A Miracle Story Part 1

Miracle Renee Stevenson Cooper

July 7, 2012 ~ July 9, 2012

They've been on our hearts and minds, our friends Amanda and Micah. This week they'll remember their daughter, Miracle, who was born with a rare and fatal dwarfism two years ago tomorrow. They've been through the fire. Please read their story. Please remember them in your prayers this week. If you know this sweet family, please encourage them and love on them this week. If you don't know them, feel free to leave comments of encouragement and love below. 

Amanda and Alan were friends in college, then met me later when I transferred in. We've been through a lot in our friendship. Alan was there when Amanda went through ovarian cancer in college. We watched her go through chemo my last year of college and I remember being amazed during that time how strong she is. We've watched them battle infertility. They've watched us grieve the loss of our first pregnancy to miscarriage. But we never, ever thought we'd both be moms of preemies. Moms of rare disease kiddos. It's bonded us like glue. 

Sweet Miracle has touched our lives. Even though two years have passed, she is NOT forgotten. Her story is NOT forgotten. Here's their story...

{The following pictures and posts were taken from Amanda's website, 

www.themakingofafamily.com}

The beginning.

Friday, July 6th.

Micah and I received a text message from our birth mother (Rockele) saying that she was unsure about her decision.  Of course, I spent the entire day worrying. There were many tears. I know this is pretty normal with birth mothers, and we respected her decision no matter the outcome. Adoption is a huge decision.  We didn’t want her to feel pressured.  I cancelled my evening plans (my 10 year high school reunion), and Micah and I went out for dinner.  That night, I decided to run a 5k race the next morning with my good friend Mindy.  I originally was going to run it, but then with my high school reunion I wasn’t sure that I would be able to make it.  Ironically, the 5k race was a race to raise support to provide grants to adoptive families.  You can read more about that race here.

Saturday, July 7th.

I woke up around 5:30am. I remember getting up and prepping for the 5k race that I had planned to run with a friend the night before.  I wasn’t really wanting to go, but since I told Mindy I would be there, I didn’t want to back out.  I was so glad I went.  It cleared my thoughts about the adoption chaos from the day prior.  I even ran my fastest 5k yet! We stopped at the Ames farmers market (which I was highly unimpressed…..), and then were in the parking lot of our local co-op when we got “the call.” 

9:22am.  Rockele’s water broke, and she wanted us to come to Burlington!  We rushed home. As much as I wanted to just pack our bags and leave, I was pretty stinky from my race.  So, I showered, Micah packed all of the baby things we anticipated that we would need for the next 2 weeks or so. About 30 minutes after we arrived home, we again left. I have never gotten ready for a trip so fast in my entire life.  Our car was packed full with our suitcase, the baby’s suitcase, all of our adoption paperwork we would need, etc.  We began making phone calls to our closest friends and family, and our case worker.  Our excitement was off the charts.  Little did we know that the excitement we experienced would not last long.

Devastation

Saturday, July 7, 2012

Micah and I were making the drive to Burlington. It is a 3.5 hour drive, and on this particular day it seemed to last an eternity.  God was already at work and taking care of every need along the way. Our friends from church, Jason and Jen, happened to be in Burlington on Saturday. This was no coincidence.  Jen has been a huge help in this adoption. She has answered so many questions, prayed for us, and has been that shoulder for me to cry on when I needed it.

Just after we left our house, we got the call at 9:52am that our baby girl was born.  We didn’t know details about her condition, but we would later find out that she was already beating obstacles no one ever thought she would.  She was born at home, breech, at the hands of an inexperienced EMT. After Rockele’s water broke, there was not enough time to get to the hospital.  The birth happened very quickly.  We knew she was on oxygen, but we were thinking that might be normal.  She was technically a full-term  baby, but was 3 weeks early. {Side note: After doing some research, I found that most babies born with Miracle’s condition are breech, and therefore if they make it to term are born via c-section.  More on that later.}

I can still remember the exact location we were when Meisha called us.  She informed us that the doctors did not think that our daughter would make it through the night.  They had taken her off oxygen (another post), and were just waiting to see how long she would survive. I went numb. This could not be happening. I had so many questions, but none of them were answered. I was holding out so much hope that nothing was wrong and that there was just some miscommunication somewhere.  I was also hoping that if the doctors were somehow right, that we would make it to Burlington in time to meet our daughter.  Devastation set in.  I began making some more phone calls, and lots of crying in between.  I started to read my Bible and Micah and I prayed together as we drove.  Well, he prayed and I cried.

Our Miracle

Saturday, July 7, 2012

We arrived at the hospital shortly after 1:00pm.  I remember being so nervous walking into the room.  This was the moment we had been waiting for since 2008.  I know that we didn’t fully understand the diagnosis, but when we walked into that room, we became parents. For a few moments, it didn’t matter what the doctors said.  I believed, no matter what anyone else said, I was a mother for the first time. 

Before anyone placed Miracle into my arms, the first thing I did was give Rockele the biggest hug I think I’ve ever given anyone in my life.  I told her how much I loved her, and that there were so many people already that loved her sweet baby.

I remember when Miracle was placed in my arms for the first time.  I stared at her for what seemed like an eternity.  Time seemed to stand completely still.  This was our child.  Not just our child, but Rockele’s child too.  I will say this until the day I die, but Miracle was the biggest blessing of our lives.  The greatest gift we could ever receive.  She was our miracle.  And none of this would have happened without Rockele saying YES.

These photos are the first time we both held Miracle.

End of Day 1

For the remainder of Saturday, we all spent as much time with Miracle as we could.  We held her, fed her (though she ate very little), kissed her, spoke to her, rubbed her head (my favorite thing to do), and loved her.  Micah and I developed a very deep bond with our daughter.  One thing is certain, our daughter was shown an immense amount of love in her short life. 

We also had friends that came to visit Micah and I at the hospital.  Like I said earlier, it was no coincidence that our friends Jason and Jen were in Burlington on Saturday.  Just another way that God provided every need.  They came and talked with us and even more importantly, they prayed with us.  Jen was one of the people I was in constant contact with, and I could not thank her enough for just being there for me when my heart was completely broken.  Our Burlington friends/mentors Ron and Jane that came to talk with us (well, actually just me – Micah was busy being a daddy!).  Through these visits and other phone calls, text messages, and emails, Micah and I began to realize what a huge support system we had – even though we didn’t return all of the messages.

Saturday evening, Micah and I were able to spend some time with Rockele by ourselves.  The first thing that she said to us, blew me away.  She said, “Everyone keeps asking me how I am doing, but I want to know how you two are doing.”

Um, hello?!

She continued to talk to us about the adoption like there was nothing wrong with Miracle.  Like she was going to be fine.  I’ll admit, it was hard for me, because I felt like I knew what was going to happen in the back of my mind, even though I was trying to hold on to any hope I had.  She reassured us that we were Miracle’s parents, too.  This was just the beginning of the beautiful relationship we have developed with Rockele over the past 2 weeks.  We talked for a few hours while we all took turns loving on our daughter.  I will always treasure deeply the conversations I have had with Rockele.  And, as I am still learning more and more every day, she is an incredibly special person.

Around 11pm, Helena arrived from Chicago.  She missed the train, so she took a bus and Meisha picked her up in Iowa City Saturday night.  She remembered us from when we met her a few years ago – how crazy is that?!  I didn’t expect her to remember us, but she acted as if no time had passed.  She welcomed us with open arms.  I remember handing Miracle to Helena for the first time.  Oh, the tears!  Our Miracle was so loved.

I am grateful that we ended day 1 on a positive note, surrounded by family and so much love.  Little did we know the decisions we would need to make over the next 24 hours. 

A Second Opinion

I think I speak for most of us when we say that Saturday night was the first night of many when we did not get much sleep.  Micah and I arrived back at the hospital around 8am.  We spent more time with Miracle and the family.  It was truly amazing.  Sunday morning was the moment I realized that they saw us as their own family.  What an honor.  I remember us asking them if they wanted us with them at the hospital, and they looked at us like we were nuts!  They absolutely wanted us there – we were Miracle’s parents, too. 

Mid-morning on Sunday, the doctor came in to talk along with a few nurses and a social worker.  They talked about discharge and what would happen when Miracle went home.  Yes, they were fully expecting Rockele to take Miracle home.  They were going to send her home with an oxygen tank and provide some home health care.  Basically, a nurse would come by once or twice a day just to check vitals.  In our opinions, this did not sound like a good option.  They also informed us that once taken off oxygen, there was no chance for survival.  So, we discussed as a FAMILY (Rockele, Helena, Meisha, Micah and myself) what we wanted to do next.

We decided that we wanted a second opinion.  We wanted to make certain that there was nothing else that anyone could do.  We expressed this to the doctor and he said he would look into it.  We knew we couldn’t go out of state because of medical insurance.  So our options were going to be either Blank Children’s Hospital in Des Moines or University of Iowa Children’s Hospital in Iowa City.  The hospital had to be willing to take Miracle as a patient before we could go.  Ultimately, we went to Iowa City, because they were willing to take her as a patient. 

I will admit that I wasn’t sure I wanted to go to Iowa City. I think in my heart I knew that the outcome wasn’t going to be any different, and I felt like going to Iowa City was going to just prolong the pain I was starting to feel.

The University of Iowa sent their own team down to Burlington to take Miracle to Iowa City.  Because of her condition, they did not want to take her via helicopter, and Burlington did not have the technology to transport her to Iowa City.  When the transporters and nurses arrived in Burlington, they immediately started hooking up Miracle to lots of monitors.  This is when I realized that we made the absolute best decision for our daughter (and I still believe that to this day). And, for just a few moments Micah and I felt a glimmer of hope that maybe things weren’t going to turn out as bad as everyone thought.

University of Iowa Children’s Hospital

Once Miracle left for UICH, we helped Rockele with her discharge, ran a few errands, then headed to Iowa City.  We really had no idea how long we would be in Iowa City.  Micah and I gave Rockele and Helena a ride.  Rockele and Helena took naps on the way, and I mostly cried.  I was scared out of my mind. 

We arrived in Iowa City around 6pm, and Miracle was just getting into her room in the NICU Bay 2/3.  There are very strict rules surrounding the NICU which are primarily for the safety and protection of each infant.  When you enter the NICU, you have to call to let the receptionist know who you are so that they can let you in (the doors remain locked at all times). After you walk through the doors, you have to scrub your hands very very clean. First by washing, then by also using hand gel. This is to ensure the safety of all the babies.  We then went through the check-in process, which was overall pretty easy.  We had to fill out paperwork verifying that we were in good health and our relation to Miracle.  Once we did this the first time, we were set for the remainder of our time in the NICU.

That’s right – she was a Hawkeye!  Sorry Micah, I just had to say it!

Something worth mentioning: When we were in Burlington, Rockele had to verbally say that it was okay for us to be in the room and to hear any medical information when the doctor was in the room.  This was very impersonal.  Rockele (everyone, really) got very frustrated, and it felt like they didn’t really see us as Miracle’s parents.  We understood why they had to do this (because of privacy laws), but it seemed as though it could have been handled a little differently.  Especially once we went to UICH.  When we arrived in Iowa City, the environment was completely different.  Rockele informed the doctors and nurses that we were Miracle’s adoptive parents and that we could have any information at any time, whether or not she was present.  They did not ask any questions, but respected her wishes.  Once this was communicated (which was immediately after our arrival), Micah and I were treated as Miracle’s parents.

For the first several hours in Iowa City, we were not allowed to hold Miracle.  This was the only time in her life where she was not able to be held for an extended period of time.  Their primary focus when Miracle arrived in Iowa City was to stabilize her.  On the main monitor we were watching, there were 3 numbers.  Her heart rate (top), her oxygen saturation (middle), and her respiratory status (bottom).  Here is an example (please note this was not Miracle’s monitor!).

Miracle’s heart rate goal was between 120-160.  This is the top green line.  Miracle had a heart sticker on her chest that monitored her heart rate.  The white line in the middle is her oxygen saturation.  They wanted Miracle’s oxygen saturation to be at 100.  They did not want the oxygen saturation to read below 98.  Once it read below 90, the machine started to chime.  This meant she is not getting enough oxygen.  Miracle had a strap with a bright red light that was attached to her foot that monitored her oxygen saturation.  The bottom white line is Miracle’s respiratory status, which monitored her breathing.  There was a sensor on her tummy that measured movement.  If this this line is flat, that meant she was not breathing and then you would notice her oxygen saturation start to drop.  If that drops too, her heart rate will follow. 

When Miracle was in Burlington, her oxygen levels when she was off of oxygen were at 50.  This is why she was starting to show the first signs of death.  She started to lose her color dramatically.  Once we put her back on, she gained back her color and her oxygen levels improved.  However, they did not have her on a monitor.  A nurse would come and check her levels periodically. 

When we arrived in Iowa City, even though Miracle was on oxygen, her oxygen levels began to drop rapidly – she was in the 50-60 range.  As a result, they changed the oxygen she received to hi-flow.  This meant that she was receiving a higher amount of oxygen, and the speed at which the oxygen was flowing was higher than before as well. 

Another one of the first things they did was to take several x-rays of her chest cavity.  The reason for taking so many is because of the Thanatophoric Dysplasia.  Babies that are born with this type of dysplasia ultimately die from respiratory failure.  Their organs grown normally.  However, because of the extremely small chest cavity, the organs push up into where the lungs should be.  As a result, the lungs do not develop.  So, Miracle had some lung tissue, but not enough to sustain life.  They took x-rays every 30 minutes for the first several hours to monitor her progress.  Miracle’s first set of x-rays showed that there were air pockets in her chest cavity.  These air pockets were concerning for several reasons.  Unfortunately, with each set of x-rays, she did not show any improvement.  In fact, her conditioned worsened.

Because Miracle had such a difficult time breathing, she was unable to eat well. And, as a result she was not getting the nutrients she needed from formula.  She ate very little when we were in Burlington.  So UICH put in a feeding tube through her mouth to help her.  She was fed breast milk through Mother’s Milk Bank of Iowa to ensure she was getting the best nutrients possible.

Now that I have explained some of these details, I can go into what happened throughout the night on Sunday.  We were in for quite the rollercoaster.

Downhill

{Please note that it is taking me longer than I originally thought to write out the story of Miracle on this blog.  It is quite emotional for me, but I feel it is important for my own healing and so that I don’t forget any part of this journey.}

Sunday evening around 11pm, Miracle was not showing any improvement – in fact, her condition was worsening very quickly.  Her oxygen saturation  was only between 50-60.  This was even after they changed her to hi-flow and increased the speed at which the oxygen was flowing.  They also put in a g-tube (which goes up into the nose) instead of just having nasal cannula (which goes under the nose and has 2 prongs).  She was struggling, and was getting tired of struggling. We knew it.  The nurses told us that they could call a chaplain if we wanted, because they didn’t know that Miracle was going to make it much longer.  Rockele decided she wanted to have Miracle baptized, so we called the pediatric chaplain that was on duty.  The chaplain (Noelle)  was very kind and baptized Miracle in a very unique way.  She used very small shells, one for each of us, and after the baptism she gave us each a shell to keep.  The nurses took photos of the baptism for us to keep as well. 

None of us were prepared to lose Miracle that evening, and I think she somehow knew this.  That night, we all stayed with Miracle and did not leave her side.  They ended up moving her to a twin NICU room so that we could have more room.  The NICU rooms are very small and traditionally can only hold one or two adults.  Moving us to a twin room allowed the nurses to put a cot out for Rockele’s two sons to sleep, and allowed them to put in 3 larger chairs that reclined. 

It was quite the emotional night.  When we first found out that Miracle might not make it through the night, I completely lost it.  I was so angry and hurt.  Why would God take this child that I have waited so long for away from me?  The nurses in the NICU were nothing short of amazing.  They cried with me and consoled me (as much as they could).  I couldn’t believe it, but it meant the world to me knowing how much they cared. One of the nurses was from my hometown and I remember telling her how I don’t know how she works in the NICU, how it must be so hard, etc.  She told me (as she was crying too!) that they usually don’t see things like this and most of the babies end up going home.  After she was baptized and they moved rooms, they finally allowed us to hold Miracle.  Several hours later, her oxygen saturation started going up into the normal range. 

This was me holding Miracle for the first time after we arrived in Iowa City.  It’s not a great picture, but I like looking at it for some strange reason.  I remember that night holding Miracle for as long as I could, but sobbing while I held her.  I knew that our time was incredibly limited, and my heart was breaking into a million pieces.

At that time (5am?), Micah and I decided we would go up into the NICU family lounge and attempt to get a little sleep.  The family room is a place for families to stay when they don’t want to be far from their babies.  It is just upstairs from the NICU.  There are couches, lounging chairs, tv’s, computers, and even a large bathroom with a shower(!!!). This became our home away from home in Iowa City.  Micah and I slept for maybe an hour or two before getting up, showering and going back down to see our Miracle.

We knew that on Monday morning the doctors were going to do their rounds and that we were going to meet with the geneticist.  We also knew that we were going to have to make a decision that no parent should ever have to make.