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’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 🌸

•••••••••••••••••••••••••••••••••••••••••••••••••••••••••

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. 💕🌸


Countdown to Kinsley: Leading up to the final days

In my first countdown to Kinsley post I chronicled the first two weeks of the countdown. Now we’ve been given our induction date, so instead of posting the second and final two weeks of the countdown together in one post, I’m going to post the third week, and then the last few days before induction will be in another post.

So! Here are countdown days 17-10!

June 15, Day 16:
-try something new

June 16, Day 15:
-do absolutely nothing (except wash baby clothes and sterilize bottles)

June 17, Day 14:
-take a hike (with nick and merlin)

June 18, Day 13:
-go grocery shopping alone

June 19, Day 12:
-make some homemade food

June 20, Day 11:
-take the jeep for a drive

June 21, Day 10:
-spend time with Berlin

So, that sums up what I’ve done for the third week of my countdown to Kinsley, and with induction occurring early next week, we don’t quite have 9 days left, but we have a few. In my final countdown to Kinsley post I will chronicle the last days of my pregnancy and non-parent journey, and include a cumulative, running list of everything I got to do during my last month of pregnancy.

 

Update: Pray


 One week ago I began writing this post, when the expiration date on the milk jug in our fridge said 06/06/17. I kept thinking, how can that be…? However surreal, it was a fact.

That morning I poured myself a colorful bowl of Captain Crunch and sat down at the table, thinking about the fact that I realistically could have a tiny baby in my arms before the milk on the shelves at the grocery store became expired, and that was so strange to me.

Today is the 31st of May, and we are only 31 days from my doctor given due date. At any time during the next four weeks I could deliver my baby. One week ago that surreal fact excited me, but it doesn’t today.

This morning I sat down at the table with a bowl of chocolate chex. By the time I had finished swirling my spoon around in the white-turned-chocolate milk, the cereal was soggy and I was so filled with worry that I couldn’t eat it, so I poured it down the drain.

I kept thinking, how can this be…? However surreal, it is a fact: yesterday at Kinsley’s 36 week ultrasound, the doctor came into the room and said to Nick and I, “your ultrasound gave us an interesting surprise today,” and he described the potentially dangerous complication that was found.

According to the doctor, Kinsley will be a baby born with a Single Umbilical Artery or SUA. What this means is that Kinsley’s umbilical cord only has two vessels, a vein to take things to her, and one artery to take things away, where a normal umbilical cord is made up of three vessels total: two arteries and one vein.

Anywhere from half to two-thirds of babies born with a single artery umbilical cord are born healthy and with no chromosomal or congenital abnormalities. Of the remaining babies born with SUA, studies suggest that about 25% have birth defects, including chromosomal and/or other abnormalities. These can include trisomy 13 or trisomy 18, however, the most common pregnancy complications that occur in infants with SUA are heart defects, gastrointestinal tract abnormalities, and problems with the central nervous system.

The doctor explained that while it isn’t a normal thing, it isn’t the rarest complication ever to exist, and it isn’t super uncommon. He mentioned that sometimes these babies can be born with congenital defects like double uteri or two ureters, some babies can be born with organ abnormalities like having one kidney or three, or two where only one works properly, and other babies with SUA are 100% healthy as if having only one artery in their umbilical cord had no effect on them whatsoever. He said that in extreme cases, these babies are born with chromosomal defects, where they have more than one copy of certain chromosomes, like #13 or #18, in which case ultrasounds will pick up serious and sometimes fatal organ damage or delayed development.

Our doctor told us we shouldn’t be worried about those things because all of our ultrasounds have come back perfectly normal, and none of the typical symptoms of these abnormalities have been found on our scans. Typically, a baby with SUA that has chromosomal or other abnormalities will be born before 37 weeks, and will show signs like low birth weight, a sloping forehead, organ damage/extra organs/two few organs/organs in the wrong place, stunted growth, extra fingers or toes, etc. However, Kinsley is weighing 5 pounds 8 oz at 35 weeks and 4 days, which is one quarter of a pound larger than typical babies at 35 weeks, and much larger than babies with abnormalities.

The doctor informed us that since ultrasound scans are very good at picking up abnormalities, due to the fact that we have had normal ultrasounds it is likely that our baby will be born without any congenital or chromosomal abnormalities. Nothing is 100%, and we will not know for sure if she is completely healthy until she is born, but he has instructed us not to worry until then.


All of my remaining weekly appointments have been changed to include non stress tests (NST) which will take place at the beginning of my appointment. I will go in and they will put straps around my belly to monitor Kinsley’s heart rate better. When she is moving her heart rate should increase and when she is at rest it should decrease. If this is the case, the test results will be deemed “reactive” and no issues will be found. If not, sometimes further testing will be done to determine if she is getting the oxygen she needs from the umbilical cord despite it having only one artery.

The doctor explained that if it is determined at any of these appointments with non stress tests that Kinsley is not getting what she needs on the inside, they will schedule a cesarean and she will be born early to ensure she is able to get what she needs. He said it is common for babies with SUA to be born early, and by cesarean. In addition to that, my ultrasound shows that I have extra fluid, which may also cause me to go into labor sooner. He laughed and added that this extra fluid is also the reason I am measuring a bit bigger than most women at 35 weeks, and is likely the cause of most of my discomfort.



Before we left the appointment he assured us that babies with SUA are born healthy all the time, in fact, he delivered over the weekend with a single artery umbilical cord, and that woman’s baby was perfectly fine.

Of course, nothing is 100%, and that’s the thought that had me in tears on the phone with my mom last night as I told her the worst that can happen to this precious child.

Nothing is 100% is all I could think as I tried not to sob while chopping the vegetables for our stir fry last night.

Nothing is 100% ebbed away at my glass half full for the rest of the evening, even when Nick hugged me and told me not to worry because everything will be okay and he needs me to be strong for him too.

Nothing is 100% slammed around in my mind when I poured my soggy chocolate chex down the drain this morning.

One week ago I sat down hardly believing that I could have a tiny baby before the milk in our fridge expires, and that’s still a very real and strange possibility. Today I’m eating my breakfast with excitement and worry over when she will be here, and I’m praying, too- for her, and Nick, and myself.

I’m not praying that Kinsley June is born ‘normal’ because she is already whatever she will be. I’m praying that when she comes I will be ready for whatever that is, no matter what the outcome looks like.

I hope you’ll pray for us too.