Miss Tia's Heart & The Pena Fam Update ღ

Current mood: sad
Category: Life

As most of you know Taliyah had her OKC cardio visit today! Many things are going through my head at moment and I hardly know where to begin! She done so good today and I am VERY proud of her. She laid perfectly still during the echo and tests! She was amazing :)

The doctor said that for sure her meds haven't improved her lungs. Very devastating news in my eyes! I was hoping for a miracle...... He isn't sure that her lungs are worse and says they may be in the same spot as they were in January! That is still bad news in my eyes! I don't know how much more I can take of this waiting game! He wants to do another heart cath in April which is risky but of course after that procedure he will know more!

Not sure if everyone fully understands whats going on and its hard for me to explain really. Heck I hardly know whats going on! Basically her heart is okay for her heart anyway. It is still bad but she can live with it at the moment and when it does start to mess up again (and it most likely will from what I am told) they have so many options and surgeries to try and fix her heart BUT they can't "fix" her lungs! At this point in time we will loose her because of her Pulmonary Hypertension [her lungs] NOT HER HEART!! Can you believe that??? I feel like I wanna puke - No joke! Basically because when they did her last heart cath last year they came out with sad faces and told me if the Viagra didn't start improving her lungs that we should basically plan on loosing our little girl they didn't know when but at a young age......it is now MARCH and they upped her medicine dose to 9MLS today!! STILL NO SIGNS OF IMPROVEMENT!! What am I suppose to think???? I am so so scared! My worst fear is coming true and I feel like I am fighting a battle I CANNOT WIN!!! We need so many prayers! I don't think anyone fully gets how serious this is! At this point....the way things are going....I will loose my daughter!! I go on day to day trying to be okay & sometimes I truly am okay just because I know there isn't a thing I can do to fix my daughter.....its completely out of my hands! Its not fair. It's so not fair.

So anyway not only did they put her on a new dose of meds....9mls every 6 hours they also put her on a 24 hour heart monitor. She HATES it :( On top of all that occasionally at night she stops breathing for a few seconds to the point that I scream and shake her lightly to get her to take a breathe!! It is the worst feeling to think your daughter won't wake up!!! :( So now the Dr. is worried she has sleep apnea and we have to see a ENT doctor asap!! I don't know what else is going to go wrong but I really am trying to stay positive. Truly!!! because that's all I know to do!!!

Next step is for sure Boston. Harvey and I believe that we have to go......I am already friends with the lady up there and she says she is ready for her when we are. As soon as they do her heart cath that's where she will go next. The nurse told me today that we had a tough decision! Knowing what to do and where to take her and I for sure AM NOT PREPARED for this stuff. I am lost and I feel so so very alone [even though I have friends, family & my rock Harvey] I feel scared! The nurse was basically saying that taking her to Boston might be risky.....which scared me but Harvey said you know what Sarah - At this point we know what her future holds.....we are certain what will happen if we don't find the right meds.....so taking her to Boston is a risk we have to be willing to take because other wise we are not fighting & we are accepting her fate!!! Not in those exact words but along those lines! He is right.....we can't just not try.....we can't......

On a BRIGHTER NOTE ~ [fake smile]

Besides Taliyah being sick life couldn't be better....actually life would be almost perfect - I guess life wasn't meant to be perfect!

We just recently got back from Puerto Rico!! So fun! I posted some pics last night! Took me forever! Lol! We got to finally be at our nieces bday! We were so happy!! :D We also took a day trip to Gilligan's Island!! The water was SO SO very beautiful! Very blue! Amazing :) Hope we still get remarried on the beach in PR next year!! This is the first time Taliyah really remembered her family there and was excited to go! She LOVED the plane ride!!

She is getting so big and so smart! She can say her Abc's & we found out in Puerto Rico she can count to 15 but only when she wants to! She talks SO MUCh ~ she even says sentences now! Its so funny! She wants to listen to music every time she gets in the car and she asks you to turn it up!! LOL I had to switch to some good Ol Taylor Swift because she is understanding the songs off 106.9 now and that's not good PLUS apparently the radio can say the B word now!! UGH!! How lame is that?!?! She calls Taylor's songs "girls songs" she is so cute!! She says "listen to me" & "look at me" when your not paying attention. She kisses the phone when she tells someone goodbye!! She can sing all of the Dora song! She tells me "Just a minute" all the time and says "whatever" way to much!! She can't make up her mind on anything! She is the most picky eater in the world! She is stubborn but SO VERY FUNNY she makes anyone laugh! She is a tough little cookie! She is my little shadow & follows me around the house! She even has to put on makeup!! She amazes me with how smart she is more so because I was told so many times by so many doctors that she didn't get enough nutrition when she was so sick and they thought she might have brain damage......you would never know they thought that at one point!! :) Its truly amazing watching her grow!! Its been a long bumpy 2 1/2 years but I wouldn't trade her for the world! Everything she does amazes me <3

April 18th there is a Heart Walk in Tulsa! Starts at 8am! We joined a group called Mended Little Hearts of Tulsa! There are children in the group that has problems like Taliyah and I go to my first meeting the 2nd Monday in April! I am VERY excited!! They sell shirts and I would love it if people walked with us!! Just buy a shirt and walk with us!!! I strongly encourage it :) If you want more info message me!! Hope to hear from ya!!

I can't believe my baby brother graduates this year in May!! How crazy is that?? Plus I turn 23 and my baby turns 3! I wanna see Dane Cook for my bday ~ Hopefully that works out! We are trying to plan a trip to Texas soon but not sure if that will work out.....depends on the whole Boston thing. Me and Harvey will be married 4 years this December and together for 5 years this October!! WOW!! Its so crazy how time flies!!

Thanks for your prayers and thanks to my good friends who always check up on me! You have no idea just how hard it is to worry every night but yet you all always seem to care so much!! Love you all <3
Sarah xo