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"All of
these children have something very unique and beautiful to offer the
people who are lucky enough to have them grace their lives. God makes no
mistakes; we are all perfect in His eyes."
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Our names are Matt, Michelle and Lillian Monaghan. Our journey began
Wednesday, February 21, 2007 at 10:00am. We had a meeting with a genetic
counselor, genetic doctor, neonatoligist and a NICU social worker. There
they diagnosed our daughter, Lillian with Mosaic Trisomy 13.
Wait, lets rewind, our journey really began on February 4th, Super Bowl
Sunday, the morning of Michelle’s baby shower, when her water broke. She was
only 34 ½ weeks and Lillian was breech so a C-Section was in order. Lillian
weighed in at 5 pounds 8 ounces and was 16 inches long. She was taken right
away to NICU for some assistance with her breathing. She was then
transported to a level 3 NICU hospital within an hour and Michelle was
transported 6 hours later. It just took a completely different path than we
had planned previous to that meeting on the 21st.
Lets just say that we started out on a rapid decent because at the meeting a
genetic doctor that had never examined or seen Lillian began listing the
typical traits associated with Trisomy 13, most common causes of death and
finally the name of a pediatrician who specialized in hospice care.
We were shocked to say the least as we had just watched Lillian slowly gain
strength over the previous 3 weeks in the NICU. We were originally told and
thought her problems thriving were due to Lillian’s premature birth. Though
looking back at the pregnancy there were signs something was going on.
During a routine ultrasound, the doctor noticed a single umbilical artery
(two vessel cord). The genetic counselor recommended an amniocentesis, but
we declined having recently experiencing a miscarriage, and since no other
abnormalities were noted. At later ultrasounds they noticed, but were unable
to confirm a possible ASD and VSD. Lillian also has a bicuspid aortic valve
and mitrovalve prolapse. Also she was small (5th percentile) in subsequent
ultrasounds.
After 22 days in the NICU, we brought Lillian home, on February 26th. We
were happy to leave the hospital, but terrified about Lillian’s future. The
first few months were very difficult. We struggled to come to terms with
this new path and where it might lead. We would not have gotten through this
time without the support and prayers of family, friends and our church. This
web site,
www.livingwithtrisomy13.org, and all the children on it also played a
very important role as our outfitter and guide on this amazing journey.
.jpg) Lillian is now 19 months old. She has previous listed heart conditions,
which her cardiologist said is not an issue for her at this time. 14 out of
20 cells tested showed an additional chromosome 13. She had an enlarged
kidney at birth, which has continued to improve. She is small for her age
and has low muscle tone, but is healthy. She has some difficulty eating (she
tongue thrusts while eating), but has been eating mashed table foods since
she was a year old. Lillian has outgrown some early problems with reflux,
but we still have some constipation issues. She wears glasses for
nearsightedness and stigmatism (and is very cute in them I might add). She
also has a small coloboma in her eye, but the doctor is not concerned about
it at this time. Lillian sleeps through the night, but rarely naps during
the day (any advice would be appreciated). She is overall a very happy and
content little girl who adores all four of her grandparents. She loves
swimming, dancing and music. Lillian has been seeing some amazing therapists
(OT, PT, Speech, Music and an early start teacher since she was 2-3 months
old. They have all played important roles in her development and in our
development as Lillian’s parents. We cannot thank them enough for all they
have done for us. We highly recommend early intervention. Lillian spends 16
hours a week with an amazing family from our church. They watch her in
between Michelle and my work schedules. Lillian has really thrived since she
began spending time with them. They are truly a blessing.
The SOFT organization has also been very supportive as we spent 5 days in
Colorado at their annual conference. What an important part of our journey,
and we plan to go back each year. We highly recommend going for anyone who
has not been, and we would love to meet some other families and their
precious angels.
So what started out as a rapid decent slowly and steadily turned to an
assent and now we feel as though we are in full stride. Each and every day
Lillian is revealing a part of life more glorious than the day before. We
have learned so much from Lillian and we cherish each smile, laugh,
milestone and moment with her.
More importantly, we would not change one thing about Lillian; she would not
be Lilly if we were to do that. It took us a while to realize that nothing
bad happened to Lillian, there was no accident or tragedy. This is who she
is and will always be. All of these children have something very unique and
beautiful to offer the people who are lucky enough to have them grace their
lives. God makes no mistakes; we are all perfect in His eyes.
Matt and Michelle Monaghan
Myshel22@aol.com
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