Month: September 2018

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.