What is a CHD?
by Shannon Arnold Smith
What is a CHD? You passed me in the shopping mall...(You read my faded tee)You tapped me on the shoulder...Then asked...`"What's a CHD?"I could quote terminology. ..There's stats that I could give...But I would rather share with you...A mother's perspective.What is it like to have a child with a CHD?It's Lasix,aspirin, Captopril. .. .It's wondering... Lord what's your will?...It's monitors and oxygen tanks...It's a constant reminder...to always give thanks...It's feeding tubes, calories, needed weight gain...It's the drama of eating...and yes it's insane!It's the first time I held her...(I'd waited so long)It's knowing that I need...to help her grow strong...It's making a hospital...home for awhile...It's seeing my reward...in every smile.It's checking her sats...as the feeding pump's beeping...It's knowing that there... is just no time for sleeping...It's caths,x-rays and boo boos to kiss...It's normalcy...I sometimes miss...It's asking...do her nails look blue?It's cringing inside... at what she's been through.It's dozens of call to her pediatrician. ..(She knows me by name...I'm a mom on a mission)It's winter's homebound... and hand sanitizer...It's knowing this journey...has made me much wiser.It's watching her sleeping...her breathing is steady...It's surgery day...and I'll never be ready.It's handing her over...( I'm still not prepared...)It's knowing that her heart... must be repaired...It's waiting for news...on that long stressful day...It's ...praying.. .it's hoping...that she'll be okay.It's the wonderful friends... with whom I've connected...It's the bond that we share...it was so unexpected.. .It's that long faded scar... down my child's small chest...It's touching it gently...and knowing we're blessed...It's watching her chasing...a small butterfly...It's the moment I realized...I've stopped asking...why?It's the snowflakes that fall...on a cold winter's day...(They remind me of those...who aren't with us today)It's a brave little boy...who loved Thomas the train...Or a special heart bear...or a frog in the rain....It's the need to remember...we are all in this plight....It's their lives that remind us... we still need to fight!It's in pushing ahead amidst every sorrow...It is finding the strength to have hope for tomorrow.And no...we'll never be the same...It's changed our family...This is what we face each day...This is...a CHD
Monday, February 15, 2010
Sunday, February 14, 2010
A poem for the day!
I Corinthians 13
Valentine's Day is a day of love,
For showing that we care,
And if we read the Bible,
God describes love there:
If we speak like celestial angels
From heaven up above,
All our words mean nothing
If we don’t have Christian love.
Love is patient, love is kind;
It doesn’t brag or boast;
Love conquers pride and envy;
It is never self-engrossed.
Love is not rude or angry;
Forgiveness counters wrong;
Love stays away from evil;
It sings a truthful song.
Love is full of trust and hope;
It always perseveres;
Love never fails; It’s faithful;
To the Bible it adheres.
And if you give this kind of love
To your special Valentine,
You’ll be loving right in harmony
With God’s own sweet design.
By Joanna Fuchs
Valentine's Day is a day of love,
For showing that we care,
And if we read the Bible,
God describes love there:
If we speak like celestial angels
From heaven up above,
All our words mean nothing
If we don’t have Christian love.
Love is patient, love is kind;
It doesn’t brag or boast;
Love conquers pride and envy;
It is never self-engrossed.
Love is not rude or angry;
Forgiveness counters wrong;
Love stays away from evil;
It sings a truthful song.
Love is full of trust and hope;
It always perseveres;
Love never fails; It’s faithful;
To the Bible it adheres.
And if you give this kind of love
To your special Valentine,
You’ll be loving right in harmony
With God’s own sweet design.
By Joanna Fuchs
Saturday, February 13, 2010
From day 1...
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.
Somewhere…someplace… today…
A family is waiting to hear… I
s something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see her face… They haven’t got to hold her yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine. Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving… His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD. Today…
for just a moment… Stop…remember…reflect…
Make time to tell someone you know… “I’ve been changed by a heart defect”.
Author – Stephanie Husted
A family is waiting to hear… I
s something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see her face… They haven’t got to hold her yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine. Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving… His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD. Today…
for just a moment… Stop…remember…reflect…
Make time to tell someone you know… “I’ve been changed by a heart defect”.
Author – Stephanie Husted
Thursday, February 11, 2010
CHIN
This site has a ton of information, stories and resources for families. Please visit it, and support them, as the run off donations. Thanks!!
Wednesday, February 10, 2010
Please welcome Jordan Francis!
On April 16, 2009 I delivered a 8 lb 16 oz 21 inches baby boy, Jordan Francis via c-section. My OB found meconium during the c-section, but luckily Jordan's APGAR was good. The night after his birth the nurses noticed that he was breathing rapidly and the doctor decided to place him in the NICU for observation. After a couple hours of being in the NICU the doctor decided to keep him there for further monitoring and tests. The did labs and a chest xray and it turned out that he might have had meconium aspiration pneumonia. While he was in the NICU, they heard he had a heart murmur, an echocardiogram was done and they saw a moderate sized VSD. The doctor said that he just needed a cardiologist follow up after he goes home from the NICU...little did we know that his VSD will affect us more than they initially thought. He stayed in the NICU for 3 1/2 weeks...battling the meconium aspiration pneumonia and at 2 weeks old his calcium dropped. It was actually the day before he was scheduled for discharge. Luckily, the great nurses at Kaiser Permanente Baldwin Park, CA NICU knew something wasn't right with Jordan and asked the doctor to do some labs. It turned out his calcium dropped to a really low level. At this point, the doctors felt there was something more going on than just his pneumonia and did a genetic test for DiGeorge Syndrome because of his CHD and he also had some renal issues (hydronephrosis with urine reflux) plus the hypocalcemia. We also had some feeding issues because Jordan wouldn't eat well. The nurses and I noticed that he fed very different. It was like he was gasping and gulping his milk and now I understand that it's all due to his CHD. Once they stabilized his calcium levels, we were discharged with several follow-ups. We got the results of the genetic testing about a week after he was discharged and it showed up with a deletion of the chromosome 22, which is indicative of DiGeorge Syndrome. I prepared myself for the news and took it full stride hoping that Jordan would only have the mild form of it. On November 24, 2009 after several echocardiograms and consults with our cardiologist, Dr. Brian Fagan, he decided that Jordan was not growing and he was falling below the growth curve. Dr. Fagan then decided it was best that we consult with the cardiothoracic surgeon, Dr. Cynthia Herrington at Children's Hospital Los Angeles for a VSD repair. We met with Dr. Herrington and she discussed the procedure and what to expect. The OHS was scheduled for January 6, 2010. I dreaded the new year because I knew it would mean that Jordan's OHS was just around the corner. I feared the worst. With many prayers, Jordan recovered very rapidly from his OHS with no complications. According to Dr. Herrington, the surgery went "beautifully." I was so glad. We just met with Dr. Fagan and we are gradually taking him off his Lasix and stopping the Enalapril. Jordan's CHD was corrected and he's doing well. He does have some catching up to do so far as his growth, but that will be done in no time. He eats much better and is so much alert. He has so much more energy compared to before. I do notice some developmental delay e.g. he doesn't sit up or hold his head yet , but I know he will reach those milestones a little later due to his DiGeorge Syndrome. Jordan is the angel in my life and I am so blessed to have him.
Thanks, Sonna, for emailing me this well written story and thanks for sharing with us!!
I feel blessed that other people that I have only "met" online are so willing to share with us, through my blog. God does wonderful things, doesn't he?
Thanks, Sonna, for emailing me this well written story and thanks for sharing with us!!
I feel blessed that other people that I have only "met" online are so willing to share with us, through my blog. God does wonderful things, doesn't he?
Tuesday, February 9, 2010
Talia's Story
What a cute princess!! This is the second story for your to read. I have only copied recent things, including her surgery. Please visit her blog to read how this beautiful little girl has grown!
Miss Talia is a cute & sassy CHD warriorette that came in to the world on May 5th, 2009 pink and screaming! She was diagnosed with pulmonary atresia, hypoplastic tricuspid valve and hypoplastic right ventricle while she was in-utero at 20 weeks. At 29 weeks in-utero, we went to Boston to Brigham & Womens Hospital and Boston Children's Hospital and had fetal intervention done to correct the pulmonary valve. She was the 11th baby to have this experimental surgery performed on. They took a needle and went in thru my stomach and in to Talia's tiny chest and opened up her pulmonary valve. The surgery was a success- however- a month later we found out that the bloodflow going thru her pulmonary valve had narrowed- and her diagnosis became pulmonary stenosis. Miss Talia is a brave and strong little girl. She's had 3 heart catheters, a BT shunt operation at 2 weeks old and the Bi-directional Glenn at 4 months. Watch for updates on Talia's life journey!
Updateposted on 01/21/2010
Miss Talia had her appt. with the heart surgeon today and it went well. They did an x-ray it was clear. They checked her oxygen saturations and they are at 99-100 where it should be! Yay! They weighed her and she is now at 16 lbs. 1 oz. so she's finally gained her weight back! She is able to do tummy time now and will start doing physical therapy again next week. Miss Talia has started to hold her own bottle and she is able to touch her feet and pull her socks off. We still have to work on sitting up by herself- but I think she will be doing that in no time! She now likes her exercauser and even though her feet dangle because she's too short- she doesn't seem to mind it!
Talia Updateposted on 01/16/2010
Talia had a pretty good week being back home. She went back to daycare this week and she got to see her friends William, Dillon and Anne that she missed! They missed her as well from what I heard! Dillon asked everyday if he was going to get to see Baby Talia or not. Wednesday morning, Talia had an appointment with her pediatrician for a post-surgery check up. He told us that we need to put an extra scoop of formula in her milk so she can get more calories. Talia also got an x-ray done and she had a bit of fluid in her lungs- but he increased her lasiks to 3 times a day for 2 days and that took care of it. Talia has been in a great mood- she's very happy. She gave us a bit of a scare this week- after Wednesday- she kinda stopped eating as much and we couldn't figure out the problem. I called the cardiologist yesterday and he said it was most likely not heart related since she is in a good mood and shows no other signs or symptoms. Then I called the pediatrician and his recommendation was to take her to the emergency room to check her out. We did not take her to the emergency room- instead- I made a normal bottle for her- without the extra scoop of formula and she drank it like nothing- so the problem was the extra scoop of formula in her milk. It must have been too thick for her or just didn't taste very good. I don't think the ER would have ever figured that out.Talia got to spend Friday nite with her cousin Brian! She had alot of fun watching soccer with him! Next week, talia has a check up with the heart surgeon so I'll have another updated then. Thanks again everybody for all the thoughts and prayers!
Talia Gets to Come Home!posted on 01/09/2010
Miss Talia gets to come home today! Yay! She had an echo yesterday and it looked good. She was feeling alot better yesterday and has started to eat better- she still needs to eat more but she's eating a good amount so she can come home. Grandma & Grandpa Krumbach are up visiting today and its Grandpa's birthday- so this will make his birthday extra special! Talia will be going home on her lasiks to keep the fluid off her heart and also the amioderone which will help with her irregular heart beat. Otherwise- we just have the usual precautions like every other time she's had surgery. She will be able to do tummy time in about 2 weeks.Thanks again for all your thoughts and prayers! They've helped us out so much! We love you all!
Miss Talia had her appt. with the heart surgeon today and it went well. They did an x-ray it was clear. They checked her oxygen saturations and they are at 99-100 where it should be! Yay! They weighed her and she is now at 16 lbs. 1 oz. so she's finally gained her weight back! She is able to do tummy time now and will start doing physical therapy again next week. Miss Talia has started to hold her own bottle and she is able to touch her feet and pull her socks off. We still have to work on sitting up by herself- but I think she will be doing that in no time! She now likes her exercauser and even though her feet dangle because she's too short- she doesn't seem to mind it!
Talia Updateposted on 01/16/2010
Talia had a pretty good week being back home. She went back to daycare this week and she got to see her friends William, Dillon and Anne that she missed! They missed her as well from what I heard! Dillon asked everyday if he was going to get to see Baby Talia or not. Wednesday morning, Talia had an appointment with her pediatrician for a post-surgery check up. He told us that we need to put an extra scoop of formula in her milk so she can get more calories. Talia also got an x-ray done and she had a bit of fluid in her lungs- but he increased her lasiks to 3 times a day for 2 days and that took care of it. Talia has been in a great mood- she's very happy. She gave us a bit of a scare this week- after Wednesday- she kinda stopped eating as much and we couldn't figure out the problem. I called the cardiologist yesterday and he said it was most likely not heart related since she is in a good mood and shows no other signs or symptoms. Then I called the pediatrician and his recommendation was to take her to the emergency room to check her out. We did not take her to the emergency room- instead- I made a normal bottle for her- without the extra scoop of formula and she drank it like nothing- so the problem was the extra scoop of formula in her milk. It must have been too thick for her or just didn't taste very good. I don't think the ER would have ever figured that out.Talia got to spend Friday nite with her cousin Brian! She had alot of fun watching soccer with him! Next week, talia has a check up with the heart surgeon so I'll have another updated then. Thanks again everybody for all the thoughts and prayers!
Talia Gets to Come Home!posted on 01/09/2010
Miss Talia gets to come home today! Yay! She had an echo yesterday and it looked good. She was feeling alot better yesterday and has started to eat better- she still needs to eat more but she's eating a good amount so she can come home. Grandma & Grandpa Krumbach are up visiting today and its Grandpa's birthday- so this will make his birthday extra special! Talia will be going home on her lasiks to keep the fluid off her heart and also the amioderone which will help with her irregular heart beat. Otherwise- we just have the usual precautions like every other time she's had surgery. She will be able to do tummy time in about 2 weeks.Thanks again for all your thoughts and prayers! They've helped us out so much! We love you all!
Talia Updateposted on 01/07/2010
Miss Talia has been in a recovery room for the last 2 days. She is doing ok- she has most of her ivs and lines out. Her irregular heart rate comes and goes and they give her amioderone twice a day orally for that. She is also taking lasiks twice daily as well. She got the ng tube taken out of her nose so she has been eating regularly since she's been up there. She didn't eat very good last nite, so I'm not sure what has caused that, but hopefully she'll start eating more so she can get that double chin back! :) Otherwise- that is all we know for now- we are unsure of when she will get out. Thanks again for all your thoughts and prayers! Also- if you haven't gotten your Miss Talia pendant or keychain yet- here is a link where you can get them online with a paypal account- http://misstalianecklace.tumblr.com/ Otherwise- if you don't have paypal and you want one- just let me know and I can get you one. You can email me at jillkrumbach@yahoo.com Thanks!
Miss Talia Updateposted on 01/05/2010
Miss Talia had a pretty uneventful weekend and she stayed pretty stable. They did an echo on Saturday morning and it didn't change at all. The Lunds had Christmas on Sat. at our house so Miss Talia had quite a few visitors and she got alot of fun gifts she can't wait to play with when she gets home! They did an echo yesterday morning and we had some confusion about it hearing different things from different people- but we got the right information last nite from the heart surgeon and the echo looked good. The bovine valve- tricuspid valve is working! The right side is working! The right atrium is a bit streched and has a bit of high pressure but it is fine where it is at because before she had this operation- the pressure on the right side was twice, if not three times as high. So, as of right now, Miss Talia shouldn't have to have any surgeries for awhile. Her irregular heart rate has returned so they have put her back on the amioderone medicine and that is helping. They said- those could go away at anytime and should they stay- they shouldn't last more then 6 to 12 months and she would take medicine at home for that. It has taken her longer to recover since her body has to get use to the right side of her heart doing more work. And, when she had the partial glenn- the blood flowed more towards her head and now the blood flow is the opposite direction, so her body also had to get use to that. Last nite, Miss Talia was smiling and eating better. I just talked to the nurse to see how she was thru the night and she did good and they are going to take out a couple of her IVs today and possibly send her up to a recovery room. Yay!
Talia's Heart Updateposted on 01/01/2010
An echo was done this morning and the tricuspid valve actually looked much better then it did yesterday. So, they are just going to wait a few days and see how the valve does. If it stays the same- she should be good for awhile. The valve is leaking a bit- but it is working just enough for the right side to do what it is suppose to. The valve will eventually need to be replaced- they are just not sure when. They got a mechanical valve flown in from St. Jude to use as a backup if needed. But, the goal for now is to just get her better and to get her home. As for the valve- we just pray that it works as long as possible! Talia is doing good though- she's been eating and sleeping.
Talia's Heart Updateposted on 12/31/2009
Talia is doing good and we thought she was going to be able to be in a recovery room tomorrow, but it doesn't look that way. The heart surgeon talked to Brent and he said that the bovine valve he put in to replace her tricuspid valve isn't going to work and it will need to be replaced in the next couple of days. We meet with him tomorrow morning to hear his options for the valve. So, Miss Talia is going to have to be opened up once again. Please keep her in your thoughts and prayers! I will let you know more after we know more tomorrow. Otherwise- Miss Talia is in a good mood today and is eating formula.
Miss Talia has been in a recovery room for the last 2 days. She is doing ok- she has most of her ivs and lines out. Her irregular heart rate comes and goes and they give her amioderone twice a day orally for that. She is also taking lasiks twice daily as well. She got the ng tube taken out of her nose so she has been eating regularly since she's been up there. She didn't eat very good last nite, so I'm not sure what has caused that, but hopefully she'll start eating more so she can get that double chin back! :) Otherwise- that is all we know for now- we are unsure of when she will get out. Thanks again for all your thoughts and prayers! Also- if you haven't gotten your Miss Talia pendant or keychain yet- here is a link where you can get them online with a paypal account- http://misstalianecklace.tumblr.com/ Otherwise- if you don't have paypal and you want one- just let me know and I can get you one. You can email me at jillkrumbach@yahoo.com Thanks!
Miss Talia Updateposted on 01/05/2010
Miss Talia had a pretty uneventful weekend and she stayed pretty stable. They did an echo on Saturday morning and it didn't change at all. The Lunds had Christmas on Sat. at our house so Miss Talia had quite a few visitors and she got alot of fun gifts she can't wait to play with when she gets home! They did an echo yesterday morning and we had some confusion about it hearing different things from different people- but we got the right information last nite from the heart surgeon and the echo looked good. The bovine valve- tricuspid valve is working! The right side is working! The right atrium is a bit streched and has a bit of high pressure but it is fine where it is at because before she had this operation- the pressure on the right side was twice, if not three times as high. So, as of right now, Miss Talia shouldn't have to have any surgeries for awhile. Her irregular heart rate has returned so they have put her back on the amioderone medicine and that is helping. They said- those could go away at anytime and should they stay- they shouldn't last more then 6 to 12 months and she would take medicine at home for that. It has taken her longer to recover since her body has to get use to the right side of her heart doing more work. And, when she had the partial glenn- the blood flowed more towards her head and now the blood flow is the opposite direction, so her body also had to get use to that. Last nite, Miss Talia was smiling and eating better. I just talked to the nurse to see how she was thru the night and she did good and they are going to take out a couple of her IVs today and possibly send her up to a recovery room. Yay!
Talia's Heart Updateposted on 01/01/2010
An echo was done this morning and the tricuspid valve actually looked much better then it did yesterday. So, they are just going to wait a few days and see how the valve does. If it stays the same- she should be good for awhile. The valve is leaking a bit- but it is working just enough for the right side to do what it is suppose to. The valve will eventually need to be replaced- they are just not sure when. They got a mechanical valve flown in from St. Jude to use as a backup if needed. But, the goal for now is to just get her better and to get her home. As for the valve- we just pray that it works as long as possible! Talia is doing good though- she's been eating and sleeping.
Talia's Heart Updateposted on 12/31/2009
Talia is doing good and we thought she was going to be able to be in a recovery room tomorrow, but it doesn't look that way. The heart surgeon talked to Brent and he said that the bovine valve he put in to replace her tricuspid valve isn't going to work and it will need to be replaced in the next couple of days. We meet with him tomorrow morning to hear his options for the valve. So, Miss Talia is going to have to be opened up once again. Please keep her in your thoughts and prayers! I will let you know more after we know more tomorrow. Otherwise- Miss Talia is in a good mood today and is eating formula.
Talia Updateposted on 12/30/2009
Talia is doing good today. She got the breathing mask taken off this morning. She has woke up a couple times and wasn't the happiest- but thats to be expected. The nurse said she should possibly get her ivs removed tomorrow and she will either be moved up to a recovery room tomorrow nite or Friday. Otherwise- we're just hanging out for now- nothing else is new for now.
Talia is doing good today. She got the breathing mask taken off this morning. She has woke up a couple times and wasn't the happiest- but thats to be expected. The nurse said she should possibly get her ivs removed tomorrow and she will either be moved up to a recovery room tomorrow nite or Friday. Otherwise- we're just hanging out for now- nothing else is new for now.
Talia Updateposted on 12/29/2009
Miss Talia is doing good today. She still has a mask on to help with her breathing since she still needs to get some fluid off of her. She will be put on a lasiks drip so she can pee some of the fluid off- so hopefully we can get rid of the mask tomorrow.She also had an echo done today and her heart looks good.Also- we got the results from Talia's EEG test from a week ago Monday and everything was normal- so no seizures. Yay! Thanks again for all your thoughts and prayers!
Talia Updateposted on 12/28/2009
Miss Talia got off the vent this morning and is awake. She is on some oxygen and has alot of snot from her cold that they are trying to get rid of. Her lactates and blood gases are ok- the aren't great, but they aren't horrible. So right now- we are just sitting tight. She is doing well otherwise. I'll let you know how she's doing later. Thank you for all the thoughts and prayers- they are working, but keep them coming!
Talia Updateposted on 12/27/2009
Miss Talia gave us a little scare about 8:00 p.m.- her lactates started to go up and they couldn't figure out what was wrong since she looked great. They did a chest x-ray and an echo and they found there was some blood around her heart- starting to clot up a little bit. So, they opened her back up and got the blood clots out and she is doing good again.
Miss Talia is doing good today. She still has a mask on to help with her breathing since she still needs to get some fluid off of her. She will be put on a lasiks drip so she can pee some of the fluid off- so hopefully we can get rid of the mask tomorrow.She also had an echo done today and her heart looks good.Also- we got the results from Talia's EEG test from a week ago Monday and everything was normal- so no seizures. Yay! Thanks again for all your thoughts and prayers!
Talia Updateposted on 12/28/2009
Miss Talia got off the vent this morning and is awake. She is on some oxygen and has alot of snot from her cold that they are trying to get rid of. Her lactates and blood gases are ok- the aren't great, but they aren't horrible. So right now- we are just sitting tight. She is doing well otherwise. I'll let you know how she's doing later. Thank you for all the thoughts and prayers- they are working, but keep them coming!
Talia Updateposted on 12/27/2009
Miss Talia gave us a little scare about 8:00 p.m.- her lactates started to go up and they couldn't figure out what was wrong since she looked great. They did a chest x-ray and an echo and they found there was some blood around her heart- starting to clot up a little bit. So, they opened her back up and got the blood clots out and she is doing good again.
Operation was a success! posted on 12/27/2009
Miss Talia just got out of surgery and it went well! It was a long wait- but well worth it! They were able to replace the tricuspid valve with a bovine valve. They also replaced the pulmonary valve which is also a bovine valve from last time since it had a bit of leakage. When he took her off of bypass he noticed that the pressure in the upper part of her body was too high. So to counteract that he undid the partial glenn that he did last time and it worked!! The right side is now working and she will be able to have a full heart now. Thank you for all your thoughts and prayers!
Talia's Surgery is TODAY!posted on 12/27/2009
Yesterday- Miss Talia got the medicine she needed to get her heart beat regular again. Last nite the heart surgeon decided that he didn't want to wait til Monday to do surgery so she is in surgery right as I type now. We decided to do the tricuspid valve replacement and give the right side of her heart one more shot. Please keep her in your thoughts and prayers! I'll update you later once she's out of surgery.
Talia's 1st Christmas- Not So Fun! :(posted on 12/26/2009
Miss Talia didn't have a very good first Christmas. We left Omaha Wed. nite to get back to Shelby to Grandma & Grandpa Krumbach's house to beat the snowstorm. Christmas eve- Miss Talia was kind of fussy and was uncomfortable from her enlarged liver- so she didn't want to sit up much. She got lots of great presents- some toys, books, clothes, booties, jewelry and jewelry box. Christmas morning she wasn't any better and she was breathing hard, her stomach was as hard as a rock, she didn't want to really eat, and she had a bad cough and stuffy nose. We left around noon to get back to Omaha to take her to the hospital. Miss Talia got admitted and she is doing better. They did an xray last nite and she had some fluid built up around her right lung. They gave her some lasiks and that helped alot. Her xray this morning was alot clearer. They also did an echo last nite and her right atrium looked bigger then it did the previous week. They noticed today she had an irregular heart rate so they did an EKG to confirm it. They found she has an irregular heart rate called atrial tachycardia. The cardiologist said it can be corrected with medicine called amiodarone. So, we got moved from our room on the 5th floor down to the PICU so she can be monitored while she is on this medicine. She's doing fine and does not need intensive care but they just want to make sure she doesn't have any reactions to the medication. That is our plan for today and we are still waiting to see if we will have surgery next week or not since Miss Talia has a bad cough and runny nose- it might get postponed. We'll keep you updated on how she is. Thanks for all the thoughts and prayers! Hope everyone had a Merry Christmas!
Miss Talia just got out of surgery and it went well! It was a long wait- but well worth it! They were able to replace the tricuspid valve with a bovine valve. They also replaced the pulmonary valve which is also a bovine valve from last time since it had a bit of leakage. When he took her off of bypass he noticed that the pressure in the upper part of her body was too high. So to counteract that he undid the partial glenn that he did last time and it worked!! The right side is now working and she will be able to have a full heart now. Thank you for all your thoughts and prayers!
Talia's Surgery is TODAY!posted on 12/27/2009
Yesterday- Miss Talia got the medicine she needed to get her heart beat regular again. Last nite the heart surgeon decided that he didn't want to wait til Monday to do surgery so she is in surgery right as I type now. We decided to do the tricuspid valve replacement and give the right side of her heart one more shot. Please keep her in your thoughts and prayers! I'll update you later once she's out of surgery.
Talia's 1st Christmas- Not So Fun! :(posted on 12/26/2009
Miss Talia didn't have a very good first Christmas. We left Omaha Wed. nite to get back to Shelby to Grandma & Grandpa Krumbach's house to beat the snowstorm. Christmas eve- Miss Talia was kind of fussy and was uncomfortable from her enlarged liver- so she didn't want to sit up much. She got lots of great presents- some toys, books, clothes, booties, jewelry and jewelry box. Christmas morning she wasn't any better and she was breathing hard, her stomach was as hard as a rock, she didn't want to really eat, and she had a bad cough and stuffy nose. We left around noon to get back to Omaha to take her to the hospital. Miss Talia got admitted and she is doing better. They did an xray last nite and she had some fluid built up around her right lung. They gave her some lasiks and that helped alot. Her xray this morning was alot clearer. They also did an echo last nite and her right atrium looked bigger then it did the previous week. They noticed today she had an irregular heart rate so they did an EKG to confirm it. They found she has an irregular heart rate called atrial tachycardia. The cardiologist said it can be corrected with medicine called amiodarone. So, we got moved from our room on the 5th floor down to the PICU so she can be monitored while she is on this medicine. She's doing fine and does not need intensive care but they just want to make sure she doesn't have any reactions to the medication. That is our plan for today and we are still waiting to see if we will have surgery next week or not since Miss Talia has a bad cough and runny nose- it might get postponed. We'll keep you updated on how she is. Thanks for all the thoughts and prayers! Hope everyone had a Merry Christmas!
Thanks again mom and for letting me share your daughter's story!
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