Two weeks ago Kaitlyn was admitted to the hospital. After numerous
tests...finally we have our answers. Kaitlyn has a Retrocaval Ureter, which
means her Ureter (right side only)is behind the IVC (main vein in the body),
this is extremely rare. This is what is causing the urine to sit stagnent in
her kidney. Within the next few days Kaitlyn will undergo major surgery to
fix it. Surgery is estimated at about 6 hours.
If anyone has UTI issues....please have them specifically look for
this before you are at the end of antibiotic list. We were there.
This is very rare and would not be looked for if it is not pointed out to
If it were not for the ID Docs at Radys Childrens Hospital the
bacteria could have won.
- - - -
Kaitlyn is a very happy baby, she smiles most of the time (something the
Dr's said she would never do!). She weighed at birth 4 lbs 9 oz, she now
weighs almost 20 lbs. For the most part Kaitlyn is very healthy. She does
have seizures, and takes two different medications to keep them under
control. She also has Chronic UTI's. She does have reflux of both Kidneys.
Hopefully this is correct itself over time, but if it does not she will have
to have corrective surgery. She is blind, and hearing impaired. She will
have cleft palate surgery in July, and tubes put in her ears. We are hopeful
that she will be fitted with hearing aids that will increase her hearing.
Kaitlyn receives physical therapy twice a week. She is starting to hold her
head up with more control. We have been told that with lots of work, Kaitlyn
should be able to walk.
Kaitlyn has always been able to bottle feed. She is still on formula (Nutramigen),
and I do give her some foods by spoon. With the cleft palate (it is very
small, in the soft palate), it frustrates her when it gets impacted with
food, it makes her sneeze.
Kaitlyn loves to sleep, she probably sleeps 12 hours + per day. She does
sleep through the night, she usually goes down about 6:00 pm, wakes up a
couple of times to eat, and sleeps until about 8:00 am. She still sleeps
with her dad and I, so that is probably why.
Kaitlyn is such a joy. She has taught us so much. The main thing that I have
learned from her is to never take life for granted. Everyday has been a
challenge, but worth every moment of it.
If you would like to share stories, or information please feel free to email
me at: email@example.com
I will forward some more recent pictures soon.