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!
It’s been over three years since I wrote a blog post, but we thought it was time for me to bust this thing back out to help keep family and friends up-to-date with our upcoming adventure. Not only is Layla’s arrival coming up quickly, but we learned recently it’s going to be an even wilder ride than we expected.
Layla is already trying to be like her big sister as she was recently diagnosed with a congenital heart defect. Doctors were already able to identify the issue at 32 weeks in utero with ultrasound technology. They had been watching her development closely due to Skyler’s history, a single-artery umbilical cord, and the fact that I am so fondly categorized as “advanced maternal age.” This is a much different defect than what Skyler had, and is called Transposition of the Great Arteries with a ventricular septal defect. So while Skyler’s heart had a severe narrowing in her aorta that caused her heart to have to work too hard to pump oxygenated blood back out to her body, Layla’s blood oxygenation pathway is mixed up, so oxygenated blood would not be pumped out to the rest of her body. This only becomes a problem after birth when she uses her lungs to oxygenate her own blood, as right now I’m doing that work for her. Additionally, babies in utero have a couple holes in their heart that allow oxygenated blood to mix, and those holes don’t close up till after birth. Layla has a bonus hole, which is the ventricular septal defect. This extra hole will actually help her in those first few days that she’s on her own breathing.
Interestingly, there are two categories of congenital heart defects, and Skyler’s was the most common condition in one category, and Layla’s is the most common condition in the other category. Our experience with Skyler’s surgical repair and the fact that these are “common” heart repairs gives us much confidence and hope for a positive outcome. Anyone that knows Skyler would never guess what she went through as a baby and how sick she once was. Furthermore, discovering Layla’s condition ahead of time allows us and the medical team to prepare for her, so she can go into surgery ahead of the game, rather than critically ill as Skyler was.
With all that information, we will now be delivering Layla at Children’s Mercy Hospital (downtown KC) so the medical team can stay on top of her health from the get-go and prepare her for surgery. There are still a few variables but if there are no surprises and her diagnosis and expected condition remain as they are now, her surgery would likely take place near the end of her first week of life. While it’s a pretty straight-forward surgery to “switch” things and repair her extra hole, it does require open heart surgery. I stop myself in shock every time I say or think of those words applying to our brand new sweet little baby. But Children’s Mercy is one of the best in the nation to treat this condition and they took great care of Skyler. We are in the right place for this and must trust the process.
This blog post might read a little dry and emotionless – I’m just keeping things factual for the sake of brevity here. This has hit Ronnie and me hard and the breadth and depth of emotions that go with this news is indescribable. Skyler’s ordeal was long enough ago that the trauma had since faded and since we never planned on a second child, we never imagined going through something like this again. It’s shocking and terrifying and familiar all at the same time. I’m sure I will write more about it at some point, but just wanted to get the info out there. Children’s Mercy has terrible cellular reception so we know it might be difficult to keep everyone updated via text and social media, and since we’ll have plenty of time there, I can plug-in and update via this blog much more efficiently. We ask that our friends and family respect our ability to communicate what is going on once things get cray. We’ll have immediate family around to help spread the news but otherwise, we will try to post updates here as often as possible. We are expected to go full term at this point so we still have 7 weeks or so of normalcy as she fattens up for the adventure ahead. Prayers for patience, peace, and of course a healthy outcome are all we can ask right now!