Tara's Story
Wow!
I thought, when I found out I was pregnant with this
little bundle of joy. So I started going to the
doctor and my doctor was concerned about me not being
able to gain weight with Tara. Well 2 months later
I was fine with the weight gain. No problems came about
except for one. Tara kicked me so hard that I
was doubled over, she ended up bruising my abdomen.
I had all the ultra sounds done and nothing ever came
about except for her being small, but the doctors were
not worried. So life continues with the regular
doctor appointments with no worries.
Well here comes the 23rd of
October. I'm sick with the flu (so much fun).
Well after being sick all day with the vomiting and
the rest of the things that go along with the flu, finally
at about 6:00pm I'm feeling much better and relaxed
(finally over the symptoms of the flu). I was
getting ready for bed (brushing teeth going potty),
then I had to go potty again(11:00pm), this time my
water broke. I called the hospital and gave them
all the information. They said that since Tara
is my first baby I didn't know if it was my water that
broke (they thought that I was crazy or something)
So before I went to the hospital (not feeling any contractions)
I took a shower to relax a bit, packed my bag to go
to the hospital. So they checked me and sure enough
I was not crazy, I was right! 1 Week early for Tara
to be born. So they get me ready to have her and
they are charting away. They were watching my
vitals all night long. Well things were not going
the way they were suppose to and I ended up getting
Pitocin (1:00 pm October 24th ) to make my contractions
harder and make things move. I could not take
the pain and had an epidural. Wow that was much
nicer. The nurse did not come in to check me when
she was suppose to due to friends and family being there.
By the time the nurse came in to check me I had already
called and then they came in. Tara was crowning
already!!!! Finally here she comes my wonderful
bundle of joy. I could not wait for Tara to be
here. She came into the world at 6:04 pm on the
24th day of October. She was 18 1/2 inches long
and weighing 5 lbs 6 oz. Born at Oconomowoc Hospital
in Wisconsin. It was nice for me but then turned to
be the worst. Since every parent expects to have
a baby born with no problems what so ever. Well
the cord was wrapped around Tara's neck 2 times and
she was blue. How scary!!!! They doctors
tried to be quiet but I was more concentrated on Tara
then they wanted me to. Tara had to be "bagged"
since she was not breathing. Her heart rate was
dropping. They had doctors and nurses rush in
and get her heart rate back up and get her breathing
to "normal". She pulled through!!! Thank
God!! Tara spent 2 days at Oconomowoc Hospital
(they had to make sure she was going to be stable enough
to be transferred) Oconomowoc knew that there
was something wrong with Tara because of her cry but
they could not put their finger on it, Tara also failed
her hearing tests they tested her 2 times. Then
they transferred her to Waukesha Hospital where she
was in the NICU for 2 weeks and 2 days.
Week 1 at Waukesha NICU Tara
ended up have a PIC line in her arm, IV, a suction tube
to clear out the stomach and Oxygen. She was hooked
up to the monitor the whole time. She had lipids
(liquefied fat) and sugar water for the first week.
Tara was not able to hold her body heat and needed more
then just the open bed while being hooked up so they
had to put her in an incubator. There she was
able to get better. Tara was born with pneumonia.
So that made things even worse. Tara also did
not have a good suck at all, so breast feeding was out
of the question. Waukesha also tested her hearing
and she failed that one 2 times. Tara had multiple blood
tests done to check for everything possible. At
this time the nurses and doctors took me into a private
room to explain what was going on with Tara and what
she has. They told me that she has a very rare
syndrome called CRI DU CHAT syndrome. They then
had me on the phone with the geneticist from Children's
Hospital. She explained a bit of it and then they
wanted me to come down and get tested to see if I was
a carrier of this rare syndrome. They told me
not to look on the internet for information since it
was so bad and harsh (they didn't think I was going
to be able to handle it). They told me that Tara
will not walk, talk, hear, eat normally, grow the right
way, she would have so many things going against her.
They also told me that Tara would most likely not make
it through childhood. Tara and I would be lucky
if she made it to her 5th birthday. Then they
had the guts to ask me if I wanted to "pull the
plug" (stop everything for Tara and let her pass)
I was so made and I cried and cried. Week
1 went by (seemed forever).
Wow what kind of news is this
to a first time parent at the age of 20? Shocking?
Freighting? How would you have handled it? The
way I did? Yes I cried! I was scared, but more
determined to find out more about it. Well this
news just made me more determined to help Tara and get
through this. So I had scheduled an emergency
baptism, called my pastor before the church service
and told him he had to rush up to the hospital and Baptize
Tara because of the situation. He did. So Pastor
Schroeder rushed up to the hospital and baptized Tara.
I had asked the church members to pray for Tara and
to ask God to help her through this hard time in her
life. Ok so Tara got baptized so at least that
was taken care of. Now just to get everything
else taken care of (ways and things needed to take care
of her to the best I can .)
Week 2 at the NICU in Waukesha
Wisconsin. Tara was still in the incubator and they
were slowly decreasing the oxygen and they were gavage
feeding her. They put a tiny tube down her throat every
time it was ready to eat (every 2 hours) and they were
trying to get her to suck at the same time. By
Wednesday Tara was sucking and drinking out of a Haybermann
bottle (special bottle for babies that have a weak suck).
Tara was able to hold her body heat out of the incubator
, off the oxygen, PIC line, and IV by Tuesday
the 7th of November. The only thing that Tara
was still hooked up to was the monitor for her pulse,
BP, and oxygen. The 9th day of November I was
finally able to bring her home (This day finally came.)
Grandpa Kaun and I (Mom) brought Tara home.
I went to the genetics clinc
and got tested they had me come into the office for
family history and to give me the results of the blood
test. How do you think it came out? Tara
was diagnosed to have "colic" (colic is marked
by chronic irritability and crying.) I took her
to the doctor and the ER at least 2-3 times a week trying
to find out what is wrong. The doctors (in the
ER and her regular doc) said nothing that they can see
is wrong with her. So her regular doc switched
her formula allot to see if she was allergic or have
bad gas from what she was on. Tara went through
every formula that was out there. Her doc even
paid for most of it since it was so expensive, well
that wasn't it either. So then(6 months later)
we finally got referred to Children's hospital in Milwaukee
Wisconsin. There she was sent to see and ENT and
a GI. The ENT found out that she has Acid Reflux
problems badly. At this point Tara would hardly eat
anymore since it hurt. So now she was put on Pepcid
suspension to help with the acid reflux problem.
Then the GI sent her to have a swallow study done (1
year later) and come to find out she has been aspirating,
when I found that out it finally clicked that was the
reason why she hardly wanted to eat. It would take her
forever to eat 8 oz of formula. That was it!
That was the problem. So on the 25th of
July 2002 she went in to get a g-tube in. She
stayed in the hospital for 3 days. Wow, what a
difference that made!!
Tara is now not considered
a colicky baby. She is still having problems with
the acid reflux problems and "freed" from
the aspiration problems. The whole time all this
was going on Tara was also going to the Birth to Three
program, to receive the therapies PT, OT, and ST.
Tara made great gains in this program along with me
working with her at home. Then she went into the
Early Childhood program through the school and now she
is doing wonderful.
Tara never gave up and I never
have or will give up on her. Yes it came out that
I do carry it, but I don't have a translocation.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.
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