see that paci? it's called a gumdrop...and not their not easy to find. thank goodness for ebay!
the above picture is a rare one...she doesn't have her scar just yet...
want to share our story, for those you that do not know it. I had a wonderful pregnancy; I ate well, I drank water ALL the time, I kept training martial arts( hey, it was safe) and I even taught my children's brown belt class the night before I delivered! My students were children, and they were understanding when I said I couldn't kick above my waist, but did expect them too! lol. I miss those kids. They will always remain in my heart. Anyway, my labor and delivery was quick-too quick to get the epidural! We spent the night with two pediatricians arguing about Torie's heart. 1 thought it was "just a heart murmur, she'll out grow it" and the 2nd saying it was more. As many times as we asked to see Torie, they kept saying no-you can after the tests are done. I FINALLY got to see her around 4am-after her 7:49 pm birth! yes, it took that long before I could see her. I was more than scared-I was terrified. I had no idea what to ask, to say or do. Finally a ped cardiologist came in around 6 and said "your daughter has Tetralogoy of Fallot and will need open heart surgery soon. I am sending you to Vanderbilt." It was that simple for him. I sat in my bed watching him walk out of the room. I remember looking at Paul and thinking to myself "what have I done? What did I do wrong?" I bawled-a lot. Paul is a wonderful husband who held me and let me cry. While neither one of us truly understood what was happening yet, we knew we had God and each other.
There I sat in my bed, with the doctor walking out of the room leaving me with nothing. NOTHING! No explanation, no answers, no help-just a few simple sentences ending "sending her to Vanderbilt" I was so scared. I didn't think I would ever feel that scared again! The nurse practitioner from Vandy came later. With a quick medical explanation that left me with more questions than answers, she gave me a t shirt for Torie that said " I took my first ride on Angel" How cute. I got one last look at my baby and my family and I walked with her to Angel.
Here, I want to add a small story about another baby, a baby boy. He too rode Angel to vandy. I watched his poor family walk down the hall in front of us-they were all crying and the priest and nun were walking with them. This baby boy was gray. He was doing very bad. I learned the next day(Monday) that he did not make it home. That family lost their baby boy. I wish them the very best in life.
When Paul & I arrived at Vandy, we were greeted by the worlds best nurse ever-try to disagree me-I dare you! Judith was the perfect 1st nurse for us, she took us straight to our baby. It was different than I expected. But at the same time, I had no idea what to expect. There was my lil girl, with ivs and wires going everywhere. Judith gingerly picked up Torie and handed her to me. I sit here smiling at myself because I remember thinking " what do I do now?" LOL. I am such a first time mom! I sat and rocked my baby. Paul and I rubbed her hair, hands, fingers and toes. Our pretty little girl looked so perfect-except the blue around her lips. What?!? I almost panicked. Paul quietly said Judith's name and she stepped into our little cubby area. That NICU is so small but efficient! She took Torie from me and gently explained that was part of her heart problem. Paul & I both looked confused I am sure. So Nurse Judith explained it to us a bit more. Then two of the finest doctors ever walked into our cubby and into our lives. Dr David Parra and Dr Greg Fleming.
There I sat in my bed, with the doctor walking out of the room leaving me with nothing. NOTHING! No explanation, no answers, no help-just a few simple sentences ending "sending her to Vanderbilt" I was so scared. I didn't think I would ever feel that scared again! The nurse practitioner from Vandy came later. With a quick medical explanation that left me with more questions than answers, she gave me a t shirt for Torie that said " I took my first ride on Angel" How cute. I got one last look at my baby and my family and I walked with her to Angel.
Here, I want to add a small story about another baby, a baby boy. He too rode Angel to vandy. I watched his poor family walk down the hall in front of us-they were all crying and the priest and nun were walking with them. This baby boy was gray. He was doing very bad. I learned the next day(Monday) that he did not make it home. That family lost their baby boy. I wish them the very best in life.
When Paul & I arrived at Vandy, we were greeted by the worlds best nurse ever-try to disagree me-I dare you! Judith was the perfect 1st nurse for us, she took us straight to our baby. It was different than I expected. But at the same time, I had no idea what to expect. There was my lil girl, with ivs and wires going everywhere. Judith gingerly picked up Torie and handed her to me. I sit here smiling at myself because I remember thinking " what do I do now?" LOL. I am such a first time mom! I sat and rocked my baby. Paul and I rubbed her hair, hands, fingers and toes. Our pretty little girl looked so perfect-except the blue around her lips. What?!? I almost panicked. Paul quietly said Judith's name and she stepped into our little cubby area. That NICU is so small but efficient! She took Torie from me and gently explained that was part of her heart problem. Paul & I both looked confused I am sure. So Nurse Judith explained it to us a bit more. Then two of the finest doctors ever walked into our cubby and into our lives. Dr David Parra and Dr Greg Fleming.
This is Dr Parra.
Dr Parra is a cardiologist and Dr Fleming is a resident. Judith took care of my baby while Dr Parra explained Torie's heart and how it could be repaired. Repaired but not cured?? What? No, there is not cure for heart defects, you can only treat the symptoms. Dr Parra quickly told me that her heart defect had nothing to do with anything I had ate or drank during my pregnancy. I was just as quick to point out that I had never drank anything worse than sun drop! I think I gave the poor doctor my entire health history in 30 words or less! I have never done drugs/smoked/drank and I work out as much as possible. But it did make me feel better, just knowing that someone knew it was not my fault. The next day was Monday. yep that was all sunday-Torie's 2nd day of life!
Monday we moved up to the card floor. Torie's ivs came out and she was on room air! Woo Hoo! even better, as soon as I walked into her room the nurse had just finished putting a teen tiny shirt on Torie. I told her a quick story of how I always handed my niece and nephew back to Kim when they needed changing saying "here ya go mom!" well, wouldn't you know that nurse smiled and said " Here you go Mom!" I felt myself beam. lol. It still makes me smile. Mom-my new name. Paul and I spent the next 24 hrs on the card floor.
Up there, we had our own room that had everything a hotel room has-minus a full size bed. But you learn to sleep on that couch somehow. We spent most of Monday in the room with Torie, neither one of us wanted to leave. So we minimized our trips to the dinning area. I rocked Torie so much. Even though she did not have ivs, she did have monitors stuck to her little body everywhere. There was a monitor for her blood pressure, her heart rate, her O2 saturation, how many breathes she took per minute-still so many wires! I remember her 1st bottle she took all of 7 cc! That was it. The nurses and doctors kept saying she needed to eat more. Throughout the day she gradually moved up to 10cc and pretty well stuck to that. Somewhere during Monday night, she actually drank almost 15cc and were all excited. I know that may seem like no big deal, but it is. Dr Parra also told us that they had drew Torie's blood on Sunday to do a FISH test, to check for chromosome problems. I didn't have a family history and neither did Paul, so why worry right? We made it through Monday night into Tuesday morning. My sister called saying she and my mom were coming to visit. I was scared for them to see Torie with wires everywhere. I did not understand everything, so how was I going to explain them? well, Dr Parra came in and gave us great news-Torie was stable and there was nothing they were doing that we could not do at home...so we were going home around lunch! Paul and I were so excited! I called Kim, but they were already on the road. Paul had already packed because he had to be at work that afternoon, so I quickly threw all of my stuff into bags and Paul loaded them into the truck. it was just a matter of waiting at this point. My family got there and they each held Torie for a couple of minutes. Then something else happened. A social worker came in and TOLD Torie's full diagnosis IN FRONT OF MY MOM. My poor mom does not handle things like this well, and I actually thought she was going to fall out of her chair. I was torn-I actually did not know what to say. This social work explained that Torie will always have congenital heart disease and we should consider putting her on disability because that is the life she will lead. Ok, let me say right here I have no opinion on anyone on ssi, but it really threw me off when she said to put a baby on it. I had never heard of that-aren't all babies incapable to doing things to an extent? Little did I know what she really meant. That lesson was to come later. So the worker leaves and the nurse is taking off all the wires to Torie's monitors. We are discharged with detailed instructions:
Monday we moved up to the card floor. Torie's ivs came out and she was on room air! Woo Hoo! even better, as soon as I walked into her room the nurse had just finished putting a teen tiny shirt on Torie. I told her a quick story of how I always handed my niece and nephew back to Kim when they needed changing saying "here ya go mom!" well, wouldn't you know that nurse smiled and said " Here you go Mom!" I felt myself beam. lol. It still makes me smile. Mom-my new name. Paul and I spent the next 24 hrs on the card floor.
Up there, we had our own room that had everything a hotel room has-minus a full size bed. But you learn to sleep on that couch somehow. We spent most of Monday in the room with Torie, neither one of us wanted to leave. So we minimized our trips to the dinning area. I rocked Torie so much. Even though she did not have ivs, she did have monitors stuck to her little body everywhere. There was a monitor for her blood pressure, her heart rate, her O2 saturation, how many breathes she took per minute-still so many wires! I remember her 1st bottle she took all of 7 cc! That was it. The nurses and doctors kept saying she needed to eat more. Throughout the day she gradually moved up to 10cc and pretty well stuck to that. Somewhere during Monday night, she actually drank almost 15cc and were all excited. I know that may seem like no big deal, but it is. Dr Parra also told us that they had drew Torie's blood on Sunday to do a FISH test, to check for chromosome problems. I didn't have a family history and neither did Paul, so why worry right? We made it through Monday night into Tuesday morning. My sister called saying she and my mom were coming to visit. I was scared for them to see Torie with wires everywhere. I did not understand everything, so how was I going to explain them? well, Dr Parra came in and gave us great news-Torie was stable and there was nothing they were doing that we could not do at home...so we were going home around lunch! Paul and I were so excited! I called Kim, but they were already on the road. Paul had already packed because he had to be at work that afternoon, so I quickly threw all of my stuff into bags and Paul loaded them into the truck. it was just a matter of waiting at this point. My family got there and they each held Torie for a couple of minutes. Then something else happened. A social worker came in and TOLD Torie's full diagnosis IN FRONT OF MY MOM. My poor mom does not handle things like this well, and I actually thought she was going to fall out of her chair. I was torn-I actually did not know what to say. This social work explained that Torie will always have congenital heart disease and we should consider putting her on disability because that is the life she will lead. Ok, let me say right here I have no opinion on anyone on ssi, but it really threw me off when she said to put a baby on it. I had never heard of that-aren't all babies incapable to doing things to an extent? Little did I know what she really meant. That lesson was to come later. So the worker leaves and the nurse is taking off all the wires to Torie's monitors. We are discharged with detailed instructions:
DO NOT BY ANY MEANS LET HER CRY-AT ALL.
SHE COULD HAVE A TET SPELL(turning blue from a lack of O2) PASS OUT OR POSSIBLY DIE.
DO MAKE SURE SHE EATS EVERY 2 HOURS NO MATTER WHAT.
CALL 911 WITH ANY PROBLEMS
umm, gee and your sending me home like this?!? Thanks.We packed our trucks and headed home. When we arrived Paul had to leave for work, so it was just us two girls. I took Torie to her room and showed her the crib and her toys. But we snuggled into the couch, lol. I remember making a two ounce bottle, and only 1/2 being ate.Over the next several weeks we focused on Torie eating. She was so little. Kim drove Torie and me to Vandy on 9-11 for a card check up. Torie was in the 3% for wt! That's when Dr Parra put Torie on increased calories. He wanted her to have open heart surgery before rsv, cold and flu season came. I asked what happened if she was just small like me and didn't grow a whole lot my then. another lesson a learned later. So, we saw a nutritionist and learned how to make increased calories in formula. We con’t with visits to Dr Parra every month. At our November visit he said we needed to set up a surgery date. O my God! This is really happening. They are going to take my baby from me and do open heart surgery on her! Can't their be another way? Something else we can do? That doctor made me cry-right there in his office.
Dr Parra told us that he wanted Torie to have her repair before flu season. Torie was still very small and wearing preemies even though she was 3 1/2 months old. It was a debate-she needed the repair but was she big enough? The plan was to pick a surgeon, set a date and pre op and go for it. So, Paul and I met DR David Bichell:
Dr Parra told us that he wanted Torie to have her repair before flu season. Torie was still very small and wearing preemies even though she was 3 1/2 months old. It was a debate-she needed the repair but was she big enough? The plan was to pick a surgeon, set a date and pre op and go for it. So, Paul and I met DR David Bichell:
This man holds all of my hopes and dreams in his hands-he better have strong hands! Actually, Dr Bichell has awesome hands-you should see him draw a picture of a heart!
We still have the drawing he did of Torie's heart-it's in her hand dandy notebook with everything else. He went into great detail of what was wrong: 1 vsd-a hole in her heart preventing O2 from going through her body. 2. a muscle that is too thick and is putting extra work on a valve. 3. That same valve is not letting blood flow thru correctly, and must be replaced with a cow valve. A cow valve? I wanted to throw up! Was this really happening?!? Omy, what DID I do for this to happen?? Dr Bichell went on to say the repair would take 4-6 hrs.
On to pre admitting: Kim drove us again. Bless her heart-I could never have a better sister! We got to spend the entire day at Vandy with Carol, Dr Bichell's nurse. She is a very sweet lady! We went through an ekg, echocardiogram and chest x-ray. On Sunday I got a phone call from Dr Bichell-Torie's echo showed a main artery lying over her vsd-imagine a water hose lying across a hole in the ground. He would not be able to do her repair after all. Torie needed to grow more.
Torie was still small, but slowly starting to grow by mid Dec. She 4 1/2 months old and wearing 0-3 mo clothes...I started baby food-fruits, and cereal. She LOVED the food! As soon as she saw the spoon for the first time, she opened her little mouth and leaned forward, lol. It was too cute. So, we followed up with Dr Parra in Jan 2007 for her next cardiac visit. Torie O2 was 99 and her vitals were ok. Her bp was off a little so we began our first medicine-4 times a day. We were finally sleeping most of the night, and now we had to start waking her! Well, Dr Parra said that since Torie was doing so well, that we could skip Feb and come back in March. I remember looking at him like he was crazy. He reminded me I could call if needed, but he felt she would be okay....lesson learned later(again!) By this time we did know Torie had Di George Syndrome-a deletion of chromosome 22. Torie actually only has a small deletion-the short arm of chromosome 22. This syndrome affects every person differently. Some have severe symptoms and some people do not have any at all. We went through an immunologist and learned that Torie's immune system is weak, but is within normal limits. THANK GOD! so, our next visit is March.
So, we skipped February's cardiac visit. Torie's O2 had been good, so I had this hope in my heart and in my head that maybe, just maybe, we wouldn't have to do the repair. Maybe she would just stay stable. All mom's have that hope right? At least all good mom's do! So I got a job offer to work for Dr Good again-he moved to Tullahoma! I was supper excited to have a family friend move back, and to have my old job again! Kim immediately said she would watch Torie all day so I could work. Such a blessing she is! So I start work at the end of Feb. Torie has her card appt in the 1st wk or so of March. That day was hell. I am not going to lie about it-it scared me so deep down inside that I did not know what to do...remember when I said that I never thought I could be as scared as I was at her birth-this day proved me wrong! The worse nurse ever was trying to get Torie's vitals. Torie was restless and just wanted her bottle and a nap. This lady kept going until Torie did exactly what she was not supposed to do-CRY. And boy did she every cry! I kept trying to calm her, but since her back was to me, she could not see me and it was not working. A few other nurses came in, trying to help get vitals and calm her. They finally gave up and I turned Torie to me and held her. The nurse put us in an exam room and I gave Torie her bottle. She quickly went to sleep and looked so peaceful. Dr Parra asked for an O2 monitor to be brought in a left on her. I just thought it was to get a good reading, since she had cried so much. He came back into the room a few minutes later and said " That was a tet spell. Dr Bichell is out of town but I put her on his surgery schedule for next Wednesday." I broke down. There is no other way to describe what I did. I looked at my baby and cried-HARD. Kim had tears in her eyes but did her best to stay composed. Since I could not see Torie, Dr Parra explained that she had turned blue and her O2 had dropped really bad...later-after the ohs, Kim told me it had actually dropped into the 60's!! From being so stable in Jan to this?!? I have never felt so bad for Dr Parra in my life-he made me cry and I could see in his face that he hated that part of his job. We made our way through that appt someway, somehow. But the next week Dr Bichell's nurse called stating we had to wait another wk and a half because Dr Bichell was going to be out of town. This man travels-a lot! lol. So, we are officially moved to pre admit on March 26, 2007. Open Heart Surgery was set for 7am on March 27, 2007. Again, I was so scared, but yet I had even more anger in me.
We still have the drawing he did of Torie's heart-it's in her hand dandy notebook with everything else. He went into great detail of what was wrong: 1 vsd-a hole in her heart preventing O2 from going through her body. 2. a muscle that is too thick and is putting extra work on a valve. 3. That same valve is not letting blood flow thru correctly, and must be replaced with a cow valve. A cow valve? I wanted to throw up! Was this really happening?!? Omy, what DID I do for this to happen?? Dr Bichell went on to say the repair would take 4-6 hrs.
On to pre admitting: Kim drove us again. Bless her heart-I could never have a better sister! We got to spend the entire day at Vandy with Carol, Dr Bichell's nurse. She is a very sweet lady! We went through an ekg, echocardiogram and chest x-ray. On Sunday I got a phone call from Dr Bichell-Torie's echo showed a main artery lying over her vsd-imagine a water hose lying across a hole in the ground. He would not be able to do her repair after all. Torie needed to grow more.
Torie was still small, but slowly starting to grow by mid Dec. She 4 1/2 months old and wearing 0-3 mo clothes...I started baby food-fruits, and cereal. She LOVED the food! As soon as she saw the spoon for the first time, she opened her little mouth and leaned forward, lol. It was too cute. So, we followed up with Dr Parra in Jan 2007 for her next cardiac visit. Torie O2 was 99 and her vitals were ok. Her bp was off a little so we began our first medicine-4 times a day. We were finally sleeping most of the night, and now we had to start waking her! Well, Dr Parra said that since Torie was doing so well, that we could skip Feb and come back in March. I remember looking at him like he was crazy. He reminded me I could call if needed, but he felt she would be okay....lesson learned later(again!) By this time we did know Torie had Di George Syndrome-a deletion of chromosome 22. Torie actually only has a small deletion-the short arm of chromosome 22. This syndrome affects every person differently. Some have severe symptoms and some people do not have any at all. We went through an immunologist and learned that Torie's immune system is weak, but is within normal limits. THANK GOD! so, our next visit is March.
So, we skipped February's cardiac visit. Torie's O2 had been good, so I had this hope in my heart and in my head that maybe, just maybe, we wouldn't have to do the repair. Maybe she would just stay stable. All mom's have that hope right? At least all good mom's do! So I got a job offer to work for Dr Good again-he moved to Tullahoma! I was supper excited to have a family friend move back, and to have my old job again! Kim immediately said she would watch Torie all day so I could work. Such a blessing she is! So I start work at the end of Feb. Torie has her card appt in the 1st wk or so of March. That day was hell. I am not going to lie about it-it scared me so deep down inside that I did not know what to do...remember when I said that I never thought I could be as scared as I was at her birth-this day proved me wrong! The worse nurse ever was trying to get Torie's vitals. Torie was restless and just wanted her bottle and a nap. This lady kept going until Torie did exactly what she was not supposed to do-CRY. And boy did she every cry! I kept trying to calm her, but since her back was to me, she could not see me and it was not working. A few other nurses came in, trying to help get vitals and calm her. They finally gave up and I turned Torie to me and held her. The nurse put us in an exam room and I gave Torie her bottle. She quickly went to sleep and looked so peaceful. Dr Parra asked for an O2 monitor to be brought in a left on her. I just thought it was to get a good reading, since she had cried so much. He came back into the room a few minutes later and said " That was a tet spell. Dr Bichell is out of town but I put her on his surgery schedule for next Wednesday." I broke down. There is no other way to describe what I did. I looked at my baby and cried-HARD. Kim had tears in her eyes but did her best to stay composed. Since I could not see Torie, Dr Parra explained that she had turned blue and her O2 had dropped really bad...later-after the ohs, Kim told me it had actually dropped into the 60's!! From being so stable in Jan to this?!? I have never felt so bad for Dr Parra in my life-he made me cry and I could see in his face that he hated that part of his job. We made our way through that appt someway, somehow. But the next week Dr Bichell's nurse called stating we had to wait another wk and a half because Dr Bichell was going to be out of town. This man travels-a lot! lol. So, we are officially moved to pre admit on March 26, 2007. Open Heart Surgery was set for 7am on March 27, 2007. Again, I was so scared, but yet I had even more anger in me.
See, where I had that hope that she would never need surgery, all those prayers every day, multiple times a day, family prayers, even my students and their families were praying-but at that time it seemed to be a waste because she still had to have ohs. I was so angry at God, that I stopped praying. I could not say or think a word to God. How could God do this?!? What lesson was He trying to teach me?!? and WHY did it have to be through my child, my 8 month old baby?!?
So, I was filled with anger. I could not understand what was happening or why it had to happen. She was so little and just a baby. Paul and I pushed through our fear and anger someway. I am not sure how we did it, but we did. We had to pre admit the day before the surgery, so we spent the entire Monday at Vandy. We even had one of their pagers so we could go eat while they worked on paperwork and make arrangements for us. We barely got a room at the Ronald McDonald house-we were literally about to leave vandy and drive back home for the night. I am glad we got to stay there though; we went walking that evening, just strolling along. But as night fell, I became so scared that I could not let go of Torie for anything. we had to do a pre op bath and use certain things during bath time. Torie didn't care-she loves the water no matter what! We cuddled so much that night. The next morning we made our way to the 3rd floor of the hospital. We were the first one's there, but it seemed like forever before we got started. Torie was SO hungry and wanted a bottle so badly, but I couldn't feed her. I felt bad but knew it would cancel her surgery. The nurses had to cath her to get an urine sample, and Torie faught back HARD. Poor thing. Then she went to sleep again. I was trying to let her sleep on the bed, but wanted to hold her so bad. Since she was asleep the crazy OR nurses decided it would be the perfect time to take her...I guess they were right but I wasn't ready-AT ALL. As they walked off, I burst into tears. I wanted to sit in the floor and cry. I actually felt my body crumble against Paul. Our wonderful pre op nurse gave him the tissues and told me to take all the time I needed. I really did try to compose myself, but I am not sure how well I did. At that point, I knew the next 4-6 hours were going to be hell all over again. My baby was out of my reach and I couldn't do a thing about.My family came along with a friend from karate. We all paced around the hospital-and to the pharmacy-poor Paul had woke up with pick eye!! Thanks for Dr Good and Delynne for calling in some medicine for him! So we made our back to the OR waiting area. We had received 2 calls saying how things were going. It had started off smooth.
So, I was filled with anger. I could not understand what was happening or why it had to happen. She was so little and just a baby. Paul and I pushed through our fear and anger someway. I am not sure how we did it, but we did. We had to pre admit the day before the surgery, so we spent the entire Monday at Vandy. We even had one of their pagers so we could go eat while they worked on paperwork and make arrangements for us. We barely got a room at the Ronald McDonald house-we were literally about to leave vandy and drive back home for the night. I am glad we got to stay there though; we went walking that evening, just strolling along. But as night fell, I became so scared that I could not let go of Torie for anything. we had to do a pre op bath and use certain things during bath time. Torie didn't care-she loves the water no matter what! We cuddled so much that night. The next morning we made our way to the 3rd floor of the hospital. We were the first one's there, but it seemed like forever before we got started. Torie was SO hungry and wanted a bottle so badly, but I couldn't feed her. I felt bad but knew it would cancel her surgery. The nurses had to cath her to get an urine sample, and Torie faught back HARD. Poor thing. Then she went to sleep again. I was trying to let her sleep on the bed, but wanted to hold her so bad. Since she was asleep the crazy OR nurses decided it would be the perfect time to take her...I guess they were right but I wasn't ready-AT ALL. As they walked off, I burst into tears. I wanted to sit in the floor and cry. I actually felt my body crumble against Paul. Our wonderful pre op nurse gave him the tissues and told me to take all the time I needed. I really did try to compose myself, but I am not sure how well I did. At that point, I knew the next 4-6 hours were going to be hell all over again. My baby was out of my reach and I couldn't do a thing about.My family came along with a friend from karate. We all paced around the hospital-and to the pharmacy-poor Paul had woke up with pick eye!! Thanks for Dr Good and Delynne for calling in some medicine for him! So we made our back to the OR waiting area. We had received 2 calls saying how things were going. It had started off smooth.
Then I saw him-Dr Bichell. But it had only been 3 hours-it was too soon.
"Go back! Go back in there with Victoria!" I was SCREAMING in my head. "It's too soon-go back!" I looked at Paul and he looked at me. Dr Bichell made eye contact and came over to us. I remember standing and walking toward him. He smiled. "He's smiling-that has to be good right?" He said the greatest things I have ever heard from a doctor " It was not as bad I thought. I did not have to replace the valve at all. She did well and is in recovery." I almost jumped on him then and there-but I didn't. We talked for a couple of more minutes and then sat back down. We had several hours still before we could see Torie. My goal is to help you realize what families go through. This disease kills more babies every year than the top 5 cancers COMBINE. Food for thought.
Some babies do well, while others do not. Torie's 1st night in picu was a long one. She had problems when they tried to turn off the breathing machine-she didn't start breathing. Umm, not a small problem. Not a small anything when you wake up (I was sleeping in a chair) and see a doctor beside your baby and a nursing squeezing a bad of air into your baby’s lungs. I sat straight up and they quickly realized I was awake too. The machine was quickly turned back on of course. But I am not sure when my own heart started again. The next morning was wed and I was about to booted out for shift change. But again-something was wrong. The chambers of her heart were not working together, in synch. The nurse turned on the pacer wires that were connected to her heart-basically a pace maker on the outside. As the doctors and nurse gathered around her, they were explaining to me what was happening. Paul got stuck in the hallway because it was shift change. The charge nurse came looking for me, because Paul had tried to get through and she knew I was still in Torie's room. I was standing behind her bed, out of the way, so when she came looking for me and said I needed to leave....let's just say she accepted the look I shot her and a nice nurse saying I was about to leave. The charge nurse just said okay and walked away. Um, yeah, good luck trying to make me leave then! I waited until our favorite resident said things were going to be okay. Torie was not showing any signs of distress, it was all based on what the machine was showing. Her O2 and Bp were stable, so they were not going to panic. I finally left, 15 min later. Poor Paul was outside in the hall, only getting bits through text msgs. I told him all that had happened and started crying all over again. Torie did have a good day though. She stay stable and even came off the breathing machine in the evening shift change! We survived that night and Thursday. Friday seemed to last forever because Paul was back at work. I was alone in the huge hospital with hundreds of strangers. It's odd how you can be surrounded by that many people and still be alone. Friday night around 10 we got to move up to the cardiac floor! That mean we were in a big room and I could close the door! It also meant I got a couch vs a chair to sleep on. It was nice to actually stretch out and sleep, lol. Paul came up Saturday and stayed the night. On Sunday my parents came and saw Torie. I had made them wait until her chest tubes, pacer wires and ivs were all out. At that point Torie was drinking juice and eating real food again! She was so happy to see people visit. By Monday, I was ready to leave...while everyone was supper nice, I just wanted to be at home with my family. We had a wonderful nurse named Mercedes who whispered that if Torie's O2 cont to be stable, then we were going to leave on Tuesday. Needless to say, Torie and I had a nice heart to heart! We both wanted to be home in our own beds and were tired of the hospital. So Tuesday morning while Paul was teaching day class at karate, Kim came to visit and bring us home. We were all very excited. We made a quick stop at the ped's office to get Torie's last synigus (sp?) injection. A cold or rsv was the last thing we needed! Torie did well over the next several weeks. Her energy picked up, and she cut her first tooth exactly 1 wk after leaving vandy! Torie was finally allowed to go around people! She made her first visits to karate, family and friends. It was nice to get out of the house with her. She picked up her developmental skills and had a few growth spurts.fast forwd to now, at 3 ½ yrs old she is doing very well. She knows the alphabet, colors, shapes, can count by herself, she can dress herself, and even does Karate! Right now, our biggest challenge is speech. That problem comes from both her heart problems and Di George Syndrome. Speech is a common problem for children with this syndrome. Torie loves preschool. They have done a wonderful job helping Torie learn and grow.
Now, it's time to start planning a 4th birthday party!!
We don't just celebrate her birth, it is so much more for us;
it's surviving through all this, and knowing we did it;
knowing SHE did it.
She is our daughter,
our fighter.
She is victorious-she is Victoria.
making snow angels...
my daredevil child...loves sleding, but loves to fall off the sled more!
miss attitude at Christmas.
2 comments:
She gets all her attitude from Kali (well, she looks like her, too!) :)~
Love that girl!!!
What a scary time this was, for even me. I will never forget seeing her 02 stats that appointment. It was definitely the worst appoinment of ALL of them that we went to. I can't even describe the heart wrenching feeling I felt when Dr. P said it was time. We both knew it was coming at some point, but that still didn't make the blow any easier. That was a VERY long drive hoome that day.
Then comes surgery day. Oh how pitiful she looked when you and I walked in. Such a sweet and innocent baby. She was so swollen. I was afraid to touch her. I was still afraid to hold her come discharge day-I thought I was going to hurt her. :( I will never forget how when we got you two home how she was sitting up in your lap, 5 days after surgery, as if nothing had happened. :)
She is such a great little girl. Look how far she has came!!! It is so funny to see the kids sit and fuss over who plays with her first! ;)
wow. had me in tears. love you all. and yes she got the attitude from kali... kali is full of it :)
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