My first memories of “abortion” are from my early elementary school years at my family’s central Arkansas Bible church. Let the stereotypical assumptions flow after that introduction. But seriously, I recall seeing pamphlets with graphic photos of bloody trash bags of dead babies. I’m sure I asked my parents or maybe they showed them to me and explained what the picket line we were going to participate in was about. I was horrified and sad that this kind of thing could happen, and my little 7 or 8 year old self was proudly “pro-life.” I helped create posters with colorful magic markers to hold streetside in front of the capitol maybe? I don’t remember the locations but I’ve stood in a few abortion demonstrations as a young child. Maybe even in junior high – that was probably the last one I remember, with my church youth group here in Overland Park, Kansas, on 95th Street between the cross streets Lowell and Craig. How I remember those details, you got me? It was just a busy street in a residential area, near some churches (though not ours), and not in front of a clinic or government building, but I digress.
Over the years I’ve heard all the buzzword arguments on both sides. And while my views on lots of traditionally conservative issues have changed in many regards, I still haven’t heard a good answer to explain “when life begins” if it doesn’t begin at conception. Maybe the argument of “when life is viable outside the womb” works, except that as technology and medicine continue to advance, so does minimum. I think the earliest born surviving preemie was born at just under 22 weeks gestation, and the viability chance for fetuses continues to increase. When you combine that with the idea of “cloning” science, it doesn’t seem impossible that the two sciences could meet someday and a baby could be conceived and gestated with no living human womb at all. Seems creepy, but possible in some matter of years. So that argument of “when life begins” seems like it could be a moving target.
Where things get really gray for me are the cases that get thrown around a LOT in the media and politics, that everyone gets so up in arms about – the right to abortion in cases of rape or the mother’s health or birth defects. And I think each of these scenarios has so many shades of gray. A woman who is raped has been damaged physically, emotionally, mentally, and possibly spiritually. I haven’t been through it but have only imagined the pain and trauma. And if that horrific event wasn’t just over at the time, but that evil attacker left a part of themselves inside your body to join with part of your body and create a new creature that you would be responsible for the rest of your life, always reminded of that event, even that face. What if that child was the spitting image of their father? Could they be loved? Would that hurt and anger be taken out on that child? What if the evil in the father’s heart was genetic? And pregnancy and childbirth is hard and uncomfortable and hormonal – would there be any healing to hope for in those 9 months? Those are only a few of the thoughts that I’ve considered in that sad scenario. So I can completely understand and feel no judgement for anyone that could choose to terminate that pregnancy and attempt to move on. However, I know and truly believe that God can make beauty from ashes. If a victim had faith, I think there is a way (and I’m sure this has happened in real life) to turn this tragedy and pain into something amazing. God can provide healing in amazing ways, whether through blessing a family that wanted to adopt, or building a beautiful mother/child relationship with the victim, even if they started in unlikely and evil ways. So I believe there is hope for those that would choose life – to take that chance on the new creature inside them and put that baby’s life ahead of their own pain. I’m not saying which one is right or wrong, but I believe there is healing either way, and a lot would depend on the spirituality and support system of the victim.
The mother’s health argument – I haven’t done a lot of thinking about, honestly because I have this idea in my mind that modern medicine can figure that one out in most cases that it seems a very rare decision for anyone to have to make. And I think the stats support that, it’s not really an argument people should be resting their laurels on because it just isn’t applicable to many people. But the case of birth defects was recently illuminated for me. But let’s start at the beginning of my views on this first. I generally do not believe that viable genetic abnormalities should be reason to terminate a pregnancy. The idea that “I just don’t want a child with known health problems” just doesn’t jive with me. That in and of itself sounds selfish and slippery. I agree, it could be devastating news and completely change the vision you have for your future family. But people are doing it, and they have found so much joy in it. And that argument seems similar to and dangerous to the “when does life begin” question. What constitutes a birth defect that is acceptable for abortion? Is it one that you don’t feel mentally or emotionally prepared for? Is it one that you can’t afford to pay for the resulting medical services? Is it one where the child has a chance of dying anyway? How big of a chance? What about the child’s “quality of life” with their condition? Who’s standards do we use to determine when it’s okay? And what heavy combination of answers to these questions makes one scenario okay but one scenario wrong? These are the questions that I can’t answer. Today I read two heartbreaking stories/articles that got me really thinking about this late-term abortion issue (and I’m referring to that now because I’ve recently learned that late-term abortion really only applies to these unique medical situations, rather than some selfish woman who decided last minute that she didn’t want her baby). First was about a couple who learned mid-pregnancy that their much-loved and much-anticipated baby could absolutely not survive outside the womb. It would be stillborn, but they had to carry the child full term and deliver her, knowing this devastating outcome for the entire second half of the pregnancy. Second was a similar case, but this baby could survive, albeit with an extreme condition that was likely to cause a painful, vegetable-like existence. I read both these stories and fought tears. Tears for the parents and the heartbreak they felt and the guilt they felt with even considering their choices. I felt tears for these unborn souls, who would never fully know their loving parents. I felt compassion and understanding, and sadness that laws made these already difficult situations even more difficult and painful. It gave me new perspective on this issue. Though I still don’t know the answer for them – what should be legal and what shouldn’t. I think in the first scenario, a baby with zero viability should not be made to be carried. That seems downright cruel and ridiculous. The second story has a lot more gray, as the mother describes. I can’t blame her either way, and she would carry her decision with a certain pain no matter which way she chose. And that baby never had to know pain and suffering.
But despite all these feelings, the thing I’ve also learned is that these situations make up something like less than 3% of abortions that take place in the United States today. The vast majority are unplanned pregnancies terminated in the very early weeks. There are hundreds of reasons why an unplanned pregnancy is inconvenient, and I can empathize with not wanting this circumstance or this change in my life plans. But, the women in these circumstances knew it could be a possibility. The evolutionary purpose of sex is to reproduce. I believe it’s the responsibility of the people who chose to have sex to accept parenthood as a possible outcome of that, whether or not they used birth control. That’s not a super fun way to look at it, and I know that sounds really lame and old school, but that’s how I see it. Our culture has made a huge deal out of sex, glorifying it and promoting sexual freedom, but not appropriately emphasizing that sex causes children (for heterosexuals, that is)! The Pro-Choice movement is so adamant about women’s health and women’s control over their own body. I 100% support that. Women should be able to choose when and with whom they have sex, and they should have access to affordable preventive birth control and the education to use it the most effectively. But, once they have become pregnant, it is no longer just their body that they are making health decisions for. There is a new body; a new person in this equation, I believe, since I haven’t yet been convinced when life begins if not at conception. And that person’s health is now the responsibility of the parents. Yes, unfortunately, if unplanned, most of the time the women take the brunt of the responsibility, if not all of it. But those are the risks taken if choosing to have sex with someone and either or both of you doesn’t yet have the desire to be a parent. There has to be some acceptance of responsibility at that point, not once a new life has been created.
This last scenario is where Pro-Lifers need to focus their efforts in discussions and legislation. Why does abortion have to be an all-encompassing, all or nothing law? If we could make some concessions in certain areas to not put well-meaning parents through unnecessary heartbreak and fear of judgement, maybe be open to lovingly and empathetically discussing abortion as a legal alternative for rape victims. Let’s look at addressing this very small percentage of abortion cases with compassion. But then focus on re-educating today’s young men and women about responsibility with their sex lives – not just about the risk of catching and spreading STD’s, but about the “risk” of parenthood. And then, for those who find themselves with unwanted pregnancies, let’s flow some legit resources there way. Healthcare, adoption resources, support networks and groups. For those that keep their baby, help with childcare, education and employment. Legal resources to help maintain responsibility for BOTH parents. Parenting classes and support groups. I know these things exist, but are more often charitable organizations rather than government-funded. And abortion is so much financially cheaper and logistically easier than these things. But THIS is where the argument needs to be, and the most lives could be saved. As long as Pro-Lifers and the politicians running on that platform continue to use scare tactics about partial-birth and late-term abortion to make Pro-Choicers out to be evil baby killers, and as long as Pro-Choicers stop using “for the health of the mother” as a reason to keep abortion legal, there can never be any sort of progress on this legislation that really promotes the health and safety of women and their unborn children.
I’m sure some of my thoughts here are unpopular with both sides of the coin, but it’s so emotional and it’s something I’ve considered a lot and asked God about plenty of times. I’ve said before I never really had a desire to be a mom. And my second child was very much unplanned and inconvenient in ways not many realize. I hated being pregnant and being a mother is DAMN HARD. And I’ve got it easy compared to many that are faced with unplanned pregnancies, so I get it. But I also know the blessing my children are, and the ways they’ve expanded my soul in such positive ways, and what they’ve taught me about joy and love. Things and feelings I never would have known without their arrival into this world. This issue has been weighing on me heavily this week since the presidential debate where some disturbing buzzwords were thrown around. I laid awake the other night feeling so emotional and confused that I had to get some words out to try and make some sense of the issue. I still don’t know the answer, but I do know there needs to be more understanding, less judging, and as always, more love.
Four weeks ago, we welcomed Layla into this world. It was painful, scary, wonderful, and she blessed us with her first breaths immediately. She still resides at Children’s Mercy Hospital where we spend our days with her. We’ve had so many ups and downs during her stay here – I wanted to document the experience more but haven’t had the energy. So I thought I’d try to write some of the random feelings and observations we’ve had along the way. Hopefully, her stay here doesn’t last significantly longer and we can move on to the ups and downs of life at home together as a family.
- The sounds and smells of the hospital are haunting. I get home at night and hear echos of oxygen saturation alarms, and my jacket has absorbed the plasticky, alcohol sanitizer smell that permeates every breath of air inside those walls. Ronnie bought hand lotion at the gift shop and it has its own unique smell and I will trash that bottle once we are home so I dont have to smell it again and be reminded of this time.
- Everyone here is fighting their own battle. The halls and elevators are filled with mostly solemn and sometimes tear stained faces. People are often rude and act as if they are the only people here. It’s easy to get frustrated with them, but then I remember some of the very rough days we’ve had, and I have to offer them some grace. Some of their children are in much worse condition than Layla, and some have been here for a really long time. When I was using the lactation booths to pump milk the first few weeks, a few times I overheard a new patient parent being shown the ropes of the lactation room. And I heard the sniffles of a scared new mom as she sat down to pump in this strange place, away from her sick baby, maybe only hours after learning her baby was sick. My heart hurt for her and I wanted to run and pull the curtain and give her a big hug. It sucks recognizing the “newbies” over and over again, as it’s a reminder of the fear and brokenness we felt in the early days of Layla’s journey.
- Though we are in the best place for Layla to get well, it is apparent after spending weeks here and observing how things are done that these people are smart, but there is still so much mystery to Layla’s case. They have protocols for handling her condition, but she’s stumped them several times already. Maybe she’s stubborn, but it also shows that as much as the medical establishment knows, each individual person presents a unique challenge. Unfortunately that isn’t how modern healthcare works, so I suspect that recovery times could be improved for all if there was an efficient way to address each patient uniquely.
- My heart hurts every single night I leave Layla here to go home. I am deeply conflicted about going home to sleep, but I know I wouldn’t get sleep here on this worn out, uneven window-seat bed thing. The recliner is even worse. I broke down a couple nights ago with frustration, impatience, and guilt, but the doctor talking to us assured me that the best thing I could do for Layla right now is to take care of myself and stay healthy for her. If it’s the doctor’s orders, I will continue, but nothing makes it feel any better leaving her every night.
- Last thought, but not least, is I’ve been amazed at the strength and resiliency of my husband and Skyler. I’ve been an emotional roller coaster and the two of them seem to always be right there to cheer me up or help take a load off. Without them, I would be lost through this.
The days here at the hospital seem to follow a pretty consistent up and down roller coaster pattern, and today has been one of those days. It started out great, with an update from Layla’s nurse that she had made good progress eating from the bottle overnight with minimal puking. Poor girl is trying to learn to eat while detoxing from all the narcotics she’s been on through ECMO and surgery. She’s like a baby heroin addict, complete with baby doses of methadone to help her through withdrawal symptoms.
But as soon as we showed up at her crib side this morning, the nurse said she’s been switched to formula given by feeding tube. My heart started racing and the temperature of my blood began to rise as I asked why my baby was being given formula when I had boxes of pumped breast milk in the freezer there with her name on it. She went and got a doctor to explain that Layla’s lymph system had suffered some temporary damage from the surgery, and the fat from my milk was leaking into her chest cavity and visible by the cloudy fluid in her chest drains. They needed to switch her to a low fat diet until her lymph system heals, which could take a few weeks. The lowfat formula tastes terrible, and she wouldn’t drink it from the bottle, so it had to go by feeding tube. Upset doesn’t come close to describing the sinking disappointment and frustration I felt.
If anyone knows me, they know how important natural, real nutrition is to me, and how much that influenced my desire to breastfeed this time around. I was dreading everything about it, but felt so strongly it was the best thing for Layla, and one of the only things I could do for her as we gave up her care to the hospital staff as they worked through her heart repair. It was the thing that motivated me and got me through these long and dreadful hours. Pumping breast milk, as much as it sucked, always made me feel like I had some small shred of control in this situation. Seeing that syringe of highly processed frankenfood milk product going into my baby via a tube in her nose made my heart sink, and set my day off to where I just wanted to punch everyone. The next time I went up to the lactation room to pump, I wanted to throw my supplies at the wall. WHATS THE POINT?!?!
Everything I had learned about holistic health and nutrition and done to have a healthy pregnancy and baby had been pointless. I had a baby with a birth defect, both of us have required antibiotics in the last few weeks, she’s required a list a mile long of unnatural interventions (life-saving, of course), and now she can’t even eat what nature intended. I’m completely out of control in this whole situation and I hate it. The one thing I thought I controlled was being pried from my stiff grip. And I get it – it’s all part of getting her healthy but all goes against my intentions and best laid plans for a healthy natural life for Layla.
But I didn’t give up – I grasped for what I could, asking if there was a way to strain the fat from my breast milk so she could drink that instead? The doctor said it was a possibility to try and set me up with the lactation consultant to go over the process. Guess what? It’s more work for me. But damn if I’m going to put all this time into pumping the liquid gold for her, I can take the extra steps to remove what she can’t use right now and give her the best that she can. I hope it works – the doctor said it doesn’t always but we can try.
So I’m hanging on tightly to that last little shred of control that maybe I’ve tricked myself into thinking I have through this ordeal, but also realizing that it’s an ongoing lesson for me. I think I’ve learned it, and that my patience and trust has been tested plenty. But I have to keep loosening my grip as each day goes by in order to bring my baby girl home safe and healthy someday. I have to let go to gain. And it’s the hardest thing to learn.
P.S. – I vent my frustrations also knowing that there are many parents in far more frustrating situations where their control was taken long, long ago or they are even further removed from their child’s care. Some people can’t hold their children and some can’t speak on their child’s behalf for various and wide-ranging reasons. And I am beyond grateful that we are at this point in Layla’s special heart journey – rather than a week and a half ago when we thought the journey might have ended devastatingly soon. I’m so thankful the progress she’s made. I’m just tired. Tired of the process and tired of being what feels like a “pretend mom” after nine months of miserable pregnancy. I’m so ready to be Layla’s everything, and can’t wait till she’s home with us to start that journey together.
Layla is 13 days old and I’m writing this as we sit in her room at the Children’s Mercy PICU. There are what looks like a thousand wires and tubes connecting machines to each other and to her. Her heart and lungs are currently being supported by ECMO (Extracorporeal Membrane Oxygenation), which she’s been relying on for more than four days now. This is the last and most extreme intervention available to help her, other than surgery. For various reasons, all out of our control, she has not had surgery yet, which we thought would have taken place sometime in the previous week. Her surgery was officially on the schedule for this morning, until “an emergency came up” and the surgeon had to cancel. We are awaiting the reason and a reschedule date, and praying and hoping that she remains stable enough for as long as it takes to get her heart fixed.
Backing up a bit as to how we got to this extreme situation – Layla was born without complication after 13 hours of labor at 12:02 am, November 3rd. Since the NICU was awaiting her arrival with the heart condition, they were able to stabilize her quite successfully using medication called prostaglandins to keep the holes in her heart open to help with proper mixing of oxygenated blood since the plumbing she was born with is backwards. In the first couple days she developed a fever as a side effect of the medication, so they stopped it and watched to see if her oxygen levels remained stable without the meds. She did fantastic, so they kept her off. We spent just over a week being able to hold her and nurse her and enjoy her during her stay in the NICU while we waited for a surgery date. On Monday the 9th, are nerves were tested as they put her under for a cardiac catheter procedure to take some better pictures of her coronary arteries so the surgeons could be fully prepared with the unique landscape of her heart. She bounced back rather quickly and surgery was scheduled for today. We planned on spending the week leading up to surgery continuing to nurse/feed her, helping her to establish healthy feeding habits and continue to fatten up.
But Wednesday afternoon, November 11th, things started to get sketchy. I can’t describe all the scurrying around of dozens of medical people around her and the process of trying to figure out why her condition was turning the wrong direction so suddenly. It was just scary, and it lasted for hours, while we stood by and watched all her numbers falling and the alarms on the monitors going off nonstop. Ultimately, as nature always intended, one of the holes in her heart that was helping her blood mix effectively, had closed up, and it did it in a matter of minutes. They tried to restart the medicine they used at birth, but it couldn’t get there fast enough. She was suffocating and being doused with a medication that also had side effects that made her ill. Some adjustments were made and she achieved a bit of stability, and the staff decided to move her to the PICU, so she had a room established for surgery. In the middle of the night, we moved with her to her new room in the PICU, and not minutes after being here, things went haywire again. Her oxygen levels dropped out and her blood pressure went out of whack, something we hadn’t seen yet. On top of all this her white blood cell count had risen and she was running a high fever. Doctors talked of infection, which not only put her at risk , but would mean postponing surgery until any infection had cleared. They kicked us out of the room while they frantically tried to save her.
I don’t know how much time passed while we waited alone in a dirty old private room on a couch in the wee hours of the morning; crying, praying, pleading, holding each other. The nurse said someone would come update us as soon as someone was free from trying to save her life. I was overdue to pump breastmilk, so someone brought me a pump and I sat there syphoning milk from my boobs, dazed with exhaustion and fear, wondering if I would even have a baby to drink it some day. It was terrifying and paralyzing. I pleaded with God and threatened God, and when I couldn’t think of any more words to pray, I just prayed over and over and over, hundreds of times, “God help her fight. God help her fight. God help her fight.”
Finally the doctor came in and I feared the worst. Thankfully he said she was stable but highly medicated and not in a sustainable way, and another intervention had to be done. The surgeons met and presented us multiple scenarios, and ultimately the decision was made to put her on ECMO since there was a concern she had an infection and no other procedures were possible till that was ruled out, which could take a few days for lab results. Our hearts were broken that it had come to this, after such a promising week, yet relieved it had not come to the worst. Time had been bought, though not without major risks, and she was out of options.
Since that night she has been stable and all the labs have come back negative for infection. They believe it was just the ripple effect of that hole closing up, and no one realized how much she was relying on that particular hole for oxygenation (she has a couple others still). We were all geared up and she was optimized for surgery this morning, which we narrowly missed that opportunity for whatever reason. I’m sure it was a good one – probably another child in a life-threatening emergency that required surgery overnight or first thing this morning. It’s a hard pill to swallow that Layla hasn’t been priority enough to get her heart fixed, but we hope and pray it is a testament to her strength, and that her time for surgery will come and be the best time for her to have the best outcome. In the meantime, hopefully several other baby’s lives have been saved while she rests and waits for an available surgeon.
Though we sit her in the room with her and can stand by her bedside, we miss her dearly. She is kept mostly sedated so she doesn’t squirm or grab onto the equipment keeping her alive. We caress her and kiss her head. We hold her hands, and if we are lucky to catch her as her last dose of sedation wears off, we’ve been lucky to see her open her eyes and look at us, or squeeze our fingers in her fist. She gets angry when nurses mess with her, setting her alarms off temporarily, but whenever Ronnie or I are near and touching her, all is calm. She knows us, and shows us how strong she is. She is our warrior princess, and we have faith she will continue to fight through this and come out stronger in the end.
May your choices reflect your hopes, not your fears. –Nelson Mandela
My countdown app says “4” days till Layla. And unless she makes an early appearance on her own, we are on the books at Children’s Mercy to get labor started this Monday morning, November 2nd. I spent my last day of work in the office yesterday, took today off for a couple appointments and errands, and tomorrow will work from home to wrap things up for maternity leave. Layla’s arrival is imminent, and the air in this house is eerie.
The last couple weekends we worked to organize and decorate her nursery. Despite some fun DIY projects and decor inspiration, I had been putting it off. The fears of her upcoming surgery have nagged at me for weeks, telling me not to get too excited for her arrival because it would just make my heartbreak more difficult if things don’t go well. So I stayed away from her room, avoiding putting that positive energy into it, just in case. If the worst happened, it would be much easier to box up random bags and boxes that looked like more of a mess than someone’s future. If I took the care to organize and decorate for her, I would have to face that loss more squarely, taking even more effort to remove the memories that had already been imagined.
But after a sobering fetal cardiology consultation that reignited all the fears and worries I thought I had already come to terms with, I saw the Nelson Mandela quote above and knew it was meant for me. And I felt guilty for not giving Layla the benefit of hope that she so deserves. I feel her strength in my belly every day and had noted this long before we knew about her heart condition. I never felt this kind of brute force strength before Skyler was born. She was active but gentle. Layla has been doing upside down squats and trying to push her way out with straightened legs for months now. She feels bigger and stronger than her big, strong sister ever did, so why not put a little faith in her that she’s going to fight through this and emerge a healthy warrior baby? She is going to be born into a family of fighters – Ronnie, Skyler and I have had our share of battles and continue victoriously. Why would Layla be any different? She’s a Kelley-Oswald.
Despite the hope in our hearts, the time ticking away as her arrival draws near is filled with anxious thoughts and an eerie intensity. Ronnie and I act calm but are both shrouded in racing thoughts and fears of the coming weeks. We have the Royals’ World Series and Halloween festivities with Skyler this weekend to distract us, in addition to last minute tasks we need to wrap up before we temporarily setup camp at Children’s Mercy for the next several weeks. We are so blessed with family and friends that have rallied around us to help with Skyler, the dogs, household duties, and meals as we hunker down for the approaching hurricane of life. I don’t know where we’d be without all this love, and never know what the future holds, but I do know that God is faithful and provides.
I’m going to come right out and say that some people that might read this post may not relate and some might even be put off by it. Some of the things I’m about to share are things that I’ve always felt I’m in the minority in how I feel and that many people (women especially) don’t get it. But it’s me and my journey and it is what it is.
I am not a person who ever really wanted children. I wasn’t dead set against them I just never pictured myself as a mother and loving it. I never went crazy about babies – I’ve never loved holding every baby I see and always felt kind of awkward around kids. I don’t know what to say to them or how to play with them. We don’t have the same interests and ideas of stimulating conversation. And being the introvert I am, I don’t like small talk or meaningless conversation, which is basically what I think conversing with most kids is like. I’m admittedly selfish and independent and as a young woman starting out in the world, always pictured my life with my husband, traveling, doing fun grown-up stuff, and not being bogged down with the mundane and stressful life of parenthood. But if it happened, I would adjust and reset my expectations. Furthermore, I dealt with some health issues in my early twenties that doctors said would likely hamper my chance to bear children. It never bothered me too much since I wasn’t sure I ever wanted any.
But half a year into my young marriage, I discovered I was pregnant. We weren’t trying and figured our chances were slim. It happened fast and without complication. This is where I apologize in advance to those who are struggling or struggled to have children – I don’t know what it’s like to want it so bad. And then have it not happen. Especially in cases where there isn’t a good reason why. I didn’t want it, shouldn’t have been able to have it, but it came easily. Fertility is one of those mysteries in life that I believe show God’s sovereignty as it so often goes differently than we (and our healthcare providers) plan.
I didnt have have a hard time coming to terms with this unexpected life turn. We were young and everyone around us was starting a family and it just seemed like the thing to do. We’d have things in common with our friends – we would all become lame and take on this mundane new adventure together.
And so we had this amazing blessing of a daughter, Skyler. My heart grew and I discovered some motherly instinct. I still never embraced the idea of now being titled “mom” but there were some rewarding things about it I knew I wouldn’t trade for that other life I had envisioned. A lot of it I hated and still do, but the good always makes up for the bad. There is something about watching this person grow; this person that is a unique combination of my lover and myself and even traces of our parents and siblings, that is fascinating and scary and fulfilling. Skyler’s presence in this world has given me a new depth of purpose and range of emotions that I never imagined before.
Not to turn pessimistic, the addition of Skyler to our family also brought challenges we never expected. The frightening ordeal of her heart surgery took a toll on us. It was early enough in her life that it, along with the normal unpleasant parts of having a child, thoroughly scared us away from ever wanting more children. We’d been through enough, we all came out okay and feeling very lucky, and Skyler was otherwise darn near perfect. Why press our luck? So we continued contently as a family of three, plus our pets. But even with health issues in the clear, we faced other challenges as a family, not unlike many families do. The mundane, day-to-day family life, coupled with the stresses of life that often follow career-driven people, slowly eroded the bond between Ronnie and me. Much like so many modern families, we lost ourselves in the midst of it all. Next to Skyler’s surgery and those days and weeks spent fearing for her life, realizing the fragility of our relationship and working through that was one of the scariest and hardest times in my life. As fighters do, we dug ourselves out of the mud we had slowly waded into and set out together with a renewed commitment to putting each other and our family first, taking the time to slow down with each other, and most of all communicate if/when we sense friction, rather than ignore or bury it. We were joyful and energized, ready to face the world again as a better version of our little family.
And as destiny would have it, (or Murphy’s law or God’s sense of humor or whatever you want to call it), just as we had found our new family groove, we discovered I was pregnant. Outside of battling health issues, this was the last thing on the list we wanted to do. Especially at 35 years old. For all the reasons I’ve mentioned in the previous paragraphs – from my abnormal mothering instinct to pressing our luck to not wanting to complicate our life, I’m going to come right out and say I was pretty devastated. And I felt guilty for not being happy about it. I tried to look at the bright side and think of this as an unexpected new challenge that if we went about positively, would be fun and rewarding.
But no matter how I approached it, there was gnawing negativity in me about it. I didn’t want to be pregnant. I HATED being pregnant the first time – it felt physically terrible and I was scared how much worse it would be eight years later. And I didn’t feel emotionally prepared – though I am a mother already, I didn’t feel emotionally ready to parent a baby again. Eight-year-old children are MUCH easier and less demanding than 8 week old children! And then there was romance and time with my husband enjoying each other – all those physically and emotionally draining parts of pregnancy and the first challenging years with a new addition to the family – how would I do it? How would we survive this again? I don’t think I can put into the words the depth of fear and anxiety I had about this new curve ball in our life, coupled with the guilt of not being excited about it.
Fast-forward a few months into the pregnancy – we weathered some not-so-fun physical struggles, a wide variety of hormonally-driven and anxiety-ridden discussions, and eventually found ourselves looking to our baby girl Layla’s arrival with some excitement and much-needed positivity. Skyler’s enthusiasm over welcoming a baby sister certainly helped move us toward a healthier mindset over the whole thing. And I finally felt like I was falling in love with this wild little one in my belly. As luck would have it, a matter of days into feeling really good about this, we learned of Layla’ heart condition, and found ourselves yet again treading the waters of fear and anxiety.
As this adventure of a pregnancy is in its final weeks, I try to just live and breathe one day at a time. People (some knowing the situation and some unaware), ask me if I’m excited and ready. It’s a loaded questions for me. Of course selfishly I want to be DONE being pregnant. I cannot wait to have my mobility back and not be in pain every time I move. And I look forward to the future of us at home with our new family of four – it’s just a delayed future that hopefully comes to life sometime in December. But I also dread and fear bringing Layla into this world and the weeks to follow. Nothing about it is going to be easy – her recovery, my recovery, logistics with Skyler and making sure she feels loved and supported through this, and that Ronnie and I have the energy to support each other in the midst of the chaos. It’s hard to get excited about and look forward to all of that – but it’s necessary to get us to the good, and I hope and pray that we can recognize the joyful moments that are sure to occur along the way, even if few and far between.
So that is the craziness I am in – the ups and downs and twists and turns that have brought me to the place I am with my beloved family today. We are far from perfect and have faced real struggles and have fought through more than we ever imagined when we planted the idea for this family nearly ten years ago. Life is unpredictable and unfair. But strangely, I’d rather have ours than anyone else’s, because I believe we were made for this. Each member of our little family was made for each other and the world wouldn’t be the same without any one of us. Though it’s far from easy, I choose to be thankful for it all and hopeful in what is to be.
Tuesday we had our first of many appointments at Children’s Mercy Hospital after the initial referral to make Layla’s diagnosis. It was over 4 hours long. Needless to say we covered a lot of ground and got a lot of information.
The main things we learned about our adventure ahead –
- Other than her heart condition, she appears to be very healthy. She’s growing at a great rate (which is a concern with the single artery umbilical cord), all other organs and circulatory functions look to be working great, and she’s moving and “practice breathing” just as she should be. She’s a little badass, basically, much like her sister! They surprised me with a 3D ultrasound where I got to peek at her face – I cried. I was overjoyed to see her familiar features – she already looks so much like Skyler as a baby! She’s so real and chubby and adorable. Not that I didn’t love her already but I fell in love and it brought some much needed joy to this otherwise scary situation.
- Due to her current healthy growth rate, my OB suggested it’s likely they would schedule labor induction around 39 weeks so they could plan for her arrival and have the full medical staff ready for her so she gets off to the smoothest start. This could change – we will know more at another big appointment scheduled early October. As long as it’s the healthiest thing for Layla, the planner in me loves the idea of induction. We have a lot of nerves about all this on top of just bringing a new person into our family, and it’s gonna shake up our lifestyle and routine for quite awhile. This helps us plan and make sure things at work and at home with Skyler can be coordinated. Super relieving so fingers crossed on this part!
- We toured the delivery rooms and NICU and learned a lot about logistics for those first few days prior to her surgery. When she’s born, they will be able to do a lot of the work they need to do with her in an adjoining room with glass sliders that I’ll be able to see from my bed. Ronnie will be able to go over there and observe, but I’ll be stuck for the first couple hours after delivery. They said it usually takes a few hours to get her tested and situated and stable and then they can bring her back to me for 30 minutes or so before sending her off to stay in the NICU. As I’m up for it, I’ll have 24-7 access to her in the NICU (as will Ronnie), where there is a recliner next to her station and a curtain to pull for privacy. She’ll stay in the NICU till surgery day, which is likely near the end of the first week. After surgery she’ll go to the PICU, and then at some point be released from the PICU to a regular patient room for the remainder of her recovery. We will learn more about her surgery and recovery in early October when we meet with the surgeon and NICU staff.Seeing how things are setup helped to clarify a lot of questions for me and provide some expectations so I don’t get my hopes up and find myself disappointed. However, now I am preparing for a very emotionally and physically demanding first week with her, on top of what a regular birth would entail. I can no longer put much hope in bonding with her in the ways a healthy mother and healthy baby can – our proximity and time and comfort will be limited. I’m thankful for the setup they have and for technology and it is all what it must be for her sake, but after carrying her this long and clinging to the hope of holding her close outside my body to help as I cope with the discomforts of pregnancy, realizing that reward is going to be diminished and/or delayed is something I’m really struggling with. I have to relinquish being her primary source of survival, and not even in the joyful way of sharing her care with my husband in a normal post-partum time. It’s clinical and outside of our control. It’s scary and uncomfortable. And I know enough about physiology and hormones and the things that happen between a mother and baby when they have close physical contact and nursing to know that some level of these benefits will be sacrificed just so she can survive. It’s all one big confusing but necessary mess and all I can do is give it to God. I cry about this one a LOT and when I’m hurting and uncomfortable in my skin as her growth stretches my abdominals and makes me want to rip out my ribcage, I stop and remember how close we are, and right now I am her survival and take joy in being that, as much as it hurts.
- We learned they close the hospital patient rooms to visiting children during cold and flu season (October – March). So Skyler will not be able to come meet or visit her new sister at any point while we are there. This too breaks my heart. Skyler is so excited to meet her and tickle her feet as she just said yesterday. We haven’t broken this news to her yet. I know it’s temporary but I also have fears – what if something goes horribly wrong and she never gets to meet her? I know I should stop with the what if’s but I can’t help where my mind goes. Again, I just have to give it to God as it’s out of my control. We will definitely do as much Skype with Skyler and Layla so she can see what things are like there and see her sister, but it’s just going to make it that much harder on all of us.
- Finally, maybe the craziest thing about this so far, is we met with the genetics counselor (who happens to be a friend from highschool), and basically they can’t find any connection or reason why we would have two babies with heart defects, and that their two heart defects are completely unrelated. It’s like lightning striking the same place twice, in a place that isn’t known for thunderstorms! Admittedly, she said the field of genetics is in its infancy and maybe someday they will be able to know the causes for our girls’ heart issues, but for now, it’s a mystery as to why either of them happened, in addition to why we went two for two with kids with special hearts. I honestly don’t know how I feel about this. We are blessed? We are cursed? We are chosen? I do believe God has a plan for everyone and this all fits into that but I don’t know why yet. I know I don’t have to know why yet and I do have faith in this journey as all my previous adventures have brought me to where I am today and I wouldn’t change a thing. But, it’s just mind-blowing right now that the smart people can’t connect these heart issues to anything – not environmental, not anything I did, nor anything about Ronnie’s and my family health history. We aren’t meant to know it all but it just seems like there would be something to make this all make sense, even if just a loose theory…
So there’s my puke of information and emotions for now. I’m exhausted. It’s time for a relaxing bath, since I can’t have wine and sleeping isn’t really that comfy either. And I probably shouldn’t be allowed to write when I’m grumpy but maybe it’s therapeutic too. Signing off!