Miracle Story #21 (Part 3 of 4)

Kelley:

“When I was on postpartum leave I was up at the hospital all day long. And on the days that I had my other two, I was home with them at night after they got out of school.

I had to know what the NICU nurses looked like at night, so Jeremy had the night shift.

He would go up at night and he would meet the night shift nurse.

And he would describe her to me, so I could write her in my book.

So I would know if she would be a good person or not.

I knew that they were all good people. (laughing)

But I just had to have that visual of them...green eyes, or a wart.

Things like that.

We did that for about three weeks.

And then Lorie called me at three in the morning one night.

“Kelley, Ashtyn is sick.”

“What do you mean she is sick?”

“She is needing more oxygen, and we’re going to go ahead and do a septic workup.”

“Okay.”

I had previously told Lorie, “I don’t care what’s going on with her at any time of the day, I will be so mad at you if you don’t call me. I want to be called with whatever is going on with her.”

So she had respected my wishes to call me at three in the morning.

And I was up pumping every three hours anyways.

I looked at Jeremy.

“What’s going on?”

“I have to go. I have to be up there.”

They did lab work on her.

I think they did a chest x-ray.

There is a valve in your heart called the PDA valve, and in normal babies, it will close after delivery.

If it doesn’t, or if it closes partially, you’ll hear them say something like, “I have a heart murmur, or I have a slight murmur that I’m watching.”

It sounds like a whooshing sound, because you can hear that blood going through the valve.

On a 24-weeker it’s not natural for that valve to close, because they shouldn’t be born.

So they give them a medicine called Indomethacin for three days, to close it.

Ashtyn’s valve had been closed, but when she got possible sepsis, they had to give her more oxygen and that opened that valve back up.

But the problem is that after they are three days old, they can’t give them the Indomethacin anymore.

So at that point, she was going to have to have surgery to close that valve.

At that time, Wesley did not have a surgeon available to do that surgery.

The surgeon from the LOCUM Group that was on for Wesley at the time, did not do PDA ligations.

A PDA ligation is where they go into that valve in the heart and put a clip on it.

Dr. Steven Allen is a neocardiologist that they consult in. I had been in a meeting and when I came off the elevator, he was standing there at the elevator waiting for me with Dr. Bloom.

Dr. Bloom is the head neonatologist of the NICU.

“It’s not good, is it?” I asked.

“No Kelley, the valve is open and we are going to Life Watch her to Children’s Mercy in Kansas City.”

The reason why it had become so imminent that they had to transport her was because when they would suction her, they were starting to get blood return.

Which means that blood was starting to go into her lungs on account of that valve being open.”

Jeremy:

“She was going to drown in her own blood.”

Kelley:

“The other issue was her needing more oxygen.

They had put her on another kind of ventilator called an oscillator.

An oscillator is a ventilator, but it is one that vibrates. And it has a really obnoxious sound.

Instead of breathing in and out for them, it gives small puffs of air, so that it is constantly keeping the lungs open.

It’s less harsh on the lungs, which was important because of her premature lungs.

So this required a certain type of flight team to come.

Because they had to make sure that they would have that ventilator on board.

I had originally decided that I was going to go back to work at six weeks.

But at this point I called Dr. DeHart’s office and said, “You’ve got to put me back on maternity leave. I’ve got to get on a plane and Life Watch with her.”

Because they told me we could go with her.

So the next morning, we Life Watched up to Children’s Mercy in Kansas City.

I went in my work clothes, because I knew that if I worked for 4 hours, that I could get paid for a shift.

I was on salary and that was one less day that I would have to use PTO.

I felt sorry for the poor girl that I worked with, that we had just hired like three weeks before, because I was in the middle of training her.

So we went up to Children’s Mercy.

Dr. Obrien was the cardio surgeon and Delores was his nurse practitioner.

It was funny because she said, “Dr. Allen has my personal cell phone number and I don’t know how the man got it, but he only calls it for people he likes. Now I don’t know who you are, but he called me and said you guys were coming.”

Again, small world.

The son of one of my attending OB docs had to have surgery when he was a baby.

By Dr. Obrien.

So his wife had messaged me on Facebook and was like, “Dr. Obrien was our surgeon and he is wonderful. We stayed up at Children’s Mercy. If you need to know where to go, text me.”

She was amazing, to reach out like that.

And it was so nice to know because it was foreign to me.

Here, if someone needs to know an OB or a cardiologist, at least I know someone to be able to ask.

Up there, I didn’t know anybody.

So to know somebody that had experienced surgery by him, was nice.”

Jeremy:

“When she had her heart surgery, that was the first time I had ever seen her outside of her glass box.

They had put her on a regular adult sized table, and her whole body fit where an adult head would be on the table.”

Kelley:

“They did it on day two or three when we got there, because they had to get her stabilized first.

So we had to wait.

They put her on the table and she was so tiny.

I reached down and I kissed her and he goes, “You can’t kiss her!”

“Oh you just stop me from kissing my baby. This is the first time I’ve seen her out of her isolette.”

Jeremy:

“You get into a routine in the NICU in Wichita. And then all of a sudden, you’re flown up to Kansas City and you don’t know anyone.

None of the doctors.

None of the nurses.

So you have a whole new world.

Dr. Obrien was going to do her heart surgery, and so he came in and he explained everything.

"This is the clip. We’re going to put it on her heart. She’s going to be just fine.”

He showed us where he was going to put it. Right between her ribs, because she was so small.

And everything went good.

But after that…”

Kelley:

“You’d never even know. (uncovers Ashtyn’s chest area)

There is where they put a drain, and then just a line.

He did amazing.

She was 26 weeks at that point.

And that was her only scar.

Jeremy:

“We were supposed to fly back.

Dr. Bloom told me that when we got up there, we were going to have to fight for her to get back, because Children’s Mercy Kansas City thinks they’re the top grade hospital, and that Wesley is a lower grade.

So they want to keep them there.

And insurance wants to keep them there too.”

Kelley:

“He was like, “You tell them every day that you want to go home.”

Jeremy:

“So we got up there, and after the heart surgery everything went great.

Perfect.

And we could tell they weren’t used to her respirator or her ventilator numbers, or what to do for her lungs.

That was when that book that Kelley kept the numbers in…you could kind of chart off of that....

This is happening...then this is happening…things like that.”

Kelley:

“It was just a different world up there.

One of our favorite things up there ended up being that we met other families as well.

I did rely on other moms that were living up there also.

Jeremy had gone back to Wichita.

And I lived up there for 28 days.

I stayed at the Ronald McDonald House.

We met Tara and Dave.

Their little girl had heart surgery when she was up there.

We met Jen, and her little boy was born with Down Syndrome.

They didn’t know ahead of time.

The babies were all about the same age.

Jen lived up there and so one night, she took Tara and I out for tacos.

It was just something to get away from the hospital.

One of the moms, Summer, had been Life Watched with her baby two weeks before.

She was from McPherson, Kansas.

And my mom had been born and raised in McPherson.

Summer and I made a pact that when our kids were out of the NICU, that we would meet up again and take them to their very first pumpkin patch together.

And we did.

We met up in October and we took the kids to the pumpkin patch.

You just form those bonds.

No one really understands what you go through, unless they have gone through it themselves.

The generosity of people was amazing.

There is a cinnamon roll shop up there that serves these huge cinnamon rolls.

I think it’s called Mama’s Cinnamon Roll Shop.

These cinnamon rolls were bigger than your head.

I think that if you went and bought these down in Crown Center, they would cost $10 a piece.

They were huge.

A lady would bring them up to the PICU and NICU once a week.

And she would bring a huge platter for the parents and put them in the break room.

Quick Trip fully stocked the fridge for the NICU and PICU parents.

Ronald McDonald House was amazing.

They gave us like, play monopoly money, that we got if we kept our room clean and if we picked up and helped out around the house.

We’d get this $5 voucher.

They had this room that had new donated items like games, cards, lotions, eye makeup remover, and stuff like that.

We could use our $5 vouchers to get stuff.

It was Valentine's Day around that time, so I had bought the girls some games for Valentine’s Day.

I ended up running out of PTO and I had to go back to work in Wichita.

Ashtyn had been on a medication and it was medication that we don’t use down here at Wesley.

I kept asking them.

We were going to have to wean her completely off of that medicine.

So we finally did wean her off of it, and we had gotten the okay from Coventry to transfer home.

But then on the day of transfer, they blew her IV.

They had given her blood and they didn’t give her Lasix, which increased her respirations and her oxygen needs.

The blown IV…re-sticking her...it was just like nothing was going right.

I said goodbye to everybody.

I wrote thank you notes.

I had said my peace with Children’s Mercy.

We were done. We we leaving.

I had even packed my bags.

Summer had a car up there and I had given her my luggage and told her that whenever her son was discharged that she could just drop my luggage off in Wichita, on the way to McPherson.

I didn’t care about any of it.

We were going home.

We got into the ambulance.

The ambulance that they put us in was like a semi-truck.

They put me in the front and they had Ashtyn in the back.

The Children’s Mercy flight team consists of an EMS driver, an RT, and a nurse.

They take you to the airport, and then you have two pilots.

But those three people get on the plane with you.

That was the way it was when we went up there, as well.

So we got to the airport and I got out of the ambulance.

I was waiting for Ashtyn, but she didn’t come out.

The pilot goes, “Do you want to go ahead and get in the plane?”

“It’s okay, something is not right. She should be getting out.”

“No, no, no, it’s okay.”

I was just thinking that I really needed to get back there.

The back of the ambulance doors opened and the RT motioned for me to go back.

I got in the back and Ashtyn was already at 100% oxygen.

All the way up.

And her saturations were going down.

She was agitated because of how rough the ride was from that big ambulance, and she had become too unstable to get on to the airplane to transport back to Wesley.

I was devastated.

“We are here. What are we supposed to do?”

“We have to go back to Children’s Mercy. We want you to get in the back with us and put your hands on her.”

So I put my hands on her, to try to calm her down.

When we got back to the hospital the whole team was around us.

They were resuscitating her.

I was just bawling.

And I kept saying, “I just want to go home. I just want go home. I just want go home.”

I hadn’t seen my kids.

Madyson, my one that I’m so close with, had been calling me every day, bawling.

She wanted mommy to come home.

She was getting ready to do her First Communion and her First Reconciliation and she said, “Please don’t miss that mommy. Please don’t miss that.”

The nurse had the audacity in the middle of this to tell me, “Well maybe you should just go home for the weekend.”

“I want Ashtyn and I to go home. Not me. I want us to go home.”

I texted Jeremy.

“We’re not coming home.”

It was Valentine's Day that weekend.

I called my mom in tears.

“I just want to see my kids and I just want to go home.”

Just bawling.

And my mom was like, “Well, you ruined the surprise.”

“What?”

“Well I ripped the kids out of school and we’re coming up there.”

So she had pulled the girls out of school.

“You need it. And they need it. You all just need each other.”

They wouldn’t let the girls see Ashtyn, which was different because at Wesley, they had seen her.

And that was very hard for them.

They were like, “We’re here. Why can’t we go in there?”

They just had a different protocol.

I think it was that anybody under the age of 14 or 15 could not go in.

That was hard too.

Because again, I hadn’t seen my kids in three weeks.

But I also have a baby.

How am I supposed to balance my time?

I was supposed to still be nursing her, but my kids were also there now, for two or three days.

Ronald McDonald was great.

That weekend they hosted a bunch of events for Valentine’s Day.

I got to do some scrap-booking with them.

And on Sunday we knew I had to go home, because Madyson had her First Reconciliation.

And I had promised her I would be there.

I knew I had to go back to work on Monday also, because I didn’t have any more time off.

This isn’t the way it is supposed to be…

I was at a point where I felt like when you pray for things, that things are supposed to happen.

But so many things had started happening that were wrong.

And I started to get angry with God.

I thought...

‘Okay, I didn’t get to have my April baby.

I know it sounds so stupid.

I didn’t get to have my baby shower.

I didn’t get to have my delivery with him.

This was supposed to be our kid together.

Now I'm three and a half hours away from my kids, and I don’t get to transport my baby home.

And now you are making me leave my baby three and a half hours away, because you wouldn’t let me bring her home.'

Over the 28 days we were up there, there were some kids that never saw their parents.

Babies that we never saw a parent for.

I cannot imagine.

While up there, my schedule was literally like this…

I woke up and I was at her bedside at 8 am.

I sat there through morning rounds with my notebook.

I wrote down the whole plan.

If the nurse of the day didn’t know the questions in rounds, I opened my notebook and I was actively participating in the questions.

Or I would go back and go, “No, we already did this on this day.”

At 11:30 I would go eat lunch.

Come back.

Sit with her until 6:00 pm.

Go back to the house.

They always made a meal back at the house.

I would eat, take a nap, and then go back.

And I would be there until midnight or 12:30 am.

Then the security guards at Children’s Mercy would drive us back to the Ronald McDonald house at night.

In that neighborhood, they would not let you walk back.

Which I wouldn’t have walked back anyways.

So at this time, I was pretty angry.

I found out the names of the nurses for the next day.

The game plan was that Monday through Friday, I wouldn’t be there, but I would call.

On Friday, as soon as I got off of work, we’d leave and head up to Kansas City.

And we’d be there Friday, Saturday, and Sunday and then drive back every Sunday night.

As long as it would take to get her back home...

Up there, they switch neonatologists every week.

Once you had a game plan going, then you’d get a new neonatologist.

The neonatologist told us, “Our game plan is to get her home. I know we had a failed attempt. We have to get her growing a little more and then we’re going to send her home.”

So we made it home on Sunday, and Madyson had her reconciliation.

I felt like an accomplished parent.

We walked into the church, sat down.

Her dad is not Catholic and doesn’t actively participate in things like that.

For her to see us there…the smile on her face…

Today something right is happening.

I called that night to talk to the night shift nurse, and Ashtyn’s labs were off.

“Can I talk to the nurse practitioner?”

I just wanted a game plan.

And they told me that she would have to call me back.

At 1:30 in the morning she still hadn’t called me back.

So I called again.

I started asking her questions and she was like, “Well I just didn’t know about…”

And she couldn’t answer my questions.

Okay lady, I’m three and half hours away. It’s not like I’m down the block like I was before…

I started feeling really uncomfortable at that point.

And I starting having anxiety.

On Monday morning I called my mom in tears.

I was upset.

Jeremy drove me to work that morning.

They’ve done a lot of remodeling in the women’s building at Wesley.

That morning I got to work and the pipe above my office had burst, and flooded my keyboard.

I couldn’t even work until 1:00 pm because they had to get me a new keyboard, and I had been locked out of the system since I had been gone for a while.

I was just sitting there thinking, ‘Really? I could be up at Children’s Mercy right now...’

Monday night I called again, and it was the same thing.

This is just not going good.

I called my mom again, upset.

“Where are you, mom?”

“We’re sitting next to Ashtyn.”

“What are you talking about?”

“I couldn’t take it anymore. Kelley, your dad and I are retired. We don’t know anything about what’s going on with her, but maybe it helps that we are sitting here. So you know what? We don’t qualify for Ronald McDonald, but we got a hotel room and we’ll be up here every day until she discharges. So Monday through Friday, we’ll be here. And Friday, Saturday, Sunday, you’ll be here. At least they know we’re here.”

“Are you serious?”

“Yes. You cried all night long and your dad and I couldn’t take it.”

I’m their only child.

“Okay.”

I was so relieved that they were there.

At least they knew that we were invested in Ashtyn.

The next day when Jeremy was driving me to work, he said, “You have all of these doctors that you know. Why don’t you talk to Dr. Bloom, who’s the head of the neonatology department in Wichita, and tell him your concerns with what’s going on with Ashtyn.”

“Okay.”

So I went in to work and I paged him.

“Why don’t you just come down to my office and talk to me?”

He’s a big guy.

I think he’s kind of intimidating at first glance.

So I went down with my little notebook, and I went up to him and said, “Okay Dr. Bloom, this is what’s going on with Ashtyn. Her O2 sats are this...I’m worried about how they’re managing her vent settings. And I just don’t like how many chest x-rays…”

I was just going over all of this stuff.

He just sat back and he goes, “They do hearts really well. But you know what? We do lungs even better. They fixed her heart. It’s time for her to come home so we can fix her lungs. With your permission, I’m going to call and talk to the doctor, and I’m going to ask that she come home.”

“Okay.”

I went back up to my office, and I was just sitting there.

And the neonatologist from Children’s Mercy called me.

“Hi Mrs. Webert, how are you doing today?”

“Well to tell you the truth, I’m not doing very good.”

“What’s wrong?”

“I’m just not very confident in your care. Maybe it’s because I’m not there. We had great heart surgery and everything, but I work at Wesley, and this is where I want my baby. I want to know that while I’m working she is downstairs, and that if I have questions, I’m right here. I can drive 20 minutes to go be with her. It’s just causing a lot of anxiety.”

“I completely understand that. I’ve already called Coventry and they’ve okayed the transfer. Ashtyn is going to Life Watch tomorrow. And they’ve okayed it for your mom to Life Watch with her.”

“Are you serious?”

“Yes. I got it all coordinated before I called you. The coordination team will be in touch.” The next call I got was from this nurse, actually the nurse that was on our failed attempt to come back.

The one that was in the ambulance.

“Kelley, I’m the coordinator for Ashtyn’s trip home. I’m going to call you tomorrow and we’re going to get her home.”

I called Jeremy.

And I called mom.

So the next day, all I could think about at work was, ‘They’re going to bring my baby home. They’re going to bring my baby home.’

The nurse called me and she said, “Okay, what can I do for you”

“You can tell me when she is in the air.” (crying)

“What?”

“I know you won’t turn around once she is in the air. You’ll turn around if she is at the airport. But you won’t turn around if she is in the air.”

“Okay.”

They got to the ambulance.

They got to the airport.

And then I got the call.

“She is in the air.”

(To be continued…Part 3 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.