a severely restricted (but more than likely) intact atrial septum. It’s incredibly complicated, but to put it in basic terms, all fetuses have two holes in their heart, a PDA and a PFO. Because oxygen is delivered to the baby through the umbilical cord (and not the lungs), these holes help to ensure the baby bypasses the lungs, and in a baby with HLHS, the PFO specifically (found between the top two chambers of the heart) is essential. It is essential that it is open, so that blood can bypass the nonfunctional left side of the heart and go to the right side to be pumped out. The closing of this hole was a new finding and one that does not have favorable outcomes. As soon as the baby is cut off from the placenta (its oxygen source) at birth, the baby loses the ability to pump oxygen rich blood to the body. This would not be the case if his FO remained open, as there are medications to keep the holes open until HLHS babies undergo the Norwood procedure. Additionally, with the hole now closed, increased pressure on the pulmonary vasculature is created because there is no transfer of blood from one side to the other to skip the nonfunctioning lungs. These kiddos often end up with severe pulmonary hypertension and thus severe lung issues. There would be less than a 50% chance he’d make it to 1 year old, and that’s if he survived the immediate-upon-birth cardiac catheterization to puncture a hole between the top part of his heart and introduce a stent in there to create the flow of blood to the right atrium. AND if he survived the Norwood.

They explained that my delivery would look something like this: a c-section at 38 weeks in an adult cardiac operating suite at 8am. 30+ people would be in the room and prepared to immediately bring baby into either the pediatric cardiac operating suite or the pediatric cardiac Cath lab, both of which are adjoining to the operating suite I’d be delivering in. They’d immediately attempt the atrial septoplasty and he would be brought to the PCICU with an attempt to stabilize him. A few days later, if stable, he would potentially undergo the Norwood procedure which has a mortality rate of 5% in “simple” HLHS cases, but of course is much higher in our case. Long term outcomes, he reiterated, were not great. Kiddos often developed severe lung issues even if all interventions on the heart were successful. Many kids also end up needing a heart transplant, which in itself is very temporary as they do not last forever. He explained that a baby who receives a heart transplant could potentially require three more before they’re 25 years old. These babies are incredibly fragile, even without transplant, and a common cold virus often earns them a stay in the ICU. With severe lung issues likely, an ICU stay where baby requires intubation, may prove to be too much for him. And most of all, the likelihood of him having a good quality and “normal” life, though not zero, would be very low if he were to survive all the surgeries and overcome all the obstacles. AND I would have to make it to 38 weeks which seems unlikely at this point considering my amniotic fluid is already off the charts high.

So in a matter of three days, we had a rock solid palliative care plan, which turned into a glimmer of hope that our baby may survive this, to meeting a bunch of new professionals, just to find out that yet another complication had arisen with baby G’s heart. To say it’s been overwhelming is an understatement. Neither Barry nor I got too excited about the prospect of our plan changing, and maybe it was self preservation because we both had a feeling it wouldn’t turn out the way that we both desperately wanted it to. At the end of every day, we both wish so badly that we weren’t faced with this situation. We wish everyday that things were different and that our baby would be coming home with us. We don’t want to feel any guilt when all is said and done about the direction we go in and while there is a great argument on both sides of the fence, we have agreed that there is still only one decision that is best for our family. As soon as baby is born and the cord is cut, there will not be any oxygen rich blood circulating to his body. We will lose him within hours. There is no uncertainty in that. It’s the first piece of concrete information we’ve received on this journey, in fact. If he is born alive, and he has a mere hours to live, and those hours are hooked up to machines in a different room than me, I don’t think I could ever forgive myself for allowing his only time on Earth with strangers and not with us. And the guilt we’d feel if we put him through countless surgeries, put him on countless medications, only to be here on Earth with no quality of life or ability to enjoy it, would far surpass the potential guilt of letting him slip away peacefully in our arms.

 

It’s been a rough week (or two) for us. I’m thankful for some time off of work with the hubby this week as I know it won’t be too much longer before we’re both off of work together again when baby G comes. The fluid around the baby is very high which makes me look (and feel!) a lot farther along than I am. I am extremely uncomfortable and getting through the day with all the things I need to accomplish is proving more and more difficult. Lauren is having some severe feeding difficulties this week so that has also kept us busy. AND my 30th birthday is tomorrow. I usually love my birthday, but this year is just different. I am stuck, depending on the moment, in feeling like I have everything to celebrate, but also nothing at all. I am exactly where I want to be in life, with a great husband, beautiful children, a career, and the means to provide for our family everything they need. Except for that one thing that I wish so badly I could provide but cannot.

Our last echocardiogram showed further deterioration of baby’s heart function. The large blood clot is still hanging out in the baby’s left ventricle. His aortic valve isn’t working (which we’ve known for months, and is the cause of all the issues). But now, neither is his mitral valve. There is no antegrade (aka forward) flow of blood anywhere in his heart. It’s all retrograde (backwards). His aorta is measuring in at 2mm when it should be the same size as the pulmonary artery, which is 10mm. The right ventricle is still working, but is starting to dilate because it’s been working double-time for so long. There is no aortic insufficiency (leaking) or mitral regurgitation (leaking) because the valvular function is non existent. Both of these things were contraindications to surgical intervention, and since they’re no longer, our cardiologist explained that we could confer with a pediatric cardiac surgeon to discuss the option of a series of surgeries that could turn what is supposed to be a two ventricle heart into a one ventricle heart. They do these surgeries on babies born with a condition called hypo plastic left heart syndrome (HLHS) to reroute the blood flow and have the right side of the heart do 100% of the work. But, she explained, everything else about his heart and body needs to be perfect. His right ventricle needs to be in tip-top shape (it’s not), his lungs, brain, etc. need to all be 100%. And, of course, he needs to survive to term. And these kiddos end up needing heart transplants by 20years old, usually sooner.

So IF baby survives to term and IF the right side of his heart doesn’t weaken and IF his lungs develop like they should and IF I don’t have preterm labor from the polyhydramnios and IF he makes it through the birthing process and IF he gets transferred quickly enough to the facility who does the surgery he MIGHT survive the risky procedure which would be one of several he’d need. And if all of our stars don’t align, they we can meet with a surgeon who will likely tell us the same thing we’ve been hearing since June: your baby’s chance of survival is exceedingly low. It feels so wrong to bet against my own kid and make a conscious decision not to fight for him. But it feels even more wrong to go against my instinct that no matter what we do for him, his heart is just not strong enough to get him through any of that. And the thought of watching a team code him, intubate him, do those baby chest compressions we practice every year on manikin babies that we hope never to do in real life, until we tell them to stop, seems even more overwhelming to me. Because, in the end, we are still making the decision to stop life saving measures, it would just be after tubes, lines, chest compressions, etc. have been attempted. Our decision for palliative and hospice care hasn’t changed.

But, in light of all of this, we’re trying to continue our life and make it as “normal” as possible for Max and Lauren. We are thankful for them in this moment. They keep us busy, distracted, and most importantly of all, laughing. I mean, we are constantly laughing. It really is the best medicine. Our calendar is full of appointments, therapies, and things we need to do before Barry leaves again for his next USCG patrol. AND we are most likely moving in 7-8 months so we are busy researching locations that can accommodate Lauren’s medical needs. I think of baby G often, when I feel him kicking me and knowing he’s still okay in there. I think of all the scenarios that may happen, the hows and whens. The wheres. And I’m at the point now where I just want it to be here. I don’t want to wish my time away with him kicking me, alive, but I want it to happen so that we can deal with it. So we can meet him, so we can say goodbye, so we can continue on with our life. Not having him here is going to be devastating, and as much as we prepare for that to be our reality it’s not going to feel real until it is. But not knowing is killing me. I try not to dwell on it, though, because it’s something that I absolutely cannot control. I’m focusing on the things I can control, like how to be the best mama to Max and Lauren. They still very much need me and remind me everyday that despite this part of our story, it’s not defining our life and it’s not changing all the things we have to be grateful for. So, when a few of my friends from work decided to go to a DIY sign workshop, I chose the one that really spoke to me. I can’t wait to hang (cough, have my husband hang) it up in our bedroom, so that every night before I go to sleep I can look at it and remember all of the things we DO have in our life.

 

 

 

So I think I’ve touched on my daughter’s special needs, but I’ll recap. She was born without her corpus callosum, which is a band of nerve fibers that connect the right side of the brain to the left side of the brain. Most people probably don’t even know what a corpus callosum is, and take for granted it’s incredibly important function. We found out that Lauren was missing this part of her brain at around 24 weeks when I was pregnant. Not soon after, we found out that she has a genetic mutation that most likely caused this part of her brain not to develop. Luckily, this is the only abnormality in her brain which anecdotally has been shown to have better long term outcomes. Unlike our current pregnancy, which has been incredibly difficult (of course), with Lauren we received news “She could be completely fine, or she could be totally mentally retarded and incredibly handicapped. It’s a wide spectrum”. At 2 months, Lauren started to refuse to eat and we had to ultimately make the decision to have a feeding tube surgically inserted into her stomach. She has had problems with gaining weight and even now with “good weight gain” she is barely on the growth curve. Incidentally, many kids who have a similar genetic mutation as her have an extraordinarily difficult time gaining weight, so I really don’t pay much attention to her growth because in my opinion it can’t be compared to “typical” kids. She is growing, learning and gaining new skills every day. She is in Occupational Therapy (OT), Physical Therapy (PT), Speech & Language Therapy (SLP), and Feeding Therapy (FT). So on any given week, she has approximately 4-5 hours of therapies split up into 4-5 different appointments. Two of the therapies are at one facility, one is at another and one comes to our home. We also see several medical specialists: neurology, gastroenterology, genetics, endocrinology, ophthalmology, developmental pediatrician, and of course her regular pediatrician. Her medical appointments have finally gotten to the point where they’re either yearly or maybe 1-2 times a year. In addition to all of this, I work three 12-hour days per week and have weekly appointments for myself at this point in my pregnancy. When my husband is deployed, 100% of this falls on me. And honestly, I get through it all because it passes the time quickly and I don’t have much choice. I’m lucky we have an incredible nanny who doesn’t mind bringing Lauren to some of her therapy on days I’m working.

So a couple of weeks my husband came home after being gone for 2 months. He had some time off, and I could tell he was in a bad mood. I asked him what was going on, and he replied “I am on vacation, and we can’t even enjoy it or get anything done around the house because you have appointments scheduled all day every day”. Of course, immediately getting defensive, I replied to him something along the lines of: Yeah bitch, I do all of this shit BY MYSELF when you’re gone. Welcome to my life. Seriously, he has the nerve to be upset about me trying to do the best thing I can for our kids? Lauren will absolutely (and already has) benefit from all of this early therapy. Am I the only one who sees the importance of getting her this intervention? And his reply to me reminded me why he is the best freakin’ husband on Earth and why I’m so lucky to have him.

No Jess. I know how important her therapy is. You’re a rockstar and I don’t know how you manage it all. BUT this is not healthy. When do you get a break? When do you have time to take care of yourself? Isn’t there a way to schedule all of this so that you have time to breathe, too? 

I think every parent is guilty of prioritizing their children’s needs above their own. And even if you don’t have children, it’s easy to focus on work/school/friends/etc. and prioritize those things over self care. While I will argue that I don’t have much choice about how much “me time” I have in any given day, week or month, I am absolutely guilty of scheduling so many appointments that I am often out of the house from 8-4 on days that I’m not working. I would like to think that I’m doing it for the best interest of my kids (especially when it comes to Lauren’s therapies), but subconsciously I’m sure being out of the house and focusing on something other than our current situation is my own twisted way of not having to deal with what’s going on. That’s not to say that I haven’t dealt with it, because I think I have. But I have also neglected by own health trying to optimize everyone else’s. I find myself telling my doctors that “I’ll have that test, but I’m not honestly sure when I will have time to do it” True story, I told TWO different doctors in two different specialties that I couldn’t do something they thought important for my health because I don’t have time. I am officially THAT patient. Example: 4 weeks after getting a referral for a cardiologist because my heart rate was going well into the 150’s with shortness of breath, I was finally able to “fit in” an appointment. When they told me they were thinking of admitting me to the hospital to rule out some dangerous medical conditions, I literally said I didn’t think I had time to be admitted and asked if we could do it outpatient. I am the person that medical professionals hate. I’m realizing now that I really need to start making myself a priority because I need to be my best and healthiest self to take care of my kids. We are about to lose a baby and even though we’ve had several months to prepare, I’ve been offered by so many people/agencies/offices to be put in touch with counselors. Have I gone? Nope. Why? Well, 1. I’m stubborn AF and 2. I DON’T HAVE TIME. I saw a therapist when I was pregnant with Lauren and had a lot of trouble with the news that our daughter may have severe special needs and a terrible quality of life. I really should see one now, because even though I am okay right now, I don’t know if I will be when we have to say goodbye to baby G. I don’t really even want to think about it because it causes me to start to ugly cry. Which obviously means I need some outlet and should really ought to talk to someone about it. But why is it so hard to step back and engage in self care? I am open to any and all advice, because even though I can rationalize the importance of it, I’m not ready to start canceling or rescheduling appointments. This motherhood shit is hard.

It’s been a week and a half since our doctor told us we may only have “a couple more weeks” carrying sweet baby G. Since then, my husband has returned home from his patrol, and we’ve tied up just about all the loose ends for when the day arrives. We’ve had the opportunity to meet with several amazing professionals and I’m still in awe over how much love and support we’ve been shown on this journey. A few things I’ve learned this week:

1. Funeral homes aren’t as depressing as I thought. Not sure why I pictured dark, dreary and depressing. Well, actually I do know why. But, I digress.
2. But they are a little more “sales-y” than I thought. It felt sort of like a timeshare sale to me, but luckily a lot less pushy. We still left with brochures about how to go about making arrangements for ourselves. One step at a time there Charles, not really here for that. 
3. Sometimes doctors get a really bad rap. Because, you know, that one time you went to the doctor and they wouldn’t give you antibiotics and you were so mad you wasted your time going if all they were going to tell you to do was rest and increase your fluid intake. Just wants to make a buck, right?
   1. But the ones I’ve met have been more than amazing. From our MFM doctor, who has hugged me, brought me books from home, and gone above and beyond to help me through this crazy and shitty ride. To the cardiologist who can just give me a look and without saying a word, tell me how much she cares for us in this situation. Her job is not easy, but she’s the first to admit that it’s not as hard as mine. She has been able to give us bad news in the absolute most perfect way. She shows compassion, grace and love. She has not sugarcoated our situation, but she hasn’t pigeon- holed us into make a decision, either. She conferred with her colleagues, she was open to arranging for us to meet with surgeons and interventionalists, despite the fact that I knew that she knew we wouldn’t be candidates and that baby likely wouldn’t survive to term. But she did it anyways. To the neonatologist, who helped us understand the options and what we would expect if baby’s care was in the NICU/CVICU. To the palliative care physician, who helped us to understand how to approach this situation with our son. To every one of them who arranged their schedules to meet with us in a conference room all together, so that we could discuss our wishes. I’m a nurse, sometimes it’s hard to get doctors on the phone, never mind all in one place together. And yet here they were, all for us and for our family.
4. No one medical professional could do their job without all of the others. Doctors, nurses, advocates, managers, directors, medical assistants, doulas and more are all integral parts of care team for a family who is expecting to lose a child. 
5. Speaking of doulas… Did you know that there exist extraordinary people who specialize in hospice doula…ing? Because I certainly didn’t, but now we have one so that’s pretty cool. I’ve always kind of thought doulas were silly and unnecessary. My birth plan has always been “please deliver my child alive, and do everything you can to make sure I don’t die in the process”. But when you find yourself in a situation where you’re expecting to lose your baby, all of a sudden a hospice doula sounds like a huge asset. Chances are, I won’t be thinking straight in the moments after baby G’s birth. And even if I was, Barry and I have not dealt with this before and honestly we have no idea what kind of support/resources/information we will need. They do. We met with her today, and she inquired about a DNR. Psh, no, we don’t have one for baby. Seems overkill, no? Well, what if baby is born at home for some reason? When medic’s arrive, without a DNR, they’d have to attempt to resuscitate the baby. YIKES. Knowledge is power, y’all. 
6. Even if you don’t feel it, people are thinking of you and you’re surrounded by love. Always. I got a card in the mail from the CNO of the hospital I work at, telling me that she’s thinking about me and to reach out if I needed anything. Seriously. Doesn’t she have a hospital to help run? But it shows that there are still extraordinary people in this world whose compassion and empathy supersede their personal obligations. I’m sure it’s the exact reason she went into nursing and healthcare to begin with, and why she is so great at her job as well. 
7. You can only be so prepared. Right now, we’re okay. We can talk about it without ugly crying (usually). We are at peace with the decision we’ve made to make baby G, should he make it to term and be born alive, as comfortable as possible and love on him until his precious heart stops. That being said, there will be a lot of different and more difficult emotions we have to cope with after it actually happens. I fully expect that there will be a period of time where we won’t be okay. We won’t be able to talk about it so openly. We won’t be able to share in the joy of people around us, at least not right away. And that’s all okay. Barry and I are very introspective, and I think we both know what we can and cannot handle, and those things are very different for both of us. I’m finding myself triggered by the constant news stories of mothers/fathers abusing/torturing/killing their children. Anger, of course, is soon followed by immense sorrow and immediate resentment that those who don’t want children are often the ones who have them so easily. I know it’s a slippery slope to think like that, and it does nothing to help our situation, but sometimes I can’t help it. I’m human, and I’m flawed, just like everyone else. 
8. And finally. There is no right or wrong decision or idea. Not even one professional we’ve encountered has given us their opinion on what is right, or what they would do. Want to find something to dress him in? Cool. If not, we have supplies at the hospital. Want pictures? We have someone who can come and provide that service. Don’t want pictures? That’s fine too. Want to bring Max to meet him? Cool. Don’t know how to talk to him about it, or want some insight on how to handle it? Here are a ton of resources, ideas and people you can talk to to help you out. Want palliative care? We got you. Want CVICU/ECMO/prostin/heart transplant? We will arrange an entire team who will be ready when your baby gets here. Above all of that stuff, they’ve provided books, countless numbers of tissues, hugs and the most compassionate and empathetic presence I’ve ever felt before, and I won’t soon forget every one of the people who has helped us along this journey. 

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.

 

One of my very favorite things to do as a nurse is to educate. I feel so fulfilled when patients and their families feel empowered after I’ve been able to sit down and share some of my knowledge with them. Even as a new nurse, I recognized the importance of hospice and palliative care. It doesn’t take long in the medical profession to realize that we cannot “fix” everyone. And furthermore, even if we could, it really shouldn’t be our goal 100% of the time. Some of my most memorable experiences as a nurse have been regarding end of life decisions and care. I really feel that I will end up as a hospice nurse someday when I’m burned out on the exciting fast-paced nature of acute care.

The very first thing I remember learning in nursing school was that never, ever, under any circumstance should you attempt to comfort a patient or family with the phrase “It’s going to be okay“. Because, you would be lying to them. Even the healthiest of patients can take a turn for the worse after an event or surgery. Even when doctors, nurses, therapists, do all the right things, people die. And so often, in their journey to the end of life, they suffer.

I have found that the concept of hospice and palliative care is misunderstood but a large majority of people. There are so many misconceptions about what hospice and palliative care is, what their goal is, and how their loved one will be cared for under it.

“They’re just going to give my mom enough pain medication to kill her”

“Once he’s on hospice, he won’t be able to do the things he wants to do”

“Accepting hospice is giving up”

“I can’t stay at home if I am on hospice”

“If my dad is on hospice, he can’t see his doctor, take any medications, or receive any medical treatment anymore”

None of the above things are true, by the way. Don’t feel bad if you thought they were, because you’re in good company. Hospice is a benefit that everyone is entitled to. It does not cost your family money and you will never receive a bill for it. The individual must qualify with a diagnosis where they’re not expected to live past 6 months. The ultimate goal of hospice is to support patients and their families at the end of life, in whatever capacity they need it. If they are in immense pain, hospice services provide medication to help alleviate it. If the patient and/or family want counseling and grief services, hospice provides that (and not only during the dying process, but for months and years after). If the family needs education on what to expect at the end of life, whether it’s the physical manifestations of actively dying, or the process of making arrangements after the loved one has passed, hospice provides that too. It is a wonderful and amazing service that few too many people take advantage of. It is completely patient and family driven and the professionals in the organization are there as little or as much as you need them to be. They are highly trained people who are doing this because they’re passionate about it. You don’t wake up one day and decide to be a hospice nurse. It is not for everyone. It is truly a calling.

So as you can imagine, the idea of perinatal hospice and palliative care is not quite “mainstream”. But why? For one, babies aren’t “supposed” to die. Parents should never bury their kids. We’ve all heard that phrase and of course, in a perfect world it’s absolutely true. From the very first moment I became a mom, I assumed that all of my kids would outlive me. Because that is what is supposed to happen. And with the amazing advancements in medicine and technology, that idea is shared by neonatologists and other physician specialists everywhere. They do some unbelievable things in NICUs these days. They can keep a 24weeker alive now. They transplant organs into newborns. The therapies and treatment modalities for these kiddos are incredible, and some people think that advocating for hospice and palliative care is giving up the opportunity to potentially “fix” these babies. Choosing this route for your baby is giving up on him. Because, miracles happen and you never know.

But what happens when you do know? When second and third opinions have all confirmed the same thing: your baby’s heart is sick, and it’s getting tired. Even surgery isn’t an option. If he makes it to term, machines will have to keep him alive until he receives a heart transplant. We do not know the long term effects all of this will have on his body. On his brain. On his life. We do not know if all of this medical intervention will even keep him alive anyways. So what happens when you do know?

You choose the palliative option for your baby because the thought of your child suffering a painful death hooked up to machines and lying in ICU incubator is worse than anything you could ever imagine. Watching a code team attempt to resuscitate your baby would surely give you nightmares for the rest of your life. I have been in codes where the team knows the efforts are futile. Some are called quickly, and some are dragged out because the sobbing wife, mother, husband, father is standing right there. You need them to see that you did everything you possibly could to save their loved one. And there I would be, watching them, everyone in the room knowing that you can’t resuscitate a heart that doesn’t have the ability to pump. I would likely scream at them to please stop, and would be wondering why I even let them start CPR in the first place. So, here I am. Here we are, my husband and I, having made the most devastating and difficult decision we’ve ever been faced with. All in the name of love. We love baby boy so much that we can’t see the merit of putting him through all that medicine has to offer without any hope that he will be able to live a normal life. Of course, this decision is fluid, and if by some miracle he is born and his left ventricle somehow functions as it should and he proves everyone wrong, all of this changes, and we fight. But you’d better start lining up for autographs because baby boy will have books and movies made about him and his ability to defy literally the worst of the worst case medical scenario known to doctors everywhere.

I think that palliative and perinatal hospice is going to continue to gain momentum in an age where more and more conditions are being diagnosed prenatally. I feel “lucky” in the sense that I have had several weeks to let this news about baby boy sink in and have been able to mentally prepare for it. Surely if we didn’t know about his condition prior to his birth, the scenario where he’s being resuscitated in an ICU on machines would have been our fate. We would have had to make split second decisions that we likely would have questioned for the rest of our lives. I am so grateful for the amazing team of professionals who have cared for us through this journey. The high risk OB at MFM got me a copy of A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief

Her nurse calls to check up on me, to ask if I need anything or if I have any questions. The cardiologist cried with me when she was faced with giving us the devastating diagnosis. Everyone has hugged me, and I mean really pulled me in to comfort me. I think it’s easy to see people in the medical field as hardened, jaded people, especially for those whose job is to give terrible news every.single.day they go to work. But they are all people, who are in this line of work because they’re the best kind of human: the one who can empathize and comfort another human when they are at their most vulnerable. After having just been given the worst news of their life, they have that ability to pull you in, lift you up and be the exact support you need in that moment. Even if 10 minutes prior, they were a total stranger to you. They know that medicine is not infallible. And even if their course of action your situation would be different, they facilitate whatever it is you need and support you in it. I’m grateful I’m already a nurse because this experience would surely make me question why I wasn’t. If I’m ever able to provide to one person what my amazing team has provided for me, I will consider my career a success.

Maybe someday I will be strong enough to become a stronger advocate for perinatal hospice and palliative care than just writing a blog post about. I’m not sure if my experience will be beneficial or detrimental to helping others navigate this process (you know, it’s taboo to cry harder than the family, which is the main reason I don’t do pediatrics, NICU, or have pursued hospice yet). I also understand that this route is not for everybody, and respect those who choose aggressive treatment for their loved ones. It’s a very personal decision and not one that can be made lightly or in haste. If there is anyone reading this who would like to reach out to me, I’m more than happy to connect. We’re all in this together.