Kinsley Turns One: a reflection.

Tomorrow Kinsley will turn one year old. The realization is a lot to take in.

Consider this: the odds of becoming a human being are 400 trillion to 1– it is basically a miracle that any of us exist the way that we are. On top of that, dare I say Kinsley is lucky to be alive: the odds of being born with TEF are 4,000 to 1, and while it is not the rarest congenital defect to exist, the complications that come with it can be fatal.

She is alive and well on her first birthday, despite her congenital defects, which we happen to be very grateful for. In every way the odds have been in our favor–to others it may not sound like it, but I believe it depends entirely on how you view things. Let’s go back and have a look at a unique perspective.

I woke up the morning of Sunday, June 25th around 5 am with slight contractions, similar to what I’d been having for the previous week. Nick and I had breakfast at JW Filmores and when we got home he left to have his hair cut. By the time he returned we decided we should head to the hospital.

We arrived at McLaren Northern Michigan’s emergency room around 1:00 pm and were situated in our birthing room shortly thereafter. I was dilated to 2 cm, which meant we had some waiting to do. By 5:30 I was dilated to 5 cm and within the next 45 minutes I was up to 8 cm. My doctor finally came in to break my water at 6:45 pm and I was told to push at 7:10 pm. Kinsley was born about 25 minutes later at 7:37 pm. The ease of my birth experience was made up for by the difficulties that followed.

Kinsley was placed on my chest, for maybe three minutes at best.


My placenta was abruptly pushed out without warning or explanation of what was being done. I did not opt for the epidural, but I had to be stitched up where I tore and I apparently was administered numbing medication to do so, though I could feel every thread being pulled through my skin. Kinsley was taken from me to be weighed and measured, while my body was in shock, shaking uncontrollably from pain.

Immediately after she was weighed, there was a moment of confusion; something had gone wrong but no one was talking. It was terrifyingly silent and urgently noisy all at once. I felt shrouded in thick fog, every second moving past in a slow blurry sludge. I kept looking to my mom for an answer but could only see terror across her face, mouth hanging open, hands trembling, eyes moving back and forth from me to the table Kinsley had been moved to. A light was shining on her purple, turning deep blue body, and three, maybe four nurses were huddled around her, counting with deep concentration.

“What’s going on?” I repeated probably fifty times. But no one would answer me.

I can’t remember how we got to the next bit, it was a sensory overload for me… but by some miracle even greater than 400 trillion to 1, the emergency was over and she was breathing again.

The next thing I knew, we were in separate rooms. Nick and I in one, Kinsley down the hall in another, hooked up to some contraption. It took a while to figure out why she couldn’t breathe on her own. A specialist was called in and it was determined that constant suction was needed to keep her airway clear. Finally they found she had Tracheoesophageal Fistula with Esophageal Atresia. Another hospital was called.

By this time she was 4 or more hours old. I had held her for 3 minutes, seen her near dead on a table for slightly less than that. It was not at all what I had expected or envisioned, the planner that I am. I didn’t know it then- maybe I had an inkling, but no real idea- that the next several months would not be like anything I ever could have imagined or prepared for.

Kinsley was taken to the Helen DeVos Children’s hospital. She arrived there before I could even leave Petoskey. The separation was vast, like nothing I had ever known or felt before. Looking back, I recognize that this is when the bitterness began. There was so much hurt that I couldn’t possibly know how to process.

Kinsley’s pain was physical. She underwent two surgeries: One was just two mornings after she was born, the other 2 weeks later. She had several procedures, saw many specialists, encountered dozens of angels in disguise, and by the grace of God she began to recover and thrive.

In the meantime, Nick and I were trapped in a bubble. Stuck in a place no one seemed to understand, feeling things our friends and family had never felt. It was as if time had literally stopped. Everyone else’s life continued on as we watched from the outside. Other people got up and went to work like normal, had their babies and took them home like normal, enjoyed their summer beach days like normal…but all along, there we were, reliving the same day over and over and over again, stuck in our own personal time warp. It wasn’t easy, but we had each other.

Kinsley turned one month old in the NICU. Two weeks later she was discharged and the time warp finally broke, but the bitterness remained because even though we weren’t at the hospital anymore, everything still wouldn’t be normal yet.

Together the three of us had cleared an enormous hurdle, we had moved a mountain none of us even knew existed. It seemed things would be easier out of the hospital, but once we were home safely, other struggles began.

There was feeding therapy, doctors appointments, medical procedures to perform on our own at home, special feeding routines, pumping for breastmilk every two hours to keep a supply up that no one, not even my baby, could help me do.

In the hospital I had felt the unfairness of it all clinging to everything around me- every step, sight, smell, and sound a constant hovering reminder of how brutal life can be when dealing its cards. Though, when I got home it was something I had to really acknowledge face to face. Everywhere we went (which wasn’t many places or very often due to the severity of the consequences that would result if Kinsley were to get sick) I felt the stares. I felt the curiosity. I felt the questions and the wonder and the ignorance freezing every inch of my heart. In the grocery store. At the dentist. Even getting a coffee.

Sometimes it hurt my feelings; even though people stared because they didn’t know, which is okay, I wanted them to find courage to ask and learn because then I could have at least set the record straight. Not that I needed to, but I wanted to, for Kinsley. She deserved to be recognized for all her accomplishments, not stared at for all her differences.

Once I was at Starbucks with her and I had sat down at a table to wait for a friend. A man came up to me pointing at Kinsley and said, “So what’s with the tube?”

He asked kindly, and since I appreciate and prefer the courage it takes to ask rather than the fear that makes people stare, I gave him the brief explanation I had given so many times in the month we had been home: Kinsley was born with a defect called TEF that caused her esophagus to dead end in her throat and the portion attached to her stomach to be attached to her wind pipe. She had emergency surgery after she was born and now she has the tube to help her eat until everything is healed up and strong.

The man smiled and told me how lucky I am and how beautiful and perfect she is. He asked if it would be okay if he prayed over her. Then he asked if he could touch her. I said yes.

This stranger put his hand on Kinsley’s shoulder, and got on his knees beside our chair and prayed that Kinsley be healed from the top of her head to the very soles of her feet. He prayed that her doctors see perfect, miraculous results at her next visit and that she continue to develop well as time goes on. He then stood up and thanked me for allowing his day to be made by giving him the opportunity to pray for my precious baby girl.

Little did he know, two days later we had our first follow up in Grand Rapids, complete with swallow studies and an esophogram, and the results were perfect. In fact, in the year since Kinsley was born, and the ten months she’s been home, there have of course been challenges, but her overall growth and development has been spot on… her results have been miraculous, even ‘perfect’ if that’s how you choose to look at it.

I don’t know what the odds are that that man was able to find me where I was that day and speak words to me that I needed to hear, I guess 1 in 7.4 billion, but he did, and it helped develop my perspective and ease the bitterness still oozing from my scars.

Something in my heart sparked from our conversation, from the prayer this stranger gave us. He was completely honest and genuine when he said “your daughter is beautiful and perfect, you are so lucky.” He didn’t say it like he felt bad for me or her, which is what I was used to hearing from the day she had been born- this sort of, half-smile i-don’t-really-know-what-else-to-say gesture. It was pure, and I could tell he meant it. I realized then that if a stranger could see it, without knowing first hand all she had overcome, then I should be able to recognize it too. From then on I adopted the phrase “life is 10% what happens to you and 90% how you look at/react to it.” There was nothing I could do about her congenital defects; it was what it was and we had to make the best of it. The least I could do was look at the bright side of things rather than dwell on all the bad.

This type of thinking had its challenges. When I really realized there was nothing I could say to change how others viewed her, or me, or our struggles- and let me tell you, quite a few people to this day did/do not understand the severity of her complications, they probably never will- it was hard not to try to change their minds. But I had to realize that those things are beyond me, all I can do is control how I react to them. So I just stopped. If it didn’t require my attention, I didn’t give it any.

More importantly, once I stopped looking at Kinsley from the viewpoint of “there’s all this wrong with her” and I instead started pointing out all her triumphs and everything she’d overcome, I was able to stop comparing and calling out differences between Kinsley and other babies. I could finally let go completely of the bitterness I’d held toward others whose babies were ‘perfect’ and who never had to go through the same struggles we had gone through. The expectations had vanished and I could focus on her only.

The odds of making the best out of a difficult situation are 50-50. It was all up to me, so I chose to react to the situation differently, and my new perspective helped change our lives for the better and move us in a positive direction. This was only one thing I learned from our unique situation.

In fact, all of the learning that happened during Kinsley’s first year was unexpected. I figured I’d learn things like how to feed, bathe, change and soothe a baby. I thought I’d learn how to juggle work and caring for my child. I anticipated learning how to breastfeed and all that jazz. I assumed I’d have to master holding an infant while folding three loads of laundry, but it wasn’t like that at all.

Instead I learned that ‘perfect’ comes in so many forms, you just don’t know it until you do.
I learned that blue eyes are so overrated, it’s those honey colored hazel eyes that can melt hearts and fold even the toughest line into a soft smile.
I learned its OKAY to listen to your body and your heart and not force yourself to pump around the clock because society tells you breast is best, but no one understands that its even harder to do when your baby CANNOT EAT except through a tube.
I learned how to keep quiet when other mom’s complaints consisted of clipping finger nails/changing outfits because of spit up…while my complaints were about arguing with carelink because they couldn’t get my kid’s medical supply orders right and she needed that stuff to eat/having to drive to traverse city in a snow storm to get her a shot so she wouldn’t get RSV and be hospitalized.
I learned the difference between all the sounds my baby makes, without any doubt the ones that mean distress and the ones that don’t warrant an over the shoulder look, even when the at home nurse is sweating bullets on the edge of the couch because she’s never heard a baby sound this bad while breathing.
I learned how to place a nasogastric tube down my child’s nose, through her esophagus and into her stomach.
I had to figure out how to stuff days worth of medical supplies and baby ‘stuff’ for doctors appointments three hours away into a diaper bag that I had only ever planned on taking to the grocery store or a coffee shop downtown.
I learned how to be a secretary and a mom and a partner all in the same space.
I learned who was there for me and who wasn’t, that my partner would stand by me and be supportive in a crisis situation.
I figured out how to survive when money got really tight; how to live without things I used to think I needed.
I got good at crying and breaking down and expressing my frustrations in a healthy way and listening to and leaning on my main supporter, and providing all the same courtesies to him.
I got really good at scheduling doctor appointments and keeping track of medical records and applying for help and giving insurance account information to bill collectors and all kinds of hard things I never saw myself having to do before Kinsley was born.

And you know what? I’m better for it. I am better because of my struggles. The perspective you gain and the things you learn when you struggle is immense.

Everything we’ve been through with Kinsley has been exactly what we needed. If you had asked me if I thought I’d be able to say that in a year, twelve months ago I’d have told you no while crying to my mom over the phone in a hospital hotel lobby behind a slow elevator door, praying I wouldn’t lose service on the way up to my room because I needed someone to hear me and feel what I felt, how I longed for a few moments of less stress and anxiety and freedom from constant worry and fear of the unknown.

Today I know that our challenges with Kinsley have such a great purpose, despite practically crushing us at the time. When it all began we were grasping at short threads, trying to find a light, feeling small and weak. We are in a much different place today, so much so that I often forget, sometimes for days at a time, that we had such a challenging and unique start to parenthood in the first place.

A friend of mine texted me about a week ago explaining that he was telling his coworker about me, explaining my life a little and how we know each other. He said, “You’re honestly so impressive to talk about,” he’s a grad student, so I replied with the laughing emoji and said “But I don’t have a job.” He said, “You’ve done so much as a mother…” and it really hit me then that in one short year, despite all the difficulty, despite being stripped down to nothing and being forced to learn about who I really was, I have grown into everything that I am now, and being a mom to a miracle baby is impressive. There’s nothing I’m more proud of- no degree, no job, no accomplishment is greater.

There is nothing I would change about the last year with her. Not one second. She was not at all what we expected, but now I am certain that the universe took its time on her, crafted her precisely with a great purpose in mind, so she could offer the world something distinct from everyone else. If we had not had such a difficult start, I’m not sure I would know this with such certainty.

Today Kinsley June is the beat in my heart and the air that I breathe. She’s the light of my life: my sun, moon, and every star. Being her mom is an amazing job, and the best part about it is it’s only just been the first year of an entire lifetime of learning with her, witnessing her growth, and watching her take the purpose she’s been given and turn it into something beautiful.

I am so grateful for our first year together, all the good with the bad, exactly the way it is. It has changed me, and now I can be the perfect mother for her.

Happy Birthday Kinsley June, mommy loves you SO much.

May you continue to rise, fight, and overcome any odds that are against you.

Feeding

Kinsley has been tube free for two full weeks.

This is a big deal.

Sometimes I look at this little girl and I think about how far she’s come and it blows my mind. It’s crazy to think that just a few months ago we were in the NICU waiting to hear the results of her TEF repair surgery, and whether or not they were even able to connect her esophagus together, and just since then she has spent 6 more weeks at the hospital, had two esophageal dilations, went through 15 weeks of feeding therapy, and now shes been eating solely from her bottle for two weeks straight.

To some people none of this sounds like a big deal because they don’t have an understanding of everything that we’ve had to do from the start to get to where we are now. But to those who have followed along closely and have been updated along the way, they know that Kinsley feeding with a bottle is a HUGE accomplishment.

For the sake of documentation, I want to let this post serve as a record of Kinsley’s biggest achievement thus far.

Kinsley was born on the 25th of June at 7:37pm and she was on her way to the Helen DeVos Children’s Hospital before the night was over because of her congenital defect TEF. She left Petoskey around 11:30pm and arrived at DeVos the following morning between 5:30 and 7:00am. After her arrival, specialists, neonatologists and surgeons met, confirming that she would have to have corrective surgery to properly disconnect her esophagus from her breathing tube and connect it to itself.

On the 27th, at a whopping 36 hours old, she had that surgery. I can remember waiting in the room to find out if they would actually be able to connect her esophagus to itself. Sometimes if the disconnect is too large, the surgery is put off until the baby has grown some and the esophagus is at a length that minimal stretching needs to be done to reconnect it. At the time this was my worst fear.

The surgeon came into the room and informed us that everything went well, though. Those fears were exonerated. He told us we could see her once they moved her to the recovery room, and he said that she would not be on a ventilator, as she was his first baby ever to come out of the surgery and not need one.

At that time I knew for a fact that we had ourselves a true fighter.

But I didn’t know to what extent she would have to fight.

Leaving the NICU 45 days later, I was well prepared for esophageal issues. I wasn’t well prepared for respiratory issues. I knew she would have to have dilation procedures to stretch the scar tissue that formed in her esophagus. I didn’t know that she would struggle every day to breathe, or what kind of impact that would have on her feeding.

Feeding therapy was a struggle all on it’s own. It took two weeks for the therapy place to fit her into the schedule. Even then, we met two times a week with a therapist and at first, for over ten weeks we just worked on oral stimulation because it was clear that Kinsley’s breathing was too unstable to handle liquid being added to her mouth. Her tests showed that she was aspirating, and liquid was going down the wrong tube, even though she showed no sign of it except on the esophogram.

To add, her suck-swallow-breathe patter was nonexistent. She had no control over feeding skills. It simply wasn’t there for her. This was hard for me to grasp. A skill nearly all babies are born with and have inherently, my child cannot perform. But this journey taught me patience and understanding like I have never known, and I eventually was able to accept that it would be harder for Kinsley to eat, but that doesn’t mean that she never will.

So we stuck with it. I dragged myself out of bed, half zombie, half mom, and I took my tiny baby to therapy twice a week, even when it felt pointless. Even when it felt like everything we were doing at therapy I could do at home. Even when it felt like the therapist could have been doing more. Even when it felt like I was over extending myself to get through so that important tests and appointments could be scheduled. We fought together, and I’m proud of that.

When a swallow study was finally ordered, we drove Kinsley to Grand Rapids and in a couple weeks the results were released. She had control over her swallowing, it was perfectly timed. She was no longer aspirating, and everything was going where it needed to go. She still needed to work on her rhythm, but we had the okay to start giving her a bottle.

I waited even after that because I wanted to be sure. I wanted all of the doctors to be on the same page. I wanted her ENT, Surgeon, therapist, and swallow study technician to all be looking at the same results and coming together with a cohesive plan to get her moving in the right direction and ultimately further her development rather than view only one piece of the puzzle and put her back.

It was the right thing to do.

Her therapist ordered a special bottle for her, one with notches on it that could control the flow, and make it even slower than a premie nipple, that way she could handle the liquid at whatever speed she was at without choking.

The struggle did not end with all this good news.

On December 14th, around 11:50 pm Kinsley pulled her tube out. She was doing well with oral feeds so I decided not to put it back in until I needed to. From that day forward, she went 5 days straight without any problems at all. Until one evening when she started to have an episode where she was breathing heavily, face turning red, and not taking the milk without making a mess all over herself.

We weren’t sure if she was just tired, or we were holding her in a way that wasn’t conducive to sucking and breathing, but we kept trying. She barely made it through that feeding and at the next she started to choke and she stopped breathing.

I held her in the rocking chair as her lips turned purple and her chest heaved as she gasped for air, a fish out of water.

I remembered the nurses direction when we were in the nicu, so I straightened her body out, held her chin up so her neck was straight and her airway open and I patted her back until she cleared her airway and started to cry.

It was a terrifying moment for all of us.

The next day we had feeding therapy and I told the therapist what happened. She suggested we hold Kinsley a different way while feeding her, because side lying is much easier for babies to swallow and breathe. She also had me schedule an appointment with the pediatrician to make sure her lungs were clear.

The next day we arrived at the pediatrician office and after her examination we found that Kinsley’s lungs were clear. Even in her choking episode everything managed to go down the correct tubes. Since then we have been feeding Kinsley with her body straight and head to the side and she has been doing great.

A few days later we accidentally broke the tabs off her special bottle. Since that happened we’ve been using the bottle and premie nipple we started her on in the NICU and she has yet to have a single episode.

She’s been two weeks tube free now.

As it turns out, the struggle was not so large that it could not be overcome. Kinsley comes from a family of fighters, so I should have expected it would only be a matter of time before she was able to break through.

However, it’s not completely over yet. Kinsley will still continue therapy twice a week until she’s able to use a regular slow flow nipple with the bottle. Then she will have checkups regularly from there forward.

Despite the long road we took to get here, we are so happy to have finally reached this destination. It’s the best Christmas present we could have asked for.

Happy Holidays, friends.

Breastfeeding

Let’s talk about World Breastfeeding Week. 

Kinsley was born June 25th. Leading up to her birth I did everything I could to prepare to be a breastfeeding mom. I purchased a pump, I stocked up on storage bags and nipple cream, and I told myself every day that no matter how hard it was, no matter if she couldn’t latch, or my milk didn’t come in for a week, or my supply wasn’t what I’d like it to be, or my nipples cracked and bled, or I got mastitis, I told myself these things would not be excuse enough to formula feed my baby when I have what she needs right inside me. I told myself I would find a solution to any problem we had. I told myself I was not allowed to give up because I wanted so badly to provide for her in a natural way. It’s something that is important to me.

She was born via natural vaginal birth. No drugs, no pain meds, no epidural. Just sweat, tears, and pure love. I was so proud of myself and at that time imagined breastfeeding would be the same way- hard work but worth every bit of sacrifice and resulting pride. 

But I hadn’t planned or even considered the complication we face today. It wasn’t that my milk didn’t come in. It did, and within 24 hours of birth I was making more than enough for her; it wasn’t that she couldn’t latch, the nurses and I came to find out in the third week after her birth that she was a better breastfeeder than bottle feeder. It wasn’t that my nipples cracked; they didn’t, not even from pumping so much. It wasn’t that I got mastitis; I DID, and I figured it out.

I prepared for these kinds of things because they were the struggles I’d read women often had. But our struggle is different.

Kinsley just can’t eat altogether.

Her congenital defects make it difficult, painful and dangerous for her to take any food by mouth, something I am still coming to grips with.

We got to breastfeed for a little over a week, but when her feeding therapy became dangerous and she needed a second surgery, all oral feeds, including by breast, were forbidden. It isn’t me, it’s her, and no one told me this might happen, in fact it was the farthest thing from fathomable. It still is.

But I still want to provide for my baby, even if she is unable to eat right now and for months to come. I said I would do this no matter what, and I will.

So I have been exclusively pumping around the clock, every two hours to provide the volume that her body needs now, which is 2.5 ounces every 3 hours or 20+ ounces total per day.

It’s really hard. Harder than the struggles I was imagining we might go through.

I don’t get to wake up in the night and put her to breast in our bed for 20 minutes and place her back in her bassinet once she’s full, only to turn over and go back to sleep myself. No, instead she sleeps soundly in the NICU while I wake during the early hours of the night to sit on the second bed in our hotel room and turn on my pump. After 20 minutes I unhook myself from it, turn it off and clean the parts. I walk to the second floor and place my labelled liquid gold in the fridge. Then I return to my hotel bed feeling angry at women who complain about waking in the middle of the night to feed their child, feeling the need to scream, “AT LEAST YOUR BABY CAN EAT.” And then I try to sleep for two more hours until I must repeat the process.

The anger and sadness I’ve felt have been hard to deal with, because I want someone to blame and it isn’t anyone’s fault. I feel angry when I see other moms who have it so easy and don’t realize how lucky they are that these struggles aren’t part of their every day lives, when I would do almost anything to struggle with latching issues or milk supply instead of my child’s inability to eat. I sometimes look at my child and feel so sad that she has to eat through a tube in her nose that nick and I have to learn how to put down her esophagus. It’s scary. It’s painful for me, and it doesn’t feel normal because it’s not for many others. But it is for us.

It’s not glamorous. Its not what I imagined. It’s not fun. But it’s honest motherhood.

I have struggled so many days and nights with the blind commitment I made months ago, to continue on no matter what. At night I have sat up in bed with both shields attached to my breasts, wondering why I am still doing this when many women have quit before enduring half of what I’ve been through to do this for my child.

But then I think of how different this is for me, and the perspective I have now because of this. Then I remember how my story can be inspiring to others, and how the pride I feel by providing for Kinsley this way is 10 times the pride someone else feels for providing for their child because the struggle I have endured is so much greater. I remind myself that nothing about this is easy but that’s okay, because these results are so much greater to me and mean so much more in my heart than if we had had smooth sailing from day one. And the bond I have with my child is something no one can even come close to measuring because they have no clue what this has been like.

All that being said, I hope if you’re struggling with breastfeeding this week or in the future that you remember how much more difficult it could be and it helps you keep going. And if you decide you can’t, I hope that you feel confident about your decision. I know what that’s like too.

Recently I was faced with the decision to go to 50-50 feedings (half breast milk, half formula) temporarily because I had to return home for a short time and had no way to transport milk 200 miles to the hospital while I was gone. Even though I knew she would be back on straight breast milk when I returned, it was devastating and I felt at first like a failure, but babies are fed formula all the time, and there is nothing wrong with that. I had to remind myself that you can only do what you can do.

So no matter what, I hope if you’re a mom, breastfeeding, formula feeding, or otherwise, I hope you know that even women like me, who have fought tooth and nail to do this for our babies, even we support your decision whatever it is, because FED is truly best no matter if it’s formula or breast milk and no matter how it’s given- by breast, by bottle, or in our case, by feeding tube. 


Kinsley: Update 7.25.17

As some of you know, Kinsley had a video swallow test and an esophogram yesterday, July 24th. Today I met with a neonatologist and the feeding therapist to discuss the results and the course of action we need to take next.

The results of the esophogram show, in simple terms, that where Kinsley’s esophagus was sewn together one month ago in her first surgery, that area has healed and is very narrow now. The video clearly shows the food coming to that point and then getting stuck because it is too narrow to go through; it looks much like an hourglass if you can imagine that. The food is piling up before the tiny opening and then slowly dripping through the surgically repaired area. This is dangerous because the food could build up so far that Kinsley could choke, or spit up which could irritate the supraglottoplasty surgery that she had on her airway July 20th. Because of this, the Neonatolgist, ENT and the feeding therapist have decided it best to stop oral feeds for the time being.

Even if this was not an issue, the video swallow test shows another reason oral feeds are not safe at this time: the feeding therapist explained that Kinsley is swallowing food and some of it is going into her trachea where it could go into her lungs and cause pneumonia or other respiratory infections which could be life threatening at this point in her development.

These two issues must be fixed before Kinsley will be able to feed orally and without her feeding tube.

To solve the narrowing of her esophagus at the surgical repair site, Kinsley will have to have another surgical procedure, where she will be put under and a balloon will be inserted into her esophagus and blown up to try to stretch it and ultimately make it wide enough for food to pass through without getting stuck and building up.
To fix the issue of her swallowing and food going down the wrong tube, she will have to go through feeding therapy for 8 weeks where she will be fed 10-15 milliliters by a feeding therapist once a day every single day for about 2 months. She cannot begin this therapy until her dilations to her esophagus are complete. She will have her first dilation in two weeks as the surgeon wants to be sure her last surgery has healed properly. After the first dilation the doctors will wait a couple weeks to see how successful the dilation was; sometimes multiple dilations need to be done to open the esophagus sufficiently because it can close back up. As long as Kinsley’s surgical repair site isn’t too fragile and the tissues can handle being dilated again without risk of rupture, they will perform as many dilations as necessary. Only when the dilations are complete will she begin therapy.

While the dilations have to be done at DeVos, the 8 weeks of therapy can be done at home. Unfortunately, the therapy once a day is the only time she will be able to feed orally, which means she will come home with a feeding tube in her nose. There is talk of putting in a Gtube in her stomach, but she will still have a tube in her nose because it is holding her esophagus open and preventing it from becoming so narrow it closes off. We will feed her through the tube except once a day when a feeding therapist from McLaren Hospital in Petoskey will come to our home and do the therapy with us and Kinsley. After 8 weeks she will have another swallow test. If she passes it (no food is found going into her trachea) then she will no longer need to be tube fed, and we can finally go to oral feeds.

We have a long road ahead. At least one month and a half at the hospital for the dilations, and possibly longer if she needs more than 1 or 2 dilations. Then two more months at home of tube feeding and feeding therapy.

Kinsley is one month old today. According to this plan as of right now, she will be 2.5 months or older when we are able to go home. (Obviously subject to change).

Please keep praying and sharing our story.

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Kinsley’s Surgeries

Nick and I became pregnant and found out that we would be welcoming a baby girl midsummer 2017. An abundance of excitement led to the creation of a beautiful nursery and an incredible baby shower. All was well.

Four weeks before our due date we went in for our final ultrasound. My OB doctor entered the room and sat down. He folded his hands quietly and after a moment of silence he laughed halfheartedly and said, “your ultrasound has shown us some surprising results.”He explained that our pregnancy was what is called an “SAU pregnancy” or “Single Umbilical Artery”, meaning that our baby’s umbilical cord was a two vessel cord made up of one vein and one artery rather than the normal three vessel cord with one vein and two arteries.

The doctor explained that this is something typically found during the anatomy scan at twenty weeks, but it appeared that our scan at that time showed a normal cord, so one of the arteries must have stopped growing altogether or fused in with the other artery– they weren’t really sure.

There was a lot they weren’t sure about. He told us that when a single umbilical artery is found, sometimes the baby will be born with other congenital and/or chromosomal defects, but since our ultrasounds were all normal, he assured us he was confident we wouldn’t face any of these defects.

I spent the next three weeks trying to emotionally and mentally prepare myself for the worst, hoping, praying, and expecting fully that it would not come to that. I was wrong.

We had a natural, vaginal, drug free birth, and after six hours of active labor and 26 minutes of pushing, our daughter, Kinsley June, was born Sunday, June 25th, at 7:37pm; a modest 6lbs, 11ounces, and 19.5 inches long. She was placed on my chest, the doctor began stitching me up, and not five minutes later she was taken from me, placed on a table under a beaming light where four nurses hovered over her limp, blue body, trying to suction her throat, count out loud and with two fingers pump air into her lungs simultaneously. After minutes that felt longer than my life, they were successful and she began to breathe again. Temporarily.

I did not hold my daughter again for eight days, as she was taken to the Helen DeVos Children’s hospital for surgery in Grand Rapids, Michigan, which is over 200 miles and 3 hours from our home. I was given a cloth scent doll that I held all night in place of my newborn baby who was taken from me. The following morning I was discharged from the hospital in Petoskey, and after going home to grab a few things, we drove to Grand Rapids where we’ve been ever since. We have spent almost four weeks at DeVos now.



As it turns out, Kinsley was born with three congenital defects: Tracheoesophageal fistula (TEF), Esophageal Atresia (EA) and an Anterior Anus.

TEF and EA are responsible for her stopping breathing a few minutes after she was born. TEF is an abnormal connection between the upper part of the esophagus (tube that carries food from mouth to stomach) and the trachea or windpipe (tube that carries air into and out of lungs), and is a condition that affects 1 in 4,000 children. It often occurs with EA, which is when the upper part of the esophagus does not connect with the lower esophagus and stomach. Both defects are life threatening and must be corrected by a pediatric surgeon immediately following birth.

Basically, the throat opens to two tubes, the trachea which branches off into the lungs, and the esophagus which takes food to the stomach. From the mouth, Kinsley’s esophagus began but dead-ended in a small pit. The bottom part of her esophagus which should have connected at that pit was instead connected to her trachea. This means that stomach acid and other fluids from her stomach could go into her lungs, and anything that she did swallow would go into the pit and then come back up and go down her trachea instead, causing her to choke and stop breathing.

Surgery to correct this involves going in through the side between two ribs to first disconnect the lower esophagus from the trachea and then open up the upper esophagus pit and then attach the two pieces together.

36 hours after Kinsley was born this surgery was performed. After five hours, the surgeon came out and told us it was successful. He was able to rewire her insides and predicted a 3-4 week recovery.


Kinsley came out of surgery with a chest tube to drain fluid and blood from her lungs, an IV in her arm to deliver TPN and lipids, and a feeding tube in her nose since she would be unable to feed for the time being. On the 3rd of July her chest tube came out and we were able to hold her for the first time. A few days later they replaced the IV in her arm with a picc line in her head, which is a more permanent IV that doesn’t need replacing as often. For a brief time she was on CPAP, just to open her airway and help her breathe while recovering. Soon after, a video swallow test was done to make sure there were no holes in her esophagus and to verify that everything was healing well and no narrowing was occurring. The surgeon reported that the results were promising and we would be able to start feeding her.

In addition to a full recovery, in order for Kinsley to come home the doctors needed to see that she was gaining weight and taking full feedings every three hours by mouth without needing to use the feeding tube in her nose.

She started out strong, taking half of her feedings by mouth with the bottle, and latching at the breast like a champ. Often she would become exhausted halfway through feeding and fall asleep, so the remainder of her bottle (60-70%) was put in her feeding tube. Every time we fed her she tolerated the full feeding without spitting up. This went on for a few days until she stopped eating and was unconsolable. The doctors determined that she had acid reflux and started to give her Zantac to combat it. From there we had more success with feeding, all the way to the point that she was taking 50% on her own. At 80% the feeding tube can come out, and we were hopeful that we would get there soon.

Unfortunately, Kinsley began having episodes where she stopped breathing during feedings. Two times medical attention was required to bring her oxygen back up to safe levels. At that point, the neonatologist ordered that she been seen by the Occupational Therapist (OT), who came to watch her eat. On the 17th feeding by mouth was deemed unsafe due to oxygen desaturation and her color turning as a result.

OT ceased oral feedings and decided it best to have the Ears/Nose/Throat (ENT) doctor see her and order a new course of action. That evening ENT took a look at her throat and reported that her strider was one of the worst they’d ever heard, and there most definitely was extra floppy tissue blocking her airway.

Currently, ENT has ordered a 48 hour cease on her oral feedings to see if the swelling in her throat will go down so that they can do a bronchoscopy. Depending on the results of that test, ENT will determine with the pediatric surgeons whether or not the extra tissue will have to be surgically removed. It has been said that this is the most likely outcome. So, to recap, this is where we’re at:

June 25- Kinsley is born
June 27- Surgery
June 29- CPAP
June 30- IVs out, Picc line in
July 2- Morphine stopped, CPAP off
July 3- Swallow Test, feeding began
July 6- Acid Reflux discovered, Zantac started
July 10- Taking 35% of feedings
July 14- Taking 50% of feedings
July 15/16- Stopped breathing
July 17- OT stopped oral feedings, ENT ordered Bronchoscopy
July 18- Surgery is being discussed

A second surgery means starting back at square one, where we began three weeks ago. Our daughter will be put under again, she will have a breathing tube and feeding tube, IVs will be replaced and a picc line will be put back in her head. We will be unable to hold her, unable to dress her, and she will have to learn to eat all over again after she recovers from this second surgery. All of the progress she has made will be erased.

The emotional burden is immense; maybe you know what it is like to live out of your backpack, miles from home- maybe you can remember a time where it took all your strength to get to the next minute of every day- it’s possible that a stressful situation has robbed you of your appetite and sense of calm, among other things- and perhaps you can imagine what it is like to jump at the sound of your cell phone because every call could be the news that causes your undoing. It has been a long three weeks of this, and our journey is only just beginning.

These are all things Nick and I have been overcoming together. However, after three weeks off work, Nick has had to return to Petoskey to pay the bills, as our financial resources have been stretched to their limits. Now that he has had to return to work, we have to overcome these emotional struggles 200 miles apart, and on our own.

It has been a long three and a half weeks. We have recognized our need for help, and we feel it is now time to ask for it.

It is my hope that in sharing our story, by the kindness of people’s hearts, the stresses of the financial burden can be lessened. Any donations made will help cover Kinsley’s medical expenses not covered by insurance and the living costs such as food and a room for our extended stay at the hospital.

From the bottom of our hearts, we thank you for taking the time to read our story. We thank you for your positive thoughts, vibes, and prayers. If you are unable to contribute to our gofundme, please share our story with people you know, and continue to keep our sweet baby in your thoughts and prayers- she needs them now more than ever. We will get through this…she is refusing to sink. (https://www.gofundme.com/kinsleys-surgeries)

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Due Date Day

12:01 AM 7/1/17

Happy Due Date day Kinny Jay 🌸

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What we’re going through is so hard but you’ve proven your tremendous strength and we are so proud of you for hanging tough and pulling through more in 5 days of life than most people ever endure in their entire adult life. You are so special and perfect and we already cannot imagine life without you. 

You have your daddy’s nose and hair and mommy’s lips and chin, and time will tell whose eyes you’ve got. The little patches of hair on your tiny shoulders and back have earned you the nick name “little chewy” which your uncle Brendon says definitely makes you my child. The little faces you make show how much personality you already have, and you’ve certainly already got daddy wrapped around your finger. I can tell. 

You’re so perfect. Two perfect ears, ten perfect tiny toes and fingers, a perfect head of beautiful dark hair, two perfectly adorable chubby cheeks and cute little leg rolls. Perfectly made and loved immensely. I cannot even begin to explain it. 

Kinsley Estelle June, you are the light of my life and my entire world all wrapped into one tiny, perfect, adorable bundle. I wouldn’t have it any other way. 💕🌸