Maria
Hello, my name is Genna and I am a mother of a 10-month-old baby girl named Maria; Maria was born with the diagnosis Microcephaly. Maria had pretty much spent most of her 10 months of life in and out of the UI Hospitals and Clinics due to what doctors are describing as "dying spells." Maria's vocal chords would occasionally clamp shut when she would cry and cause her to stop breathing resulting in CPR at home and intubations twice while in the hospital. Maria has a G-tube, Nissans band, and tracheotomy in place to prevent these spells from happening. Needless to say the last 10 months have not been easy on our family; but that is where Janine Petitgout comes in.
Janine is with the Continuity of Care program through the Children's Hospital of Iowa and I must say that this program is a Godsend to families with children with illness and disabilities! I was introduced to Janine after Maria's first code and our first stay in the PICU; Janine met with my husband and I to tell us that she was going to set up a care conference with all of the doctors caring for Maria so that they could put their heads together and come up with the best course of action to help Maria, as well as help us get set up with all the assistance that the state of Iowa could provide for Maria. Without Janine we wouldn't have had a clue of where to start finding assistance or even know what assistance we needed for her care. Of course at this time everything she was saying to me was going completely over my head, there was too much to take in considering what had just happened to my daughter. Janine stayed on task though and helped us throughout the entire process. I remember from our first meeting that she was a kind and calming person who really excelled in her line of work. Janine not only knew what we needed to help Maria as much as possible, she also knew how to help us cope with our stress, fears, and worries. Janine truly has empathy for our situation and when she is around everything seems easier to deal with. Janine was able to lift our spirits when our world was upside down. Being a first time mother isn't easy to begin with let alone having the surprise that your child has a life threatening medical condition. That is why the Continuity of Care program that Janine is a part of is a wonderful attribute to the UI Hospitals and Clinics, what a wonderful gift you can give to families with sick children!
The help with assistance, scheduling appointments, paper work, etc...were some of the things Janine helped with, but she did things for us that let us know she wasn't just there to "do her job." It took months for the doctors to truly figure out what was causing Maria's "dying spells." We would take Maria home after weeks in the hospital and before long something else would happen and we would have to stay in the hospital again. On one of what we like to call our "home visits," Maria stopped breathing and my husband had to perform CPR on her at three in the morning, which left us completely traumatized and scared out of our minds to be home with this child who could literally stop breathing at any moment. It felt never ending; something was always going wrong for my little girl! I wasn't ready for this, I didn't have medical training, and I felt like I couldn't handle this. Once again, Janine came in. She gave us the knowledge and most of all the confidence we needed to do this, to take our baby home and live our lives as normal as possible. To have peace of mind that we could handle these situations if God forbid they happen again. We rely on Janine so much that I did not want to make the decision to have Maria's Tracheotomy surgery without her being there! Janine is always there for the families that she cares for; she truly is a miracle to me. She is there when I need her whether Maria is sick and staying in the hospital or whether she just has an appointment Janine is there taking care of her patients! Janine is always only a phone call away when I have a question about Maria. I really don't know how she does all of it! I can't write how much she has actually done for our family because it would be way too long, but I must say she has definitely gone above and beyond the call of duty!
To sum it all up, and with tears in my eyes, I write to whomever reads this letter that I longed for the day to have my precious little Maria. I always felt I would be a great mom, but when you have a sick child I think any parent would doubt their capabilities to give the best care to their child, but Janine gave me the best gift; she gave me courage, strength, knowledge, and most importantly hope and I will never ever forget that! Please, please recognize this amazing woman for the beautiful work that she does for the UI Children's Hospital and the Continuity of Care program.
Thank you,
Genna
Elena
January 26, 2007
Dr. Artman,
I just wanted to let you know how much I appreciate Amy Leitch and the program that she works for. Since Elena was born in November, there have been numerous days where I am so overwhelmed with appointments and paperwork that my head is just spinning and I don't know what to do. After one call to Amy, things are usually taken care of or I know what direction I need to take. She's a lifesaver and I am so grateful for the extra help and support during this stressful time in our lives. Thank you for having this service available.
Sincerely,
Gwen
Maddie
Dear Janine and Kris,
We would like to thank you for all your help with our daughter,
Madison. Having an ill child in the hospital is very stressful, but
the Continuity of Care Program helped make the transition home less
hectic.
We appreciate all the time and effort you devoted to us. While we
wish we could have gotten to know you sooner, we enjoyed working more
closely with you after Maddie moved over to 2JCP. All along we were
aware of the difficulties of finding home nursing, but your positive
attitudes about the situation were very uplifting. We are grateful to
you for being so committed and for allowing us to focus our attention
on Maddie.
We also want to thank you for helping with Maddie's discharge
needs and the endless paperwork (insurance, brain waiver, WIC, etc.).
We would have been completely lost without your assistance!
Since we have arrived home, we have been pleased with your ongoing
dedication. We appreciate your efforts to coordinate doctor
appointments and find answers to our questions. Thanks also for
connecting us with services in our community that will help Maddie's
development (physical therapy, occupational therapy, speech
pathologists, etc.).
We have been so impressed with your efficiency and dedication. It
is hard to express how thankful we are for all your support. We are
looking forward to working with you as Maddie continues to grow.
Thanks a million!
Curt, Jill, & Maddie
Jersey
We don't even know where to begin. Our daughter was born with a
syndrome called Mosaic Trisomy 13. It's a genetic disorder that is
pretty rare. We were not aware of this before she was born. So when
Jersey was born on October 14th we felt like we just ran into a brick
wall. We were the parents who thought that we would have the perfect
child, just like our other two. When she arrived she was flown to
Iowa City where she would await her first surgey. Little did we know,
every day we'd find out more and more that was wrong with our
beautiful little girl. Since that day Jersey has had two heart
surgeries and two stomach surgeries. She spent the first six months
of her life in the hospital. Today she is doing pretty well.
When you have so many things running through your head there's
things you overlook and don't even think about. About a month after
Jersey was born we had already talked with about 15 doctors and
about 20 different nurses. After a while it gets to you. But they
were all so wonderful with Jersey. While we were sitting with our
daughter one day, two ladies came to talk to us. Jason and I were
thinking, "Oh great! What do they want with us now?" They introduced
themselves as "Kris and Janine from the Continuity of Care Program."
They said they were here to help out with anything we needed, and
that they were here for us since we were new at all of this. They
probably said it in a more professional manner, but that was how we
pretty much heard it. But by gosh, when they said they'd help with
anything, they meant anything.
They started off with trying to get things together for when
Jersey came home. Like home nursing, papers signed for Jersey to be
eligible for the ill and handicapped waiver, SSI, and places we could
get to deliver her medical equipment. We wouldn't have known about
any of these things if it wasn't for them.
Little did we know, Jersey would be hospitalized for five more
months. That didn't matter to Kris and Janine. They would
consistently come around from day to day to see if there was anything
they could help us with. Of course, we'd always think of something.
Sometimes we'd wait for hours after hours to get an answer from a
doctor or even a plan of what they were going to do. Being parents with
a sick child it seems like days to wait for a doctor's answer or
decision. So we would just ask Kris or Janine to help us and within
the half hour they would always come back with an answer. Leave it to
them and they would always get the job done.
They followed Jersey's records closely and would sometimes sit in
when the doctors would be telling us a plan for Jersey. Us being new
at this, we didn't really know what to say or any of the right
questions to ask. But Kris and Janine were right there asking just
the right questions we needed to know.
Now even that Jersey is home Kris calls about every two weeks
getting updates on how Jersey is doing and to see if we have any
questions or concerns about anything. Sometimes we'll call her if
we're not sure who to call about a question we have, and she will
find the answer for us. She also sets up Jersey's UI Hospitals and Clinics appointments
all in the same day so that it's not interfering with too much work
or too much traveling.
Lots of things in our life have changed. The Continuity of Care
Program was the program for our family. They were wonderful from one
aspect to another. If it wasn't for them we probably would have had a
pretty rough year not finding out about all of these things when it
was needed for our daughter. They made everything go so smoothly. We
know that they are here to do the same for you and your family.
We would like to express our THANKS!!
Dawn, Jason, and Jersey
Ryan
My husband and I would like to thank you personally for the
wonderful services that you and Chris provided through the Continuity
of Care Program. Although we were limited to just five short weeks
with our son Ryan, your program enabled us to spend quality time with
him. This program is a key component to any family facing a child who
has a terminal condition or long-term health care. You arranged his
doctors appointments in such a manner that we weren't driving back
and forth to the hospital several times a week. Although this may
seem trivial to some, as parents knowing that their child could pass
away at any time, an hour is priceless. We decided to bring Ryan home
so his siblings could know him, too. By providing Hospice health care
services in our home, you gave both Allyson and Austin more time to
be with their brother. They were able to love him and help him in his
daily care. Memories that will never be forgotten. Memories that can
never be replaced.
We would also like to thank you for helping explain some of the
complex medical terminology and treatment options that were presented
to us during Ryan's life. As a medical professional, I am sure that
the terminology is easy to understand but as parents, under stress,
trying to make life and death decisions, it was not. You were always
a professional and helped guide us through the decision making
process. The most difficult one of all was the decision to remove
Ryan from life support. You were with us every step of the way
through every question that we asked. You never passed judgment, just
gave simple, clear answers. As a parent, those answers were critical
in helping us with Ryan's health care. Those answers gave us peace of
mind so we never had to second guess our decisions. Since this was
our second child that passed away from Trisomy 18, we can't tell you
what a relief it was not to have those dreaded "what-if's." What if
we would have done this? What if we wouldn't have done that? We had
several "what-if's" from Courtney's passing that lasted five years. A
grieving parent shouldn't have to carry that burden around.
The Continuity of Care Program is a team effort. Through this
program, the medical staff, and Ryan's family, we all worked together
to optimize our time with him. We appreciate the many follow-up phone
calls to see if the transition to home went smoothly. So many times,
parents have questions and don't know whom to call. It was good peace
of mind to know that the Continuity of Care Program was there! Your
program made the University of Iowa Hospitals and Clinics not too big
and scary. We received individual attention that made Ryan's health
care much more manageable. Again, thanks for all your support,
guidance, and time. Mostly, thanks for the memories of Ryan.
Sincerely,
Robin and Jeff
Terrynce
To Kris and Janine,
When Kathy, Terrynce, and I first met you we were about as lost as
anyone could be. We were not familiar with any of the doctors or even
where to go in the hospital, you two showed us the way.
I can only imagine what it was like for Terrynce unable to see,
sometimes never able to move his head only back and forth, move his
hands and legs sometimes wery little. He was so limited to what he
could do.
He stole our hearts and took them everywhere he went. Now he is
gone to a better place where he can move about, run, jump, and play;
go where he wants, do what he wants whenever, whatever, forever.
He stole our hearts.
What you, Kris and Janine, did for Terrynce will never be
forgotten; without your help our lives as well as Terrynce's would not
have been complete.
There are so many things you do everyday, that help so many
people, especially the children. Your work must continue.
This is a very big thank you from
Kathy and Tom and Baby Terrynce
P.S. Keep up the good work.
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