To say that yesterday "ended with a BANG" would be a mild understatement! Granted, it was a pretty uneventful day...the weather was good, school went well....then, we went to WAL-MART (the most evil place of all)! Shopping went well, and we were just about to leave when it happened. Right there in the front isle of the store...right in front of all of the cash registers...YES, Emma puked...GROSS (and frustrating and embarrassing, and sad...for Emma...all emotions wrapped into one horrible moment). Well, I am used to this (although Super Mom did not come out to save me...you know the cape comes out and suddenly I find something for her to puke in, throw it away, and I am on my way...no, she did not come out in me...therefore puke was all over the place). Really not a big deal, they got someone to clean it up and I headed to the back of the bathroom at the back of the store to clean her up. That's when the BIG BANG happened!!! A girl (early 20's..that's all I could tell you) who worked there was getting ready to clean the bathroom. I asked her if I could run in really quick to clean Emma up. She said, "Well, I guess". So, I went in, cleaned Emma up, and began to wash my own hands (Emma was walking around behind me). The girl (that works there) comes in and looks at Emma and says...are you ready for this?....I still can't believe it!....She said, "So, is she Autistic or just retarded". OH!!! WATCH OUT!!! MAMA BEAR HAS JUST COME OUT OF HER CAVE AND YOU BETTER BE PREPARED!!! I turned around and told her, "She is neither!! You have NO idea what this child has been through and really it is none of your business!! However, you should NEVER ask anyone a question like that!!! EVER!!!" And, I stormed out of the bathroom (while the girl was saying, "well, she wouldn't even look at me")!! I was very proud of myself really...I didn't even cry...until I got to my car, then the river started and I cried and I cried and I cried. I tried to call every one of my "supporters" (those that can always pull me out of a bad mood...they always know the right things to say). NONE of them answered their phones. So, I sat there...and I cried A LOT more!!! Then (here comes the divine intervention comes into play) the beloved beep on my cell phone to tell me there is a message. I call my msgs. and it is my friend telling me that her and some other girls are "taking over our friend spa tomorrow" they are going to give themselves pedicures and just relax (order pizza:)...then, they are going to the movie Failure to Launch (which I have seen...and LOVE...who wouldn't love Matthew McCaunehey????)...and, she invited ME!! YEAH! That call could not have come at a better time! I guess that God truly is watching over me, and he knows when I truly can't take anymore.
Well, my husband called Wal-Mart when I got home. 2 managers have called me today, and they apologized profusely! However, they also let me know that the girl that said it is very mentally challenged...lives in a group home and she has ALL of her life (she was abandonned by her parents as an infant). OK, so that explains A LOT!! At the moment that it happened though I did not know that! I am very glad that Wal-Mart employs people with special needs.
Tuesday, March 28, 2006
Sunday, March 19, 2006
2 years ago today
Wow! 2 years ago today we received the call that we had been waiting for. The call that we knew we needed to receive for our child to have a chance. A chance to grow, learn, and love. She has done those things and so much more! She truly is an amazing gift from God, and I thank him each and every day for giving her one more day to be here with us...to teach us. Today, we are cherishing the time that we get to spend with our angel here on Earth.
The memories are flooding my mind . I thought I would post a photo recap of the last 2 years. You've come a long long way baby girl!
This picture was taken the day before Emma's transplant! Look at those eyes (but she is still smiling)
Here she is a few days after transplant. Her tummy is a little swollen, but look at that look of mischief!
Miss Emma celebrating her 1st year transplant birthday
We had a transplant celebration for Emma on St. Patrick's Day. Here is our little Irish Lass...enjoying the day!
The memories are flooding my mind . I thought I would post a photo recap of the last 2 years. You've come a long long way baby girl!
This picture was taken the day before Emma's transplant! Look at those eyes (but she is still smiling)
Here she is a few days after transplant. Her tummy is a little swollen, but look at that look of mischief!
Miss Emma celebrating her 1st year transplant birthday
We had a transplant celebration for Emma on St. Patrick's Day. Here is our little Irish Lass...enjoying the day!
Saturday, March 18, 2006
One more day!!!!
With only one day left until Emma's transplant anniversary...there is one family weighing heavy on my mind, and my heart. A family that will not have a celebration tomorrow. A family that will have so many memories to relive, but no more memories to be made. This family received a very tragic call on March 19th 2 years ago. It was the call saying that their child had been life-flighted to the hospital. Their beautiful child that had gone skiing with her youth group for spring break. I cannot even begin to imagine their grief on that day. In a time that we are joyous that our child is still alive, this family is mourning the loss of their beautiful daughter. Their daughter was Emma's donor. Without this family making the choice to donate during their time of horrific grief...Emma might not be here today either.
Emma's donor was a seventeen year old girl. A girl who was so excited to graduate from High School in May. She had her life cut short by a tragic skiing accident...on her first time EVER skiing!! She was a beautiful girl!
So, tomorrow we will celebrate. It is a huge milestone to make it 2 years after a transplant! It will be a joyous time for us, but we will also think about our donor family. Their daughter is a beautiful angel now...but I am sure that their hearts will be aching.
Emma's donor was a seventeen year old girl. A girl who was so excited to graduate from High School in May. She had her life cut short by a tragic skiing accident...on her first time EVER skiing!! She was a beautiful girl!
So, tomorrow we will celebrate. It is a huge milestone to make it 2 years after a transplant! It will be a joyous time for us, but we will also think about our donor family. Their daughter is a beautiful angel now...but I am sure that their hearts will be aching.
2 Days to go!!!
Well, I missed another day! Where does the time go? Actually, I wanted to put some extra thoughts into this post. It is very near and dear to my heart (as they all are), but I wanted to think about it a little more.
2 Days to go - and 2 little angels we've met along our journey
Our journey has been one of many hills and valleys. Fortunately, we have met some "fellow travelers" along the way. It is a journey that no one wishes to go on, but when you find yourself on your way it is nice to have others along with you. Two of the families that we have become very close to are families that both had children with heart transplants. The children's names were Louie and Annemarie. Their parents have become some of our closest friends. Our children were so fortunate to get to share their love with each other (a love so pure...they all knew nothing other than love). While we were in Denver, we met Annemarie and her parents. Annemarie was waiting for a heart (she did receive it 4 months later). You would never have known that little girl was sick. She had so much life in her...she just shined. We did not meet Louie until after we had returned home. We met him and his parents on a donor awareness walk. We instantly knew there was a connection with this family. They were so "real", and Louie was so amazing. Louie was Emma's very best buddy...her eyes lit up each time that she saw him.
Yes, we were 3 families traveling along the same transplant journey...and we ALL lived within a 200 mile radius (which is unheard of in Montana and Wyoming!). We shared stories about our children. We laughed together, and we cried together. They are the only mothers that I could talk to that knew what I was going through.
Then, the day came. I had spoken to Annemarie's mom on the phone the night before. I heard Annemarie in the background running around and laughing so lovingly at her mom. So, when I got a call from her mom the next night saying that she had passed away...I was DEVASTATED!! I cannot describe the emotion that I felt. How could this happen when she was so full of life just the night before?
Six short months later...another devastating call would come...when Louie's mom called and told me that Louie had passed away. We had just spent the weekend with Louie and his mom...and we had a wonderful time. Emma LOVED playing with Louie. We all went swimming together. Memories that I will cherish forever. Again, I asked myself, "How could this happen when he was so full of life just days before?".
Although our journeys have taken different paths now, they are still the friends that I confide the most in. Louie's mom is one of my very best friends...I tell her everything. We all wonder why life has led us on this journey? We wonder why life turns out the way that it does?
I know one thing is true. If I would not have been placed on the transplant journey I would not have had the opportunity to meet these two beautiful angels and their familes. They were meant to be a part of our lives! Miss Emma now has 2 angel friends that will remain in her heart, and our as well, forever.
2 Days to go - and 2 little angels we've met along our journey
Our journey has been one of many hills and valleys. Fortunately, we have met some "fellow travelers" along the way. It is a journey that no one wishes to go on, but when you find yourself on your way it is nice to have others along with you. Two of the families that we have become very close to are families that both had children with heart transplants. The children's names were Louie and Annemarie. Their parents have become some of our closest friends. Our children were so fortunate to get to share their love with each other (a love so pure...they all knew nothing other than love). While we were in Denver, we met Annemarie and her parents. Annemarie was waiting for a heart (she did receive it 4 months later). You would never have known that little girl was sick. She had so much life in her...she just shined. We did not meet Louie until after we had returned home. We met him and his parents on a donor awareness walk. We instantly knew there was a connection with this family. They were so "real", and Louie was so amazing. Louie was Emma's very best buddy...her eyes lit up each time that she saw him.
Yes, we were 3 families traveling along the same transplant journey...and we ALL lived within a 200 mile radius (which is unheard of in Montana and Wyoming!). We shared stories about our children. We laughed together, and we cried together. They are the only mothers that I could talk to that knew what I was going through.
Then, the day came. I had spoken to Annemarie's mom on the phone the night before. I heard Annemarie in the background running around and laughing so lovingly at her mom. So, when I got a call from her mom the next night saying that she had passed away...I was DEVASTATED!! I cannot describe the emotion that I felt. How could this happen when she was so full of life just the night before?
Six short months later...another devastating call would come...when Louie's mom called and told me that Louie had passed away. We had just spent the weekend with Louie and his mom...and we had a wonderful time. Emma LOVED playing with Louie. We all went swimming together. Memories that I will cherish forever. Again, I asked myself, "How could this happen when he was so full of life just days before?".
Although our journeys have taken different paths now, they are still the friends that I confide the most in. Louie's mom is one of my very best friends...I tell her everything. We all wonder why life has led us on this journey? We wonder why life turns out the way that it does?
I know one thing is true. If I would not have been placed on the transplant journey I would not have had the opportunity to meet these two beautiful angels and their familes. They were meant to be a part of our lives! Miss Emma now has 2 angel friends that will remain in her heart, and our as well, forever.
Thursday, March 16, 2006
Good luck comes in 3's - 3 Days to go!
�Good Luck Comes in 3�s� Only 3 Days to Go!!!!
I have been teaching my class about the legend of the shamrock, and I learned that the Irish believe that good luck comes in threes. So, the shamrock is good luck because it has 3 leaves. Hmmm? While remembering the last 2 1/2 years that my child has been on this Earth, I have been thinking about the 3 times where I felt the most lucky.
1. I am very very lucky to be the mother of Emma. In many ways she has taught me more in 2 1/2 years than I have learned in my life. She has taught me to truly appreciate every day, every hour, every minute, every breath. She has taught me to smile no matter what the situation. Yes, even a 6 week old baby can teach that to her mother� when she is on her way to surgery and she smiles for the very first time. She has taught me that it is OK to live outside of the norms, and to even enjoy it most of the time. She has taught me the power of being able to express love without needing words.
2. We were very lucky that Emma was transplanted at the time that she was. Although she was VERY sick at the time�it really could have been so much worse. Many children wait and wait on the transplant list until they are so sick that they must be listed as status 1 (only 7 days to live), by that time their little bodies are so sick that it is more difficult for them to recover. Even more devastating is the fact that so many die while waiting for a transplant.
3. We are very very lucky that Emma has done SO well post transplant. There are so many children that we know that are having severe complications post transplant. Emma�s liver has been rock solid (Knocking on wood), and her numbers have consistently been �normal��normal is good!! We are also fortunate to have the medical team and technology available in today�s world. Even 10 years ago Emma would not have been able to have the kind of transplant that she did (split liver). She would have had to wait for a whole infant liver�which would have possibly meant a very long wait�and quite possibly not a good outcome.
Yes, we are lucky, and we are blessed!! Just take a look at this miracle that I get to see every single day.
I have been teaching my class about the legend of the shamrock, and I learned that the Irish believe that good luck comes in threes. So, the shamrock is good luck because it has 3 leaves. Hmmm? While remembering the last 2 1/2 years that my child has been on this Earth, I have been thinking about the 3 times where I felt the most lucky.
1. I am very very lucky to be the mother of Emma. In many ways she has taught me more in 2 1/2 years than I have learned in my life. She has taught me to truly appreciate every day, every hour, every minute, every breath. She has taught me to smile no matter what the situation. Yes, even a 6 week old baby can teach that to her mother� when she is on her way to surgery and she smiles for the very first time. She has taught me that it is OK to live outside of the norms, and to even enjoy it most of the time. She has taught me the power of being able to express love without needing words.
2. We were very lucky that Emma was transplanted at the time that she was. Although she was VERY sick at the time�it really could have been so much worse. Many children wait and wait on the transplant list until they are so sick that they must be listed as status 1 (only 7 days to live), by that time their little bodies are so sick that it is more difficult for them to recover. Even more devastating is the fact that so many die while waiting for a transplant.
3. We are very very lucky that Emma has done SO well post transplant. There are so many children that we know that are having severe complications post transplant. Emma�s liver has been rock solid (Knocking on wood), and her numbers have consistently been �normal��normal is good!! We are also fortunate to have the medical team and technology available in today�s world. Even 10 years ago Emma would not have been able to have the kind of transplant that she did (split liver). She would have had to wait for a whole infant liver�which would have possibly meant a very long wait�and quite possibly not a good outcome.
Yes, we are lucky, and we are blessed!! Just take a look at this miracle that I get to see every single day.
Wednesday, March 15, 2006
4 Days to go until Emma's BIG day!!!
I have to start today by telling you that this day did NOT start off right!! I went in to Emma's room at 6:45 (same time I always do. I make sure that I am completely ready, the car is packed, I go in, give meds, get her dressed, do her hair, give her her cup of milk, and we are in the car by 7:10). Well, today Miss Emma had other plans. I entered her room and found her in a very messy situation...and she was signing "potty" to me. Usually very cute, however when she is sitting in it and I am on a time schedule it is NOT CUTE!! So, I gave Emma a bath, washed her hair (yes, it was IN her hair), blew her hair dry, french braided it, got her dressed, gave meds, got her cup of milk, and we were in the car by 7:13....are you impressed or what??? I have to say that I was impressed with myself:) When I started the car a song that used to play on the radio a lot when we were in Denver was playing.....the lyrics go like this...."I'm not crazy I'm just a little unwell, I know right now you can't tell, but wait awhile and maybe then you'll see, a different side of me." What an appropriate song for that moment!
OK, so onto the post for the day. Only 4 days to go. Because of the song that was on the radio this morning I thought I would post the 4 songs that remind me the most of Emma:
1. Beautiful - by Jim Brickman - It tells about seeing the colors of the rainbow and seeing the most beautiful sunsets, but I have never seen anything as beautiful as you. So true of our beautiful girl.
2. She's a Butterfly - by Martina McBride - This song was very popular when we were in Denver, and I remember thinking that the song was the best way to describe the transformation that our daughter had made. The song says "She remembers when she first got her wings, and how she opened up the day she learned to sing, then the colors came erased the black and white, and her whole world changed when she realized SHE'S A BUTTERFLY". At one point in the song it says "And everywhere she goes, everybody knows, she's so glad to be alive!" So very true of our child that smiles to everyone whether she knows them or not!
3. In My Daughter's Eyes - by Martina McBride - This song goes right to my heart everytime I hear it. It tells about my daughter looking at me and seeing a hero, but truly she is MY hero. She really is my hero and my inspiration.
4. Angels Among Us - by Alabama - The title says it all. Emma really is an angel among us, and we are blessed with each day that she remains with us!! I pray that it is many many many more years to come!!!
OK, so onto the post for the day. Only 4 days to go. Because of the song that was on the radio this morning I thought I would post the 4 songs that remind me the most of Emma:
1. Beautiful - by Jim Brickman - It tells about seeing the colors of the rainbow and seeing the most beautiful sunsets, but I have never seen anything as beautiful as you. So true of our beautiful girl.
2. She's a Butterfly - by Martina McBride - This song was very popular when we were in Denver, and I remember thinking that the song was the best way to describe the transformation that our daughter had made. The song says "She remembers when she first got her wings, and how she opened up the day she learned to sing, then the colors came erased the black and white, and her whole world changed when she realized SHE'S A BUTTERFLY". At one point in the song it says "And everywhere she goes, everybody knows, she's so glad to be alive!" So very true of our child that smiles to everyone whether she knows them or not!
3. In My Daughter's Eyes - by Martina McBride - This song goes right to my heart everytime I hear it. It tells about my daughter looking at me and seeing a hero, but truly she is MY hero. She really is my hero and my inspiration.
4. Angels Among Us - by Alabama - The title says it all. Emma really is an angel among us, and we are blessed with each day that she remains with us!! I pray that it is many many many more years to come!!!
5 Days to go - Emma's 5 surgeries
Only 5 More Days Until Emma’s BIG DAY!!
O.K., so I am a day late with this one…sorry! Life can get a bit crazy!
Warning: This is a VERY long post:)
Today, I thought I would tell about Emma’s 5 surgeries. Each of the surgeries was very different, and the emotions to go with them also varied so much!
1st surgery – September 21, 2003 (Emma was only 6 weeks old) – Liver Biopsy: This procedure was performed because it was obvious that Emma’s liver was not properly functioning. She was very jaundice, and her blood work showed that there was a problem. A liver biopsy can show so many things. They did one on Emma to indicate whether she had Biliary Atresia (which she did) or possibly Cystic Fibrosis, or Alagille’s syndrome. After the biopsy they were almost certain it was Biliary Atresia. During this procedure Emma was put under and they stuck a large needle in the right side of her back right under her rib cage (this is the first of many scars she has to show). The biggest concern for this procedure is possible bleeding afterward. Emma did GREAT!
I, on the other hand, was a COMPLETE mess! Looking back it is interesting for me to realize that this was probably the “easiest” surgery that she would endure….but I was the biggest mess during the time she was gone. I remember that we were able to walk down with her, and we were able to stay with her until she was asleep. It was a tiny little room that she was in, and we were allowed to wait just on the other side of the wall. Tears streamed down my face the entire time while my body ached to hold my baby again….she was only gone for 20 minutes!! As soon as they were finished we were allowed back in to be with her while she woke up. I will never forget her weak cries of pain as they gave her more morphine, and the memory of the smell of the tape would be one that I would experience time and time again…yet never become “used” to. To this day I hate that smell.
Surgery #2 – September 29, 2003 (Emma was 7 1/2 weeks old) – Kasai procedure – This was the beginning of our “Crash course” that I spoke of in my last post. We got to learn all about the way the liver functioned, what was connected and where, and what would change inside of our little girl after the surgery was completed. During this surgery they removed her gall bladder (which did exist, but was completely shriveled and looked like a grape), they also removed her main bile duct. Then they cut the small intestine and attached part of it to the liver to act as the bile duct. WHEW!! That was a lot to take in for BRAND NEW parents of a 7 1/2 week old baby!
My emotions seemed to be a little more stable during this surgery. However, I had been put on anti-depressants (which were MUCH needed…just in case Tom Cruise happens to want to knowJ), and we had people there to support us (my sister, a friend of mine… and my mother….not so much of a support…but that’s another storyL). I really remember pre-op on this one. We had to put Emma in this ENORMOUS gown that was like a size 4T…(she only weighed 7 lbs.)! I remember the questioning, and how I found it SO annoying that they couldn’t just look in her chart! I remember looking up on the surgery board and seeing my babies name up there…UGH! And, I remember the surgical nurse coming to get her. 25 kisses later, I allowed her to take her from my arms, and I cried. However, this time I did not cry the whole time. She was gone for 4 hours, and our support group helped to lighten the time by telling jokes and keeping our minds occupied.
Surgery #3 – December 13, 2003 (Emma was 4 mths. Old) – Cardiac catheter (I’m not sure the spelling is correct) – We had gone back to Denver for Emma to be evaluated to be placed on the transplant list. We had to have all kinds of blood work and testing done. We went in for her EKG (of her heart. At birth Emma’s Patent Duct in her heart did not close. This happens in 30% of births, however it usually closes within the 1st 3 mths. So, we had to have an EKG to make sure it had closed and everything was fine). I remember the doctor came in and did the initial exam, and told us the radiologist would be right in to do the ultrasound, then we would just have to wait a few minutes and she would come back to tell us everything was fine…she didn’t think the head of cardiology (can’t remember his “title”) would have to come in unless something was “seriously wrong”…and she chuckled. Well, we went to ultrasound. I sat at Emma’s head trying to keep her calm and still, and I remember thinking “This is taking FOREVER”…and it was, the radiologist just kept going over the same spot over and over and over! Well, she finally finished and sent us back into the other room to wait, and wait, and wait. Then, the door opened and in walked the HEAD of Cardiology, our HEAD GI doctor, 2 more cardiologists, AND the transplant coordinator! We knew right then that this was NOT GOOD NEWS! They told us that the PDA was very large now. Emma’s liver had become so big that the blood was pumping more quickly, making the heart work more, and it was also causing stress on her LUNGS! They said they needed to do a cardiac cath where they go in through an artery in the leg and go up to the heart and put a spring in to close the PDA. Then, they told us that they would try different medications (including Viagra) to get the Pulmonary hypertension (stress on the lungs) under control. If they could not get the pulmonary hypertension under control then Emma WOULD NOT BE A CANDIDATE FOR TRANSPLANT= she would die!
This news was heartbreaking to say the least, and we found ourselves wondering how much more our baby could go through…and how much more we SHOULD put her through. Needless to say that I was a COMPLETE basket case during this procedure! They said it would take 2-4 hours. I remember that we went to the little Chapel in the hospital and we cried and cried! Emma was only in surgery for about 1 1/2 hrs. when Dr. Chen came out with a grin on his face (yeah! Good news). He said the cath went great and the first drug they tried (oxygen) seemed to resolve the hypertension. So, Emma went home to wait for transplant on oxygen.
Surgery #4 – March 19, 2004 – Emma was 7 mths. Old – Liver Transplant – I have told this story before in a previous post. So, please refer to that one if you would like to read the story.
My emotions however, are not in that story. When I first found out that there was a liver available I was a complete and total mess. I remember saying over and over “I don’t want my baby to die”, and my wonderful sister comforting me. However, from the time I got to the car until after the transplant was finished I did not cry again. I felt a huge sense of peace, for this was the ONLY thing that was going to save my child’s life. I handed her to the transplant nurse with a very peaceful feeling, and for once (even though this was the biggest surgery yet) I did not shed a tear. I did not cry until 8 days later when Emma began to fill with fluid, her breathing was labored, and we began to see our sick baby return.
Surgery #5 – March 29, 2004 – Emma was almost 8 mths. Old – Correction surgery – This was a tough one. We had never seen Emma intubated…all 4 of her other surgeries she was extubated in the operating room (even transplant…which is almost unheard of). However, I remember the night before this last surgery I stayed the night with her. We were back in the PICU. As I layed there that night, her breathing became worse and worse! I feared the ventilator because I had never seen it on her. I just pictured the ones on TV with the big blue tube and are VERY noisy. Well, at one point I woke up and I thought they had intubated her already because I heard this loud whooshing sound. Well, she was not intubated…it was her breathing. The intake and the exhale were SO labored. They came to intubate her, and we had to briefly leave the room. I cried and cried. However, when we saw her again it was not as bad as I imagined! They discovered after this that Emma had an Ecoli infection and an interbactrim infection. They started her on antibiotics for it, but her tummy just got bigger and bigger.
They came and told us that they thought Emma had a bile leak. She had received part of a liver, and it is common to “miss” tying off one of the bile ducts on the cut surface. So, they went back in to correct it. When they got in there they realized there were 2 leaks, and all of the surrounding area was laying in the infected bile. When they went to move the aorta (huge artery) it tore!!!! However, the doctors calmly took a situation that could have very easily been fatal and corrected it very quickly! There was a nursing student that had gone into Em’s surgery to observe, and she told us that she didn’t even know this had happened until after the fact! They were able to “correct” everything, and although Emma’s recovery time was much longer she made it!!!
My emotions during this surgery were mixed. I remember being in her PICU room with her. They came to get her, but this time they took the whole bed and all of the machines with her. I remember the eerie silence that was in the room. But, I was hopeful, and somehow that sense of peace was still with me. Emma was able to leave the hospital 1 month after her transplant, and we were able to leave Denver one month after that. Emma did again go home on oxygen, and she stayed on it for a VERY long 7 months!!!
********************************************************************
Whew!! That was WAY too long. If you have gotten this far all I can say is THANK YOU! Thank you for thinking about Emma during this time, and wanting to be a “part” of our journey. It truly has been a whirlwind….especially that 1st year! But, to look at her now (with clothes on) you would never know all that she has endured! Wow! Actually writing it down makes me wonder, “ how did I make it through”? But, when it is your child YOU WILL DO ANYTHING for them, and love them that much more when it is finished.
O.K., so I am a day late with this one…sorry! Life can get a bit crazy!
Warning: This is a VERY long post:)
Today, I thought I would tell about Emma’s 5 surgeries. Each of the surgeries was very different, and the emotions to go with them also varied so much!
1st surgery – September 21, 2003 (Emma was only 6 weeks old) – Liver Biopsy: This procedure was performed because it was obvious that Emma’s liver was not properly functioning. She was very jaundice, and her blood work showed that there was a problem. A liver biopsy can show so many things. They did one on Emma to indicate whether she had Biliary Atresia (which she did) or possibly Cystic Fibrosis, or Alagille’s syndrome. After the biopsy they were almost certain it was Biliary Atresia. During this procedure Emma was put under and they stuck a large needle in the right side of her back right under her rib cage (this is the first of many scars she has to show). The biggest concern for this procedure is possible bleeding afterward. Emma did GREAT!
I, on the other hand, was a COMPLETE mess! Looking back it is interesting for me to realize that this was probably the “easiest” surgery that she would endure….but I was the biggest mess during the time she was gone. I remember that we were able to walk down with her, and we were able to stay with her until she was asleep. It was a tiny little room that she was in, and we were allowed to wait just on the other side of the wall. Tears streamed down my face the entire time while my body ached to hold my baby again….she was only gone for 20 minutes!! As soon as they were finished we were allowed back in to be with her while she woke up. I will never forget her weak cries of pain as they gave her more morphine, and the memory of the smell of the tape would be one that I would experience time and time again…yet never become “used” to. To this day I hate that smell.
Surgery #2 – September 29, 2003 (Emma was 7 1/2 weeks old) – Kasai procedure – This was the beginning of our “Crash course” that I spoke of in my last post. We got to learn all about the way the liver functioned, what was connected and where, and what would change inside of our little girl after the surgery was completed. During this surgery they removed her gall bladder (which did exist, but was completely shriveled and looked like a grape), they also removed her main bile duct. Then they cut the small intestine and attached part of it to the liver to act as the bile duct. WHEW!! That was a lot to take in for BRAND NEW parents of a 7 1/2 week old baby!
My emotions seemed to be a little more stable during this surgery. However, I had been put on anti-depressants (which were MUCH needed…just in case Tom Cruise happens to want to knowJ), and we had people there to support us (my sister, a friend of mine… and my mother….not so much of a support…but that’s another storyL). I really remember pre-op on this one. We had to put Emma in this ENORMOUS gown that was like a size 4T…(she only weighed 7 lbs.)! I remember the questioning, and how I found it SO annoying that they couldn’t just look in her chart! I remember looking up on the surgery board and seeing my babies name up there…UGH! And, I remember the surgical nurse coming to get her. 25 kisses later, I allowed her to take her from my arms, and I cried. However, this time I did not cry the whole time. She was gone for 4 hours, and our support group helped to lighten the time by telling jokes and keeping our minds occupied.
Surgery #3 – December 13, 2003 (Emma was 4 mths. Old) – Cardiac catheter (I’m not sure the spelling is correct) – We had gone back to Denver for Emma to be evaluated to be placed on the transplant list. We had to have all kinds of blood work and testing done. We went in for her EKG (of her heart. At birth Emma’s Patent Duct in her heart did not close. This happens in 30% of births, however it usually closes within the 1st 3 mths. So, we had to have an EKG to make sure it had closed and everything was fine). I remember the doctor came in and did the initial exam, and told us the radiologist would be right in to do the ultrasound, then we would just have to wait a few minutes and she would come back to tell us everything was fine…she didn’t think the head of cardiology (can’t remember his “title”) would have to come in unless something was “seriously wrong”…and she chuckled. Well, we went to ultrasound. I sat at Emma’s head trying to keep her calm and still, and I remember thinking “This is taking FOREVER”…and it was, the radiologist just kept going over the same spot over and over and over! Well, she finally finished and sent us back into the other room to wait, and wait, and wait. Then, the door opened and in walked the HEAD of Cardiology, our HEAD GI doctor, 2 more cardiologists, AND the transplant coordinator! We knew right then that this was NOT GOOD NEWS! They told us that the PDA was very large now. Emma’s liver had become so big that the blood was pumping more quickly, making the heart work more, and it was also causing stress on her LUNGS! They said they needed to do a cardiac cath where they go in through an artery in the leg and go up to the heart and put a spring in to close the PDA. Then, they told us that they would try different medications (including Viagra) to get the Pulmonary hypertension (stress on the lungs) under control. If they could not get the pulmonary hypertension under control then Emma WOULD NOT BE A CANDIDATE FOR TRANSPLANT= she would die!
This news was heartbreaking to say the least, and we found ourselves wondering how much more our baby could go through…and how much more we SHOULD put her through. Needless to say that I was a COMPLETE basket case during this procedure! They said it would take 2-4 hours. I remember that we went to the little Chapel in the hospital and we cried and cried! Emma was only in surgery for about 1 1/2 hrs. when Dr. Chen came out with a grin on his face (yeah! Good news). He said the cath went great and the first drug they tried (oxygen) seemed to resolve the hypertension. So, Emma went home to wait for transplant on oxygen.
Surgery #4 – March 19, 2004 – Emma was 7 mths. Old – Liver Transplant – I have told this story before in a previous post. So, please refer to that one if you would like to read the story.
My emotions however, are not in that story. When I first found out that there was a liver available I was a complete and total mess. I remember saying over and over “I don’t want my baby to die”, and my wonderful sister comforting me. However, from the time I got to the car until after the transplant was finished I did not cry again. I felt a huge sense of peace, for this was the ONLY thing that was going to save my child’s life. I handed her to the transplant nurse with a very peaceful feeling, and for once (even though this was the biggest surgery yet) I did not shed a tear. I did not cry until 8 days later when Emma began to fill with fluid, her breathing was labored, and we began to see our sick baby return.
Surgery #5 – March 29, 2004 – Emma was almost 8 mths. Old – Correction surgery – This was a tough one. We had never seen Emma intubated…all 4 of her other surgeries she was extubated in the operating room (even transplant…which is almost unheard of). However, I remember the night before this last surgery I stayed the night with her. We were back in the PICU. As I layed there that night, her breathing became worse and worse! I feared the ventilator because I had never seen it on her. I just pictured the ones on TV with the big blue tube and are VERY noisy. Well, at one point I woke up and I thought they had intubated her already because I heard this loud whooshing sound. Well, she was not intubated…it was her breathing. The intake and the exhale were SO labored. They came to intubate her, and we had to briefly leave the room. I cried and cried. However, when we saw her again it was not as bad as I imagined! They discovered after this that Emma had an Ecoli infection and an interbactrim infection. They started her on antibiotics for it, but her tummy just got bigger and bigger.
They came and told us that they thought Emma had a bile leak. She had received part of a liver, and it is common to “miss” tying off one of the bile ducts on the cut surface. So, they went back in to correct it. When they got in there they realized there were 2 leaks, and all of the surrounding area was laying in the infected bile. When they went to move the aorta (huge artery) it tore!!!! However, the doctors calmly took a situation that could have very easily been fatal and corrected it very quickly! There was a nursing student that had gone into Em’s surgery to observe, and she told us that she didn’t even know this had happened until after the fact! They were able to “correct” everything, and although Emma’s recovery time was much longer she made it!!!
My emotions during this surgery were mixed. I remember being in her PICU room with her. They came to get her, but this time they took the whole bed and all of the machines with her. I remember the eerie silence that was in the room. But, I was hopeful, and somehow that sense of peace was still with me. Emma was able to leave the hospital 1 month after her transplant, and we were able to leave Denver one month after that. Emma did again go home on oxygen, and she stayed on it for a VERY long 7 months!!!
********************************************************************
Whew!! That was WAY too long. If you have gotten this far all I can say is THANK YOU! Thank you for thinking about Emma during this time, and wanting to be a “part” of our journey. It truly has been a whirlwind….especially that 1st year! But, to look at her now (with clothes on) you would never know all that she has endured! Wow! Actually writing it down makes me wonder, “ how did I make it through”? But, when it is your child YOU WILL DO ANYTHING for them, and love them that much more when it is finished.
Monday, March 13, 2006
Six days to go!!!
Only six more days until Emma's BIG DAY!! Tonight I thought I would share with you Emma's top 6 favorite foods:
1) Pizza
2) Cheetos
3) French Fries
4) Doritos
5) Teddy Grams
6) Popcorn
What do you think of THAT diet?? Oh yes, in case you are wondering I have tried every technique including standing on my head (just kidding) to try to get the child to eat healthy food...and I occassionally succeed. However, that saying that "Kids will eat when they are hungry" was spoken by someone who has obviously NEVER attempted to feed Miss Emma. We are just EXTREMELY thankful when she does eat! Stay tuned for tomorrow's post!
1) Pizza
2) Cheetos
3) French Fries
4) Doritos
5) Teddy Grams
6) Popcorn
What do you think of THAT diet?? Oh yes, in case you are wondering I have tried every technique including standing on my head (just kidding) to try to get the child to eat healthy food...and I occassionally succeed. However, that saying that "Kids will eat when they are hungry" was spoken by someone who has obviously NEVER attempted to feed Miss Emma. We are just EXTREMELY thankful when she does eat! Stay tuned for tomorrow's post!
Sunday, March 12, 2006
The Seven Ways Emma has Improved Our Lives
This list could go on and on and on. But I will try to limit it to the TOP 7 ways that Emma has improved mine and Tim's lives. (Only 7 days to go until Emma's BIG day:)
1. She's taught us to appreciate the little things. When you see your child go through so much, you realize that the little things are SO very important.
2. Like it or not she has taught us patience:) Miss Emma does things in her own time....and she does do them ALL...it's just when SHE wants to.
3. A clean house is not the most important thing. It is amazing how the house can be spotless while she is taking a nap...and within minutes of "Hurricane Emma" hitting I feel like FEMA needs to make a visit to my living room.
4. It's important to make time for yourself. We have come to realize that although Emma is the center of our universe, in order for us to maintain positive and healthy by making time for ourselves also.
5. You can never tell someone you love them too many times. We tell that little girl that we love her over and over, but we know that she can never hear it too much (neither can the others that we love).
6. Laughter really is the best medicine. When Emma laughs it fills the whole room with happiness. Even a person in the very worst mood would have to smile at her.
7. She's redefined our definition of "normal"...and we've come to appreciate our new normal. Although our first experience of parenthood has been trial by fire...we love what we have, and we would not change a thing about our Little Miss Em.
1. She's taught us to appreciate the little things. When you see your child go through so much, you realize that the little things are SO very important.
2. Like it or not she has taught us patience:) Miss Emma does things in her own time....and she does do them ALL...it's just when SHE wants to.
3. A clean house is not the most important thing. It is amazing how the house can be spotless while she is taking a nap...and within minutes of "Hurricane Emma" hitting I feel like FEMA needs to make a visit to my living room.
4. It's important to make time for yourself. We have come to realize that although Emma is the center of our universe, in order for us to maintain positive and healthy by making time for ourselves also.
5. You can never tell someone you love them too many times. We tell that little girl that we love her over and over, but we know that she can never hear it too much (neither can the others that we love).
6. Laughter really is the best medicine. When Emma laughs it fills the whole room with happiness. Even a person in the very worst mood would have to smile at her.
7. She's redefined our definition of "normal"...and we've come to appreciate our new normal. Although our first experience of parenthood has been trial by fire...we love what we have, and we would not change a thing about our Little Miss Em.
Top 8 Excellent Elements of Miss Em
While I realize that this is a day late...I still have it in my head...so, it must be in print:)
1. Number one would have to be THE HAIR...this girl's hair catches the attention of many complete strangers.
2. The wave - Emma knows no strangers, and she will wave until she gets the person's attention.
3. Her size - I call Miss Em my "sweet petite". She is the very meaning of "great things come in small packages".
4. The eyebrows - Emma's favorite thing is to show people her eyebrows. She has the cutest impression of Groucho Marks that I have ever seen.
5. Determination - if Emma wants to do something she will not stop until she gets it done...even if she has been told no 4 times and sat in time out...she will proceed to attempt to do it.
6. No-No - Emma waves her finger side to side while saying "No-No"! She definitely gets her point across.
7. Her sweetness - Emma loves to gives loves and mooches to Mommy and Daddy. She knows if someone is sad, and she knows how to make you smile.
8. Her dancemoves - She develops a new one every day...put them all together and she's got a pretty interesting combo.
1. Number one would have to be THE HAIR...this girl's hair catches the attention of many complete strangers.
2. The wave - Emma knows no strangers, and she will wave until she gets the person's attention.
3. Her size - I call Miss Em my "sweet petite". She is the very meaning of "great things come in small packages".
4. The eyebrows - Emma's favorite thing is to show people her eyebrows. She has the cutest impression of Groucho Marks that I have ever seen.
5. Determination - if Emma wants to do something she will not stop until she gets it done...even if she has been told no 4 times and sat in time out...she will proceed to attempt to do it.
6. No-No - Emma waves her finger side to side while saying "No-No"! She definitely gets her point across.
7. Her sweetness - Emma loves to gives loves and mooches to Mommy and Daddy. She knows if someone is sad, and she knows how to make you smile.
8. Her dancemoves - She develops a new one every day...put them all together and she's got a pretty interesting combo.
Thursday, March 09, 2006
9 Nifty Things I Never Knew About the Liver
Here is the picture I tried to post yesterday...it must be lost in cyber-space.
9 Days to go until Em's "Big Day". Today, I thought I would tell the 9 Things That I Never Thought I Would Know About the Liver:
1) Where the liver is (Honestly, I never took Anatomy nor did I CARE where the liver was)
2) Jaundice is an indication that the liver is not properly functioning (not the kidneys)
3) It is the largest organ in the body
4) The liver is the most difficult organ to transplant, but it has the highest success rate once it is in
5) It can regenerate itself
6) A partial liver can be transplanted (Emma received 1/4 of a 17 year old's liver)
7) The liver absorbs vitamins A,D,E, and K (Emma was on these the first 7 mths. of her life)
8) There is a BIG difference between direct bilirubin and indirect bilirubin ("typical" newborn jaundice is generally elevated indirect bilirubin...elevated direct bilirubin is a sign that something is "not quite right" and putting your child in front of a sunny window is not going to help the situation).
9) I NEVER knew the liver would be such an ENORMOUS part of my life and occupy so many of my thought throughout a day. I truly feel as if I know the liver inside and out now.
Some people go to medical school for years to learn so much about the liver. Others, like myself, are given a CRASH COURSE called parenthood and we are sent on the "fast track" in the world known as Biliary Atresia.
9 Days to go until Em's "Big Day". Today, I thought I would tell the 9 Things That I Never Thought I Would Know About the Liver:
1) Where the liver is (Honestly, I never took Anatomy nor did I CARE where the liver was)
2) Jaundice is an indication that the liver is not properly functioning (not the kidneys)
3) It is the largest organ in the body
4) The liver is the most difficult organ to transplant, but it has the highest success rate once it is in
5) It can regenerate itself
6) A partial liver can be transplanted (Emma received 1/4 of a 17 year old's liver)
7) The liver absorbs vitamins A,D,E, and K (Emma was on these the first 7 mths. of her life)
8) There is a BIG difference between direct bilirubin and indirect bilirubin ("typical" newborn jaundice is generally elevated indirect bilirubin...elevated direct bilirubin is a sign that something is "not quite right" and putting your child in front of a sunny window is not going to help the situation).
9) I NEVER knew the liver would be such an ENORMOUS part of my life and occupy so many of my thought throughout a day. I truly feel as if I know the liver inside and out now.
Some people go to medical school for years to learn so much about the liver. Others, like myself, are given a CRASH COURSE called parenthood and we are sent on the "fast track" in the world known as Biliary Atresia.
10 days to go!!
We have 10 days before we will celebrate Emma's 2 year transplant anniversary. The thought of it approaching brings all types of emotions to the surface. I will try to post something every day until the "BIG EVENT". Today will be the 10 things I love the most about my Earth Angel (not in any particular order):
1) The kisses that you give me and the big hugs (tight around the neck) that make you giggle.
2) How nothing stops you from doing what you want to do...even if it means sneaking to do something that Mom or Dad just told you not to.
3) Splashing bathwater out of the tub by kicking your feet so hard...Olympic swim team here she comes!
4) The way you say "Mom" when I ask you who I am...then run up and give me a mooch!
5) Waking you up in the morning and holding you with your little head still half asleep on my shoulder.
6) The way you dance whenever there is music with your arms straight up over your head.
7) Spilling your milk from your sippy cup in the backseat while looking at me to see if I notice.
8) While walking down the driveway toward the house I love the way you MUST wave at every person driving by.
9) I love the way you put my big mittens on and run around with them until they fall off.
http://i6.photobucket.com/albums/y205/angiefoley/mittens1.jpg
10) I love the way your hair smells when it is flying free in the finest "Don King" hairdo I have ever seen. This morning was classic when your Dad and I went in to wake you up and we thought you had been replaced with "Cousin It"...Your hair was all in your face and you had to struggle with it to be able to see us.
Yes, Emma is one awesome little girl. It's difficult to say only 10 things that I love about her because I could go on for hours!
1) The kisses that you give me and the big hugs (tight around the neck) that make you giggle.
2) How nothing stops you from doing what you want to do...even if it means sneaking to do something that Mom or Dad just told you not to.
3) Splashing bathwater out of the tub by kicking your feet so hard...Olympic swim team here she comes!
4) The way you say "Mom" when I ask you who I am...then run up and give me a mooch!
5) Waking you up in the morning and holding you with your little head still half asleep on my shoulder.
6) The way you dance whenever there is music with your arms straight up over your head.
7) Spilling your milk from your sippy cup in the backseat while looking at me to see if I notice.
8) While walking down the driveway toward the house I love the way you MUST wave at every person driving by.
9) I love the way you put my big mittens on and run around with them until they fall off.
http://i6.photobucket.com/albums/y205/angiefoley/mittens1.jpg
10) I love the way your hair smells when it is flying free in the finest "Don King" hairdo I have ever seen. This morning was classic when your Dad and I went in to wake you up and we thought you had been replaced with "Cousin It"...Your hair was all in your face and you had to struggle with it to be able to see us.
Yes, Emma is one awesome little girl. It's difficult to say only 10 things that I love about her because I could go on for hours!
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