Below you can read about little Kaitlyn Nicole Fisher. Kaitlyn is the daughter of a very good friend, Todd Fisher. We'd like to ask you to take a moment to say a prayer for this family!
"And he took the children in his arms, put his hands on them and blessed them." Mark 10:16
First Message from Todd (12/18/01):
It is Tuesday night and with our delivery date being yesterday many of you are expecting an exciting email, but this will not be the case at this point in time. Kaitlyn Nicole Fisher was born at 12:38 and had several defects that have sent our world into a tizzy. She has an extra digit on both hands, two of her toes are webbed together on each foot, and the worse problem to date is a deformed tongue that resides in the back of her mouth preventing her from breathing on her own. Therefore, she is on a respirator to help her breathe. The doctors are waiting on the chromosomal breakdown from the blood work before they will take any actions. They have informed us that they are investigating a condition called Trisomy 13, which based upon what I've found out is not a good outcome. They are not saying that she has this, but they're not saying that she doesn't. They did say that if she does have it, her chances of surviving more than 3 months is less than 1%. There are various degrees of this condition so we are really playing the waiting game until we can find out what the chromosomes show within the blood. We are not worried about the external features because they can be addressed with cosmetic work, but we are worried about what's going on internally.
I will keep you posted as soon as we find out anything. Please join our entire family and keep us in your prayers.
Second Message from Todd (12/23/01):
Well it's Sunday night and we have the results of the chromosome test for Kaitlyn and all chromosomes are ok and therefore the test for Trisomy 13 came back negative and we are extremely relieved. All the tests they did on her brain and inside organs look good as well so basically the abnormalities that we see externally appear to be all that's wrong with her. The doctor cannot explain what caused it or what exactly she has, but it is reassuring to know that her internal organs look ok. The next step is to take her off of the ventilator and see if she can breath by herself, but they wanted us to be aware that she might have to have surgery to move her tongue forward since it's so far in the back of her mouth and that might be what's causing the breathing problem. They will not do anything with her cleft palate, extra fingers on both hands, or webbed toes until later down the road so she will have future issues to deal with…but the most important issue at this point in time is the breathing and her tongue placement.
It has been a rough week and I'm sure we'll have a few more rough days until we see her breathing on her own, but at least the chromosomes look ok and we can now look forward to the next milestone.
Third Message from Todd (12/27/01):
Well they took Kaitlyn off of the ventilator today and it did not go well. Her tongue is preventing her from breathing and so she is back on the ventilator. They will most likely take her to the Operating Room on Monday to see what else is blocking the airway. They have informed us to not be surprised if she has a tracheotomy while she's in the OR. They also talked to us about how over time the jaw will grow forward and move the tongue forward as well which will help clear up the airway. Therefore, we could be looking at her dealing with the tracheotomy for a few years until they can see how the jaw develops. We hope that's all that's wrong with the airway, but won't know for sure until they get in the OR. It has been a very rough December and not knowing when she can get out of the hospital is not helping us know how the month of January will be.
They did take her into the OR yesterday, and ended up having to do a tracheotomy in order for her to breath. The next few weeks will involve "weaning" her off of the ventilator so she can breath without the machine. We will also be getting trained on how to care for the tracheotomy. The doctors think as she grows and her jaw expands the tongue will pull forward with the jaw and clear her airway, but we really don't know if the tracheotomy will remain for 2 years, or 70-80 years. The least amount of time she'll have it is 18 months, so at least we are prepared for that. The issues with her hands and feet and the cleft palate will be addressed later during her first year of life. Needless to say, she will require lots of attention, procedures, and surgeries to correct her issues, but at least she's still with us and we'll give her all the love she needs here at home!
CLICK on KAITLYN UPDATES
to see Kaitlyn's Remarkable Progress!
CLICK HERE
to View the Photo Gallery
CLICK HERE to return to
QuiltSites.com HomePage
