On
November 4, 2010 I came home from work and took a pregnancy test. I had one
under my bathroom sink because we had bought a few in the past. I look down and
it has that little plus sign. I was in shock! I couldn't believe it. Brandon
and I had been trying to get pregnant for 2 1/2 years and I am finally looking
at a test that was telling me it is finally happening! I called my sisters and
felt like it was a dream. This was something I was wanting for so long. I
decided to take another test because I was scared I was getting too excited and
it turns out to be a misreading or something. The second test came out
positive. I called my husband, since he was still at work, and he was ecstatic.
Brandon is such an amazing dad already with Halley but he definitely wanted a
child of his own. I quickly made an appointment with a new doctor’s office,
since the one I went to when I was pregnant with Halley was in Irving and I
didn't want to have to drive far from work if I had appointments mid-day. On
December 22, 2010 I had my first sonogram. It was amazing. I cried yet again, I
was crying all the time because I was so happy. I was so happy that things were
good. My pregnancy with Halley was extremely difficult being that I was only 14
when she was conceived. Anyways, that day was perfect. I remember walking into
the small room with Halley and Brandon and seeing our little baby on the
screen. The sonogram technician was so friendly and made us pictures with
captions saying "Hi mommy and daddy" and "Hi Halley".
Every
day we grew with more excitement. I was eating more, getting crankier, and
could hardly move because I wanted to be asleep or laying down every second I
could. I continued with my doctor appointments and finally she gave us the date
of the very important sonogram to find out the sex! March 9, 2011 was the day
we were waiting for. It couldn't come fast enough. I walked into the doctor's
office with Brandon, Halley, Ruth, and Utah (Brandon's parents). This was going
to be their 1st non-step-child and they were overjoyed. I really don't even
think I am using enough "happy" adjectives to describe our emotions.
Okay, we pile into the room and once again saw our baby on the screen. We saw
the heart, brain, cord, hands, feet, and then... Baby Girl :D. Another little
girl for me. I, of course, cried again and think I even saw Brandon wipe away a
few tears.< 3 We leave the doctor's office and Halley couldn't wait to go
shopping. We went to Babies R Us and picked out her crib bedding and a few
adorable summer outfits (I was due July 8th).
The
next day I went to work as normal. Then my phone rang and the screen showed it
was my doctor's office. It didn't seem too odd to me, so I answered. It was my
nurse. She told me that the sonogram tech was a little worried about our little
girl's legs. She said the doctor was shown the pictures and she wants me to see
a specialist the following week. They had already made the appointment. My
heart dropped, but the nurse said not to worry it may be something minor like
her having bowed legs, or it could be that she had a fracture or possibly her
legs stopped growing and that we wouldn't know until we met with the
specialist. Their equipment was like a Mercedes Benz to their Ford or something
like that was the analogy she used. I then cried and became frantic. My family
reassured me that it is probably nothing major and doctors usually just like to
take extra precautions.
On
March 21, 2011 Brandon and I walked into a perinatologist office, Dr. G. Little
did I know that walking into that office would haunt me for the rest of my
life. We were there for probably 3 hours. When we got into a room, a huge one
compared to the one at my doctors office, we were smiling and having a good
conversation. This time we had a male sonogram technician. He was nice. He
slowly went over her head, brain, and heart, counted her fingers, then moved
onto her legs and got quiet. And when I say quiet, I mean silent. He did not
say a word for the next 20 minutes that he was taking pictures. He then stood up
and told us the doctor would be in with us shortly. Well, about 45 minutes went
by and no doctor came in. I looked at Brandon and told him I knew something was
wrong, something just wasn't right. What was taking so long? I figured, okay
she is bow-legged, so what!? That is fixable. We sat there, well I laid, and
watched the light changing from under the door of people passing by until
finally we heard a knock. Dr. G. came with no smile, no "hi, how are
you". He came to me and said that he would like to take a quick look for
himself. So on goes more of that cold gel they use and he looks for maybe a
minute, if that, and then gets up and walks to a counter where he lays my file.
He then starts asking me if everything was okay with my 1st pregnancy. Finally,
he stops and sits down next to me, looks me straight in the eye and says
"Your daughter is going to die".
I
think I went into complete shock. I really just could not comprehend what he
had just said to me. He went on to say that our daughter had a lethal form of
dwarfism, Thanatophoric Dysplasia, in which she would most likely die before
birth, or in the process of me giving birth to her. He said there was nothing
we could do, and there was no need to run any more tests, but he will make a
follow up appt in 3 weeks. He gave us a minute to absorb it. I am positive he
must have been saying something else to me, but I could no longer hear.
Everything was a blur, and tears were pouring down my face. I remembered
sobbing in Brandon's arms and then the office assistants getting us out the
back door into the hallway so we wouldn't have to face all the happy pregnant
mothers in the front of the office. I honestly just could not understand. I
started calling and texting my family. They did not understand either. Some said
that Lauren was just small, that we have a lot of short people in our family,
the doctor must have been wrong. No one could wrap their heads around what the
doctor was telling me, it just could not be true. I remember coming home and
wailing into my husband's arms - Falling into them, crying so hard I could not
breathe. How could a doctor be so cold, so unhelpful, we are supposed to have
modern technology and advances in medical science, yet my child was going to
die and there was nothing I could do about it? I cried non-stop for hours. I
hid in my room from Halley so I would not upset her. I cried in the shower, in
the bed, watching TV, while eating. I stopped taking calls and checking my
phone, I couldn't do anything, my heart had been broken.
The
following day I was torturing myself by reading about the condition the doctor
advised me of online, and finally called and spoke to my nurse. I told her I
wanted a second opinion, I just couldn't give up that easily. I was told that
Dr. G had been in the medical field for many years, knows what he saw, and the
abnormalities were still there, even if I did not want to believe what I was
told, and they would not go away. I was also told that the 3 week follow up
appointment was set to see if Lauren would still be alive, because they assumed
she would not be; this was another horrible blow. But they still set me up with
another referral to another perinatologist. On March 23, 2011 I met with Dr. T.
At this appointment my in laws and one of my sisters were able to join Brandon
and I, so we would have support and they may be able to ask some questions
since Brandon and I were still in shock and devastation. It happened all over
again, another sonogram tech, another smiling face, and then silence. Dr. T
came into the office and spent more time examining me and Lauren himself, which
I was so grateful of. He told us that he does not believe Lauren had Thanatophoric
Dysplasia, but maybe Osteogenesis Imperfecta, in which Lauren has a chance at
survival but would have medical needs. He stated he would have to do some
research and would have to continue to monitor us. We left the doctor's office
with little hope, but decided we would stop buying baby items until we knew for
sure.
Then
on March 29, 2011 my Dr. T. thought it would be best to get an amniocentesis
done, even though I rejected at the very early weeks in my pregnancy, so we
could rule out a few things. I was so scared to have the procedure done, but
knew it was something we needed to know, we needed answers. The amnio reported
there were no chromosomal abnormalities. I got a call from Dr. T.'s office that
they wanted to send off the DNA to get a genetic testing done with John Hopkins
Hospital, the only problem, they do not work with my insurance, and the cost would
be $2,000. We just could not do it financially, and we did not want to ask
family for help with the costs. A friend suggested that some of our friends and
family would pull together and pitch in the money. It was so generous for
people to think like that, wanting to help us, and we felt loved, but they were
not able to tell us that any type of results or answered would be guaranteed,
they would not know until they see. Brandon and I discussed it for a long time,
but chose not to rally up money to get the tests completed. Dr. T.'s office
found an alternate solution; they found a company they could send the DNA to,
to get a small group of testing done for genetic mutations. They also send off
the fluid, some of my blood and other lab work to a company that was able to perform
a genetic analysis to test for 3 disorders. We received the results back with
great news. The mutations tested for from the DNA sample were Thanatophoric
Dysplasia - Type 1 and 2, Achondroplasia, and Hypochondroplasia. None of the
tested mutations were detected. There was a huge sigh of relief. I remember Dr.
T. was in high spirits as were we once we were told the results. Dr. T. had one
of his partners in the office that day and wanted him to have a look at me
himself too. After he looked and they had a brief talk, Dr. T. stated that he
no longer believed it was Osteogenesis Imperfecta after doing research, looking
at the changes over some time, the results from the testing, and consulting
with his partner, he now believed it was Kyphomelic Dysplasia, which is another
serious condition, but Lauren could survive. Dr. T. was very optimistic,
telling us that we were able to start buying baby necessities again, plan, and
get ready for our baby. Again we were happy, having issues we can fix were
something we could work with; we just wanted our daughter to live, and to be in
our arms.
Dr.
T. also wanted to send all of my lab work, DVDs of ultrasounds, and pictures of
Lauren over to International Skeletal Dysplasia Registry in California. They
would review everything for free and would be able to give us more information
on Lauren's condition. We agreed and it was sent off. We were also told Lauren
may come early, so we told our families and the start of planning the baby
shower was in full motion. At the end of April we got our maternity pictures
taken, which came out beautifully. Then on May 14, 2011 we had my baby shower.
It was a lot of fun, and we had gotten so many gifts. We even had Lauren's
nursery completely finished by then so we were able to have her room open, and
we could show all of our guests! We were scared, worried, stressing on the
outcome, but were confident in our baby girl.
I
continued to see both of my doctors every 2 weeks to check on my health and on
Lauren's. On May 31, 2011 we got some startling news from the International
Skeletal Dysplasia Registry, they wrote Dr. T. stating that Lauren did not have
Kyphomelic Dysplasia; she had Campomelic Dysplasia. This was another blow. They
letter was extremely cruel. They stated the following: "The Micrognathia,
shape of head, probable cervical/thoratic kyphoscoliosis, bent chevron bones
and the hypoplastic phalanges and club feet are very suggestive of this
diagnosis. The prognosis is very grim and while there are some long term
survivors, they do very poorly as a generalization. Thank you for allowing us
to be involved in this case, we are very sorry for the family." Yet again,
my heart was broken; I was so tired of the emotional roller coaster! One doctor’s
appointment we would come out smiling, and the next I was wiping tears.
Dr. T was very supportive as always. We continued
to check Lauren's growth and try to make a plan for when she was born. Despite
the prognosis that was given, we were told the biggest worry was if Lauren
would be able to breathe on her own. Her lungs were developing on track, but
because she had such a small chest, it would restrict her breathing. We toured
the NICU at the hospital I would be delivering at and met with the neonatologist
that would be caring for Lauren. Both of my doctors were continuously sending
the NICU updates on how Lauren and I were doing so they would be able to plan
for her as well. I was due July 8, 2011 but Dr. C thought we would plan for me
to get induced on July 1, 2011. However, that changed and based on the amount
of fluid I was retaining, that changed to June 24th. On June 15, 2011, I had
both of my weekly doctor appointments scheduled. I saw Dr. C 1st and then onto
Dr. T. When Dr. T measured Lauren’s growth, the thought her growth had slowed
in the last couple weeks but felt like that was a flag for concern and told me
that it was his recommendation to deliver earlier than the 24th. He stated he
would call Dr. C and I would get a call later to advise me of my new delivery
date. Lauren was breached for the last couple of weeks, so we were aware I
would be having a C-section, which we decided would be the best decision even
if she wasn't, so it would be less stress on her.
I didn't receive the call until the next morning;
I was told I would be delivering the following day, on June 17, 2011, at 37
weeks gestation. I remember being scared but so ready to see my baby girl. I
finally went back to the operation room around 6:00PM. I can remember crying as
I was lying there, being terrified and sick to my stomach. The room was filled
with people ready to care for me and those ready to care for Lauren. There was
a different neonatologist in the NICU that day, she came over and told me that
her and the team would do everything they can for Lauren. At 6:10PM she was
born. At first she wasn't crying, but soon she started - the sweetest sound a
mother could ever hear. Her cry was extremely soft but I was thankful I heard
it. She was 4lbs 11ozs, bigger than we expected, and was 13'4'' long. She was
immediately whisked away to the NICU. That night no one was allowed to see her,
not even Brandon. They were trying to get her situated and comfortable. We
could only call for updates. That night she was on 100% oxygen. The following
morning, she went down to like 50%. I wish I would have kept track of all the
numbers but at the time, it did not occur to me. June 18, 2011, family could
start to see Lauren. Still, I could only see pictures. She was so beautiful
though. Eventually I was up and walking around. The pain I was feeling was
worth it to me, so I was able to get to the NICU to spend time with her.
They were taking x-rays and monitoring her, but
they recommended us decide to move Lauren to one of two hospitals, where there
was a geneticist on site to assist us in her care. After speaking to family, we
chose Cook Children's in Ft. Worth. On June 20th The Teddy Bear Transport team
came to MCA and loaded her into the ambulance. We were confident that this was
the best decision. Each day there was several changes with her health. Her neonatologist
at Cooks had horrible bedside manner. I really didn't like him. I remember the
21st he brought us into a conference room and told Brandon, Halley, and I that
it was his recommendation that we put a Do Not Resuscitate order in, he figured
there would be no chance for survival. He was not the geneticist, she was out
on vacation until July 5th, so if he was not familiar with her condition, how
could he tell me that. He sobbed together, but chose not to complete that at
this time. We wanted to wait until we could speak to the geneticist to get more
information. There were several people that came in and out to talk to us,
examine Lauren, and tell us new and improving information. On June 24th I got
to experience changing her diaper for the first time, and later that night got
to hold her for the first and only time while she was alive.
Lauren was thriving, making great strides,
shocking the doctors and nurses that were caring for her. She got down to room
oxygen, but still was needing help with the machine. They were still giving her
x-rays, doing testing, and giving her medicine, but she was now able to eat all
the milk I was bringing in, and was more awake each day. Every time she heard
Brandon's voice she would open her eyes, peaking really, and would clench onto
our fingers. Each morning Halley went and read to her and it was amazing to see
the bond that was being created. We would talk to her, read to her, sing to
her, rub her, smile, and truly made the best that we could, despite the not so
good times. On June 30, 2011, Lauren's progress turned around, she went back on
more oxygen and needed more help with her machine. They couldn't figure out
why. They had to test her blood oxygen levels more frequently again. That
night, they told me that she needed more help, and by the next morning, they
may more her to an oscillator ventilator. On July 1st when we came, she was
indeed on one, and moved to another spot with more room since this vent was
bigger. That night we went home around 11pm.
My cell phone ringing at 4am woke Brandon and me
up. Instantly we were terrified. Brandon answered and told me to get ready; we
had to go to the hospital. I kept asking him to tell me what the hospital said.
He told me that just said there was a problem and we needed to get to the
hospital as soon as possible. We ran out the door, leaving Halley with my
step-dad and started to speed to the hospital. We called his parents and told
them something was wrong, we just didn't know what, and they were on their way
as well. Half way to the hospital our phone rang again. The hospital was
calling to see how far away we were, if we could get there any faster. Brandon
told them we were speeding, trying to get there as fast as possible. We drove
in silence, with just the sounds of me crying. Finally, we had arrived, running
through the hospital emergency entrance, since that was the only way to get in,
showing our wrist bands to the guards, up the elevator to the 2nd floor, and called
the NICU telling them we were there to see Lauren Autry. The doors opened, we
walked in, and there was nurses standing around. I remember walking as fast as
I could, briefly looking at them, around the corner, I did not wash up or put
on a robe, running to where Lauren's new location was. I saw group of nurses
huddled around her area, the horrible blue screen, and I just started crying,
and trying to get there faster. Suddenly, I was stopped. Her doctor was there,
and had grabbed my arms. He was trying to talk to me, but all I could do was
try to get to Lauren.
"I'm sorry, she is gone." That was all
I heard. I started crying even louder. I rushed over and the crowd of nurses
moved aside. In the rocking chair near her bed, the nurse that was watching her
that night, ironically named Lauren as well, was rocking Lauren in her arms,
and she was crying. As I walked to her, she stood, handed me my precious baby
girl, and told me that Lauren was doing so well that night, that it shocked her
that this happened. Lauren was dressed in a soft pink dress with a white
headband. She was free from her tubes and was so tiny and precious in my arms.
Brandon and I were crying, examining her tiny, perfect body, and passing our
daughter back and forth. His parents showed shortly after, and got to spend
time with us as well. The Chaplin came, prayed, spoke to us, and we also got to
speak to the doctor. He stated she had gotten a hole in her lung; they
attempted to pull out all the air, but were unsuccessful. Our daughter, Lauren Isabelle
Autry, passed away on July 2, 2011 at 4:16AM. She was 15 days old. The causes
of death listed on her death certificate was Congenital Skeletal Dysplasia of
Unclear Etiology. We would later learn that the International Skeletal
Dysplasia Registry confirmed her condition was Campomelic Dysplasia.
Planning her funeral was the most horrible
experience. We had no idea what we were doing. Choosing the best casket for
her, a beautiful area overlooking water and under her tree, choosing what she
would wear, it was all just too much. Needless to say, we were not sleeping,
hardly functioning, and constantly crying. Our hearts were broken into tiny
pieces and we had no idea on how to pick up the pieces. We held her funeral on
July 8, 2011. We had a 2 hour viewing before the service started. We had a
slideshow going of all the pictures we took of her, tons of flowers people
ordered for her were surrounding her, and the speaker even wrote a poem
specifically for her. We walked to her spot, a prayer was said, and we watched
them lower my baby girl into the ground and slowly cover her with dirt.
Sometimes, everything is a blur. After trying for
a baby for so long, this was something that we definitely did not expect. I
will always cherish the time she spent growing inside of me, and the 15 days we
got to spend with her. In our house we will continue to speak of her, remember
her, and love her. She has made our family stronger and taught us how strong
the bond of love is. Lauren is forever in our hearts and hope to continue to
grow our family with her memory strong in our hearts. I hope there is a day I
will get to see our precious daughter again; I cannot wait to hold her in my
arms again; I will never let her go.
