Tuesday, January 31, 2006

"The Call"...cont....

When we arrived at our house, there were many people there. The moment I walked in people were asking, "What can I do to help". I am so very thankful that those people were there that day because I could not think...I was supposed to have our bags packed (but they weren't), I wasn't even thinking about the dogs (but they would need fed while we were gone)...why didn't I have all of this READY??? However, our friends stepped in and got us ready to head out the door (through tears of their own). Once we got the car packed we headed to the airport where we would meet the private jet of a company who had volunteered their jet/crew/etc. when the time came. While we were waiting there was a lot of crying from our friends. I was just so happy to finally be venturing forward, even if we did not know the path ahead. At the time I was just happy to not have to wait anymore.

Our plane arrived at 11:30 am, and we hugged everyone there. We left all of our belongings in the car, for my sister would be driving to Denver that day with Terri (who I teach with) following her. We took Emma in her carseat with a big smile on her face. I vividly remember the outfit that she was wearing that day. I came across it the other day and a tear came to my eye at the memory. I'm not sure another child will ever wear that outfit.

We boarded the plane. WOW!!! Leather seats, big screen TV, fully stocked refridgerator! A private jet is the way to go. We felt like the King, Queen, and Princess, and as we took off the reality set in that we were going for a life saving operation in a place far away from home. A tear ran down my cheek as we waved good-bye to everyone outside the window...and the plane rose high into the air.

It took us 1 hour to fly to Denver...it took us 1 hour 30 minutes to get from the airport to the hospital (imagine that!). When we arrived at the airport a red runway was laid out and our rental car pulled up right next to the plane (yes, we again felt like royaly). I can't ever thank the wonderful people who provided the jet!!!

We arrived at the hospital at 2:30 thinking that we were late and they might give the liver to someone else (OK, so she was the only one listed with her blood type at the time, and we were well within the "time frame", but your mind doesn't really function very well under this amount of stress). We learned that the liver came from a very healthy 17 year old female...that was all we knew. We were put into a room to wait...for the next 6 HOURS!!! Emma wanted to drink SO badly that she kept pulling my water glass to her mouth. We just held her and enjoyed our time with her...and took LOTS of pictures!! They finally came at 8:30 to take her for blood work and all of the pre-op work. I was allowed to go with her. Then, we were taken to a little bench outside of the surgery room. I remember watching all of the surgeons walking into a small cubicle to get their "glasses" (that had zoom lenses on them) and thinking about the tiny little area that they had to work on my baby. Then, the doors opened and a young man walked in with a red igloo cooler with the word "liver" on it (yes, we got a picture of that too). The young man went and gave the cooler to our surgeon who dissappeared. Then the young man came and knelt down next to Emma and told her how beautiful she was and that she was going to feel better soon...and tears filled his eyes and slid down his cheeks (he came to our room a week later, brough Emma a teddy bear and explained that that had been his first "harvest of organs", and it was so surreal to see both families and feel the emotions that all of us were experiencing that day).

After the young man left, the anesthysiologist (sp?) came to talk to us, and he answered all of our questions then he said he would be taking Emma back with him to get her all ready for surgery. We kissed our smiley little girl (even after many many many hours with no food she was still smiling). We told her how much we loved her and that this was her 2nd chance at life. Then he picked her up and as he carried her away her little head peared over his shoulder and smiled at us. The sense of peace that I had that day was remarkable. I knew that everything was going to be OK, and even as we said good-bye to Emma before she went through those doors to surgery I did not cry, instead I smiled knowing that a new chapter was opening in our lives.

Thursday, January 26, 2006

Remembering when....

Today I was reading the liver website that I am a part of, and I came across a post titled "We got the call"! Knowing that someone's child is receiving the gift of life is amazing, and reading about it takes me back to the exact moment when I got that call.That day is by far the most vivid in my mind of any day that I have ever had in my life so far (including the day Emma was born). You see, the day that we received "the call" was the day of the re-birth of our baby girl...however, it was a baby that we had already seen, held, loved, cherished, and knew that we would do anything and everything in our power to save her life. The day we received "the call" was the day that her life began...a life that would not have existed otherwise.

Emma was officially placed on the transplant list on January 21, 2004 after much nogotiating between the insurance company and the hospital. We were told the wait was typically 6 months to a year. We knew that our little girl was getting more and more sick every day. She was so weak. She had been on oxygen for a month, and life was looking very bleak. We knew that we could not go far away from our home because we could get "the call" at any moment, but the minutes turned to hours and the hours to days....when would the call come??? Looking back it is amazing...it seems like she was listed forever (when your child is waiting for a life saving organ transplant time has a way of standing still), however she waited only 2 months before that glorious day. While we waited we cried a lot. We talked about all of the "what if's"...things that no parent should ever have to think about, let alone talk about, but it was staring us in the face each time we looked at Emma. We each prayed our own prayers, but that seemed to be more difficult to discuss.

Tim and I were BOTH out of town the weekend before we got the call. Tim was coaching high school swimming and I was coaching high school cheerleading, and we each had our state events that weekend. Emma was with her grandparents that weekend, and the fear that her liver would come was huge! We had arranged everything "just in case", but I prayed that it would not happen that weekend. I wanted to be with Emma at that time! We were so relieved when we were both back home waiting with Emma.

Emma's call for transplant came on Friday, March 19, 2004. I got her ready that morning and took her to meet the babysitter (I meet the bus driver at her kids' bus stop). Emma had had blood in her diaper that morning, and I had a bad feeling about it. I remember sitting there waiting for the babysitter to drive up. The place where we wait sits on a large lake with mountains all around it. As I sat there I had a very strange feeling come over me. I knew that we were going to get the call that day. The babysitter came I told her about the diaper, said that I would have my cell phone on, and left to drive to work.

I teach at a rural school. We have the priviledge of taking our entire school skiing every Friday in the winter. March 19 was the last ski day for our school that season. I usually ride on the bus with the kids, but that day I decided I had better take my own car. My sister (whose kids go to our school) and Terri (another teacher at our school) rode in my car with me. 1/2 way to the ski resort the bus pulled over and asked if we would go back to get something at the school, so we turned around and headed back. When we finally arrived at the ski resort I walked in downstairs and I was talking casually to one of the parents. One of the kids came down the stairs and said, "Mrs. Foley everyone is looking for you. YOu had a phone call". I said, "OH CRAP!!" (I know GREAT thing for a Kdg. teacher to say in front of all of her kids AND their parents LOL). I ran up the stairs. The owner of the ski resort looked at me and said, "Oh, yeah, you had a phone call from your husbands principal. It says ASAP so it must be important". (Insert...hello STUPID...remember me TELLING you for the past 3 months that my 7 mth. old child is waiting for a liver transplant!!!!!!!).

I called Tim's school, and the secretary told me Tim was on his way home because Denver had called and they had a liver. I hung up on her and started hysterically crying. My sister came up the stairs, then she escorted me to my car and drove me to Emma (going 100 mph...YIKES!! She NEVER speeds!!). When we got to my babysitter's bus stop, my sister skidded past the babysitter's car! The babysitter said, "Maybe you should switch drivers" (ha ha)! You know, the moment we got into the car I stopped crying and I did not cry again until 10 days AFTER Emma's transplant.

To be continued......

Monday, January 23, 2006

She's Figured it out....

We knew the day would come, and it has slowly been approaching. The day that Emma would figure out that entering the hospital meant pain was about to happen. Now, she figured out a while ago that once we sat in the blood draw chair it was going to hurt, but until today she has been all smiles until we sat in that chair. This morning was a different story.

We approached the hospital at 6:30 this morning, and as I took Emma out of her car seat she looked at the tall building in front of us. As we approached the front doors of the hospital I could feel her grip tightening a little more, a little more...until she was clinging to me in utter fear. As the doors opened she looked at me and shook her head no while her little bottom lip jutted out. We walked in and were greated by the wonderful staff at the lab...no smiles for them as Emma places her head on my shoulder. I walk in and sit in the lab chair with her on my lap and she just melts into me. She is totally laying against me, and as she looks up at me...silent tears start to fall. Oh baby girl I want to leave just as much as you do right now....but, this has to be done. The lab tech walks in and the silence leaves the room as Emma begins to scream and cry and kick and CLING to me! They get the vein on the first try (thank GOD!), and as soon as the needle is out Emma is all smiles because she knows that she gets a Barbie band-aid and a Barbie sticker (and don't try to pull a fast one and give her Shrek...OH NO! This girl is ALL about Barbie).

Of course I put her down afterward and I say, "Say good-bye Emma". She just looks at them, shakes her head no, and heads out the door. I can't say as I blame her, as wonderful as the lab employees are, in her book they mean PAIN!

Friday, January 20, 2006

Ready for school??

Emma got 2 new backpacks for Christmas, and she loves to wear them. She carries her toys and her milk around in them and puts them on and off, on and off, on and off...you get the picture! She absolutely loves them! Is that an indication that she is ready for Kindergarten (Ha! Ha!!). Although, she does LOVE to come into my kindergarten class. She walks around to all of my kids desks and takes their glue sticks out...then she piles them up on my rocking chair. What a silly girl! My students can always tell when Emma has been in our classroom for a visit. Watch out Kindergarten teacher...she will be headed your way one of these days, but not for a LONG LONG time!!

Image hosting by Photobucket

Image hosting by Photobucket

Thursday, January 19, 2006

Oh, Dad....HELLO!!!

The joy of attempting to potty train a free spirited child with a strong will has been quite amusing! First of all SHE MAKES THE RULES, and she will let you know that she makes the rules. We are simply her followers along this journey, and DO NOT attempt to curve the path that she is on!!

Rule #1 If the princess starts to tug at her pants...she needs to go NOW

Rule #2 ALL articles of clothing must be removed BEFORE she will make "her attempt"

Rule #3 PRIVACY- it is OK for mommy to be in the room, but she will send Daddy out with a point of the finger to the door and a "calm" sceam (meaning, we assume, "leave"). How do they develop the sense of modesty at such a young age? Never mind the fact that she runs around the house naked anytime that you let her.

Rule #4 SHE will let you know when she is done (Dad, don't take her off early as she will continue to go....on the floor...as she did yesterday morning...YUCK!!).

Rule #5 WHEN she is done, do not try to tell her she is not. Last night, Daddy put her on her potty and went to run her bath water when lo and behold she showed up in the bathroom doorway seconds later (completely naked). Daddy askes, "What are you supposed to be doing?" The princess takes Daddy's hand, leads him back to her potty, and points as if to say, "HELLO Dad, I already went, see". Then, she smiles up at her Dad, and wraps him just a little tighter around her little finger.

As you can see, Daddy has had a few mishaps where he has tried not to follow the Princess' rules. However, she quickly reminded him each time, "Oh Dad...HELLO...remember...I MAKE THE RULES".

Friday, January 13, 2006

Better frame of mind!!

Today is a brand new day...and I have a MUCH better frame of mind. I think every now and then EVERYONE has one of those days, and I set this journal up to organize my thoughts...so, those were my thoughts yesterday. I'm glad that today is better. Yesterday was one of those days when Emma woke up and had a fever, but I KNEW that I HAD to go to work...and that makes me feel like the worst mother in the world. However, by last night she was feeling better, and we had a very nice visit with our wonderful pediatrician who has a way of making me remember what an amazing miracle Emma is, and how far she has come. Although I DO know this...it is so nice to hear it from someone else.

So, the other thing to put me in a much better mood was giving Miss Emma a bath last night. She is so silly when she is in the bathtub! She just loves it. Notice in the 1st picture her hair is CRAZY!! We had just taken out her french braids....then, the 2nd picture shows how LONG her hair is!! It is amazing! The rash on her forehead is for unknown reasons...possibly allergies????)

Image hosted by Photobucket.com

Image hosted by Photobucket.com

Thursday, January 12, 2006

Title for a new book

I have been thinking about a writing a book. I am one of the parents that threw all of my parenting books away shortly after my child was born...she just did not fit into any of their norms...and I was tired of them making me realize it over and over again. Where is the term Biliary Atresia in the What to Expect When Expecting Book? Do they cover "how to flush a Broviac" or "All of the many glorious ways to clean up puke" or better yet "Signs that your child may be having an antiphilactic reaction"? Where exactly does it say how yellow your baby should get before you should be alarmed.

I remember the first weeks of Emma's life. One of the parents of a child from my school told me that Emma looked jaundice. "Her eyes are a little yellow". So, I took her to the pediatrician the next day and he told me "it is slight. If you notice it going to her trunk, then we need to be worried". However, when you continue to stare at the child from that moment on...looking only at her trunk....do you really notice when the yellow comes?? Aparently not because at our next Dr. apt. I thought that Emma was the same. The nurse asked me to take off her clothes and told me she would be right back to weigh her. The nurse stepped back through the door, took one look at Emma, and with a terrified look in her eye she said, "I will be right back". I did not see her again that day. Instead the Dr. came in and sent us for immediate blood draws. HMMMM???? I guess that her trunk must have lookes just a little yellow.

Where are the books that prepare you for what you WERE NOT expecting. Where are the books that are going to tell ME that everything is going to be all right? I love love love my child with all of my heart and soul! I'm just looking for some sense of security. Do all parents feel a tightening in their stomach each time that they feed their child...wondering if it will be coming back up, or will she have an allergic reaction? Do all parents work with their child on speech day in and day out hoping to one day hear the words "I love you Mom"? (not knowing if it will ever happen). Do all parents have to advocate for their child to find the absolute best fit for therapists to work with their child (therapists who truly believe in your child and are as compassionate as you are about encouraging your child to be her very best in this life). Do all parents cry themselves to sleep each night praying to a God (that does not seem to hear all of her prayers) that she cannot continue on this path much longer? As I type this and the tears begin to flow again at an unstoppable rate it makes me again ask....why??? A question that I will never have the answer to.

Tuesday, January 10, 2006

Our Wee German One

While I do have German heritage...I have never been to Germany. However, my sister was born there "a few" (ha, ha! I know you love me Gina) years ago. My dad was stationed there with the Army in the time that my sister was born, and they lived there until she was 18 mths. old. We have this little German dress from Germany that my sister wore when she was little. Emma wore it last year (with the help of many safety pins). My mother swears that my sister wore it every year until she was 3....OK, the day after Christmas was the last day that Emma would be wearing it because it barely covered her bum (YEAH!! She really is GROWING!!! Yip! Yip! Yippeee!!!) I'm pretty sure that my sister did not wear it until she was 3....unless it has shrunk drastically in the last "few years" (since Emma weighs 22 lbs. and is only 30 inches tall at 25 mths.= Extremely small for a 2 yr. old), but I will let my mother keep her memories:). Anyway, I just had to post a picture because the dress (and my girl.....I'm just a little partial) is beautiful!! Now, we are waiting for her to begin speaking German....OK, that may be a "few years".

Image hosted by Photobucket.com

Saturday, January 07, 2006

Look Mom....

My sister got a palmeranian puppy a few months after Emma was born....so, they have grown up together. The dog's name is Sadie, and she is such a sweet little dog. She has always tolerated Emma and her antics very well. She shares her food with Emma (only once when I wasn't looking...I know...BAD MOM), and her toys. However, she is not quite as excited about the fact that Emma can now pick her up. Emma chases her down, and you can just see the look of fear in poor Sadie's eyes. The dreaded look is there because Miss Emma doesn't JUST pick her up.....she picks her up by her head!! Oh Spirit...we will watch out for you sweet little dog. Emma is only trying to love you! Here is a great picture of the two of them together!!

Image hosted by Photobucket.com

Tuesday, January 03, 2006

Christmas items began to fill every store on November 1st (or earlier). The lights were fantastic, the ornaments were neatly hung, and that big man in the red suit was everywhere that you looked.....and Emma LOVED him!! OH! How exciting it will be to place her on Santa's lap and get that "perfect picture" I thought to myself. The huge blow up Santa at Wal-Mart would catch Emma's eye immediately upon entering the store. She would point and exclaim with delight, "DANTA"!!! Oh...she just loves him this year...I thought to myself! We would approach the 5 ft. tall Santa that dances in the front of the Wal-Mart store. Emma would insist on getting down from the cart, proceed to push the button to make him dance, and she would dance right along with him. Every person passing had to comment on how cute the little red headed girl was that was dancing with Santa, and her proud Mama would have to tell them, "She just loves Santa this year". Well, my little angel had something up her sleeve for that Santa man. The evening arrived of our school Christmas program. Each year our Santa gets dressed upstairs then comes down to greet the children. The years since Emma's birth I have always taken her upstairs to see him before he comes down (to make sure he is still "germ free" in his freshly dry cleaned Santa suit). As we approached the top of the stairs that night I told Emma, "We are going to see Santa". She clapped her hands in delight while exclaiming DANTA!!!! We arrived at the door (Santa was sitting inside). I was SO excited. I had her dressed in her beautiful Christmas dress, her hair was done so pretty...all for that "perfect picture". I open the door, and Santa says in his kind gentle voice, "Hello Emma". She begins crying hysterically. I bend down next to her and tell her it's OK, while trying to gently nudge her toward Santa. She shakes her head no and proceeds to KICK HIM IN THE SHIN!!!! Yes, you read that correctly. My beautiful little angel kicked Santa! What do you get in your stocking for that?? Well, Santa was very very nice. He said what a little miracle she was . We did finally get her to his lap for that "not so perfect picture"...of course Mommy had to be right there! So, here it is....ENJOY????

Image hosted by Photobucket.com