Home at Last :)

Sophia was discharged today at noon and we are so happy to be home! The blood behind her heart staued the same so all of your prayers worked! She is such a fighter I cannot believe how well she did! She is so so sweet it melts my heart. She is a tiny bit fussy because of the pain but Tylenol pretty much clears that up. Over the next couple weeks we have quite a few follow up appointments but after just five weeks she should be completely healed and we will finally be able to take her out and about. I am just hoping that the next five weeks go smoothly and that all of her wounds heal correctly.

In need of Prayers

So Sophia is still doing really well and she is all done with her oxygen now!She has no more tubes or anything and there was talk of discharge tomorrow but then she had an echo done and the results were not that good. Sophia has blood sitting behind her heart it could be from removing her tubes or it could just be from surgery but reguardless the blood is there. This is not uncommon in heart surgery patients. The blood should be gone in a few months but in order for everything to be okay the amount of blood has to stay small if she continues to bleed they will have to go in with a neddle and drain it. So this is where you come in please pray that Sophia does not bleed anymore! Pray that over the next few days the blood does not increase and that we get to go home. Thank you to everyone! natalie_cannon@live.com

My Hero

Sophia is so strong! This little baby is my hero. She did so well in surgery then she was moved back to ICU where she has made amazing progress! She had her line taken out of the left atrium of her heart yesterday and the swelling in her face has gone down so much she looks SO GOOD!Yestersday her catheter also came out which she seemed to be happy about. She still has drainage tubes in and gthe right atrial line in plus two femoral arterie lines in but the surgeon said she is well on her way to getting those removed. She is just incredible! She is so hilarious already smiling and watching her favorite cartoons. I don't remember if I mentioned but she loves sports so much she watches them with my dad any chance she gets and the nurses noticed this. She was in love with the Giants game they turned on. She is too darn cute. So hopefully in the next couple days she will be transfered to the 3rd floor which is acute care instead of the ICU. I will try to post daily now since surgery is over but it is so crazy busy here. Thank you to all who have sent encouragibng e-mails my way it helps me gain strength. I have to say that the fact that I did not even cry the day of surgery and that I was able to hold it together seeing her after surgery (she was so swollen she didn't even look like the same baby) was truly God's work. Keep praying for us ! I love you all! natalie_cannon@live.com

Quick Late Night Update

Sophia is in the ICU right now with her daddy. I had to leave because I couldn't take it. They are placing an arterial line in her tiny wrist. They actually cut open the wrist scoop up the artery and thread a line through. The Surgeon described it as threading a needle through a piece of Spaghetti. Sophia isn't very stable and she continues to spell so tonight is a very intense night they might do surgery in the middle of the night if they have to. Right now they are placing all her IV's in and giving her blood and pushing so many drugs. It is truly scary but I cannot let myself lose it. I tried to stay in for the arterial line but I couldn't handle the blood so her daddy is sitting by her side watching over her. Please pray that she makes it through the night and goes to surgery tomorrow! My stomach is completely in knots. When you love someone so much that it fills you up with so much happiness that you cannot keep from smiling it absolutely feels like a knife being twisted in your heart to see them in this kind of situation. Also pray that God will give Kyle and I strength to make it through these next couple of days.

Really Bad Day!

Last night Soph was transfered to the childrens hospital which is totally awesome its so crazy what a different vibe you get when you walk in the doors here. She was placed in thier cardi intesive care unit which reminds me a lot of the nicu there are about 8 beds and they are all heart babies. Infact Sophia's neighbor was born the day before her. So last night went well and so did this morning, she was set for surgery on Monday because her white blood count was down. Well just as things had started to calm down Sophia coded her oxygen went down to 20% I thought the first spell was scary but this one last almost five minutes the team came running from all directions and pushed several drugs including Morphine to calm her down. Eventually the spell broke but it was absoultely awful my dad stood and watched and I literally ran out of the room bawling there is nothing like watching your child fight for her life. So after Sophia was stable they ran another Echo and found two vessels that should not exist which is another problem so they had to inibate her and place the tube down her throat which will breathe for her so that she will not have another Tet Spell. :( She did well being intibated since some babies go into cardiac arrest. She is also havinbg a CT Scan done right now to get a look at those two vessels so they can get a better plan. Sophia will be wheeled into surgery at 8:30am tomorrow. This is all so scary! The risks for this surgery are unreal. Bleeding, infection, strokesm, seizures. Its a lot to stomach. Thank God that they found the two vessels that need to be part of the repair. I know that her Coding was awfull but God is truly watching over us. I can feel it and I have never been so sure of anything. Sophia is so popular here everybody comments on her funny personality and how cute she is and co chubby. She now weighs 12 pounds nine ounces. She is a fighter and one day I will tell her all about what a strong girl she is. My mom and sister and lyndsey my best friend are on thier way here tonight and my grandma will be here on Tuesday. Grandma if you are reading this please know that God is watching over our little baby girl and that she is in good hands. I cannot wait to have you here (My grandma comforts me probably the most out of anyone in this world.)And don't worry about missing her surgery Sophia knows that her GG loves her and I will give her kisses for you tonight. Surgery is estimated to last 8 hours now but I will post several times tomorrow to let everyone know what is happening. Please pray for my baby girl tonight! natalie_cannon@live.com

Surgery Canceled and Hospital Transfer

Today was an okay day for miss Sophia she had her blood drawn first thing this morning and they got it on the first try! Unfortunately the blood work showed that Sophia's white blood count is slightly elevated and this paired with the fever last night means no surgery tomorrow. Sophia's IV also blew so she had to get a new one put in but to my amazement she didn't cry. She is such a little trooper. Sadly she is getting used to being poked :( So since there are signs of infection Sophia's surgery has been postponed for one week. She was also placed on an antibiotic to help with whatever is going on inside her. All the rest of her labs have come back normal and her fever never came back so please pray that this infection goes away over the weekend completely so that she can get this surgery over with. We are also being transfered to a childrens hospital about 2 hours away because of the infection Sophia's surgeon feels more comfortable having a doctor with 35 years of experience perform her procedure. The surgeon that will operate on her is ranked number THREE IN THE WORLD for pediatric cardiothorasic surgery! If that isn't reassuring I don't know what is. So for now we are just waiting for the team to come by ambulance to get this sweet baby girl. I won't be able to ride with her but I will be following close behind. On a brighter note Sophia laughed for the first time tonight! She is such a little doll and I couldn't ask for a better baby. God is watching over us and I can feel all of your prayers working. Again my e-mail is natalie_cannon@live.com

Update

Sophia experienced what is called a TET Spell on Sunday afternoon. She turned blue and stopped breathing for a short amount of time. It was the scarriest moment of my life. Thank God we knew what to do, my dad held Sophia's knees up to her chest and I called 911. Unfortunately Sophia was taken to our local hospital where they had no clue what to do with her. My mom and I had to basically care for her. They did however irritate her enough to cause two more spells. On sunday night we were transfered to the hospital where Sophia was born. The Doctors and nurses are so wonderful here! They had trouble getting her IV in but finally got it into her foot. The Blood draws are still having to be done because Sophia's veins are so tiny they collapse before they can get blood out. Her new surgery date is Thursday October 14th so they took an x-ray of her chest and will try again tomorrow to get more blood. Unfortunately Sophia had a slight fever this afternoon so they are keeping a close eye on her. Pray for our family please!I will keep everyone posted through the website. To reach me via e-mail natalie_cannon@live.com