2nd Surgery Delayed

Samantha's second heart surgery that was suppose to be done in January has now been pushed back to March and she will have to have another catherization done prior to that surgery to make sure she is getting proficient blood to the lower part of the lung, to make sure that the stent that was placed on 12/4 is working and that the lower colleteral that was dialated did not collapse again..... I have been preparing myself mentally for this second surgery as I know how hard a time she had with the first one and now we have to wait another two months...ugh :-(

On a MUCH brighter note...Samantha turned one on 12/19. She LOVED her cake!!! We had sooo much to celebrate that day....Samantha is beautiful, funny, loves music, loves to make faces, dances to spongebob square pants and all music, loves to play with Frankie....I truly don't know what I would do without her and my son....when I start to feel drained, like I can't fight anymore and am too tired...I just look at her and know that she hasn't given up, that she is still fighting and all my strength comes back.....she is definitely an angel!

Result of 12/4 Cath

Samantha had her follow-up catherization done today and even after all of the negative comments and thoughts from the doctors telling us that they didn't have high hopes that the first part of the unifocilization would work, Samantha PROVED THEM WRONG!!!! To quote the doctor "he is absolutely amazed" at how well she is doing and how the first part of the unifocilization worked!!!! She did unfortunately have to be balloned (dialated) and she did have to have a stent put in and again, unfortunately, they think she may have a blood clot, which means more shots at home of levonx, but that is nothing compared to the news that we can now go ahead to the next part of the unifocilization...... We will have to, once again, after the second part of the unifocilization go through this again where we have to wait to see if it worked so we can have the third and final surgery or if she will need the 4 organ transplant.... But for now, all looks good and my angel has proven everyone wrong.....just when I almost gave up, she showed me how to have faith again. She is definitely an angel sent from god!!!!! Mommy and Daddy are definitely going to give her one awesome first birthday party and Daddy wants to invite all those doctors who told us she wouldn't live and to take her home to die so Samantha can throw cake at them :-)

Update.....

12 days to Samantha's cath and finding out if we can move forward with the next surgery or if she will need a heart, double lung and liver transplant....waiting is driving me nuts, but finding out is making me sick to my stomache....Samantha also lost weight...went from 11.15 to 11.10...even though it is only 5 ounces, it is a step back that we didn't need....2009 sucked, hopefully 2010 will be better......

Catherization delayed until 12/4

Sammi's catherization and ballon surgery was postponed until 12/4, as the little princess has bronchotis and they cannot do the procedure until she is at least 2 weeks off her antibodics and we are sure she is 100% well..... Now I am worried because her second H1N1 vaccine shot is on 11/30, only 4 days before the cath surgery and she got sick after the first H1N1 shot...ugh.... Samantha is now up to 11.12 pounds - !!!! She finally has chubby cheeks!!! It is awesome.... Here is a picture of my little angel from Halloween -

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.

FINALLY....we brought Samantha home yesterday after arguing with the doctors, as they wanted to keep her because of her weight problem (failure to thrive)....she is (according to them) 10 to 11 pounds under weight....We wanted to bring her home, as we felt that being in her own home environment would help her to be comfortable and she would gain weight....at the hospital, she was stressed, constantly being poked and prodded, woken every 2 to 3 hours in the hospital at night...who could rest, heal and get better and gain weight under that stress? Her oxygen level before the surgery was 72 when calm and 60ish when upset...right after the surgery her oxygen level was 84 when calm and 77 when upset...they have now dropped down to 77 when calm and high 60s when upset....when I asked if that meant the surgery wasn't working, everyone gave us the run around and not a direct answer.....we were told we would have to wait until she had the catherization in a few weeks....how fustrating.... Then they tell us that we are doing all of this (which is not a permanent fix) so that she can live to be 10 - 15 years old..... I keep questioning if we are putting her through all this hell, just so we can have her for 10-15 years...how selfish are we???? Then other days I wake up and say we are doing this because she deserves a chance and who knows in 10 to 15 years what medical discovery they could make and that they could come up with something to help her live to 80 - 90 years old.... It feels like I am always questioning our decisions, questioning myself every day.... My daughter's first words were "da da" and at the hospital she said her second words...."ow". Isn't that just great?? and that is said with much sarcasim....my little girl's second word was "ow" as she was crying in pain and looking at her daddy saying"da da ow ow".....she wanted her father to help her to stop hurting..... This just freaking sucks.... But I am so glad to be home...

Samantha Update

Another longggg week is coming to an end at CHOP...Samantha had her g tube surgery on Monday and although the surgery went fine, she is having a lot of trouble with the g tube...it is producing a tremendous amount of gas and reflux everytime we use it.....at one point,she was in so much pain, that my angel actually pulled her hair out! We are trying to fine tune the feeding and the gas/reflux issue.....She is also having more than usual problems with her weight gain...down 6 ounces......In regards to her heart, she seems to be recovering fine from the surgery and in a couple of weeks she will have a catherization done to see if the pulmonary colleterals have grown..if not, then they don't see any reason to continue the surgeries and they state there is nothing to be done. I had a lot of doubts about continuing all of this after seeing everything that Samantha has gone through, the hurt, pain, crying...but Samantha is not willing to give up, so I won't either...if they say that is it, they can't help her, then I move on to my last hope...Dr. Hanley..... Right now, my angel is sleeping and my husband (who just came back after being gone all week) is with her, so I am going to go enjoy a nice long hot shower..... Thank you again everyone for everything....we are truly blessed with amazing friends and family...thank you.

Long Overdue Update

Sorry for the delay in updating on Samantha....my husband had to leave, so I have been here alone with her and I don't leave her, especially since we had two very bad experiences in the past 3 days...so I don't leave her alone at all. Samantha is doing better....her platelet level is back up to 120,000 - not near the 256,000 mark as she was before, but much better...they still don't know why this happened....On Monday they are going to put in her g tube....between the incision on her side from the heart surgery, the stitches from the chest tube, the stitches on her wrist and now the stomache surgery, I don't even know how the heck I am going to be able to pick her up without hurting her, as she is so small, there are no places on her small body to pick her up without hitting her incisions. I spoke with one of her surgeon's team members and it was expressed that they have talked about Samantha repeatedly in the past week since her surgery and the overall impression that my husband and I are getting from them is that they don't hold much hope that her pulmonary collaterals will grow....I am having a really hard time with this and can't accept that there may be nothing noone can do....I feel really lost, sad, angry, etc... Everyone keeps saying hold on to my faith, my prayers, etc...but that is really hard to do when you know in your heart that you may lose your daughter.... I still can't get on facebook, so if someone could please let Dan and Kerry know that I am thinking of them and Ruby, I would truly appreciate it. I will try and update again by Tuesday....Hope everyone has a nice weekend.

Samantha had the best night so far....she is not eating very well, but it was the best night for her sleepwise. We are waiting to find out why she has hardly any voice, when the other day she had a voice....we are waiting to find out why she is congested and coughing (it sounds so horrible) and we are still waiting on the platelets and why they are soo low. So we wait and wait.....she is getting platelet transfusions and she seems to do good after them, but then after awhile the level goes down again...very frustrating......The brain and chest scan show no bleeding, which is good, but now they are suggesting what they refer to as "old people's disease", which is called HIT or HIP, which I have to research when I have time, but apprently what it is is that you develop life threatening blood clots that could kill her or cause her to loose limbs.....Why they think she would have the "old people's disease" is beyond my comprehension, however everything that happens to Samantha is beyond me! So now we wait for those results and if she has it, then we need to be trained on how to deal with that....Every time we go to the doctor's/hospital, they tell us she has something else.....it is so disheartening.....

Update...Samantha had a rough beginning last night - she went into an absolute anger fit and stopped breathing, they had to bag her...it was very scary.... My little girl has some temper on her...she didn't like the asprin they gave her and she started to raspberry and she got angrier and angrier and kept doing the raspberries...needless to say she went into a complete rage. She is showing all of us she is not giving up and she is going to fight until the fight is over. We are now dealing with the platelets still...waiting to see what is causing this problem...they have no clue and every test they are doing comes back negative...so we wait. They are keeping our little fighter sedated so as not to anger her....I will post again later after the doctors meet with us. Thank you again everyone for your prayers, thoughts and support...we truly do appreciate it. God Bless you.

Samantha's breathing is better...so we move one step forward, but yet take 2 steps back as her platelet level is suppose to be 150,000 but is now 12,000 and no one knows why...they checked to see if the blood thinners are causing it, but they are not, now they are doing a chest scan to rule that out and then onto a brain scan to see if is bleeding in the brain...if they rule all of the above out, we go from there....very frustrating....She is a fighter though....she got mad from being poked and prodded and even though she is out of it on painkillers, she managed to raspberry the nurse 3 times - lmao.

Thank you everyone for your support. I am having problems with facebook and cannot access it. Samantha had a horrible night...she keeps stopping breathing...the surgeon told us the pulmonary colleterals were so small and that he doesn't have much hope for going forward with the rest of the unifocilization....unless the colleterals grow,but he appeared to me that he didn't have much hope in that. The only other option is a heart, double lung and liver transplant, which he says that he doesn't believe would work for Samantha....so in essence, all my hope is shattered....I keep asking why we are putting her through this hell...to see her lying there in so much pain...for what? Because we can't let her go??? It's not fair to her...I wouldn't wish this hell on anyone....But, yet she is a fighter and I don't want her to think we gave up on her....I pray for a miracle, but I don't think God hears me.....

Samantha's Surgery

Samantha got into surgery later than expected today...the surgeon has decided that he cannot do the entire focilization today and the stenosis of the aortic valve in one surgery....he believes she won't make it through one surgery to do everything...so we are going to be doing a long drawn out process of multiple surgeries every 2 to 3 months until the focilization is done and then we will do the stenois.....Today they are going to do just the right side of her heart....the surgeon told us this morning that the pulmonary colleterals are extremely small and very narrow and although he is confident that this phase of the surgery will go well, he is worried that they won't grow or they will get more narrowed.....so my worry is okay if they get more narrow and don't grow, then what? If they started the unifocilization and they can't finish it...where does that leave Samantha? I can't believe that she has to do this 3 more times in the next 12 months....