How it all began...when I wrote this I was just starting this unknown journey...it is very raw...but I think an important story to remember...for the new mother that just found out...maybe just maybe she (you) can find something to connect with in my story...
August 17, 2008 we went to Rapid City SD to Reptile Gardens. Our 2
year old son is a fanatic about everything nature! My husband and I
discussed throughout out the day/year about having another child. I just
could not believe how perfect Max is, so beautiful, so smart, so funny,
such a huge personality. When we got home there was a perfect ending to
our day. We put our perfect son to bed and well one thing lead to
another and a baby was conceived. I knew immediately I was pregnant. I
knew we were ready; I had prepared my body I stopped taking the pill a
year and half before, I was taking folic
acid, I was exercising regularly, I was eating as much hormone free
foods as possible, I limited all caffeine and never drank alcohol. So I
bought an economy sized pregnancy test pack and began testing; the test
was POSITIVE! Of course I am one of these people that has to take
multiple tests to be sure all 15 were positive! I was pregnant with
another perfect person and I was so excited but very scared
more scared then my first pregnancy. I told my husband that we were
pregnant and he hugged and kissed me with love, joy and excitement! We
choose not to tell anyone without confirmation from the doctor. I made
my appointment with the doctor and it was official I was pregnant. At 8
weeks pregnant I had my first ultra sound. I remember the doctor saying
this is a strong heart beat you have nothing to worry about. I hung on
to those words for months how strong the heart was beating. I went in
for normal check ups and everything was normal no sick, no worries, just
anticipating the babies first movements.
It was time
for a routine 5 month ultra sound it was in January 2009 and we decided
to take our 3 year old to meet his new sibling. It was an experience! He
stole the show with his comments and enthusiasm he had everyone in the
room laughing. We did not want to know the sex of the baby we loved the
surprise. At the end the doctor lightly mentioned that she did not see a
stomach bubble and would like to do another ultra sound in a month.
Both my husband and I did not think much about this. I mentioned this to
friends and they reassured me that if she is looking in a month it must
be nothing to worry about. I did no research during this time which is
unlike me but I just did not think it was a big deal. The ultra sound
day came February 17, 2009 I told my husband not to come that it was
nothing and that there was no worries besides I was feeling the baby
move and it was very reassuring. In the waiting room I remember getting
really excited that they had a 3-D ultra sound machine I really wanted
those pictures. I joked with the nurse then the doctor and laughed at my
son and how much of a personality my son is. As I lay on the table we
went through all the anatomy of the baby her assuring me things looked
good and the doctor got quiet and she changed her tone and her
conversation to me. She started frantically going to the heart, to the
brain, measuring the bones and talking in medical terminology. I froze
and I knew then something was wrong with my perfect baby. I tried to
hide the tears and be strong but it was impossible. All I remember about
her comments are no stomach bubble, Tracheal Esophageal Fistula (TEF) and Esophageal Atresia (EA), Down's
Syndrome and when is it good for you to go to Denver to see
specialists. As I cried she hugged me, the nurse hugged me and the
office people could not look me in the eye. It was the worst day, the
saddest day so I thought. I called my husband and I was a mess I could
not get to the Internet
fast enough to learn about everything that was just being said me. I
could not believe that my little baby was going to be possibly born
without an attached Esophagus. How would she eat or how will she
survive. My husband called the doctor to get more details and she
assured him like she did me that the risk for Down's Syndrome is very
low and that we needed to see the specialists to see about the TEF/EA that this is a very rare occurrence 1 in 4,000 live births. So we made the appointment for the following week.
We
went to Denver as a family during this time I could not let go of my 3
year old son it was like I had to keep him close to protect him from
what was growing inside me. On February 21, 2009 we saw the specialist
and still there was no bubble in the stomach. Then the doctor said to us
he would like to do an amniocentesis to rule out Down’s syndrome. He
only gave us a 20 percent chance of having a Down’s syndrome child. I
was reeling I could not believe what was going on it was like I detached
that day from the baby growing inside me. The doctor said we will see
you in a month to be drained of amniotic fluid because the baby could
not swallow he explained that I would fill up with amniotic fluid
dangerous levels that could put me in to preterm labor this is
technically called polyhydraimnios.
Again I did not realize the challenge with the baby not being able to
swallow there own pee how huge I would get, how uncomfortable I was
looking 9 months pregnant and I was about 28 weeks. Also, during our
next visit we were to visit with the pediatric surgeon.
On February 23, 2009 2:10 pm it was confirmed I was carrying a child with trisomy
21; Down’s syndrome and asked if I would like to terminate the
pregnancy. 92% of child diagnosed with Down’s syndrome are terminated.
All I could do was ask if the baby was a boy or a girl I needed to know
this information. It was girl he said. I threw myself on the ground I
was hysterical and alone how was I going to tell my husband this
terrible news. The moment I stopped touching my belly I wanted nothing
more to do with this pregnancy or this baby. My husband got home from
work and I told him the news. I cried so hard I thought I was dying. I
think something in me that day did die I buried the notion that I was
having a perfect child a perfect little girl. I could not picture this
baby as a little girl; a baby I pictured her as a teenager or an adult. I
grieved that I was never going to plan a wedding with my little girl,
that I could never relate to her emotionally or socially, that she would
never be the little girl that I expected or wanted. I did not want this
thing growing inside me. I hated her. I hated myself for feeling this
way. I could not believe my own reaction to the diagnoses. I thought I
was stronger then this, better then this, I thought I was open minded a
free spirit that I was up to anything. I am a glass half full
personality. Then I turned my grief to my son; what had I done to him
how and why does he have to live with a special needs person and have
attention always going to his sister instead of to him. To be referred
to as the boy that has the Down’s syndrome sister. I was just sad and
there was no going back.
I did think about terminating
this pregnancy I thought long and hard about this. It was crazy how I
did not think my husband should really have an opinion on this topic. I
really thought that this was my decision to make and solely mine. As it
got harder to make this decision of course I wanted his feedback I was
sure he would say lets get rid of this baby it is just too much for all
of us. To my surprise and dismay my husband was fine with this news. He
took about 24 hours and then bounced back and could not wait for the
challenge of this little girl he was excited. During this time the
little girl growing inside me was very active. I mean she was so active I
felt like she was beating me up, she was actually hurting me she was
already feisty! I realized that she was speaking to me she was trying to
tell me that I am alive and you are MY MOM so either rise up to the
challenge or get the fuck out of my way because I am coming no matter
what.
All the while I was sick of people telling me that it would
be fine, that she was coming to special parents, or the “right parents”
you see I am a daycare provider and my husband is a teacher. I guess
that meant that we were up to this challenge. I beg to differ on this.
Everyone just kept on saying Down’s syndrome children are nice and sweet
and always happy. Like that was supposed to make me feel better that
she would be living with me forever. I even had people say well at least
your child is alive and not dead or that you did not loose her in
miscarriage. Really that is the best they can do I hated all those
comments. The worst comment was probably when a lady who I did not know
said congratulations on having a child with Down’s syndrome. I came
unglued with this comment it was one of the most insensitive comments I
have ever heard. I remember discussing the hard decision of if I should
continue with the pregnancy and my friend being revolted by notion of
abortion. She actually said you would never do that; that is awful I
told her not to comment on this until she was pregnant and had the news
that she was having a Down’s syndrome baby. For a month at least I was
in a deep depression and angry about the situation that I had put my
family in. I refused all help and refused to have a baby shower. The
results from the amino and blood work confirmed that my husband and I
were at no greater risk to produce a Down’s syndrome child than any
other couple at our age. When I went to the doctor I wanted to tell
every pregnant person in the waiting room that they had no worries on
having a Down’s syndrome child because I was the statistic 1 in 733.
I
went in to preterm labor at 30 weeks it sucked they gave me shots and
was put on medicine to stop the contractions. The medicine made me
thirsty, nausea, and very shaky and will be on them for the duration of
the pregnancy. But in the hospital that night I realized how much I
wanted my baby that this was my little girl. I remember screaming at the
nurse that if she shoves that thing up my vagina much further and
ruptures my water my baby will die so to get another nurse. That was the
first time since hearing all the news that I referred to her as my
baby, my little girl. I wanted her and I wanted her to live. That day I
touch my belly and started to massage her and love her like she was
mine. She is mine and her name is Maddox (Maddie) Rose and she is my
perfect little girl.
I read about all things Down’s
syndrome and saw I was completely wrong on all my views and assumptions
of children with Down’s syndrome. In the meantime we went to Denver for
our second visit I was drained of amniotic fluid 2 liters. It hurt but
it felt good afterward I was as big a 37 week pregnant person instead of
being just 30 weeks. We also met with the pediatric surgeon. She is a
young aspiring surgeon only 5 years experience pretty new but has great
doctors to learn and mentor from in her practice and will be only
assisting on the surgery. Tracheal Esophageal Fistula (TEF) and Esophageal Atresia (EA) was explained to us and did not sound as daunting as everything I had read on the internet.
She said if this is the only this wrong with our little girl she will
have a smooth recovery. She explained how the surgery would be done with
a scope, that only 2 places in the United States perform this surgery
with a scope. We feel very confident with our little girl’s surgeons. Of
course we are hoping for a TEF Fistula (obstruction) instead of a full EA Atresia (Open gap between stomach and esophagus). The hardest part of the TEF/EA is the unknown of what she has fully until she is born. She will have a series of test done a VACTERL which stands for V-vertebral, A-anal imperforate, C-cardiac, T-teteflea, R-renal (kidney), L-limb to determine everything that needs to be fixed. TEF/EA will be determined by a simple x-ray. Then she will have surgery within the first few days of life to hopefully correct the TEF/EA.
She will suffer from severe indigestion or acid reflux for most of her
life that will be helped with medication. With Down’s syndrome children a
heart defect is a big concern we are hoping for the best, her heart has
always been strong. A huge thing for me was she may not have a butt
hole. I know this is crazy but I was freaked out about this. The doctor
explained this is a simple surgery and has a very good success rate.
Some
good and surprising news is that I will be able to breast feed with a
pump and after surgery hopefully I will get her to latch on. After that
visit with all the doctors it was four hours later and we were ready to
go home. Both of us were encouraged with the news of little Maddie and
that she was gaining weight and as perfect as could be! Of course there
was a snow storm in March that stuck us in Cheyenne for another 24
hours. It was par for the course!
I did not realize
after that trip to Denver my life would be filled with Doctors visits. I
see the doctor 2 times a week for an ultra sound and NST
non-stress tests. By now I am sick of ultra sounds and the pictures
that come with them. I do have to admit the 3-D and 4-D ultrasounds rock
and I have seen my little girl and she is the most beautiful little
girl I have ever seen.
I knew I had gotten full of fluid again the
contractions were coming stronger and more often. The Doctor told me I
had to be drained within 7 days! So off I went to Denver to get drained.
And another April snow storm! They took 2 more liters off me. This time
it hurt and I was tired; very tired and sore. There was not much relief
and I was contracting pretty hard and consistently after the procedure.
Again I got shots to stop the contractions. But there was the best news
of all! My little Maddie had a partial bubble in her tummy. Something
we have never seen before. I can not tell you the joy and excitement; it
is the best bubble I have ever seen. It still means she has TEF/EA but at least there is hope for TEF.
During this visit she was tested for lung development of course it was
not good news. We have gotten used to this. She scored a 31 she needed
to be above a 55. The doctors assured me that this is miner and that she
will most likely just need a ventilator.
I am
continually monitored twice a week but there is an end in sight I will
deliver May 13, 2009 in Denver. I am so excited and nervous and scared shitless!
I finally bought her a blanket and some clothes. I prepared her bed and
have a car seat. I am ready for her and I am up to the challenge of
being her mom. I have specialists coming in once a week to work with her
until she is 3 years old, then she will attend their preschool and then
she will be placed in main stream public school. I know that early
intervention is best for child with Down’s syndrome. I am doing
everything I can to make sure she has the best. I will continue my in
home day care for her stimulation and development.
I am
at a good place emotionally however; I have good and bad days and then
really bad days! I have experienced people’s ignorance and prejudice
towards my child and she is not even here yet. I know I need to remember
you cannot fix stupid and that is what we are if we do not try to
understand the unknown of being a parent of a child with Down’s
syndrome.
Trip to Denver
It is time to go to Denver and have
Maddox I have packed for the family and myself knowing I have forgotten
almost everything! We arrive to drop Maximus off at his Aunt’s and his Grandma will assist in taking care of the great Maximus
while we are in the hospital. Naturally things are not going as I have
planned Chad is working most of the day and I am overly nervous! We
arrive in Cheyenne to drop off Max. We are
not in a good frame of mind and we are as nervous as we have ever been.
It is the first time we are leaving Max over night and he will stay for 6
days an eternity in Max time! We stop in Loveland
for our last meal and all we can do is talk about our kids and what the
future may bring. We stay in a hotel that I cannot remember the name
of. That morning I shower I do not recall much of anything
else but walking down to the lobby for Chad to get some breakfast and
watching the people go by and thinking that they have no idea what is
going on in my life or with the life I hold inside me.
Birth
Finally
we arrive at the hospital Chad is having a hard time with knowing in 2
short hours he will see his wife cut open again and have a baby that may
or may not survive. We are joking around trying to keep it light and
not on topic of what is lying before us. Soon the nurse gets me hooked
up to monitors and doctors start coming to explain the days events and
what will be happening. Before I know it I am walking to a “sterile”
hospital surgery room. Finally we get to the room and I am lying there
butt naked from the chest down. The anesthesiologist starts injecting me
and I was becoming numb from the toes to the chest. Even my nipples
were erect and numb it was a very strange feeling. Dr. Perrecco
makes his entrance and tells the nurse to prep me again he was not
impressed with how she had done the prepping. They did and I knew he was
in charge and everything was going to be ok
and I was not going to die! Soon the room filled with doctors and
nurses and everyone introduced themselves including Maddox doctor. Her
name was Dr. Lawrence the most important person I thought in the room
and I would not forget her face. Soon I was cut open and Dr. Perrecco says he sees a gush of black hair then Maddox swims up towards my chest and Dr. Perrecco has to push her down and out! She came out screaming and pissed. Dr. Perrecco
said “are you sure this is a baby with Downs? She has great muscle
tone”. And with that they performed some tests on her in the delivery
room to the right of me. I can remember Chad looking at me and saying it
is EA I just cried I thought she really could die. I prepared myself
for this but I always held out the hope that she would survive. Dr.
Lawrence brought Maddox over to see me; I was able to hold her for about
one minute. She was so beautiful I could not get over her black hair it
was almost overwhelming. I noticed right away that she was frothing at
the mouth; I looked at Dr. Lawrence and said she has TEF to. And with that Dr. Lawrence and her team took her away to begin the VACTRAL.
Diagnosis
As
I was recovering Chad was with Maddox going through some of the tests. I
kept asking the nurse if she had seen Chad or if she heard anything
about my baby. She new nothing and she actually started getting
concerned about what was going on. She took me to my recovery room and
went off to see if she could find someone who new something about
Maddox. My dad came up to be there for me and he was a life saver; he
was there when I entered the recovery room and for Maddox
surgery. When the nurse found Chad he was ready to be away from doctors
poking and prodding his little girl. He confirmed that she had an (ASD)
a 5 mm hole in her heart but that it was nothing to worry about that it
was the good hole. He said that everyone is born with an ASD
and that in most people it closes with time. He said that Maddox was
crying hard and that would help close that hole. This was the best news
yet that we were getting answers that we were wondering about for months
with in a couple of hours of her being here. Dr. Shippman
and Maddox’s anesthesiologist came busting into my room. I mean she was
running! She said “why did you not call me! I was clear across town
when I got the news I was doing the surgery!” Mind you this is 4 hours
after Maddox was born. They had determined no heart surgery was needed
and that they would repair the EA/TEF with a scope. I think that this was Dr. Shippmans
first repair alone and she was crazy excited! The anesthesiologist drew
pictures on how they would repair the EA which is the gap in the
esophagus; we still did not know how big it was but we new we would have
all the answers with in a couple of hours. This was relieving in a
weird way. 4 hours after Maddox was born she endured her first surgery
and 3 hours after that she was “fixed”. Maddox had a 2 cm gap in her
esophagus (EA) and a fistula between her esophagus and her trachea (TEF). Dr. Shippman
entered the room looking tired and proud of herself; she told us the
great news and what we could expect for the next 5 days. Maddox was not
to eat and could not be picked up. She would be sustained by fluids.
They would take her blood everyday to check what carbs, proteins, fats, etc. needed to be supplemented for her to thrive.
Maddox's Recovery
Finally,
the nurse came in to my room and said I could go see Maddox I remember
it was dark out I was so excited and scared. I had to brace myself for
all her tubes and what she would look like. Chad wheeled me down to the NICU.
It was a crazy place to be in I never thought I would be there. I never
could have imagined what it looked like the sounds, the smells, the
nurses and doctors and the babies the sick babies everywhere. Chad and I
got our badges to enter the NICU
and made our way back to the last room on the left room number 4. There
she was Maddox Rose was lying there with nothing but a diaper, a hat
and tubes everywhere. The floor 3 NICU
is a very loud place something I did not expect; there is always bells
and buzzers going off. You soon and very quickly learn what all the
sounds mean. But besides that there was my little girl she was so
beautiful, she was so cute, I loved her. All me and Chad could do was
look at her. We were not to touch her. We could talk to her but that was
it. It is very unnatural for parents not to touch there baby. We
learned very quickly that the nurses would answer most of question on
how to care for our baby. Most of the nurses were amazing and talented
they were teachers. But there was a few nurses that were challenged with working with parents one NICU
nurse said to me “don’t worry you do not have to touch your child to
bond with her” I can say I was visualizing that I was beating the shit
out of her. The next morning 6:00 am my catheter was removed and I was
instructed to start walking I walked straight to the NICU
to see Maddox I could not get there fast enough. My next 3 days was
learning about Maddox and what challenges lie ahead. The staff at the
hospital were incredible there were people to help with breast feeding,
social security
benefits, and how we were going to pay for all of this! They even gave
massages to women in the hospital it was great. I cannot explain the incredible feeling of helplessness you feel when your child is in the NICU. There are doctors and nurses that think there way to do things is the only way. Literally
depending on the nurse it will depend on how your baby is swaddled to
how they are fed. Some nurses encourage you to breastfeed some bottle
feed or even if you should be involved in the care times. Care times are
the feeding, changing diapers and taking your babies temperature.
But no matter what no one could have prepared me for leaving the
hospital with out her. This was the worst day! I cried the entire time
we where checking into the Ronald McDonald House. Chad had to fill out
the paper work and move us in. I was helpless. That night I just new I
had to buck up and get over myself! I also new Maximus would be joining us and I needed to get things together for him. That Monday was a big day Maddox had her swallow test to see if the surgery was done perfect and if there were any leaks in the esophagus and if she would have to re due the surgery. Maximus
was coming to join us at the Ronald McDonald House I could not wait to
see him. By 3:00 pm Monday and 6 days after she was born we were told
she had a perfect fix and now she needed to heal. 5 minutes later Maximus
came running off the elevator and he looked like he had aged a year! He
was no longer my baby he was my big boy with the best smile! Maximus is truly beautiful I missed him so much. A routine soon followed Chad would take Max to play dates all over Denver
and I would visit Maddox. We would always come back together for dinner
at the Ronald McDonald house. I can not explain how cool the Ronald
McDonald house is; it child centered and made us feel so welcome. It
truly saved us financially. By Wednesday only one week after she was born she graduated to the 7th floor NICU this was the NICU
that babies are released from the hospital to go home! One by one all
of the tubes were taken out. Pretty soon she was the only baby in the NICU that had no tubes. I got to stay the night with her in the hospital it was amazing and very exciting. I did not sleep a wink! On day 13 I received a call from the NICU
that they needed milk I rushed it over and the nurse told me we were going
to be released from the hospital. We were going home! I called Chad and
he began cleaning the room and packing. Maddox had to go through a
series of things to be released including a car seat check. She had to
sit in her car seat for 4 hours to see if she would survive! she did!
we were told that she would have to go home on oxygen and not to stop in
Cheyenne. It was finally time the room was cleaned and we checked out;
we went to the hospital to pick up our baby! The funniest thing happened
when Maddox was released from the hospital Max was playing with some
kiddos in the waiting room; I said "Max come meet your sister" and he
said "no he was playing"! Then he looked over and saw her in the car
seat he came running over and "said is this my sister; I love her"! It
was amazing! He then looked at Chad and said "can we team work her".
Which means can they do it together! So Chad and Max carried the car
seat with Maddie to the car. The next morning Max woke up and asked do I
still have my sister! YES!!
