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RILEY RAE
 
24th-Sep-2011 03:10 am(no subject)
People of this country are capable of great things.
As of yesterday, congenital heart disease (CCHD) will be included in the newborn screening tests!
YAY TEAM!

http://newsmomsneed.marchofdimes.com/?p=10107
6th-Sep-2011 04:04 am(no subject)
i haven't posted in awhile, and lost touch with all LJ peoples. sorry. add me on facebook?
http://www.facebook.com/siwelrolyat
i started school again this semester and it has been very busy around here. everyday riley gets closer and closer to being an adult, and it scares me to death! she is so close to making complete sentences, and somedays i would love to hold my little new born infant version of Riley.
my dad always had this saying "first i was reading to my kids, next they were reading to me, then the next thing i know they are asking for the car keys" thats pretty much how this year has been with riley. january she wasnt even walking! and now she is telling me "what are you doing?"




Sooooo I'm sitting here, looking at my little daughter off in dream land and I cant remember the last time I changed a soiled diaper! The lasix she takes makes her pee alot more than usual. Riley still wears diapers only because she really doesnt know when she pees. unless she's naked. But that wouldnt go over too well with the dogs or the roommates, hah.
Riley does "the face" and we run to the potty together. She signals "all done" and also knows how to (almost) wipe (her legs, ha).
If I had any other baby, it probably wouldn't work out. ;)
23rd-Jun-2011 01:53 am - i forgot about Riley's journal...
everything is fine in Riley-land! We missed our cardiology appointment in Delaware yesterday because we have finally moved back home to Henderson, Nevada... I have yet to set up a new cardiologist, but I'm getting there! Things are going well and I love our new apartment.
Riley is becoming more and more like an adult everyday. She doesn't "get into things" like alot of toddlers her age. I am very lucky, and I probably just jinxed myself.
Her new favorite words are
-bobble for bottle
-BUB for Caleb
-bath
-arrow (airplane)
-i-lulululul (i love you)
-down? with emphasis on ow
-woo hoo (thanks, dora)
-up

she is about 29 lbs and is super tall. she takes up about 3/4s of my bed. (yes, we still co-sleep, get over it)
her favorite foods are
-fruit snacks
-green beans
-chips
-french fries
-ravioli
-chicken (the old standby)
-CORN ON THE COB! she loved it and im sooo glad she has a mouth full of teeth
-and toilet paper .... my toddler eats toilet paper. i guess it's okay becasue its the ONE AND ONLY thing (thats not food) she puts in her mouth.

to be continued
8th-May-2011 06:28 pm - EN(T) problems
Riley is growing two new teeth (which makes a total of 16 ?). My question for all you mom's out there- is it possible that the drooling and fluids that are being produced can affect the equilibrium? I know that ear infections are common with teething, but Riley's balance has been so off lately. She has fell from walking 4 times just today!
If you know anything info about this, it would be appreciated! Our next Doctor appointment isnt until the 24th!
28th-Apr-2011 11:12 am - small update- lotsa pictures
Riley got her stitches out yesterday! I am so proud of my brave little girl.

Easter was great, we went to church with Great Aunt Elinore. She said that "if there is one day out of the whole year to go to church, it is Easter Sunday". We didn't stay the whole time, Episcopal services are long. I would choose LDS services over Episcopal. It seemed to me they were all mono-tone and there was no life in their voices! Riley sat with my mom, there were so many people (Elinore and I sat behind the choir!) I didn't even see them! She is a good little girl in church. :)
We walked to the beach afterwards. How often could I say that? It was a beautiful day.
One day I will learn how to do LJ CUT correctly














20th-Apr-2011 04:34 pm - ouchies
at 16mo and 3 weeks Riley has developed an attitude. You can call it "terrible twos" but I'm hoping it's just a stage. Yesterday when Nana steered her away from the dog eating his food, she absolutely broke into a high pitch scream... and that turned into a "hurt cry". Her incision is still so tender and it hurts her to sneeze, cough, or cry. I wish I could explain to her that crying and screaming will hurt her more, but it's impossible. It is so frustrating for the both of us. So when she has a fit, she ends up crying twice as much because of the sternum and incision. :(
She also has about 10 new words she learned this week including : thank you, Elinore, Elinore's Girl, bird, pat the cat, ouch, ouchies, meow meow, Nana, down (to be continued) most everything is ::points:: THAT!
15th-Apr-2011 09:30 pm(no subject)
I am still amazed that Riley spent EXACTLY one week in the hospital!
Surgery was on Thursday- we spent a few days in the CICU, and when we were admitted to 2B, she was up and walking around! I am so so so blessed that I have such a strong, brave little girl. Riley is such an inspiration! One of the Physicians had said that if an adult had this cardiac surgery, he would still be whining and moaning... She was smiling and ready to get outta there! We are home now and she was very cheerful and happy today. :) makes me happy, too!
The bad parts are 3 morning medicines, allergy to bandaids and medical tape (which led to a huge rash all over abdomen and face), some pain around incision, and no baths!


more pics on FB
7th-Apr-2011 08:34 am(no subject)
Riley went into the OR around 832 and they are closing her up now. So far so good.
2nd-Apr-2011 06:57 pm - Baltimore day trip
yesterday we picked up Chris (Riley's father) from the airport and went to the Baltimore Aquarium! We ate some of Parkville Pizza and visited our new cousin Jenna too! It was an eventful day!













Cracker Barrel for breakfast yummmmmm
30th-Mar-2011 06:05 pm - surgery
Riley will be having the third step of her Hemi-Fontan procedure on the 7th of April. It will be approx. 9 am and we have to be there at 630am! The day before we have an appointment with Dr. Bhat and I'm more than certain it will be an all day occasion.
This hospital stay will be our most challenging yet. Riley is so much more active, and our 12 hour visit last weekend made me super exhausted. I do not suppose there are enough toys in the world to keep a 16month old in bed all day! I will need all the help I can get







27th-Mar-2011 04:07 pm(no subject)



this is not riley's exact procedre, but very similar. She has a very rare heart, and her operation (like most pediatric heart pateints) are custom. i found a picture for double outlet, right ventricle but not Riley's double inlet, left ventricle.

http://heartdefectsforeveryone.blogspot.com/


There are currently about a million adults in the USA alone who have had pediatric heart surgery.

Stage One
Blalock-Taussig (BT) shunt: usually performed within the first few days after birth, and establishes a systemic-to-pulmonary artery shunt between the brachiocephalic artery or the right subclavian artery, to the right pulmonary artery via (usually) a tubed homograft or synthetic graft.

Glenn Procedure or Hemi-Fontan: usually performed at 4-6 months after birth as a bridge to Fontan completion. The BT shunt and pulmonary artery band is usually removed. The superior vena cava is then attached to right pulmonary artery, creating a systemic venous-to-pulmonary connection.

Fontan Completion: Usually performed at 2-3 years of age; the inferior vena cava is connected to the right pulmonary artery via a tunnel like patch within the right atrium (Lateral Tunnel Fontan), or by creating a conduit for IVC flow outside the right atrium (Extracardiac Fontan).

This essentially separates the pulmonic and systemic flow patterns and allows the body to adapt gradually to the varying flows, and prevents over-circulation and under-circulation to the lungs.

 i also found this, same website under pulmonary artresia (included in Riley's diagnosis)
 A" Rastelli procedure may be done, which is a procedure that replaces the pulmonary trunk with an aortic or pulmonary homograft. These types of conduits are now the preferred approach,  as opposed to a patch repair which results in severe pulmonic regurgitation. This regurgitation will eventually lead to right ventricular dilitation as a result of volume overload and eventual failure, typically within 20 years or so.

Outcomes
The majority of patients with this kind of defect require multiple surgical interventions. Pulmonary atresia is associated with a greater mortality rate, as opposed to syndromes with pulmonary stenosis (tetralogy of fallot).

Whether there are staged procedures, or primary surgical interventions does not significantly improve survivability.

After 20 years, survival rates are approximately 60%."



27th-Mar-2011 03:48 pm - more from friday
I forgot to add a lot of things from Friday's post. I was so emotionally and physically drained that day, I don't remember who I called and didn't call that night. Sorry if I didn't call you, and sorry if I did call you and was incoherent.
What I didn't mention was that Dr. Radke found two Collateral Veins that are near or on the part of the heart that needs to be "fixed" on the next surgery. So they may have to do a two part procedure for her next operation to fix the collaterals and do the fontan operation.

What is collateral circulation?
This is a process in which small (normally closed) arteries open up and connect two larger arteries or different parts of the same artery. They can serve as alternate routes of blood supply.
Everyone has collateral vessels, at least in microscopic form. These vessels normally aren't open. However, they grow and enlarge in some people with coronary heart disease or other blood vessel disease (such as in the case of stroke). While everyone has collateral vessels, they don't open in all people. (Riley is not all people, ha)

Riley has had a fever and diarrhea since we've been home from the CICU. It certainly hasn't been a fun weekend for us. She still is her generally happy self- which I am every so grateful for! And Riley is getting 4 new teeth! She doesn't seem to mind, and she likes to poke at the upper teeth. I love this little girl!
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