Follow-up Catherization

Sammi's follow-up catherization to check to see if the first part of the unifocilization worked is scheduled for November 11th...I am holding my breathe until then, as that is when we find out if the pulmonary colleterals that they tied together into the shunt have grown or not...her oxygen stats make me think that they have not, as they have gone pretty low since her surgery 9/11....I don't know what we will do or which direction to turn if the surgeon comes out and tells us they haven't grown.....I am really scared....really praying for that miracle that has yet to come....

Cardiologist Visit Update

And so goes the vicious cycle...we take a huge step forward with Samantha (her weight gain) to get slammed 10 feet back with her oxygen level...plummeted to 64 and is dropping.....now they are talking oxygen at home and for the rest of her life....I am so F*ing fed up and disgusted...praying for a miracle, but losing faith...

Yeah Sammi!!!

Sammi FINALLY weights in at 11.5 pounds...after 10 long months our little fighter finally broke the 11 pound barrier! YEAH!!!!!!!!!!!!!!!

Doctor Visit...

Went to CHOP yesterday...the cardiac appointment was not what we expected...Samantha's oxygen stats were low 60's when crying and high 60's when not crying....this is much worse than before the surgery....but we are not going to give up hope...Bobby and I feel that they were low because she had just got done crying and was still upset, however Sam's cardiologist was not as optimistic as we were....she will be getting a cath done next month to check the sugery they did, it may be that her pulmonary colleterals they tied to the shunt are clogged and need to be balloned...we just don't know, and will have to wait to see. Another month of waiting...I feel that is all we do is wait and wait and wait for one piece of good news...it is so fustrating and exhausting... On the flip side, her liver appears to be doing awesome and is amazing her Allageles (I am so tired, I don't even think I spelt that right) doctors....they are taking her off her formula and going to try this special formula for kids who have issues with gaining weight/don't like to eat....it has more calories, but unfortunately, it is just as expensive as the formula she was on.....but hopefully the more calories will help her gain weight. She only gained several ounces...she is not 10 pounds 14 ounces and according to the doctors she should be close to 20 pounds for her age.... On the bright side, Samantha said another new word "up". She is also on target neurologically, which is awesome. Will post new pics soon....

Samantha with her big brother, Frankie, at the hospital....Samantha just LOVES pulling Frankie's hair...she laughs and screams! LOL

Mommy's little angel...pretty in pink.

Samantha

Samantha has been doing very well as far as the heart surgery is concerned - which is awesome...we noticed that her fingernails are not as blue, and around her eyes are not as blue, which is just awesome....we hope that means the pulmonary colleterals are growing....we will see very soon, as this Thursday we go to CHOP and schedule her catherization for the end of October/beginning of November to see if they have grown or not. We keep praying! On the flipside, the g tube is a nightmare....absolutely horrible...I think it was the biggest mistake we ever made....how can she gain weight from it, if she is up all night screaming in pain from gas??? It just plain sucks..... However, thanks to Dan and Kerry, we now have information to take with us to the doctor's on Thursday to see if they can try a different way with the g tube...I hope they listen, as it seems to be working for Dan & Kerry's baby.... I can't believe that Samantha is going to be 10 months old in 6 days...almost a year has past since she was born and even though it has been a nightmare to see her go through all of this, I have enjoyed her so much...she is an angel...she makes me laugh when I feel like crying and when I feel like giving up because it is just so much, I look at her and see that she is fighting and she gives me strength to keep going.....I will post updated pictures on here of Samantha when I figure out how to do it....I keep trying, but can't get it...if anyone knows how, perhaps they can send me a quick note to explain to me how to do it, as everytime I try, it doesn't work - LOL.....

Home....

Finally being home with Samantha is awesome....staying home with my daughter and my son instead of working is priceless. Samantha is a lot of work, but I love being the one taking care of her....Samantha is having a lot of issues with the g-tube and not eating very well by mouth and it is truly fustrating, but we won't give up, we keep going forward. Her next appointment with the cardiologist at CHOP is on 10/15 and then we schedule her catherization...I feel so strung out waiting for this catherization, as that will tell us if her pulmonary colleterals have grown and what our next step is - the second part of the unifocilization or are the doctors going to "throw in the towel"..... If anyone can give me any insight or experiences in regards to a heart, double lung and liver transplant in infants, I would truly appreciate it....there really isn't too much available on line regarding a 3 organ transplant and I am trying to get as much information I can before the catherization in case the pulmonary colleterals haven't grown.....Thank you so much to everyone for everything....we truly do appreciate it.