So by now you probably have guessed…Princess Kyleigh is
HOME!! Thank you all so very much for
your love, support and prayers. We still
have a very long way to go but having our princess home makes things so much
easier. As any of you who have children
know, having an infant in the house may make caring for her easier, but it
certainly does not make ANYTHING else (like writing a blog) easier! Bridgette and I were spoiled when we had our
son Kevin because he slept through the night from day one. Whenever he did wake up to eat, Bridgette was
nursing so it was a quiet and relaxing time.
Kyleigh is very different in that she HAS to eat every three hours
whether she is awake or not and she is fed through her NG Tube which is easy to
do but requires some set-up and of course monitoring. Oh and I am very much a
part of that LOL. So needless to say we
had some adjusting to do and during the time I used to write this blog, I am
now feeding Kyleigh or getting some much sought after sleep.
To be honest, I considered not writing anymore, Not because
I don’t enjoy it and certainly not because there is nothing going on, but I
felt since the flow of new information had slowed down, everyone knew what was
going on by word of mouth. I was very
wrong. I guess I didn’t realize just how
far this blog reached and how many people come here to find out how Princess Kyleigh
is doing. It has been wonderful to run
into people that I don’t see all the time and have them ask “How is your
beautiful little girl, when will she be able to come home?” “I have been checking your blog but there
haven’t been any updates since she went to Loyola!” Princess Kyleigh has certainly made an impact
in so many lives. So for those of you
that don’t get the regular flow of information from immediate family and close
friends, I apologize and this blog is for you J
Kyleigh was discharged from Loyola on April 4th,
just 2 days before her 1 month birthday.
Bridgette and I had to prove we were ready so to speak by taking a few
“classes” at the hospital. We had to
take an infant CPR class; verify the prescriptions were correct and demonstrate
that we knew how to administer them; demonstrate that we knew how to feed her
through the NG-tube; and lastly we had to learn how to insert the NG-tube in
the event Kyleigh pulls it out. Learning
to put the NG-tube in was a very emotional and unpleasant experience but
Bridgette and I both got through it and while, we haven’t had to change it yet
without the help of a nurse, we are much more comfortable with it now.
As the title of this blog states, we definitely have a new
(but temporary) normal. Kyleigh’s castle
has many visitors who come to check on her.
There is a home health nurse that comes 1-2 times a week to weigh her
and see how she is doing overall. There
is also a public health nurse that comes once a month to check on all of us,
but especially Kyleigh. Since Kyleigh
was in the NICU her name is given to the state as an “at risk” baby. The nurse is required to visit (whether we
like it or not) and provide us with resources for support for Kyleigh and the
family. It is actually a very nice
service so thank you to all of you Illinois tax payers LOL. Once a month the Home Health Company visits
with boxes of feeding supplies, most of which we do not need. I have contacted both my insurance company
and the home health agency to try to change the order, but I am told this is
what gets sent to “NG-tube patients”.
What a big waste of money and resources!! My love/hate relationship with the insurance
company and the home health agency can be a topic for a different blog
LOL. Lastly, Kyleigh will be visited
regularly by some Early Intervention Therapists. They are all coming out on May 17th
to complete their evaluation and determine which of them Kyleigh will
need. I am sure there will be many blogs
to come about this since I have already voiced my opinion to the case manager
when I found out that the one constant person on Kyleigh team will be a
Developmental Therapist. For those of you
that do not know, there is a not so pleasant relationship between OT’s and
DT’s. Based on their title, you are
probably thinking they are perfect for Kyleigh, and to a certain extend you are
correct. The problem is in order to
become a DT one simply needs to take certification course to become licensed as
a DT. Meaning, no matter if you
background is in medicine or auto mechanics you can become a DT. So I have already told our case manager that
I expect to see background information on any DT working with Kyleigh, not just
their DT license. In addition, the DT
profession is constantly trying to do the job of an OT and infringe on our
practice act but that is neither here nor there in this particular
situation. If Kyleigh needs a DT, she
will have a DT. I will just make sure
their background is appropriate!
Over the few weeks Kyleigh has been home, her breathing has
changed pretty dramatically, in that she is breathing faster and harder,
especially when she is eating. It is to
the point now that she will just go to sleep while she is eating because it is
too exhausting to participate. We told
this to the cardiologist during our office visit and he agreed but said, as
difficult as it is as a parent to see your child struggle, we should try not to
worry too much. According to him,
Kyleigh’s is actually doing much better than most babies with the same heart
condition. He pointed out that babies
with this condition’s heart and lungs are working as though they are running a
marathon all day long. Therefore Kyleigh
is burning so many calories that it is difficult for her to gain weight. However, we are happy to say that Kyleigh is
gaining weight very nicely and the doctor was even impressed that she has the
typical “chunky” arms and legs you would see on any other baby. I did tell the cardiologist that if I knew
anything about nutrition, how to gain weight was it!! LOL!
Kyleigh gaining weight is absolutely a success to be
celebrated. It has not been easy at
all. Aside from Kyleigh, Bridgette is the
true champion in this regard. She works
with the NICU nutrionist to come up with the appropriate mixture of breast milk
and formula so that Kyleigh gets the exact number of calories per day that she
needs to be able to gain weight. If you
were to come into our kitchen you would see that it truly is a science. In fact, my best friend Anthony said that our
kitchen looks like a mad scientist lab!! Between the math problems scribbled all over
pads of paper, to the different types of formula being used, all while trying
not upset Kyleigh’s stomach. Bridgette is a hero in my eyes. She just tells me which bottles of milk to
use for the feedings so I don’t screw anything upJ. Proof once again how lucky I am to have such
a great wife and how fortunate our children are to have such an amazing
mother!!
I could go on and on about all the details of our daily life
right now but I know what you are really wanting to know is when will Kyleigh
have surgery?! We were finally able to
schedule her surgery for May 20th.
She will have the surgery at Advocate Christ Hope Children’s
Hospital. The surgeon will be Dr.
Ilbawi. We have many pre-op appointments
leading up to that day and that’s probably a good thing because we are already
a nervous wreck!! Many of you have
asked/offered to come to the hospital to be with us while we wait for the
surgery to finish. Thank you very much
for your kindness and for being so thoughtful.
Bridgette and I ask that instead of coming to the hospital to be with
us, you focus on sending positive thoughts and praying for Kyleigh that
day. For family, we may have a
“satellite waiting room” set up at GG’s but we will keep you posted on
that.
That is it for now!
Overall, things are going as well as they can. We have adapted to our new, but temporary,
normal. Kevin LOVES his baby sister and
they really love spending time together.
Thank you all again for all of your love, support, and prayers. Please keep them coming! Here is a recent picture that I shared on
facebook for those of you that may not have a FB page.
Love,
King James (cause King Jim just sounds weird), Queen
Bridgette, Prince Kevin, and Princess Kyleigh
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