So much to be thankful for

Since yesterday was Thanksgiving I decided to post a few pictures. Sophia has a check up on Tuesday which should be her last for quite some time and then shots on Thursday :( On the bright side we got to celebrate Thanksgiving and we have so much to be thankful for. Sophia is such a blessing and I love her more than words. Today I was looking at her scar which is almost healed. Even though it is dark in color and runs from right below her neck to under her rib cage,I can't help but think ot is beautiful. I do not ever want her to be embarassed of her scar, I wan't her to always be proud of how strong she is. Her scar is like a little badge of courage and strength. She is truly my hero and I am amazed each and every day by this little girl. When she gets older I am going to share with her the ordeal she went through at such a young age and I am going to tell her that whenever she feels like she cannot do something to just look at her scar and remember what a fighter she is. This girl could accomplish anything and even though she is just four months old I know that for a fact. SO yesterday and today and for the rest of my life I will thank God for this blessing. I will always have something to be thankful for.

My Miracle :)

Sophia has done so well since we have been home. She acts like nothing ever happened. She is such a strong girl. And such a big girl now weighing almost 14 pounds! She is almost four months old and I can't believe how time keeps flying by. She has such a funny personality and quite a temper (like mommy) I love her to pieces! Hope everyone enjoys these photos. In one of them I believe you can see her scar she just loves to lift up her shirt and show it off!

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

Change in surgery date

The surgeon's office called on Friday to let me know Sophia's surgery has been canceled. He said that she was doing so well that they want to give her one more month to grow and put on a little more wieght. She is now 11 pounds 4 ounces! A lot of heart babies have trouble gaining weight but not our Sophia. So the new surgery date is November 4th. I feel really good about waiting another month even though I cannot wait to have this surgery behind us. The surgeon also said that if Sophia waits another month she will most likely have a shorter hospital stay which is a plus! We are also meeting with the plastic surgeon on October 5th to take a look at the skin tag on Sophia's nose. The skin tag is going to be removed during heart surgery after her heart is all taken care of, this way she won't have to be put out again to remove the tag. I will be glad when that is gone as well because she is discovering her hands and how usefull they can be (she grabs everything blankets, hair, etc.) so i really want to remove the skin tag before she grabs ahold of it. This month we are looking forward to Halloween! Halloween is one of my favorite holidays. Sophia is going to be a ladybug and we already have her costume. We are also looking forward to a visit from Auntie Lyndsey and Jacob!Please continue to pray for our baby girl!

Sophia's Baptism

Last night Sophia was baptized at our church and she did such a good job. She didn't cry during the ceremony.She looked absolutely adorable in her dIess! Although it was a happy occasion it was actually a hard night for me. I need to make a confession and I figure this is a good place to do it considering no matter how hard I try I cannot speak the words. When I first found out that Sophia would be born with a heart condition of course I was upset and I cried but only for about a day I figured instead of being upset I had to learn everything there is to know about this condition I had never even heard of. I felt that my time would be better spent researching surgeons and hospitals then being depressed about a situation I had no control over, so for the remainder of my pregnancy I did just that. When Sophia was born everything changed. Seeing this beautiful baby so innocent and helpless breaks my heart over and over each day. There is no ammount of love that could compare to my love for Sophia. As she grows and changes I fall more in love with her and the aching in my heart gets stronger. It was not until the day that I recieved the date of her surgery that I actually felt this was real. Infact each time I had another growth ultrasound I imagined the doctor telling me that somehow Sophia was going to be born normal, that it was a miracle and she would not need the surgery but that did not happen and now that the date of her surgery is real and it exists I am internally torn to shreds. Sometimes I ask God why, why my daughter but I know that is not a fair question and life simply does not work out the way we want it to all of the time. I find myself eachday trying to cherish the moments that Sophia smiles or makes a cute noise and trying to put the negative out of my mind. My confession is that I have chosen to be numb to this situation on the outside. I know it is probably not healthy but my feelings are too painful to face. Last night I tried to express my fears to Kyle about the surgery and I ended up sobbing so hard I could not catch my breath. I prefer to blink away the tears when they start to fill my eyes and this has been successful eveytime except about three. I do not want my mother to see the pain that is tearing apart my heart because I know it will only cause her to worry. I do not want my sister to see the tears that fall from my cheeks when I am alone because I know that this would cause her to cry. I do not want Kyle to see how afraid I am of Sophia's surgery, so I keep myself together as much as I can but I just needed to get it out. I AM AFRAID. I AM TERRIFIED. But my daughter is strong and so is God. For now my feelings are better left pushed to the back of my mind while I dread October 7th, the day I will be foced to face them.

Sophia's Surgery Update

Yesterday I recieved a letter in the mail with Sophia's surgery date on it, October 7th 2010. The first thing I thought when I saw it was that 7 is my lucky number. My birthday is February 7th, in sports I was always number 7, in elementary school my class number was always 7, it has just always been my lucky number. Well this year I was induced on July 7th and things couldn't have gone any better. My baby was as healthy as could be, she only had to stay in the NICU for 24 hours and my labor was a piece of cake and went by so fast. The surgeon told me that Sophia would have her surgery in mid October but the 7th is not mid it is begining. Some would think of it as coincedence but I just got a feeling when I saw the date and I believe that this in some way is God telling me that everything is going to be alright. This whole process is so much harder than I ever imagined but I can already see that Sophia is so strong. Another heart mom told me "He will protect them when you cannot," and so I am putting all my faith in God and that is where I find peace. On a lighter note my baby girl is being baptized this Tuesday night and I am so excited! My Aunt Carolanne and Uncle Paul bought her a beautiful dress and I cannot wait to put it on her. I will post pictures Tuesday or Wednesday until then Please keep us in your prayers!

My smiley girl

Sophia and Hazel

Cardiologist Appointment

Yesterday Sophia had her second cardiologist checkup and things are looking good. Sophia now weighs 8 pounds 6.5 ounces which is very important since some heart babies have trouble gaining weight. She is growing so well and gaining about an ounce per day. Her oxygen saturation was 99% which is also great news! Sometime in the next couple of weeks I will be meeting with her surgeon and possibly scheduling her surgery. We are now shooting for somewhere between October and November for surgery to try and get her well before cold and flu season hits. As for right now she is doing wonderful :)

Bath time

Sleepy Baby

Sophia's favorite sleeping position is to sleep with her little arms above her head. If we try and bundle her up and she cannot move her arms she gets SO MAD.

Sophia's Walk

Sophia's first walk! And all she did was stare at daddy the WHOLE time.

My precious baby girl

Sophia Grace is here!

After about 14 hours of labor, on July 8th 2010 at 2:07pm our beautiful baby girl Sophia Grace made her way into the world. She weighed 6 pounds 13 ounces and was 20 inches long. When she came out Sophia was a tiny bit blue so the NICU nurses took her into the hall to take a better look but she pinked up very quickly and was breathing fine on her own. I got to hold her for a couple minutes but then she was admitted to the NICU where her daddy kept a very close eye on her and stayed with her for all of her tests. The Cardiologist did an echocardiogram shortly after Sophia's birth and the diagnosis was exactly what we had anticipated. Sophia's pulmonary valve still looks great for a baby with TOF and her oxygen saturation is at 100 percent for now. Sophia did so well that on Friday night after one full day and night in the NICU she was released to my room. Kyle stayed up all night just watching her. He is already such a good dad! On Saturday afternoon we brought Sophia home and things are going really well. She already sleeps great during the night and she only cries when she is hungry or getting her clothes changed. We love our little girl so much! She is truly an angel.