Miracle Story #21 (Part 2 of 4)

Kelley:

“Dr. George pulled down the drape and goes, “Is that baby crying?”

And Dr. DeHart responded, “That baby is crying.”

Dr. Stephanie Binder, our neonatologist, announced the APGAR.

“What?!”

“The APGAR’s are 8, 9 and 9.”

“On a 24-weeker, you’re telling me her APGAR’s are 8, 9, and 9?”

And Dr. Binder replied, “She’s proven it and I’ve got to give it to her.”

With normal term babies, an APGAR of 10 is perfect.

And you never see that.

We don’t ever give a perfect 10.

So 9, 9, and 9 is a standard “normal” for a 39-weeker.

Usually for someone of her gestation, you would probably see maybe a 6 at 1-minute. And then once they get intubated you might see a 7-8, because they’re intubated.

But for her to be 8, 9, and 9 was amazing.

We found out later on that she was the talk for the next 3 days in the resident lounge, the anesthesia lounge, and the attending lounge because it had just never been heard of.

They asked Jeremy “Do you want to come and see her?”

He looked at me and I said, “Go see her.”

“Okay.”

“Take pictures. I don’t think they’re gonna bring her over to me.”

He went over and he saw her.

But then they brought her over to me.”

Jeremy:

“When I saw her I was like, “What does a 24-weeker look like?”

I didn’t know what to expect.

All of the worst was going through my mind.

I looked down at her and she was like the size of a little Barbie doll.

She was 12 inches long.

She had this thick black hair all over the place.

Her eyes weren’t open yet.

I could see all of her toes and all of her fingers. But they were so small.

Holy smokes...

Her skin was so thin.

It was like looking at something through tissue paper.

You could see all of the little muscles and veins.

She was breathing on her own at that point.

And it is something I never want to see again.

There are probably only a handful of people who have ever seen that.

I was like, “That is amazing.”

And then they wheeled her over to Kelley.”

Kelley:

“So they let me kiss her.

And then they told me, “Okay Kelley, we have to take her back.”

“Okay.”

“Dad you can come with us if you want to.”

Jeremy looked at me and I said, “I’ll be okay. I want you to go with her.”

So he went back to the NICU and I was in the OR for probably an additional hour, because I ended up having tears in the top of my cervix and then also tears inside my uterus that they had to repair.

They ended up calling a placental abruption, which means the placenta had begun to tear away from the uterus.

That is why I kept contracting, because it was irritating the uterus with that placenta tearing away.

There is high risk criteria for placental abruption and I didn’t meet any of the criteria.

So we have no known reason why it ever occurred.

I’ve had two really healthy babies.

We had that early testing done.

I did prenatal care.

There was just no reason why.

As an LDR nurse…the NICU doors are like…you don’t ever go past them. They’re like Voodoo. (laughs)

So here I was heading in there.

They wheeled me in the cart.

Jeremy’s family is from Kingman and so he called his mom. She drove up from Kingman.

I got wheeled back into my room, and my parents were in there.

And his mom was in there.

He showed me some pictures of Ashtyn.

And they got me settled.

They’re allowed to wheel you into the NICU.

They have four teams, and they’re kind of bays.

When you first go into the NICU, there’s Team 1.

And she was all the way in the back.

She was in Team 4.

At the time, they called that the micro-preemie one. Team 4 was micro-preemie because that same day there were twins that were born early that morning.

One was bigger than Ashtyn and one was smaller than Ashtyn.

And I think there was one other one that was little.

They don’t generally put certain gestations in 4, but it just worked out that she was over in that unit.

But it was nice because, for her gestation, they need it quiet.

Inside the womb it is really muffled, nice and quiet, and they need decreased stimulation.

Especially for brain growth.

We were allowed to get into the isolette with her every two to three hours.

Our first job was to do diaper changes with her.

And they looked like maxi pads.

The first time with one, they never strapped it, because this diaper came up to her collarbone and up to her back.

That’s how big it was on her.

They also did a humidity isolette with her for the first three days, because of her skin.

And when I first went to see her I wasn’t able to stay in the NICU for very long, because of the hormone changes and things.

I got really hot and sick.

It was just too much.

Also, because she was a micro-preemie, they worried about brain bleeds.

So she was on a protocol that kept the head of her bed elevated.

When we did a diaper change, we could barely elevate her feet, because you don’t want the elevation to be too high for the blood for her head.

We had to watch it.

She was on a protocol that was over so many days before she could finally be flat.

We had to watch the lifting of her legs.

And they used some greasy stuff on her, to protect her fragile, thin skin.

She couldn't have Chloroprep anymore because it actually burned off her skin when they were starting IV’s and central lines.

Instead of alcohol, it sterilizes the area.

But it’s a chemical and with her, it was burning off her skin.

So we were using that greasy stuff to put on her skin and pretty much treating her like a burn victim.

We called our priest at St. Jude.

And he came up to see her.

He asked me if I wanted her emergency baptized.

I just told him I wanted her blessed.

I think I was superstitious that if I got her baptized that I’d be giving up.

I thought, ‘You emergency baptize someone when you think they’re going to die. My child is not going to die, and so no, I want her blessed.’

My mindset wasn’t there.

She ended up having to have a central line since it burned the skin.

They had a physician come and put the line in her chest.

And on that day, I ended up calling the girls’ school.

I talked to Ms. Donna. She is an amazing secretary at the school.

“Okay Ms. Donna, this is probably the weirdest request you have ever had, but on the intercom, I need you to stop all the children and I need them to pray. I need them to pray for Ashtyn.” (crying)

And so she did.

She got on the intercom.

Madyson later said, “Mom it was the weirdest thing. Ms. Donna got on and she told us, “Kelley, Madyson and Kayla’s mom called and she needs all of you to pray.” (crying)

So they all prayed for Ashtyn during her surgery. (crying)

My cousin lives in Derby and she’s a part of a prayer group.

I called her, and I was like, “Okay, you’re the closest person to God I know, because you have all of these prayer groups. Please pray for her.”

If only I would have known that this was the beginning of our journey…I would have been calling all of these people every day. (laughing)

But that was the biggest one.

She had that central line.

Oh that was hard.

They put in too big of a tube and her skin was so thin, you could actually read the number on the tube in her chest.

Through her skin.

This surgeon was a part of a surgeon group. He wasn’t employed by Wesley. They were called the LOCUM group.

Every two weeks that group would change, so I didn’t even know anything about him.

I didn’t know if he was good.

He came in and he was like “I thought it might be too big.”

Oh my gosh.

She was really tiny.

She was only 1lb 5oz.

And I remember thinking, ‘She’s a water bottle, and here you’re telling me you thought the tube was too big…and yet you still put it in...’ We were kind of frustrated then.

It was at that time that we met Lorie.

Lorie is the most amazing person I have ever met.

She is an amazing nurse.

She is one of those people where you are like…why didn’t I meet you sooner?

She was a Bishop Carroll graduate.

I would have never known her, because she is a baby compared to my age. (laughing)

She and her husband are huge KU fans.

They named their two boys after actual KU players.

So we were like, “Ooh we like you!” (laughs)

If you fall in love with a nurse at Wesley, you can request that they primary your baby.

So with Ashtyn being a 24-weeker, we knew we were going to be there for a long time.

And we fell in love with Lorie.

We just got along with her really well.

The first night that we had her, Jeremy had let me do all of the care for Ashtyn.

He knew it was important to me.

When you’re a mom, that’s what you’re supposed to do.

Lorie goes, “Okay Kelley, you took the temperature. Jeremy, you get to change her diaper.”

Ashtyn had pooped, and he goes, “Oh no no no, this is important to Kelley.”

“No, you’re her dad and you’re going to change her diaper. And I’m going to help you.”

So I was at the end of the isolette and taking the pictures.

And Lorie was on one side of the isolette with her hand in there, and she was helping Jeremy.

And I thought, ‘Lady you are a rock star. Because anybody who can get him to do something that he does not want to do, is amazing.’ (laughing)

So we asked Lorie if she would be our primary nurse.

But she was very resistant at first.

She had only primaried one other baby.

At that time, he was four. He was the same age as her oldest son.

He had been a 24-weeker, and his name was Kingston.

And he is doing amazing.

But she finally said, “After going through his journey, I didn’t know if I’d ever primary again. But I don’t feel like I’m cheating on him, because he’s a boy and she’s a girl.”

“Okay, we want you.”

Being her primary nurse would mean that every time Lorie worked, she would automatically have Ashtyn.

We just needed to let the charge nurse know, and anyone who made the schedule would know that she would always have Ashtyn.

If Ashtyn was having a really rough day and needed to be one-on-one with a nurse, then Lorie would be one-on-one with her.

Or if Ashtyn was having a really good day as a NICU baby, then Lorie could have two patients.

But Lorie would always have her.

The nice piece to that was that the weekends that I had my girls were also Lorie’s weekend to work.

So it kind of took some of the stress off.

I knew I could go to Madyson’s soccer games because I knew Lorie was with her.

Or I could sleep through the night.

The nurses were all really good.

You’re always going to have that person that you don’t mesh well with.

And we did have those.

I don’t think at Wesley I ever had one where I was like, “Oh I don’t want you back.”

I think I had those hormonal moments where I called the nurse and said, “I’m driving there. I’m coming so that I can get in with her.”

And the nurse had told me, “Oh, well I went ahead and did my shift assessment and already got in with her.”

“Why did you do that? I only get to touch her every three hours. Why did you do that?”

I think it was a new nurse.

It wasn’t in her mindset that that’s where our mindset was.

But she didn’t do it viciously.

I was hormonal, but we never had any issues.

I had a book.

This was how nurse neurotic I was...

Every day I wrote in this book.

I wrote who her day shift nurse was, and who her night shift nurse was. Who her RT was, what her vent settings were, what her feedings were…

I think in my mind it was so that I could write it down.

I think the nurse in me had to have that game plan.

I’d hear the NICU nurses say over and over, “Well mom is a labor and delivery nurse.”

And I’d say, “But I take care of well babies. I don’t take care of these babies. I don’t know your vital signs. I don’t do vents. I don’t do CPAP. I don’t do ventilation. You have to treat me like I’m a NICU mom, because I don’t know those things.”

Even if you’re an LDR nurse having a baby, when you’re in labor, you’re the patient.

Your brain goes out the window.

They told us it was going to be a NICU roller coaster.

“You’re going to have really, really good days. And with a 24-weeker, the first week is going to be great. And you’re going to think, ‘I don’t know what these people are talking about. It’s going to be amazing. She’s going to be fine. Everything's going to go good.’ “

And it was.

We had a really good first week.

She did really good.

She did great on her vent.

We couldn’t do any skin to skin, because she had to do the humidity isolette.

And we had to do the elevation with her head.

But everything looked really good.

I think it’s because initially they have the reserve and they fight, fight, fight.

But then they peter themselves out.”

Jeremy:

“They call it the honeymoon stage, the week after they’re born.

She’d breathe on her own, not having the vents breathing for her.

And we’d sit there and watch her, and she’d just be breathing away. She did need it but I’d find myself thinking at times that she didn’t.

And then after a while she’d just get tired.

So that’s when we’d see the machine numbers getting turned up, her oxygen levels going down.

And that’s when the roller coaster would start.”

Kelley:

“That’s what they called it, they called it the honeymoon phase.

At first they were very blunt with us.

Dr. Binder was our neonatologist in the OR. She actually went on vacation.

Usually the doc you have at your delivery is the doc that admits your baby. That’s the one that stays with your plan, with your care.

You’ll have different nurse practitioners and different nurses, unless you have a primary nurse.

But you always have the same neonatologist.

Since she went on vacation, we ended up having Dr. Dorn as the neonatologist that started doing the care for Ashtyn.

So I asked Dr. Dorn, “Can we go ahead and change to you as the admitting physician? Nothing against Dr. Binder, but she has been on vacation and we’ve formed a relationship with you, and a plan with you.”

And he was fine with that.

From the very get go, that was in our plan.

He became her neonatologist, and he was very blunt with us.

He told us, “This will make or break your relationship. I have seen a lot of NICU parents start out strong together and by the time their kid discharges, they’re not together anymore. It is very hard. There are going to be days where you are going to hate each other, and it is okay. You are just going through so much and it is stressful.”

He was very blunt with us, which we needed.

I think that you need it when you are in that high stress situation.

Especially for us, we were going through this honeymoon phase where everything was going good.

You don’t want to hear anything else.

I was still in the hospital with her, and the nurses I worked with were like, “What are you going to do when you go home, Kelley?”

And I kept telling them, “I’m not going to talk about that. I’m still in the hospital. When I leave the NICU, I’m just going up to my room. I’m not going to talk about going home.”

Jeremy had already experienced going home.

But I didn’t want to discuss that.

I was in a lot of denial at that point.

I had her on Thursday, and they let me stay until Monday as a patient and have a room.

So I just kept putting it off and putting it off.

One of the moments that Jeremy and I kind of looked back on, one of the moments that I really think that God sent us an angel, was the day that I did get discharged.

We were with Ashtyn all day and I was trying to mentally prepare myself that I wasn’t going home with a baby.

We had this cart, and it had baby stuff on it.

We has this gift basket that said, “Congratulations.”

We had balloons that said, “It’s a girl.”

We were wheeling it out, and it was right at shift change.

I was running into some of the postpartum nurses that were coming on shift right as we are leaving Wesley.

One of the girls asked, “How’s Ashtyn doing?”

And we had said something, and were kind of getting teary, and so she continued on her way.

But then this lady stopped us and she had this girl with her that was fourteen.

And she goes, “Did you say you have a 24-weeker?”

And so at that point Jeremy and I were bawling.

“Yes.”

“My daughter is a 24-weeker. It’s a long road, but you guys will get through it.”

We just looked at her and started crying even more.

Her poor 14 year old.

She was just standing there like, ‘Geez mom, butt out of these people's lives.’ (laughing)

I think God sent her to us.

I think that got us out the door.

We needed to hear that.

To this day I wish I would have gotten that lady’s name. I’d love to show her a picture of Ashtyn now.

We made it.

That was it, that was all she said.

“You will make it. It will be okay.”

We walked out and we got in the car.

I looked at Jeremy.

“I needed that.”

We got home.

And Jeremy started ripping walls out of our bathroom.

I sat there with the TV off and folded laundry for three hours.

Bawling.

That was my way to cope.

And his way to cope was to remodel our bathroom.

We didn’t have our baby.

And that was the start of the roller coaster....”

(To be continued…Part 2 of 4)

Copyright © 2017 by One Million Miracles. All Rights Reserved.

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We are Jeremy and Kelley, and we live in Wichita, Kansas. In the midst of our daughter being born at 24 weeks, we are Miracle Story #21.