So I went to see my therapist yesterday. Yes, I see a therapist, and I feel like that is hard to admit. Like I’m weak or crazy since my life looks fine. But my therapist is truly a Godsend and I’m so thankful to have realized this kind of service. I wish I could go once or twice a month on the reg to help me stay focused and ease my scattered brain, but I don’t have that kind of money. She was recommended to me by a friend a couple years ago when I was dealing with some crap. I met with her several times throughout that year and then hadn’t talked with her since very early in my pregnancy with Layla when I was struggling with the emotions of that very unexpected life change. So it had been a spell and we had a lot of catching up to do!
What prompted the appointment after so long and during a time when life seems pretty even keel? We have no extraordinary challenges right now and are just kind of going with the flow day by day (knock on wood, throw some salt over my left shoulder, do a rain dance, etc!). But despite that, I haven’t been happy. Plain and simple. And I don’t mean I’m not grateful for the life I have – there is SO much to be thankful for especially after all the hurdles we’ve been through. But I’ve been down in the dumps for a couple months and unable to shake the gloom, so my friend literally wired me money via Paypal for the sole purpose of paying for me to go talk to my therapist. I guess she was tired of my negativity? Ha – just kidding girl – you just knew what I needed!
What I love about my therapist is she understands where I’m at in an uncanny way. After I explain my concerns, she tells it back to me like a beautiful broken reflection. I see myself and my feelings through objective but understanding eyes, and I can immediately give grace to myself for where I’m at. Even if that was the end of the appointment, with no advice or action items, her recounting of my current state allows me to accept where I am and love myself for it. My guilt and feelings of weakness disappear as I see myself the way she does. But then she probes further and gives me action items. And I love a clear to-do list!
So I’m at a place where I’m re-evaluating my values (huh?). She gave me a massive list of “values” – things like Spirituality, Wisdom, Achievement, Health, Financial Stability, etc. (there’s like a thousand in the list). She asked me to quickly highlight everything that resonated with me, and then to go back through the highlighted list and really think on the values that best represented the things I aspire to lead my life with. The things that I want, rather than the things that I’m currently doing, and narrow the list to around 5. She said it sounds like I’ve been letting life lead me, rather than leading my life with my values. I need to identify my values, the things that help me protect them, and the things that interfere with them, so I can hit the reset button and begin making decisions again with my values in mind. I’m looking forward to this exploration and new practice, though already fear failure. The biggest cause of my gloom is putting everything else before myself – and selflessness is a virtue. And Responsibility is a value, one on the very top of my list. So the struggle to be true to myself and balance everything else is conflicting and very very real. But I’m up for the challenge and excited to find my way out of this funk.
As I think about publishing this post I feel guilty. I feel guilty as a well-to-do white girl living in the safety of the Midwest. Like that gratitude thing should be what I focus on and to quit my bitching, put a smile on my face and go out and do some good in this world with my resources and be happy about it. There are people in way worse scenarios that have real things to be sad about – they deserve to be sad and I don’t. But that’s the hard part about sharing my feelings publicly like this – I don’t share everything. There are some really dark things that I don’t share, so my story and the feelings that I express are disjointed and lack context to people that may read this not knowing. There are very few that really know me and the things I’ve been through. Could things be worse? Yes, but I’ve been through more bad things than I ever would have chosen, and have to accept that it’s okay to grieve about those things. It’s just a reminder that everyone has their own unique experience in life, and it’s all relative to each person. Everyone has a low point (or several) and we don’t always know what those are, nor can we understand how it affects another person. The human brain and soul are fascinating things in how they handle the ups and downs of the unique lives they captain. But we can choose to respond to others with empathy and kindness, in hopes that we don’t negatively impact their situation, and maybe even become the positive thing that helps boost them to a better place. As cliche as it is, you never know what another person is going through, and we can all learn to not judge someone until you have walked a mile in their shoes.
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.
The Barrish vs CrossFit/Sky’s Limit Fitness case is closed, and hopefully for us the worst parts are over: the waiting and financial stress. The bomb was dropped on my husband nearly 3 and a half years ago, and the sinking feeling of betrayal hit immediately, and never really let up, even as court date after court date was postponed, probably half a dozen times over two years. But even after the slightly disappointing verdict, a weight was lifted – the crushing attorney fees were finally done increasing, and this could become an annoying thing of the past.
The thing is, nothing ever happens in a vacuum. This frivolous lawsuit brought about a whole slew of consequences. I know how it has affected us personally and the gym business thus far, but I don’t know how far the effects have reached or will continue to do so. There’s bad and there’s good, thankfully.
My husband suffered the worst – the impact this had on his passion for fitness and love for the gym was no joke. He prides himself in his knowledge, experience, gym programming, concern for proper form and safety, and the way he runs his classes. He lost a lot of joy in what he does by someone so easily being able to accuse him of negligence in all of the above and actually take it far enough in the legal system to cost him years of time and money and stress. My husband has built something amazing with the gym – a community of people who love fitness, are getting healthier, and have a good time doing it, and while that remains and continues to thrive, the nest egg that came along with it is gone. Not that money is everything, but a man prides himself in providing for his family and their future, so when that is taken from him for such a ridiculous situation (and by someone who is likely in a much higher tax bracket than we are), it cuts pretty deep.
Friendships and trust were lost over it, and in more relationships than just the obvious. It’s one of the most disappointing parts of this whole thing to me, as I generally assume everyone to be nice and for longstanding friendship and loyalty to mean something. Unfortunately, people can be really crappy, and I should probably learn not to trust as much as I do. But friendships and relationships were gained too, so it feels more like a profit in the relationship department.
For Ronnie and me personally – this whole lawsuit and the stress that came with it brought us to the lowest point of our relationship, and we almost fell apart. But, we are fighters, and I’m so grateful we didn’t let the actions of one selfish jerk actually tear us apart. We stayed the course, rebuilt, and have a better marriage than we ever did. And without all that, I can’t say that Miss Layla would ever have come to be. We never planned on another kiddo, but can’t imagine life without her, so for that, maybe we owe the plaintiff a thank you? Surely God could have found another way…
I’ll probably never really know what impact this all had on the plaintiff. While the verdict wasn’t exactly how we wanted it to go, it must’ve been highly disappointing to the plaintiff. Knowing the details that we do and doing some simple math, I can’t imagine he got the payout he was hoping for, and I have to wonder if it was worth it? There’s been a bit of local publicity instigated by his own attorney’s press release, and from what I’ve read and heard, he hasn’t been met with much sympathy, but my circles are a tad biased. He owns his own local real estate business so he took a risk with his own reputation by pursuing this case, so who knows what impact that may have on his career. Probably not as much as I wish it would. Oops, did I say that? #sorrynotsorry . What”s crazy is our house is on the market, and within days after the case had wrapped up, we got a call from the real estate scheduler saying the plaintiff wanted to show our house. What are the odds? Maybe somehow he knew and was poking us, or maybe it was just coincidental. Either way, we quickly declined that showing. He could’ve had the perfect buyer but we refuse to let him make a penny off of us. Regardless of reputation, I can’t imagine a person that doesn’t take responsibility for their own actions and blames others for their problems is ever really happy in life. No amount of money would fill that emptiness anyway.
Speaking of reputations, certainly we are wondering what the little bit of local chatter on this whole case will do to the gym business. It’s not a concern with current members who know the truth, but it’s a bit unnerving to hear a rumor here and there that we “sold everything and closed up shop” or read comments on some Reddit post from a bunch of keyboard warriors that think they know everything about something they know nothing about. Recently a persistent local reporter for Channel 9 stopped in to film Ronnie’s side of the story and plans to run a piece next week. It’s nice that at least one media outlet actually cared to cover both sides of the story, since so many just picked up the Plaintiff’s press release and ran it without all the details. We will see how things air next week and hopefully it’s edited ethically and represents Ronnie and Sky’s Limit CrossFit accurately. Either way, I really believe that the truth always wins, and if Ronnie keeps focusing on what he does best, and we put the negativity of this behind us, our future is bright no matter what happens in the details. We continue to love and hope and dream together, and we continue to knock out all the challenges life throws at us, so despite what a judge and jury could ever decide, WE WIN.
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.