Doctors Doctors and More Doctors...

Its been a WHILE since I updated!! Life has been crazy.. business is crazy and there are ten thousand things to do!!!

Alrighty... well we got to see the Pediatric Cardiologist this past week... and I haven't had time to post and update!!

Seems like between Kyleigh and I- we have about 7 doctors!!! Everyone is passing info to everyone else... I think I am going to start keeping copies of everything in my own chart and lugging it with me!!

So.... she most definitely has a VSD (Ventricular Septal Defect) and a hole in her upper right chamber (murmur??), and her pulmonary artery is definitely larger than normal, and the right artery is definitely displaced.... so all of that we pretty much already knew.

BUT- she does NOT have any form of a pulmonary stenosis... which seems to puzzle the high risk doctor considering all the other problems. She is quite the active baby and literally never stops moving!! The ulstrasound techs always have trouble seeing what they need to because she is so fast!

Also... her heart is growing normally in spite of all the problems... which the doctors say is a good but puzzling thing. And she is weighing in at almost 3 lb already!!!

Also, we have managed to get into the #1 Pediatric Cardiologist in KY - Dr.Cottrill. She was very very nice... and she says that I am more than welcome to deliver at the hospital of choice and with Dr.Y!!!!!! I was SO fearing having to go to UK or Cincinnati or somewhere else to deliver!! So that is a huge weight off my shoulders!! Delivery is set for July 13th and we have confirmed our date with Dr.Y, my high risk doc, the general pediatrician, and the cardiologist and her US Nurse... so hopefully that date will stay permanent!!!!

So... all is good in Kyleigh's world for now!

Now...for me. Well lets just say my body is taking a beating after the 3rd child in 4 years!! I started to have some hip troubles at the very end of my last pg. Now they are deteriorating FAST!! Thus the reason why I am hanging out less and less here... literally everytime I sit in my computer chair... I am in pain. Sciatica... horribly!! I have a hard time getting up and down stairs because of the shooting pains and my toes/feet go numb. Troy is going to have to take over proofing because I cannot sit in my chair anymore- like it has taken about 7 minutes to write this post... and already my toes are numb and legs are tingling with pain.

The worst part is... the only thing that makes it better is laying down- which I rarely have time to do!! So... Dr.Y is sending my to physical therapy and I hope that makes it better- have to make my appt for monday!! But that is yeat another thing to work into my already packed out schedule!!

Why is it we can find time for so many things... but then it comes to our own bodies and we tend to just grin and bear it??

So... that is the update on life!

Today is Sunday

I think about where I was a week ago and where I am today... and its amazing how much things can change in a week. It almost seems like I have been given a whole new life....

It is raining outside- well storming... and I awoke this morning to this eerie orange sky. About 2 minutes later it exploded into this torrential downpour and it made me think about the past week. This is exactly how my feelings had progressed through the week... eerie strange feelings on wednesday that took me to the doctor. Then the torrential downpour of US,amnio, doctors everywhere, tears, sadness, fear, all too much at once!!

Now five minutes later the storm is gone... and the sun is trying to come out again... and while I know that there will be more storms in my life I know they are only here for the moment... and no matter how heavy they are or how much they weigh on us... in the end they are just a storm and they too shall pass.

Unexpected News!!!

I had just settled into the fact that we were not going to find out anything until next week... possibly the END of next week... and you know I had become okay with it. As much as I could be.

So when the phone rang this morning and I heard the unfamiliar voice on the other end I was thinking it was a telemarketer!! GREAT.. just what I need!

I am glad I didn't try to blow them off because it was the nurse from Dr.Barton's office... calling to say that they had received the results of my amnio and FISH...

EVERYTHING was perfectly normal!!! All of her chromosomes were normal and intact!!! There were no syndromes or Trisomy!!! Then she asked if I wanted to know what the sex was... "It had better be a girl... because I just put all the boy stuff on EBAY!!" I replied!!

And yes 100% certain that Miss Kyleigh is in fact a girl!!

So today is a very good day! I feel about 100 lb. lighter. I was laughing and crying all at the same time when I was talking to her on the phone!

When I got off- I looked outside and noticed what a beautiful day it was. The sun was shining... it was almost 65 degrees- which is WARM for this time of year! And I couldn't help but think about how the weather mirrored my life and feelings today... bright and sunny!!

Day 8: Being jacked around!!

Today I managed to find out that the results of our FISH will not be back until AFTER our amnio comes back next week... so my questions are:

WTH good is it to get the FISH AFTER the amnio... seems like a waste to me!?

When was someone going to call and tell me to QUIT holding my breath because it was going to be a while!!!???

I am now QUITE frustrated with the whole office/lab system....

Dr.Y and I are going to have to have a talk today.

One more day....

Well I went through yet another day with no phone call... I see Dr.Y on Thursday so hopefully I will be able to find out something ANYTHING by then. Troy went back to work... and life went on.

It kind of makes me sad and makes me feel like I SHOULD be stopping my life... like I am supposed to be so upset all the time that I cannot function... yet I'm not. Dishes, dinner, laundry, running this business somehow I have managed to find a way to get everything that I need to get done done...

Well with the exception of Amy's website... and Amy if you are reading this.. I am working lady!! I promise!

Orders come in and go out... laundry is clean then dirty again... more decisions on the house... more time to wait.... and how do I feel today?

I honestly do not know how to feel...

Day 6... Came and Went....

and there was no phone call. I called Dr.Y and he had nothing... called Dr.Barton and they said they would call as soon as they knew anything... yet no call.

It was a hard day waiting and wondering if the phone would ring at any minute... staying home so that I didn't miss the call that never came....

I know they say I cannot put my life on hold... but really I need someone to tell me HOW do I go on as normal? Because you see that TOO is impossible...

We are trying to make decisions for our new house... trying to add feet to garage... tryin to decide on windows and decks, etc... and as much as I am excited
right now I just do not care.

The one that that I truly care about right now is just NOT happening as quickly as I NEED it too...

Julie told me today that no news is good news... I sure hope so!

Day 5... Yesterday was a good day... today...

Well that is a different story...

I have alread lost it completely TWICE today and it is only noon... This morning I was sitting here trying to get somethings done and Owen was being a Hellian... and Troy was still sleeping even though I CAN'T sleep so I was up at the buttcrack of dawn... and I just lost it... made Troy get up - I put on clothes got in the car and drove... I tried to go to Target and THAT did not even help!! (I mean come on when Target doesn't help- that is BAD)...

Then we were at church and singing the closing Hymn- Come unto Jesus... and of course I was balling... couldn't even see the hymn book.... and I feel like the whole church was just staring thinking - "what on earth is wrong with her?" and I did NOT want to sit and answer a bunch of ?? so we hightailed it out of there real quick....

So now I sit here with my Peanut Butter Patties to console me... wondering how many more times I will break down today... thank God for the Girl Scouts!!

Day 4 Came with life's little blessings!

Kyleigh's Blog

Day four was uneventful... grocery shopping which I hate, trying to get work done on the house and for the studio... things are getting a little more tense as we get closer to Monday. Last night Troy finally asked me if I thought he was any LESS stressed about this than I am. Well no - I know he is just as stressed as me... but it is DIFFERENT... maybe worse because he doesn't get to feel her move ALL the time and KNOW that she is okay in there for now... but still while we are both hurting and not sleeping and getting pretty grouchy its different...

Now I am starting to wonder how this will all happen... I know the FISH should be back on Monday... but will they call with teh results or ask us to come in to the office? If they ask us to come into the office does that mean something BAD? Which of the three doctors I now have working with me will be calling me? I want to call Dr.Y 1st thing Monday am and ask all the ?? which I should have asked last week but didn't have the wits about me to come up with them.

I think that this whole thing is getting to me more than I will let myself believe. I went to the store last night and needed 6 things to make dinner and only managed to come home with 4 of them. I can't remember things from day to day... phone numbers that I have dialed a million times before...

but there are some things that used to be very unimportant to me that have suddenly become plastered in my mind....
Wednesday was March 1, 2006... what a way to start spring... but I am hoping in like a Lion and out like a Lamb!!!

Yesterday was Saturday, March 4, 2006. Tomorrow is Monday, March 6, 2006. The dates and days of the week seem to be branded into my mind... I will be hard pressed to forget these days... maybe I am just being prepared for the road to come...

You know I have made some promises to myself.. no matter how tired, or how much sleep I miss, as long as she is healthy- I PROMISE never to complain... no matter how many surgeries or how long I have to live at the hospital I will be GRATEFUL that she made it into my arms!! I will NOT complain about the price of preK... or how much her wedding is breaking us. I will make sure from the first day she is on earth that she knows that this mommy would give up everything for her.... and would do anything to have her here HEALTHY and happy!!

The whole Horrible Story....

On Wednesday I thought I was having contractions so I visited Dr.Y. While I am there talking about the contractions he tells me that he had planned to call me but when he saw I was coming in decided he would just tell me in person.

While he was reviewing my 20 week ultrasound he found a two vessel cord... a normal cord should have 3... which is not that big a deal... babies may come out smaller than average - which we joked would put mine right about normal since I always have such huge babies... and everything went on just fine. He told me that he wanted me to go have a level 2 US just to see if they could see something more than what he was seeing. I immediately called Troy and said "come now!!!"

The whole time walking to the US I am thinking - this is the VERY cool US that has the 3/4D so I was excited as I had been reassured by Dr.Y that it was probably nothing to worry about.

Troy must have put the afterburners on because he managed to make it to the building, park, and find the office in 10 minute flat!!

They take us back to start the scan and a VERY nice US tech is scanning everything , brain normal, legs, normal, hands normal, no extra digits, no enlarged flat of skin, no malformities of the facial structure... a HUGE honkin nose (courtesy of my late grandfather!!), kidneys fine, spine fine, definitely confirmed the two vessel cord, then she gets to the heart... she scans for 15 minutes or so... and then tells us she is going to go get a Doctor because she is just not seeing what she wants to see...

Dr.Barton (Doc #1) comes in and says immediately to move to another room with a different machine. So we move... then Dr. OBrien (doc #2) comes in and all three of them are standing there scanning and scanning the heart and no one is saying a word. The wholr room is dead silent... after about 30 more minutes... the docs LEAVE the room to "discuss" . Right then I knew, this was NOT good. It was at this point that I LOST it... every bit of warm blood drained from my body and I was instantly cold from the inside out.

Dr.Barton walks back in the room picking up a CHART... although, he said, the chart would help us much because what he was seeing was not on the chart... it was kind of a combination of two different things... They are looking at a Atrial Septal Defect which in lamens terms is a whole in her heart... and / or a Ventricular Septal Defect ... also one of her arteries is enlarged by 40% and the other is 10% smaller than it should be... Dr. Barton is also not convinced that her arteries are connecting in the correct places... so basically unless the US is just really jacked up her heart is a MESS...

Immediately he starts telling us that because he is seeing the heart problems AND the cord problem that leads him to think that he is missing a Trisomy or a Syndrome of some sort... this is the point at which my brain turned OFF!!!

Having just phtoographed a Trisomy 18 baby in November who did not make it through birth... and Troy's sister having Trisomy 21... Down Syndrome... I LOST it.. yet again... and truly I heard nothing else after that... somehow it just seems like the end of everything... Trisomy 18 babies DO NOT LIVE... it is a terminal illness... most will die in utero and the ones that make it through birth usually will not make it through the day.. and I know this because I researched the diesease before I phtographed Emma Kate. So to say the least it was like a huge brick hit me straight in the head. To think that I may never get to hold my little girl... the baby I wanted so badly and have been so excited EVERY single minute of this pregnancy... I hurt in ways that I cannot explain.

After blanking out I managed to understand the Doc to say that I would probably need to deliver in Michigan or Cincinnati depending on the severity of her heart..BUT the Pediatric Cardiologist probably is not going to see us until she knows if there is any chromosomal abnormalities... and the only way to find that out is to have a genetic study / amnio done.

Now I am not usually the kind of person who will opt for all these extras tests... we passed on the AFP... but if the doctor needs to know to be able to properly treat our baby... then so be it... so I had the amnio done on Wednesday... the procedure itself was not bad at all... I think the fact that I was numb from all of the rush of information that I didn't honestly feel it... but the next two days were kind of rough... you just feel like your insides have been beaten up... it is all crampy and crappy.. and probably being so upset made it worse.

After ALL that happening they sent us back to Dr.Y who now still has to figure out what is happening with the contractions.. and sit us down and try to explain what is really going on... you know that when your doc walks in the room all teary eyed... that this is not good!

He told us that Dr.Barton had sent off a FISH- which is an accelerated growth of acertain chromosome set , I believe, for DiGeorge syndrome... Dr.Y did not even fully KNOW what this is... had to look it up in his book.. He says he has never seen a DiGeorge in his practice before. We sat there for almost and hour talking, about what I do no honestly remember, all I know is I heard mumbling in the background...

I went into the office thinking I would be experiencing something that I had been there and done that before... and came out devastated. Wednesday was not a good day... or in the words of Dr.Y "I bet today was a pretty damn shitty day"...

How true.