Our Journey With Child Loss Posts

This is a theme that my need-to-always-be-in-control brain has echoed for the last 10 months or so. My parents would argue, though, it was probably my favorite and most utilized phrase likely since I learned to talk. I guess I’ve always had a sort of obsession with “fairness” and what I perceived as just. Despite being told almost constantly by my parents (in varying tones of voice) “LIFE ISN’T FAIR JESSICA!”, that message never really got through to me. It’s something I still struggle with. Fairness. Or, rather, a lack of fairness. There are a lot of things in life that are not fair. Like when a colleague gets preferential treatment by a boss. Or when someone else takes credit for your work. Or when your baby dies even though you did everything “right”.

I continue to struggle with this ideology that there should be justice. I guess I should have been a lawyer because in healthcare the constant pressure, stress, short staffing and unsafe conditions aren’t going to end. There are millions of nurses like me who want to stand up for what is “right”, both for patients as well as for staff. But that’s just it, fairness is all in perspective. What I perceive as unfair will always aid in meeting someone else’s goal. I see short staffing, others see dollar signs, because that’s their job and that’s their focus.

Even though I still struggle to recognize the fairness in losing our baby, I’m trying to let go of constantly feeling like everything that happens in life needs justification. Some things just happen. Things that are completely out of our control. The way hospitals run are not in my control. Gabriel getting sick was not in my control. What people think of me is not in my control.

What is in my control, though, is how I deal with all of these things that aren’t. I’m not going to change anyones mind when they don’t recognize there is a problem.

Oh, and ruining my kids day with the unfairness of not allowing him to drink chocolate milk in my bed this morning. That was very much in my control, and when he whined that it wasn’t fair I just had to laugh.

It’s almost February and just about three months since Gabriel was born. After he was cremated, we intended to spread his ashes somewhere locally as a family. We wanted it to be intimate and special. Well, as special as spreading your baby’s ashes can be.

We visited a few different places but none of them felt right. So, we still have him with us in our home.

Barry came up with an idea that I loved: renting a boat, and spreading him in the gulf. I still love the idea of doing that, and it’s likely we will. At some point, anyways.

I don’t feel ready. I thought that I would. I don’t know why I thought I knew what it would be like to have some finality of the nightmare that, in the moment, felt like it would never end.

Part of the reason we made the decision to cremate Gabriel was because we move every couple of years, and we didn’t want to bury him somewhere we may never return to. While we like Florida, and feel that we will come back at some point, it’s always possible that we fall in love with another location and decide to settle there after Barry’s CG career is over. If we buried him here in Florida, that would be it. We could never live anywhere else.

Now, of course that isn’t true. We could always live elsewhere but I would always feel like we had abandoned him. If we weren’t there to visit him or his grave, I would have a hard time getting through the day. Just thinking about that makes me feel guilty.

I think that Barry wants the finality. He wants to lay Gabriel to rest in the sea and for us to continue to live our lives. I don’t know why I’m feeling so conflicted. It’s not like I think about it every single moment of every day. Whether his remains are sitting in a box in our bedroom, or scattered in the ocean shouldn’t matter, right? I haven’t even opened up the box that contains the box of his ashes. Hell, we haven’t even looked at the pictures we had taken before he passed away.

But this is part of the journey of child loss. It doesn’t make sense. If you spend all your time wondering “why”, it will consume you.

So I try not to. I just shrug and tell Barry that I’m not ready. And that’s that.

Every few years, my husbands job changes and we pick up our family and move. To someone who hasn’t lived this sort of life, it probably sounds terrible. I have embraced this military lifestyle and enjoy experiencing new places, new jobs, and making friends all over. It enables (read: forces) you to make friends quick. When you’re thousands of miles and a plane ride away from your family, you have no choice but to rely on other people, some of whom you may have literally just met. While most moms joke that making mom friends is like dating, us military moms take it a step further- “You seem really cool and our kids get along great! Can I use you as my emergency contact at my sons school?”

I’m not much into feeling bad for myself and am exceedingly good at saying what is on my mind (ask anyone who knows me). This weekend my threshold for bullshit was met and I found myself wondering just how much I can take. This, paired with the fact that we are preparing to move in the next few months, got me thinking about the last three years. We like Florida a lot. We love our house, we’ve made some great friends, have great neighbors and a support system I never knew I was capable of making. But y’all. This tour has been rough. From start to finish, it has been one crap thing after the next. I am pretty sure I am “that” friend now. You know, the one that you feel bad for and tell your significant other about. The one who has the shittiest luck and seems eligible to have a sitcom written about their life. Yeah, that’s me.

It was February 2016 and we just found out we’d be moving from Newport, RI to St. Petersburg, FL. Max had just turned 2. We wanted to try to have a second child and in April we found out we were pregnant. I went for a dating ultrasound in May and that’s when we found out that there was no baby. It was a “blighted ovum” and we opted to let my body do it’s own thing. I told my OBGYN we were moving in a month, and she thought that it would likely pass by then and there’d be nothing to worry about. Well, I started bleeding about a month before moving and before I knew it we were in Florida and it still hadn’t stopped. I’m pretty much the worst patient on Earth since I’m a nurse, but I figured I should probably see a doctor. Well, cool thing about Florida is that there are a bajillion people who live here and most of them are old. So, I had to wait for Tricare to change my region since we moved from up north. Then I had to wait until they assigned me a doctor. Then I had to wait until they could see me, but “lucky” for me, when I told them I was miscarrying and had been bleeding for over a month they saw me fairly quickly. They did an ultrasound and it was determined I needed to see an OBGYN “immediately”. Well, I called 8 different OBGYNs, some of whom actually laughed out loud when I said I needed an appointment soon. “Um, so you’re a new patient? We are booking new patients in August”. *SIDEBAR: During this time I also picked up freaking HEAD LICE for the first time in my life at 27 years old, presumably from one of the hotels we stayed at. Yup. So we had just closed on our beautiful house, was in the midst of unpacking, job searching, finding my way around a new town, oh, and miscarrying and trying to find a doctor who would see me, and in a head lice crisis all at the same time* I finally got in to see an OBGYN a couple days later and the day after my office appointment I had a D&C. And a month later my husband left on his first patrol which was about 7 weeks long. So that was our introduction to Florida.

In September, I found out I was pregnant again. The abbreviated version of this is that we found out Lauren was missing her corpus callosum, had a potential serious heart defect and her functional status would fall on a spectrum of “can’t even tell something is wrong” and “severely disabled”. Her pregnancy was physically a breeze (unlike Maxwell’s), but mentally and emotionally it was torture. We knew she’d go to NICU because they needed to rule out (or in) something called coarctation of the aorta which she may need surgery for. I was high risk because of this, so I followed with the MFM group. I was 38 weeks pregnant when Barry’s command decided that he was going to get deployed with them. They left St. Pete for Aruba, and it was decided that he would go with them on the boat, and immediately fly home from Aruba to be here for the birth. Ordinarily, commands don’t do this so close to the due date, but this one did and that’s all I’m going to say about that. I’m sure you can guess what happened next. He left on a Tuesday, I had my standard 38 week appointment that Friday. Max was at daycare and I had an afternoon planned to get a pedicure and lunch after my appointment. Well, that appointment would be my last one with Lauren as I was sent to L&D from there to be induced. The amniotic fluid around Lauren was dangerously low and could have caused her to pass away, so I needed to deliver ASAP. She was born around 1pm on Saturday. Barry got home at 8pm Sunday. *You know how I talked earlier about making quick friends and relying on people you hardly know. Yeah. The phone call went something like this to my friend Amy. “Hey. I have a problem. I have to go and deliver this baby today. Max is at daycare in your neighborhood, I don’t even know the address, but they have a white mustang in their driveway and they live near your main entrance. Any chance you can take him for the weekend?”* So my BFFL Ashley was my stand in partner and followed Lauren to NICU after her birth. She gave me updates, sent pictures, and relayed info to me from the nurses and doctors until I was able to go up and see her myself.

So let me recap Florida real quick: miscarriage, head lice, crappy pregnancy filled with anxiety over my unborn baby, husband missing the birth. That brings us to June 2017 when Lauren was born. Lauren had a couple inpatient hospitalizations, intense therapy, feeding tube, etc. since then and her limitations have landed her somewhere in the middle of that spectrum we talked about earlier. She is making progress, but she is much more affected than many of others with her condition. Our week is filled with doctors, therapies, special feeding accommodations, etc. Fitting it all in sounds impossible and sometimes I feel like I can’t do it anymore. But, I do.

And as you all know, we got the surprise positive pregnancy test in Feb 2018 that we’d be parents to baby #3, and all the things that followed. We thought that 2019 HAD to get better. And in some ways it has, but the shitstorm has continued and I’m writing this on January freaking 21st.

The government is shut down. My husband serves in the only branch of the military not getting paid. I’m lucky I have a job where I can make decent income to get us over the hump. Well, I did anyways. Until we found out our nanny was involved in some shady jerry springer type situation and long story short, we no longer have childcare. So here I am, the only source of income for my family currently, figuring out how (AND IF) I can piece together childcare for the next few months before we move. Lauren has special needs, I need to find someone who is willing to learn how to use a feeding tube, who is willing to bring her to therapies, who is willing to watch my kids for 14 hours a day when Barry leaves, and who doesn’t want me to pay her $100 an hour to do it. Oh, and I need to find someone like before Wednesday of this week or my only option is to call out sick to work. And while I won’t go into details about ex-nannys personal problems, it was a situation that forced us to change locks, install cameras, go to doctors, etc.

Of course, there were other little things that happened, like our house getting infested with fleas, Max aspirating on bubbles from the bubble bath, and things like that which weren’t mentioned in my pity memoir, but you get the point. I guess I’ve gotten used to the fact that we have literally the worst luck imaginable. “Murphys Law” anything that can go wrong, will go wrong, it’s a thing. And it’s even more of a thing considering our last name is actually Murphy.

So here we are on 1/21/19, looking at each other and saying “it has to go up from here”, “what else could possibly go wrong”. But, a lot more could go wrong, I know that.

Life in general is funny like that. It’s both an uphill battle and a beautiful ride. It’s both a wonderful journey and a journey through hell. You learn from it whatever it teaches you, and sometimes they are lessons you never cared to be instructed in. Like losing a child. Or having a special needs kiddo. Or learning to survive months without your spouse. I didn’t “want” any of those things to happen to me. I didn’t care to figure out what there was to learn about watching my baby die in my arms. But now that it has happened, I learned that I can move on. I can still be a good mom to Max and Lauren. And even though right now I am discouraged, sad, angry and anxious when I think about all we’ve been through and all we still have to get accomplished (and I’m just thinking short term), I hope I can get to a point where Barry and I can laugh and smile about this journey. We can talk about our journey through hell, and feel proud that we came out the other side and didn’t allow ourselves to succumb to the metaphorical devil. Because believe me, there have been moments, and even whole days where I’ve wanted to give up. Where I was SURE I had reached my max fill of allowable bullshit and moving forward was not something I could mentally or emotionally handle. Then, I remember to give myself some grace. I pour a glass of wine, take a hot bath, go to bed early and tell myself that tomorrow will be a better day. And sometimes it’s not. But sometimes it is. And when it is, I get some breathing room to prepare myself for whatever ridiculous hurdle I’ll have to carry myself and my family through next. Because really, that’s what life is. A whole bunch of hurdles of different heights you have to learn to jump over, on the fly, with no notice. At first you stumble, and fall flat on your face. Over and over and over again. Until you put in the work to figure them out you’ll continue to fail and get frustrated. And once you learn how to handle them and have the tools to do so, they’re no longer impossible hurdles, but mechanisms to help you soar.

In the past few weeks, life has picked back up where I left it after Gabriel’s passing. We spent months and months planning on the inevitability of his short life and cherished our moments we had with him. When we returned home, the first week was agonizing and I remember just wanting to lie in bed and cry (which I did plenty of, by the way). Now that I’ve returned to work, and school has resumed after the holidays, life has become busy again. But it’s not the same busy as it was when I was pregnant. Lauren still has her therapies, I still have work and Barry still has commitments at his work. But I’m not rushing to exams and specialists. I’m not making plans for the death of my baby anymore. I feel guilty that I don’t think about it all day every day. And maybe it’s because I’m so busy, and because we’re planning our move to New Jersey in a few short months. Or maybe it’s because I haven’t really dealt fully with his death. I guess I don’t really know how.

Every so often I think about him and it hits me. It hits me like a ton of bricks. Like someone punched me in the gut. My baby boy isn’t here.

Last night, I was brushing my teeth and getting ready for bed when it hit me. I don’t know why, at that moment while I looked up into the mirror that it hit me. But all of a sudden a sadness washed over me. It took my breath away. Oh my God. My baby isn’t here. I should be exhausted from nighttime feedings. I should be anxiously awaiting the first time he rolls over, his first belly laugh. He should be smiling at me and at his big brother and sister every day. He shouldn’t be sitting a tiny baby urn on my dresser.

Thinking about all the things he would be doing right now if he were here just brings me back to the brief moments we had with him. I miss him so much. I hate that I never got to see his beautiful eyes. Or his smile. I hate that he never got to see our faces and how much we adored and loved him. How much, with every fiber of our being, we wanted him. That this really shitty luck struck my family. Again. I try not to dwell on all of the what ifs but it’s so very hard when my heart hurts to hold him again and have him here with us. I know he’s not here. I know that he died. But it still really sucks.

These are among the most magical years for Christmas. Maxwell is all about Santa, presents and the magic. I want so badly to soak it all up because I know these times are fleeting. But this year, I am having a hard time. Well, I wasn’t, but now that I’m sitting here on Christmas morning without my husband, without a visit from Santa, and without the new baby we so badly wanted, I can’t bring myself to be happy or excited. We knew Barry wasn’t going to be home for Christmas. We’ve been planning for Santa to make a special trip to our house as soon as he’s back. As grateful as we are for the USCG and how much it has given us, it’s hard to look past all of the things it also takes away. It takes away our daddy and our husband on holidays, birthdays, anniversaries, weddings, and funerals. It takes away our ability to be together on days like today where I’m sure he needs us just as much as we need him. I feel lucky that I get to be here, at home with our kids on Christmas because Barry doesn’t. But selfishly, I really want him here so that I don’t feel like I’m bearing the weight of being a newly bereaved parent on Christmas, alone, without the ability to even pretend that everything is okay. I didn’t actually think I would feel this sad today. I truly thought I would be able to pretend it was just another day, since we are having our Christmas celebration sometime in the next few weeks. But sitting here in this moment, all I can think about and feel is the emptiness and how I long for a house that is fuller, happier and more magical. Maybe if magic were real we’d have Gabriel here with us.

I got my hair highlighted for the first time in over a year considering I found out last March I was pregnant with Gabriel. As expected, talking about Gabriel remains more awkward for others than it is for me. “Aw, congratulations on your baby!” the hairdresser said. “Thank you”, I replied.

But, how do I talk about him without making people uncomfortable? How do I not become that sad and kind of pathetic person who blurts out, “Thank you, but he died”. But that’s what I do, because I am really freaking awkward. So maybe I am sad. And pathetic. Maybe I’m subconsciously trying to prove that I am still here, that I can laugh and smile and be excited about getting my hair done even though I had a baby who didn’t come home with me.

I want to talk about him. Even if talking about his birth means talking about his death, it’s better than neglecting his existence. I want to be able to tell people that I have had three kids, even if only two of them are here with me now. I don’t want people to be uncomfortable and I certainly don’t want them to feel bad for me. I don’t need the pity or the sympathy. I don’t crave attention. But I want to tell his story. I want to share my journey because I know this path is not unique to us. There are thousands of families who have walked it with us, and thousands more who will.

I was that person who could never, and would never, understand what grieving parents went through. I didn’t know what to say or to do for people whose lives were complicated by the tremendous grief of losing their child.

But here I am. I know what it’s like because I’ve experienced it. I am experiencing it. And I’m okay. There is life after loss. Maybe it’s not as full, or as busy. Maybe there are still days of sorrow, regret and heartache. And maybe it takes days, or even weeks to get out of bed and not feel like those are your predominant feelings. Eventually, the thought of the world continuing to turn despite your loss will no longer infuriate you. And slowly, you will pick yourself up and start living your life again. You will acclimate to your new normal and pretty soon you’ll feel comfortable enough to blurt out to a perfect stranger that you just lost your baby, but that it’s okay, because today you’re focusing on yourself. Today you’re embracing the fact that in order to be the best mom to your kids, you have to be happy and healthy. Today, you’re not giving into the notion that since you just lost a baby you’re supposed to be miserable. Today, you’re trying to see yourself as the amazing, resilient and strong person that everyone else sees you as. Because maybe, just maybe, all those people are right.

Grief is a funny thing. Even though it is a deeply personal, intimate and different experience for everyone we still feel compelled to fit a certain mold. Society tells us to grieve, but to grieve a certain amount. Not too much (or little), not too long (or brief) but juuuust the right amount for juuuust the right amount of time. The course of my grief after Gabriel’s birth and death has not followed the path I anticipated, but now more than ever I understand that until you’re faced with this, you really don’t know how you will cope and get through your days.

It may come as a surprise to those who know me, but part of my coping has involved not sharing Gabriel with anyone. I have not shared all details about his birth. I have not shared any pictures of him. We had professional photos done at the hospital that Barry and I still haven’t looked at. I am, by nature, an oversharer and feel comfortable sharing intimate details of our life, especially this journey. But I just can’t share more details about Gabriel and his short life. I hope that changes with time, as I’m sure our family and friends would love to see photos of him. Keeping him close and knowing that the only people who saw him and met him was us and our children somehow brings me comfort. I know it doesn’t make sense but it was a deeply personal and emotional day and I’m just not ready to share that with anyone.

What I will share is that he was big. He was 9lbs and 3oz. He had blonde curly hair and he looked so much like Max that it was uncanny. Most importantly, and a detail that brings us closure and comfort, is that there was never a struggle, never pain and no suffering on his part. He never knew he was sick, but certainly knew warmth, comfort and love. It was immensely more peaceful than I had imagined and as a mom who knew I was going to have to say goodbye to my baby, it happened just as I had prayed it would.

I can say that losing a baby has been the most difficult thing I’ve ever experienced. I don’t have anything to compare it to, but it’s certainly in a completely different ballpark than anything I’ve been through before. That being said, the anticipatory grief was a whole lot worse for me. Yes, I gave birth to a baby and knew he wasn’t going to survive. Yes, I watched him decline before my eyes. And yes, he passed away in my arms. We spent time with him, both while he was alive and long after he had passed. It’s still immensely difficult to think about who he would have been, and how perfectly he would have fit into our family. It still brings me to tears if I allow myself to go down that road. I can still work myself up when I think about all the shitty people in the world who have babies who are healthy until the “nurture” (or lack thereof) process takes over. If I allowed myself to be consumed by that, though, I could never be a good mom to Max and Lauren, or a good wife to Barry. I would never be able to grieve in a way that is “normal”. I began this process months ago and can admit that never planning on bringing Gabriel home prepared me for my empty arms when I left that hospital room. Anticipating that his life was going to be brief meant that we had to plan on soaking up every single minute we were with him. And we did just that. We admired every inch of his perfect body, stroked his soft cheeks and cute nose for hours. We told him we loved him. We introduced him to his brother and his sister and had the chance to see Max absolutely light up when he held him. We have pictures of Max holding Gabriel with the biggest smile I’ve ever seen, not knowing that Gabriel’s heart was no longer beating. But he didn’t care, he was smitten by his baby brother and his “cute little nose”. After he decided he was done holding Gabriel, he began begging for snacks and was overly excited about the Saltine crackers he found and we gave to him. Because the innocence of 4 year olds never ceases to amaze.

And it’s that same innocence, mixed with a whole lot of persistence, that has really saved us from wallowing in all the grief we feel like we should have. Kids do not skip a beat. Kids don’t understand grief in the ways that adults do, though they certainly still feel it. Kids still need to be fed, bathed, loved, held and played with whether you’re sad or not. We feel really lucky to have two kids at home who keep us going and give us a reason not to feel bad for ourselves. Even though there is a hole in our life where Gabriel should be, we are working on filling it with the few memories and mementos we have of him. And despite this loss, our life is bursting at the seams. All of the great things we have still outweigh all the bad we’ve been through. The things we’re grateful for still outnumber the things we’re not. And in time, the days where we have to choose joy will quickly fade into days where we can truly be joyous again.

Last week, after the MRI and before getting a call from the cardiologist, Barry and I started to make plans to relocate to Gainesville. Despite all we’ve been through, I guess we both just thought we would get news that baby G didn’t have secondary pulmonary lymphangiectasia. After all, not all HLHS with restricted or even intact atrial septum develop it. It’s exceedingly rare, even in this population, <1% according to some studies. There have been a few retrospective studies of infants born with HLHS and CPL, one of them citing a 100% mortality rate by 5 months. There is some evidence that this condition, despite aggressive treatment and medications, is often fatal in the neonatal period but if the baby survives, improves without any deterioration in respiratory status around age 6. Much of the research on this has been in kiddos who have the primary type of this disease, which happens as an isolated issue due to, they think, a dysfunctional receding of large lymphatic channels around 20 weeks of gestation.

You probably know where I’m going with this. Our son’s MRI showed evidence of this lymphangiectasia. I don’t even know why we were surprised. After everything, all the ups and all the downs, we were starting to gear ourselves up for the long haul. We were about to call in lots of favors and go live 4 hours away to be in the best place we could be for our son. But this news, like so many other times before, took the wind right out of our sails. Not only is this another (big) piece of evidence that we will likely only have G with us for a short time, it also likely makes him not a surgical candidate. The cardiologist was clear that if he were to present our case to surgeons now, they would probably feel he was too risky of a candidate. He was amenable to continuing with our original plan: wait and see how he does. Assess at birth. If he comes out fighting, defying every single odd stacked against him, we can go from there with any options we have. But, being a data/science/medical person, I just don’t see that happening. Even though we have Lauren who has fought like hell through her issues, I just can’t see through all the bad stuff. I hope with everything that I have that I am wrong. I hope he surprises us. I hope he comes out fighting and he proves to be as resilient and strong as kids are known to be. But I also want it to be known, especially to him, that it’s okay not to fight if fighting means pain. It’s okay not to fight if fighting means a life full of sickness, suffering, surgeries, unhappiness and longing for a different one.

If this journey so far has taught me anything, it’s that my own selfishness cannot replace giving my kids the best possible life. I want to be selfish. I want to do absolutely everything in my power, and the power of modern medicine to keep my baby on this Earth with me. With us. With our family. He is just as big a part of our family as either of our other children. And I know he will continue to be, despite what happens in the next week. We will fight for baby G for as long as he fights and we will follow his lead. We are not in control and we are at peace with the fact that baby boy will guide us to choosing the best path.

It is terrifying to know that in another week I will no longer feel him squirm and kick me anymore. I’m trying to savor every moment that he is inside me, safe and thriving. I will update the continuation of our journey but it may be several weeks before I am ready. Thanks for following us and send all the positive vibes you can for our family.

If you’ve been following our story, first of all thank you for the support, love, encouragement you’ve shown. We’ve known about baby G’s condition since 17 weeks and for every day since, we’ve been preparing for the moment we’d have to say a possibly quick hello, and eventual goodbye to him. Week after week, echocardiogram after echocardiogram his poor prognosis and probable poor quality of life was reiterated, often with new and more lethal defects found in his heart anatomy and physiology. Barry and I were able to make final arrangements, we’ve visited funeral homes, we’ve planned out his memorial service and what we wanted it to look and be like. We’ve kept our friends and families informed (probably ad nauseam) and have welcomed all the arms we’ve found tightly wrapped around our family.

About a month ago, we were advised due to new echocardiogram findings suggesting the evolution of G’s condition into a hypo plastic left heart variant, to see a surgeon in Tampa. If you have been following, we saw him and one of his colleagues and after another echo and another new finding of intact atrial septum, we made the decision to continue on with our palliative care plan. We have been persistent with our team that if G’s condition is fatal, or attempts to “save” him will be futile and associated with severe, long term medical and cognitive consequences where he will not have a quality of life, we do not feel that surgical palliation is the right thing to do. We have not received any judgement from any professional we’ve encountered and have felt 100% supported this entire time.

Last week, I had my last echocardiogram scheduled and though I considered canceling it, I decided to go ahead and go to the appointment. I wanted to make sure nothing had changed, and also wanted the chance to speak with our cardiologist about what to expect for end of life with this condition, and what sorts of things we could consider in making G’s transition peaceful and painless. I was speaking with the sonographer during the exam (she’s scanned me a bunch so we are on friendly terms) about what had happened since we last were in. She was familiar with the reports from St. Joe’s, but felt strongly that she was able to see flow across the atrial septum, which was not the case three weeks prior at St. Joe’s. This was a huge deal because that finding was the major reason we decided not to move forward with gathering more information about surgical options. She asked if we had sought an opinion from another cardiologist in the group who was slightly more experienced with G’s type of heart anomaly. At that point, I decided I would reach out to him to see if he’d be willing to review our images and give us an honest opinion about what he felt was going on, and what, if any, options we had moving forward. Our cardiologist who we had been seeing since the beginning remained guarded in her prognosis, which is a fancy medical way of saying she persisted that baby G had no chance of survival.

Two days later, we were in to see another cardiologist who happens to be the director of perinatal cardiology at the hospital we’ve been receiving care. He gave us his interpretation of the echo that he performed himself that day. He gave us options- a lot of them. I think we probably talked to him for over an hour and his patience and compassion toward us was unlike anything I’ve experienced before- both as an RN and as someone in the receiving end of medical care. We were completely taken aback that we suddenly had options, but with them have come some seriously big and seriously, well, serious, decisions. The kind of decisions where one wrong one literally can be the difference between life and death.

Long story short, he told us that no one, not one person, can tell us right now how our baby will do at birth. For anyone to have given us numbers and statistics at this point is not only unfair, but more than likely untrue. He agrees with our (now) former cardiologist- this is a difficult case. This is not a “textbook” hypoplastic left heart syndrome (HLHS). This is high risk. He has more going on in his heart than a small left ventricle. There is a good chance that when baby is born, he will be unstable. He will present with respiratory difficulties, he will be hemodynamically unstable (heart rate and blood pressure difficulties), and it may be apparent that he is too sick to undergo intervention. An echocardiogram at birth, which can adequately assess far more than a fetal echo can now, could show compromised heart function, and a heart much too sick to be considered for surgery. But, he told us, he could also be born stable. He could be pink, cry, maintain his oxygen saturation and heart rate and blood pressure. He could come out fighting. We had never planned for this scenario because it had never been presented to us as an option. We have been making all of our decisions based on what we’ve been told, and likewise our medical care has been tailored to that as well. We almost chose to be induced two weeks ago, because of some medical conditions I have been dealing with (due to the pregnancy). We ultimately backed out at the last minute because we felt guilty about hastening his entry into and subsequent exit from the world unless I was truly in danger. And here we were, not even two weeks later, talking about the option for our baby to have lifesaving surgery. Talking about the what ifs, what if he is born stable? What if his echo is reassuring and his lungs are not at all compromised? What if he is deemed a good candidate for surgery that could enable him to have a happy and fulfilling life. WHAT IF.

So that day, he asked if we could relocate to Gainseville. They have the best pediatric cardiac surgery program in the state. And they happen to be 146 miles from here and an almost 3 hour drive. Our local facility does not currently have the capability to do cardiac caths or cardiac surgery at the moment, and his recommendation was to be closest to the best facility in the state that does. We told him that it didn’t seem feasible to do that right now, we have no family in the state and two children who need us close by. We said we’d talk about it, though. We decided during that meeting that we would continue with our plan to deliver in St. Pete as close to 38 weeks as possible, assess his stability at birth with a very specific birth plan laid out (we do not want CPR, ECMO, etc. if attempts seem futile and he is really unstable). He told us that they have the ability to transfer him and me to a facility to perform the procedures if we felt it was a good compromise to stay close to home. We left that night feeling comfortable with our “wait and see” plan, knowing now that we’d have the option to transfer him to a tertiary care facility should he be born in a better circumstance than we’ve been planning for all this time.

This past Tuesday, we had a big interdisciplinary meeting in St Pete with cardiologists, CVICU docs, perinatology, palliative care and neonatology. We spoke about the baby, the plan and were able to discuss among all the professionals involved in our case the details as we are getting really close to his birth. They were all on board with our plan, of course, but one doctor did want to reiterate that they do not have the capabilities to provide any of the surgical interventions our baby would need, and while transferring is always possible, it’s still time that he could have been having intervention already at another, better equipped facility. And is it possible that his restricted atrial septum, while not intact, could contribute to him being unstable as the blood not flowing across that atria could cause dangerously low oxygen saturation. I also inquired with our cardiologist about a fetal MRI to assess for something called pulmonary lymphangiectasia which is associated with 100% mortality according to some retrospective studies. So, this morning I had a fetal MRI to assess baby G for that and we will be tasked with making some decisions depending on those results. If he has evidence of it, we may stick with our plan to deliver locally with the expectation that he may not have a good outcome. But, if he doesn’t have evidence of it, Barry and I may be calling in a lot of favors as we explore the option to relocate and deliver at a facility equipped to handle baby G’s needs if he’s born and he beats all the odds that have been stacked against him.

Please send us all your love, thoughts, prayers, positive vibes as we attempt to make the best decisions we can. This has been the biggest whirlwind, emotionally exhausting and taxing situation we’ve ever dealt with. <3

Well, I’m 34 weeks and 3 days pregnant today, and still waiting. I have had to stop working due to my physical limitations, which by the way, encompass pretty much everything. I can’t get down on the floor to play with my kids, I can’t bathe them, I can’t reach down into the dryer to do laundry. I feel like I can’t do anything, and it’s beyond frustrating. Luckily my husband is amazing and does it all, plus we have an awesome nanny who has been helping out. I am grateful for all the friends who have stepped in to help out. I’m at the point where I don’t have a choice in asking for help. I need help to get through the day.

Last week we solidified our plan for comfort care when baby G arrives. My AFI (amniotic fluid index) which should be decreasing at this point, is increasing quickly due to baby’s declining heart function. Last week it was 37, up from 32 the week before. It makes it hard to move and breathe. It is causing severe abdominal pain and pressure, and my heart rate has been through the roof so now I have to take a heart medication to bring it down. When I was pregnant with Lauren, I was emotionally and mentally exhausted, but the physical pregnancy was a dream. This one has been taxing in every way possible. I only wish that I would have a baby at the end of it all to bring home to make it worth it.

 

A few weeks ago, I began to join some hypoplastic left heart syndrome (HLHS) groups on Facebook. Like any neurotic person, I have read medical journals, studies, and thoroughly browsed all reputable sources for some sort of “hope”. Of course, there are no reputable sources that depict HLHS with intact atrial septum (IAS) as having any better a prognosis than we were given. Our case was never a “cut and dry” HLHS and the surgery would likely have been worlds more complicated anyways, if he was even a candidate at all. We trust all of the medical professionals we’ve encountered and feel confident we are making the right decision for our son and our family. But you know it’s interesting how support groups (especially on the internet) have a way of becoming really unsupportive when your opinions and decisions differ from others. This is not a curable condition that a surgery or two will fix. I will admit that it is really really hard seeing all the kiddos on these pages who are home with their families, knowing it could be us. But could it? There are so many other moving parts in G’s diagnosis that makes the likelihood of him being one of those kids exceedingly low. If he made it through any of the surgeries, he would be a chronically sick kid. He wouldn’t have the kind of life anyone would 1. want themselves or 2. want for their kids. I have seen women chewed up and spit out over their decision for pallative/comfort care at birth.

You don’t deserve to be a parent. How could you just kill your baby like that? You should have just terminated if you aren’t going to give your kid a chance. You’re a disgrace. How can you live with yourself? You’re going to hell. 

The list goes on. The hate is strong and it’s unfortunate that people feel the need to weigh in on something so heavy, private and difficult. Not even one parent who finds themselves in this position has it “easy”. There is no easy way out. This is a club that NO ONE wants to be a part of. I sure as hell wish I wasn’t, and furthermore I would never dream of making a parent feel guilty over their decision. This is not refusing to treat an ear infection. This is not refusing treatment for a condition with a high likelihood or cure or remission. This is refusing treatment that is futile and who’s success leaves a baby sick, weak and without quality of life. This is refusing to cause pain, suffering and prolongation of a life that would be very difficult for everyone involved. I do not feel the need to justify our decision to anyone, and I feel lucky that most of our friends and family have not outwardly expressed (to us anyways) that they don’t agree with our course of action. But man, it hurts. It hurts that there are people out there who think that I don’t deserve to be a parent. I may not be great at a lot of things, but I love my kids fiercely and consider myself a damn good mom. No keyboard warrior will convince me otherwise and they will rue the day they ever try.