Dear Kinsley

Sweet Girl.

Somehow my tiny 6 pound 11 ounce NICU baby is going to be 6 months old in exactly 2 weeks.

Somehow my TEF baby has been tube free for 4 whole days now that she’s doing oral feeds and taking a whole bottle now.

Somehow my silly girl has discovered her tongue and her voice and her feet and hands and can lift her head and grab things and sit up and roll over and play and laugh and sleep through the night in her crib.

In the blink of an eye.

I’m literally shocked. Four months ago (plus three days) we brought Kinsley home from the NICU and our next chapter began, and now we’re turning pages almost weekly.

People really aren’t over exaggerating when they tell you how quickly the time will go by, how fast your baby will grow, and how short each phase lasts. They aren’t kidding when they say you’re going to miss this. My sweet baby is so many things right now, and I want to recognize them here, and hope that 10 years from now she’ll still be everything she is right now, plus even more.

I can’t stop the time from passing so quickly, but I can make sure that while it does I am teaching her the most important things about living. So here’s my first #dearKinsley post.

Dear Kinsley,

Please stay loud.

May your coos and screeches continue in the form of words heard. Voice your opinion. Laugh out loud. Be joyful and thankful and happy and never stop talking about things that are good.

Please stay sweet.

May you catch more flies with honey than with vinegar- not that you’ll want flies, but regardless. Smile. Use kindness as your secret weapon. Don’t say mean things. Always say what you mean. Words are powerful but powerful is great when it’s used for good.

Please stay curious.

May your eyes stay filled with wonder and curiosity toward everything in this world. Ask questions. Seek answers. Learn something new every day and never stop because the world truly is your oyster and knowledge is power.

Please stay strong.

May your strength overshadow any obstacle in front of you. If there’s a will, there’s a way. Push forward. Life is hard and I’m here to tell you it will only get harder, but you can always lean on me and I will help you find your strength if you think you’ve lost it.

Please stay true to you.

May you grow and learn and with time find yourself, who you are and what you love. Embrace you. LOVE you. There’s nothing more important in the world than to nourish the roots of who you ARE. You are beautiful inside and out and self love FIRST will get you wherever you need to be.

Please keep growing.

May you continue to challenge yourself and push for progress. Set goals. Achieve them. If you fail, try again because failure IS NECESSARY since it helps you grow, and besides, success is so much sweeter when you have to work for it.

And please keep in mind…

No mountain is too high. No sea too wide.

Hard work breeds rewarding results.

That boy you think you love, he’s probably not worth it.

Believe in yourself ALWAYS.

Chase your dreams no matter how out of reach they may seem.

Put yourself first when you need to.

If you fall down 100 times, stand up 101.

You can do ANYTHING you put your mind to.

Sometimes I may not take your side, but I will always do what’s best for you.

I will love you unconditionally, no matter what.

XOXO
Love,

Mom.

 

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How It’s Going

Semester End in Sight

 

It’s finally Friday. Praise God, we made it through another crazy, busy, exhausting week.

I know what you’re thinking, “thank god it’s Friday? What do you mean,- all you do is sit at home with your 5 month old? How can that possibly be as difficult as working all week?!”

If you don’t have kids, just take my word for it and don’t mention it, or I might rip your head off. If you do have kids, and you still don’t get it, read my last post titled “no big deal.” If you still don’t get it, mind your own or I’ll probably also rip your head off.

So yeah, TGIF.

This week I’ve been way stressed out. It becomes totally evident when two things combine: exhaustion + irritation: For one, since barely sleeping Monday night and then having to take Kinsley 3.5 hours for a 20 minute ENT follow up, I have been on E since Tuesday; for two, I’m aboard the breakout train as my skin is irritated beyond control; and for three, yesterday I couldn’t find my Fitbit and I searched for 3+ hours, the whole time feeling overly angry and distracted about it. I still haven’t found it. And I’m trying not to think about it because I don’t want to have a repeat of yesterday.

Despite feeling like that for most of this week, I woke up this morning feeling oddly refreshed. I was awake from midnight to 1:30 last night, the first half hour rocking Kinsley back to sleep and then around 1:15 she pulled her tube out, but since she’s been taking a bottle (!) now, I decided to leave it out until she ate this morning and she slept so much better with it out. That means I got good sleep too. Then I fed her at 6:30 and she took a whole bottle so I haven’t even had to put it back in yet!

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All of that contributes to a good mood, and my refreshedness probably also comes partially from remembering that my handsome, weekend help will get home from work at 3:45 and take some of the stress off my hands. He always lets me sleep on the weekend which is so needed. Unfortunately he can’t take all the stress though.

First of all I have to work tomorrow night, and secondly, the rest of my weekend looks like studying and homework because the semester ends in one week.

I’ve been feeling the end-of-semester stress already for a couple weeks now at least. Last Wednesday my group gave our final presentation, Sunday the final Lab exam will open, and Monday we’re reviewing for the final lecture exam that we have on Wednesday- the last day of class. All other labs writeups, case studies, and summary assessment quizzes are due Friday when the semester ends. Luckily I only have to do Labs 11, 12 and 14, the written half of case studies 3-5 and quizzes 12-14. After studying for/completing the lab exam online and the lecture exam in class Wednesday, my semester will finally end.

Then I have to look forward to applying to the program before January 31st, studying for my TEAS test which I can take in February and retake in March, and of course, starting a new semester for A&P Part 2 in early January and ending in May. Once ALL of that is finished, I’ll find out if I got into the nursing program late spring and if I did, then my training/classes/labs/clinicals begin September 2018!

If I don’t get in, God knows I’ll rip my own head off.

So, all that being said, happy Friday. Here’s to the last weekend before end of semester filled with homework, work-work, studying, and if I get time, more New Year’s Resolution planning. 🙃

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Coffee clinks, my friends.

Enjoy your weekend unless you choose otherwise.

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Life with TEF

No Big Deal

Tomorrow morning Kinsley will have her first swallow study since July, which means that soon after we will be able to start oral feeds (hopefully) at occupational therapy. After this test we will be one step closer to getting the NG tube out of her nose, and one step further away from needing to have the G tube surgery.

Because all of her appointments are at a children’s hospital 3.5 hours downstate, when we have appointments I often spend a lot of time preparing for them. This morning while I was packing Kinsley’s diaper bag, our overnight bag, getting the pack and play together, and tidying up the house so we can return tomorrow afternoon and rest without any chores or errands, I had the opportunity to spend plenty of time thinking about something mentioned to me a week or so back.

It was said that Kinsley’s problems are “no big deal” and that I don’t do anything but sit at home [and twiddle my thumbs].

Initially I laughed it off, because I know that’s simply not true. I know that a comment like that could only be made from someone ignorant, someone clueless- someone who has obviously never seen or heard my child breathe, because if they had, they would understand immediately that an airway disorder IS a big deal. Breathing sustains life, and airway disorders threaten that action.

Initially I wasn’t super offended that someone thinks I don’t do anything but sit at home, because once again, that’s simply not true. Furthermore, how would anyone know what is done daily if they hadn’t spent a day in the life of a mom with a child who has special needs, appointments and routines? So, I shrugged it off.

I chose not to defend my position and said nothing because proving what I do on a daily basis is useless- I know that there are a number of people who have seen first hand all the work that goes into taking care of one happy, healthy child, let alone one with health issues. I know there are several people who can attest to the time I have spent on hold, making calls to doctors offices, and scheduling countless appointments to make sure my child gets the care she needs and can continue to develop normally. I know there are many who recognize the struggle we face with finances, travel, work, and life in general, given our situation. More importantly, my partner and I recognize how far the other goes in order to provide our daughter with everything she needs, which is the most important thing here- above what anyone else thinks.

That being said, this post’s purpose is not prove what I do for my daughter. I don’t need to list everything here that I do day in and day out to prove someone wrong. Instead, I am writing this post as a call to action for anyone who looks onto another person’s life making assumptions and conjectures without any actual knowledge about it, to STOP.

Making comments when you don’t know if they are true or false is rude and hurtful and can be especially oppressive to a person dealing with a lot already. If you don’t know something, either ask, or don’t say anything at all.

Quit whispering. Stop staring. Don’t be a coward- find some courage to understand a diagnosis, situation, lifestyle, struggle- whatever it is you are unsure about…until then, you are not entitled to an opinion.

If you haven’t asked me about my child’s diagnosis, or our daily routines, and if I haven’t shared with you what they consist of, you are not entitled to an opinion about either. That aside, why anyone would feel the need to put down a person in a difficult situation they have no true knowledge of and have never been in, is unbeknownst to me. Perhaps before projecting opinions on others’ lives, we should spend a little more time critiquing and improving our own.

Good day, friends- enjoy your cozy Tuesday- I’ll be spending mine calling my job to give them my availability involving next week’s appointments, finishing a few lab write ups, studying for a midterm for the last class I need to get into the nursing program this spring, and completing housework before I fill the Jeep with what our family needs to stay overnight downstate to make our daughter’s appointments tomorrow, you know, because her issues are no big deal. First I’m going to sit at home and twiddle my thumbs all day, though. 😉

Kinsley's Arrival

I pray for you. 

I pray for you sweet girl. I pray that when you’re old enough to ask about your scars you will understand that no one wanted you to have to go through all this pain; no more than they expected you would have to endure what you have. No one knew, no one wanted this for you, it was a surprise to all of us. I hope you also know that, surprise or not, we wouldn’t have you any other way. 
I pray that when you’re old enough to understand that doctors did what had to be done to save your life that you will not see your scars as marks of imperfection, but rather as proof of the courage and strength that lives inside of you. I hope you use these reminders to your advantage, instead of making them cause you to feel different in a negative way. Your incision and chest tube scars are beautiful because they tell a story- the story of who you are, what you’ve been through. And if you have to have a trach in your throat and a g tube in your tummy, those scars will be markers of strength too. I hope you never let anyone tell you or make you feel any different about them. People will look and people will talk but ultimately you are the judge of your thoughts and the owner of your feelings toward yourself. I hope you see past tissue and skin and realize the most important things are not those skin deep, for they barely scratch the surface of the little girl who shines bright with courage, strength and beauty from deep inside. I hope you never feel self conscious of your battle scars. I hope you embrace them and let them drive you above and beyond anyone’s expectations. I hope you keep surprising us. I’m rooting for you. Mommy loves you. ❤️

Life in His Presence, Uncategorized

Acceptance, Patience, Gratefulness. 

In the middle of last week I found myself browsing the ads on Craigslist and was taken by surprise when I found a house for rent that seemed to meet our needs. I messaged the owner and he sent us an application, which I filled out and sent back an hour later. I wasn’t expecting that we would be approved because I had a strange feeling about the whole thing, but the next day the man contacted me to arrange a time to go have a look at it. When we did, we found that it really was a dream come true. 

It was two stories, with a cute yard and a 2 car garage, open floor plan, 4 bedrooms, 2.5 bathrooms, and had a huge deck that wrapped around the back with exits in the living room and master bedroom. I left with images in my head of holiday family get togethers in the big living area, weekly evening dinner prep in the kitchen and Sunday morning coffee on the deck overlooking lake Charlevoix. I was excited.


We went home and after looking at our finances closely and mapping out the specifics of everything, it started to look like not such a good idea. 

How would we make it to doctors appointments and each of our jobs and my night class if we lived so far from town and share one car? How would we afford to pay for propane heat, especially if this winter turns out to be harsher than anyone imagines? Who will help us move as the winter season begins and will it be taking on too much with everything we have going on?… Before long we realized the opportunity was lost; there was too much at risk and no safety net.

I was so sad. I still am. Every day since we looked at that beautiful house I’ve found myself thinking about what it would be like to live in a bigger space with room to grow. And the only thing I’ve been able to do to calm the yucky feeling that comes with passing up an opportunity that seems so perfect is to turn to a piece of writing I found the day we were approved to look at the house; the same piece of writing that was a sign that gave me a bad feeling that I was about to learn a lesson. 

It’s from a 365 day Devotion book I was given in the hospital with Kinsley this past summer. It focuses on embracing joy in God’s presence. The gist of that day’s page was this:

“Learn to be joyful when things don’t go as you would like. Do not begin your day determined to make everything go your way. Each day you will bump up against at least one thing that doesn’t yield to your will…if you are intent upon having your way in everything, you will be frustrated much of the time. My purpose for you is not to grant your every wish or to make your life easy. My desire is that you learn to trust Me in all circumstances.” 

At first I read this and thought to myself, okay but if you want something badly enough you will do what needs to be done to get it. I was content with that answer until we looked over the details and realized there was nothing that could be done- this opportunity was just too far out of reach at this time. So I had to look back at the piece again. 

The second reflection I made was one out of anger. I found myself thinking how unfair it is that we’ve had to endure all this and it has set us back financially. I felt angry that this is an opportunity we could have seized had we not suffered financial struggles due to Kinsley’s defects. I felt upset that it wasn’t “easy” like everyone else who gets to live in their parents house or basement or whatever with their new baby. I found myself thinking, “how easy it must be to live at mom and dads house, how much money could we save by piggybacking on our parents too. ” I was feeling jealous of others who get so much help. I wondered “how can they possibly know what it is like to have only each other day in and day out.” And I decided they must not know. I tried to imagine what it must be like not to have the stress of maintaining a home and taking care of a baby on one’s own, while constantly trying to make forward progress to what better suits family life. I was angry that almost every time I turn around another person is having a baby and receiving loads of help from mom and dad, a direct result of still living in their home, while here we are doing all this without depending on anyone but ourselves and each other for our shelter, our meals, the care of our child. Later that night I was still raging when I found a quote on Pinterest that said “Do what you have to do until you can do what you want to do.”  And then it hit me. God tapped on my shoulder and pulled me out of my pity party. 


I realized I’d been playing the comparison game, and I decided to take a third look at the devotion for that day. 

“Learn to be joyful when things don’t go as you would like.” “Do what you have to do until you can do what you want to do.” I was quickly reminded that while there is nothing wrong with looking to better your life and situation, it is still very important to be grateful for what you have. That was lesson one. 

Then I started thinking about all these young parents raising their kids in their parent’s house, and I decided maybe that’s what they have to do right now. Maybe they wish they didn’t need mom and dad’s help. Maybe they are living with their parents because it’s what they have to do for now until they have what they need to go out on their own. Truth is I don’t know, and even if it looks easier for them from the outside, it might not be. Maybe it’s 10 times harder. Maybe that’s why they live at home. Maybe we are quite fortunate. Maybe not. Either way, I decided I should not complain about having to depend on myself and my partner, because that would be taking for granted the independent lifestyle we love and everything we’ve built together. I decided I shouldn’t be envious of those who have help because I don’t know why they need it. What I know is, my situation is different and I’m quite fortunate, so I should continue to focus on my blessings and keep watering my own grass. Everybody is just doing what they have to do until they can do what they want to do. Maybe it’s not ideal, maybe it’s not what we want, but His purpose for us is not to grant our every wish or to make our lives easy. His desire is that we learn to trust Him in all circumstances. 

So I’m accepting that this is our struggle, and it’s different for a reason. The same goes for everyone else. I’m letting it all go, the sadness, the anger, and the comparison, and I’m learning to have patience and be grateful while trusting in his plan.

Uncategorized

Imperfection


We are so blessed. People think they’re blessed because their baby is “perfect” (a word I have come to despise). They think they’re blessed because their baby is “perfectly healthy”; they are so pleased that their worst nightmare- an “unhealthy” baby- hasn’t come to fruition that they don’t even realize that there are other reasons a baby is a blessing.

By a doctor’s definition, you are not “perfectly healthy,” but I realize that I am still incredibly blessed.

I’m not blessed by comfortable, normal, healthy perfectness- the thing that everyone thinks they want. (Neither is any other NICU mommy, just ask one- they will tell you what a blessing their baby is) Instead, I’m blessed by your imperfection, because it has been God’s greatest gift to me. No one with “healthy, perfect” babies may understand, but that’s okay (the NICU mommies will). 

Your imperfection has given me the purest opportunity to be and feel so much more than I ever thought I personally would. I’m not just your mother; I get to be your biggest advocate. Every day that is hard I am quickly reminded (by God, or your sweet face) that I was chosen to walk this road, I get to stand for you, to fight for you. I get to feel the drive deep down to do whatever it takes, because along with your imperfections, God has given me the will to fight for you as hard (or harder) than you have been fighting since day one. He will help me find inside myself somewhere what it takes to be whatever you need. I’m grateful for that. It means so much more to me than perfection.

I don’t just feel the regular, overwhelming motherly love for you, the kind most moms feel from the second their perfect baby is put on their chest. Instead, hours after you had been taken from me, when I finally got to see you, I watched your little chest pump up and down with the help of a suction tube in your throat while you laid in that plastic tub with health professionals all around you, and someone asked, “does anyone else have this” pointing to the birth mark on your forehead, I burst into tears and said “I do” and right then not only did I feel that overwhelming love mothers feel, I also felt an immense unconditional love, and an unbreakable bond because you were absolutely mine and I already knew what it felt like to almost lose you, something I don’t wish on anyone. In the following weeks as you fought for your life, our bond grew, and I fully realized I was chosen to give all my love to you and your dad, and you were chosen to move mountains with it. No matter how hard it gets, the three of us will always have each other. It’s different for us; We will always have outstanding unconditional love like no other because of all we have endured, because of the imperfections we have come face to face with. We will have a bond few will ever know. That is so much more than enough for me; so much more than “perfect” to me. I wouldn’t want you any other way. Your imperfection doesn’t make you less, in fact, it’s what makes you so special and us so blessed. 🌸

Kinsley's Arrival

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. 


GoFundMe, Kinsley's Arrival

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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GoFundMe, Kinsley's Arrival

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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Kinsley's Arrival

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. 💕🌸