Sunday, August 12, 2012

More about Adriana!

A few weeks ago we went to Little Rock to meet with the genetisis. We learned more about her Noonan Sydrome. Turns out she doesnt have Noonan Sydrome she has Noonan like sydrome. Basically her one little messed up chromosome is different than what is seen in more Noonan Syndrome kids/babys. Hers is a Lukemia Noonan Sydrome. The oldest child with it (that has been known) is 12. Many have had lukemia, many have not.
 We still dont know where it came from. We will prob do testing on me and TJ later in life (its a pretty costly test) to see if it is in our genes or if its a random thing.
 Back to her, she has a high chance of getting Lukemia than your average kid. How high of a percentage, we dont know just yet. Down sydrome kids have a 1.??% where normal kids are like .1% (something like that). I asked a million questions and the only thing she could tell me was its in testing. They dont know really anything besides which chromosome is messed up and she has Noonan like sydrome. It is scary. They can do blood test to check her white blood count but there isnt a need Lukemia grows VERRRRYYYYY fast. We just have to watch for the signs and go in RIGHT then! Since leaving childrens in may she has been a healthy baby girl!

Thursday, July 12, 2012

Best baby ever!

Before her button

She pulled several tubes out threw her nose and mouth! Shes quiet the tube puller outter! :)

Our experience with chyl

Chest tubes don't always help, in Adriana's case they were a good temporary fix but not long term. After weeks of fighting it the drs finally suggested we just let her body do its thing. As long as she was stable we leave her alone! Special diet and watch it. That was the best thing we could of done! It's been 3 months and her chyl is about gone! It may not work in all cases but it helped my sweet girl a ton! Who knows where we would be if we had of pushed for another chest tube like we were!

Saturday, June 16, 2012

Noonan sydrome

Never hurd of it huh?!

Text book deffinition: Noonan syndrome is a genetic disorder that prevents normal development in various parts of the body. A person can be affected by Noonan syndrome in various ways: unusual facial characteristics, short stature, heart defects, other physical problems and possibly lower intelligence. Noonan syndrome is caused by a genetic mutation and is acquired when a fetus inherits a copy of an affected gene from a parent (dominant inheritance). It can also occur as a spontaneous mutation, meaning there's no family history involved.There's no specific treatment for Noonan syndrome. Management focuses on controlling the disease's symptoms and complications. Growth hormone may be used to treat short stature in some people with Noonan syndrome.

Adriana has a rare type, its only been know about for 7/8 years. Its a cancer noonan, it doesnt mean she will have cancer but that is what it is called. The kids/teens that have that type are normal noonan kids. They just have those wacky chromozomes. We have no clue were she got it but there are tests being done to see where she got it or what caused it. Alot of the things that are wrong with Adriana are caused by noonan sydrome. She also has alot of the features of a noonan sydrome baby!

As of right now me and TJ have decided to not put her threw any growth hormones at all. She is perfect just the way GOD will make her. Unless it is 100% medically needed after our research and drs proof.

Friday, June 15, 2012

Acid reflux/ feeding/g tube

I swear Adriana has one of the worst cases of acid reflux ever!! She had wedges, medicine, and everything else drs do to fix it. Nothing helped until finally the lovely surgery team at Arkansas Childrens Hospital did the Nissen. Ever since she had it done she hasn't threw up, gagged but no throwing up which is great compared to what she was doing. She would throw up even being strictly TPN. Which I had several dr's tell me it wasn't possible to do, she proved them wrong!! She also threw up being TPT which wasnt possible either.

Nissen is where they tie the stomach around the esophagus to make it where you cant throw up in babys/ young kids they have to put in a mic-key button.

Mic-key button, a feeding port that is in the stomach but has a port that is out of the stomach.

TPN: nutrients through an IV or PIC-line.

TPT: feeding tube that goes down into the intestines.

Chest tubes/ Grumpy girl / a few extras

Those things suck! She has had 2 sets and 3 times just on the right side.

Adriana is NOT a fussy baby at all. The only time she would cry would be when they took tape off of her and when she had chest tubes. Blood drawing was nothing compared to tape and them stinkin chest tubes.

She is the hardest thing to get blood out of or get an IV on. I went around and around with the nurses and the IV teams at ACH about getting IV's and blood from her. I guess they thought I was kidding when I said she is a HARD stick. I would only let them try 3 times and then I told them no more they didnt need it that bad. Needless to say she got a PIC line during one of her chest tube placements. Those things are AMAZING and saved alot of aruging and flustration until she got her monkey toes caught in it and pulled it out. Silly girl!

 PICC line is a long, soft, flexible tube, or catheter, that is inserted through a vein in the arm. The PICC catheter is designed to reach one of the larger veins located near the heart. It is longer and thinner than a regular intravenous catheter. A PICC line is frequently used in the home setting.

Pregnancy TMI!!!!!!!

The day before I had Adriana, 10-1-11 I woke up feeling normal for a 8 month pregnant women. As the day went on I noticed my ankles and legs were swollen. I mentioned it to my husband who said he thought my face looked a little fuller. I just propped them up a little later they were even worse. I decided to call my Dr just to make me feel better, it was a Saturday. He told me to go in. Got there and they got me all hooked up on everything, gave a urine sample. They said I was dehydrated. pushed two bags of fluids in me. I have always (my urethra was too big when I was born I had surgery on it not long after birth)  had a pretty horrible bladder.  If I have to go I have to go! The whole time I was there I was leaking stuff (then what I thought was pee from all the fluids and stuff they were pushing in me.) Now I think my amniotic sac had a tear in it or something. I mentioned it to the nurse and we just chalked it up to my horrible bladder. They checked me several times I was still at a 2 which I had been for days. They sent me home told me to take it easy. So I did. Went home and got on the couch for the rest of the day. Went to bed, I was restless but I was pregnant. I started to contract at about 1/2AM that night/morning. I decided to take a hot bath thinking maybe it would relax my muscles like it usually did before and I would be able to sleep and stop the contractions. I sat in the tub till the water got cold, went back to bed still hurting and restless. The contractions were 10/15 mins apart not regular at all so I packed my bag and the kids just in case.  I figured it was her teasing me. I just kept hurting worse and worse by the time I got everything together  I went ahead and woke my husband to go to the hospital just in case.  No sooner (about 3/4AM) than I got him up and told my inlaws who were there for the weekend we were gonna go to the hospital  I was really feeling the contractions. It was a good 10-15 min drive to the hospital, my water broke in the loop of the hospital, my husband was NOT leaving me as he went to find me a wheel chair I stood up to get in my water broke. He runs me up to labor and delivery telling them im having a baby NOW they insist on weighing me and crap knowing I was just there. I kept telling them she is coming NOW! They get me a room wheel me in there I go straight to the bath room to put my lovely gown on and  I feel the urge to poop so I sit on the potty for like 5 mins I finally just give up and go lay in the bed the nurse comes in to check me and get me all set up. She checks me and Adriana is right there. She screams don't push! Her and my husband each grab a leg and she lets me push it was one push and she was out that fast. The nurse cuts the cord and hands her to the NICU team which  I have no idea when or why they were there but I am so thankful they were. Im freaking out she didn't cry or anything. My husband is sitting next to be still, as one of the team members says shes ok were gonna go work on her. They didn't tell us anything. What seems like a life time later my dr gets there tells me she is ok they are still working on her, gives me a shot in my thigh (which hurt worse than labor) and had my deliver the placenta.. He tells me he's gonna put me on a floor were I can stay longer if needed they wont kick me out fast. That really freaked me out. Its like 9am by the time they get me in a room and all still really not knowing anything about her. Family comes and goes, its like 7pm before they will let me go see her. I really wish I would of known my rights and enforced them more with her. It was miserable not knowing anything about her at all. I finally get to see her. The most beautiful 8 pound 10 oz little girl. She was on her chest vented, they told me she was just full of fluid they were draining it off her acted like it was no big deal. It was one of the worst/best days of my life.


Medical defintion: The presence of lymphatic fluid in the pleural space secondary to leakage from the thoracic duct or one of its main tributaries.

Basically, wherefatty glands regect fat and push it around lungs.