Worried for her future

The House just passed a revised healthcare bill which also allows for the ACA to be withdrawn. Yes, I know this bill needs to be sent to the Senate as well. However, this is one step closer to a very scary reality for many many people, myself included. It also comes with the realization that 217 people have just stated that they are alright with the idea that my daughter and so very many like her could die. I know some of you are saying that this is jumping to extremes. Let me tell you about extremes.

Extremes is when your first child, the child you tried SO very hard for 5 years to conceive is born with liver disease. This disease attacked your child through no fault of yours or your child's. When she is three days old you are faced with the possibility of having to leave her behind at the hospital because she is too sick to come home with you. Extreme is finding out at just 11weeks of age she will have to go through not just one day of testing, but two and then a lengthy and dangerous surgery. Extreme is finding out that your perfect child was born without a gallbladder so they could not even perform the one last test they wanted to. Extreme is watching your child's belly swell to the size of a basketball due to all of the fluid collecting in her abdominal cavity. And then listening to her scream in pain every time her belly was drained. Being told that your child has developed the very infection most common for that type of surgery right away while you sit and just watch because you can do nothing to take away her pain or make her magically better. Extreme is finally getting to come home after almost 20 days in the hospital only to go back a week later for another infection. Then you get to stay a week, come home a week, go back again for a week and so on. After a few months of this, you are told your child is one of the unlucky 33% who will need a liver transplant sooner rather than later. Extreme is asking complete strangers to volunteer to give your daughter part of their liver so she can live and watching the outpouring of how many people just simply say "Yes". Extreme is getting the call that a liver has been found for your tiny little girl and being told just come to the hospital in the morning, no rush...when you know it should have been a rush, but that means the child you are getting the organ from hasn't been removed from life support yet. Extreme is handing your 5 month old baby over to complete strangers for a surgery that lasts 10 1/2 hours only to be told afterwards that your child might not have made it to Christmas by the surgeon, which was only about a month away, because she was worse than they had originally thought. Extreme is 2 months of isolation and continued life saving medication twice a day every day for the rest. of. her. life. just so she can live. Extreme is watching your beautiful almost 9 year old child be ashamed of the scars she has because she was born with a disease that no one can predict, no one can tell her why she contracted, and no one can cure. Transplant is not a cure. It is simply a treatment.

If this bill goes through, she could be dropped from her insurance along with so many other children with pre-existing conditions. She could be forced to change hospitals or healthcare providers. She could be labeled high risk. All of these things could lead to her eventual death. Just because she was born, someone found it in their heart to save her life when they lost their child, and she lived. That's it. That is all she has done.

Granted, she could not be dropped from her insurance. They could just raise her deductible and lower her coverage so much that we, as her parents, can no longer afford to pay for her medical care or she is refused from treatment because the Hospital isn't getting paid for her care by the insurance or us.

Again, all she did was live. Tell me why it's ok for a little over 200 people and the POTUS to say it's ok if she dies. Also, think about this. If you are not ok with abortion but are ok with children (even adults) losing their life because they have a pre-existing condition, you no longer get to call yourself Pro-Life, you just get to call yourself anti-abortion. Plain and simple.

For those of you wishing to share, please feel free.

The gift of life....4 years ago

Four years ago today Ember received her gift of life.  Her liver transplant came just a few days after her daddy had gone through all of the testing to become her living donor.  In that time, a family was faced with the choice of letting their little one save other lives and they said yes.  We are very much aware of how important and how difficult their decision must have been.  I cannot sit here and say that I know how they felt that day, and still feel today on the 4 year anniversary of their loss, because I do not.  I hope to never know what it is like to lose a child and to be faced with the decision they were faced with in 2008.  I can say that I look at Ember every day and even though we know nothing really about her donor, I see him in her every day.  I see the gift that we have been given.  I see the time, hope, love, and happiness we have been given.  We have been truly blessed by our donor angel and his family.  We continue to teach Ember (and her sister) about love, support, and the true meaning of selflessness.  I have to say, however, that I have learned so very much from Ember in these 4 short years.  She has taught me the true meaning of compassion.  Her heart is so very big and so very open.  She has so much love to give and gives it freely.  It is hard to imagine that she may not be here today without her new liver.  We always try to tell new liver families that we meet that Ember is not the typical liver baby.  She really never has been.  As I look back over the posts I made in the weeks leading up to Ember's diagnosis I am amazed at how much her little body fought the terrible disease she had.  She even responded to medicines that were not even designed to treat her specific liver disease.  She never really cried or fussed about how uncomfortable she was.  These trends carry through to the little girl she is becoming.  She gets sick, but never complains about it really.  She is one of the strongest little girls I have ever seen.  She loves her sister with all of her heart even if they get on each others nerves.  She loves her grandparents, her dog, her kitty, and misses her Pop more than anything.  All of these things we wouldn't see had it not been for her donor angel.  We love him and truly hope that his family knows exactly how much we appreciate and love them as well.  We honor their loved one in how we teach Ember to care for and to love others and in how we will continue to teach her about her gift and the true meaning of sacrifice.  We hope that the legacy we leave behind for her donor angel will be felt and heard by many and everyone who comes into contact with her will learn from her.  Even if it is in a very small way, even at 4 years old she has so very much to teach us.  We are so blessed to have her in our lives.

The call...4 years ago

Four years ago today we received the call that would change our lives forever.  Around 9:30pm on a Sunday night we received a call from one of the transplant coordinators at Children's telling us that they had a possible liver for Ember.  We arrived at the hospital Monday morning and started waiting to receive word about surgery.  Here is what I wrote about getting the call. 


"The call....

Last night ar around 9:30m we got a call from Children's telling us that there was a potential liver for Ember and we needed to be at Children's between 8am and 9am this morning. Her surgery wont be until this evening if everything goes well. Please say a prayer for the Donor family and that this is a go. Once I know more, I will make sure to pass it along."

 
Today Ember is a happy and healthy little girl.  We couldn't be more blessed.  Please keep her donor family in your thoughts as I am sure this is a hard time for them.  While we are celebrating her second chance at life, they are mourning the loss of their little one.  

3 years ago...

...today, at this time, I was in a waiting room at St. Louis Children's Hospital, with my family, waiting to receive calls from the OR to update us on Ember's Transplant.  I remember the day like it happened yesterday.  Everything is permanently etched into my mind.  It is hard to imagine that three years ago, she received her gift of life.  While it seems like a lifetime has passed since that point, I also realize that it really isn't that long ago.  We have SO very much to be thankful for in those short 3 years.  She has grown into a beautiful, vivacious, loving little girl.  She is happy and healthy and seems to have no worries in the world.  Above all else, even if we didn't have those other things, she is still here. 

Her donor angel is thought of every day even though we have never had the chance to know his family.  We continue to raise her in a fashion that we would hope her donor family would be proud of.  We talk with her continually about what it means to have her gift and try to explain what the true meaning of giving is.  I have always tried to be the strong one in the entire Transplant situation, but sitting here typing this blog is bringing tears to my eyes.  (That means you have to forgive typos!  I can't see the screen here!) It's hard not to tear up when I think of everything she has been through in her short little life.  She continues to be one of the strongest people I know. 

The further out from Transplant you get, the more relaxed you get.  This means meds are missed, I don't panic if sanitizing gel isn't attached to my hip at all times, and I chalk certain things up to the old say "Schtuff happens".  One thing that hasn't changed is the feeling of gratitude, an over abundance of love, and a realization of how blessed we are.  We have our baby when I know many who do not, far too many who do not.  We have come SO very far in such a short time.  Ember now has a beautiful little sister that she adores and she is no longer allergic to peanuts.  She is doing phenomenal in preschool and loves to spend time learning.  Reading is one of her favorite things to do, so we thought that we would donate books to Children's this year to commemorate her transplantiversary.  Ember approves. :)

It's hard to believe that we went from this: 

To this:

in those three years!

For those of you still waiting for "The Call", don't give up hope.  We are here with you and waiting to welcome you to the other side of transplant.  We hope and pray that your will have the perfect gift at the perfect time. 

My Mother -In - Law found a poem that I would like to leave with.  I think that it absolutely beautiful and says all the right things.

MAY GOD bless all donor families and the precious and loving memory of all donors, for they who give the Gift of Life in so doing demonstrate a deep and very profound understanding of another of God's most perfect gifts to mankind: the Gift of Love.


Without the Gift of Love, the Gift of Life through organ donation could not and would not be possible. May all recipients receive the Gift of Life in the same manner and spirit in which it was given: with love and compassion.

May all recipients continue to privately and publicly display their gratitude for this precious gift, now and forever .

May all recipients share the Life and the Love of this gift, and use it to make meaningful and lasting contributions to society and humanity.

May all recipients live life to the fullest each and every day, and in so doing pay loving tribute to their donors and donor families.

May all recipients do more than merely say thanks, may they be given the strength, courage, wisdom and direction to do thanks through their actions, their deeds and their accomplishments, and by their everyday deportment, at all times showing honour and respect for donors and donor families, who so lovingly and selflessly gave the Gift of Life.

May all recipients seek, find, understand and fulfil the purpose for which they have been so graciously chosen to receive this special gift.

To all donor families and the memory of all donors, God bless you. Thank you, we love you. Thank you for the Gift of Life.

Three, Three, Three......

Since Ember has turned 3, she tells everyone!  I mean everyone!  Even if they don't ask her how old she is!  It's cute, as is most of the things that she does.  However, three is turning into a very trying time with and for her.  I know she is trying to exert her independence, but she is getting into SO much trouble!  And the fit throwing is SO over the top.  She has always been a drama queen when it comes to certain things, but now it is in full force!  And I mean WOW!  Also, some of the things she comes up with are insane!  I am sure she is picking them up from kids at school, but still!  Ugh!  What happened to my sweet little girl?!  She even got into big trouble at school yesterday which rarely happens.  Suddenly she isn't listening to teachers and talking back to them!  I have no idea what I am going to do with her! 

On a better note, however, she does so good with her sister now that they are both going to preschool on the same days.  The teachers have told me that Ember is so very sweet to her sister when they are on the playground together.  And, I have to admit, 99% of the time they are very good with each other at home too.  However, there are times when Sissy gets tired of Ember and wants to be left alone.  Ember hasn't learned when that is yet so she end's up getting scratched, pushed, or both!  Most of the time she listens to me when I tell her that Sissy wants to be left alone, but three year olds will be three and sometimes she has to learn on her own!  I guess this is true with every age, but it seems worse with three! 

Though, Sissy is picking up on the behavior and seems to be trying to go through the three stage at 19 months!  Do you think I will get lucky and she will be well over it when she actually hits three?  Hey!  I can dream can't I?

3 years old!

That's right, 3!  Can you imagine?  This tiny, yellow baby that we brought home from the hospital is now a perfectly happy and relatively healthy 3 year old?!  Me either!  I also can't believe how much Ember has grown over the past year.  Not just physically, but developmentally as well.  She is incredibly smart!  Way too smart for our own good. 

She loves preschool and loves to play with sissy.  However, the terrible three's set in about 2 months early and they rear their ugly head every day!  If mommy makes it to her 4th birthday, it will be a miracle! ;) 

We had a small party for Ember yesterday at her Maw Maw and Paw Paw's house with just family.  Unfortunately, she wasn't feeling 100%, but I think she had a great time!  She kept telling everyone she could that she wanted her ball pit at her party.  That was something easy to do since the ball pit lives at Maw Maw and Paw Paw's house.  We brought it outside for her to play in and she loved it.  That is one of the best presents she has ever gotten.  She still loves to play in it.  And, now, she plays in it with her sister.  It's great! 

She is getting to be such a little girl now rather than a baby.  She tells us, most of the time, what she likes and doesn't like.  She comes up with the funniest things sometimes, even when she is being a bit on the naughty side.  She told me the other day, after I told her to do something, "I'm a little cranky right now."!  It made me laugh, but it was finny that she came up with that and thought it would get her out of doing what I had told her to do.  She figures things out so quickly too.  She knows how to use the computer already and wants to be on it anytime mommy and daddy are on it.  I told daddy that he was going to have to build her a computer of her own so she can play her own computer games with us. :)  I think she would love that!

She is going to be a busy girl this summer.  She is starting a tap/ballet and tumbling class next week as well as swimming lessons.  She is going to love the swimming lessons!  I hope she likes her dance class.  I know she loves to dance around the house and be silly, but it will be interesting to see how she does with an actual structured class.  We also plan on spending a lot of time outside this summer so the girls can wear each other out!  :)  I can only hope that as the next year goes on, she continues to grow in spirit, compassion, and overall well being.  I have no idea what the coming year holds, but I am sure it is going to be as enjoyable and go by as quickly as the last three have gone. 

Home away from home....

First of all, I know that I am such a bad Liver mommy as far as the updates go!  I hadn't realized that the last update was in December!  Ember has been doing relatively well since the last update.  We did have an overnight stay a few months ago at Children's for about of pneumonia.  Even though we hadn't been on the floor with her since she was 8 months old, it was still familiar and it was like we were visiting our long lost home.

Well, Wednesday night we visited our home away from home again.  Ember came home from preschool and had some blood in her stool.  She also had diarrhea with it.  We called the GI Dr. on call and when I talked to him, I had originally thought that it was blood in her urine so he told us that we could wait until the morning and take her to see the pediatrician.  About 30 minutes later, she went again and I knew it was stool.  So, I made the decision to take her to the ER.  My mom rode with us and dad took Autumn.  Ember was already SO very tired on the way up to the ER, but she fought her sleep.  Of course, once we arrived at the ER there was no way she was going to calm down and go to sleep.  Matt met us there and after we checked her in we noticed that the ER was very crowded. 

Once we sat down we were told by some people who were there that they had been there for two hours already.  Ember went to the bathroom several times when we were in the ER waiting room.  Then we were told that the wait was up to 4 hours!  Needless to say it was not a happy wait for us, but she needed to be checked out.  We got back into an ER room at 12:30am. We had arrived at the ER at 8:15pm!  They ran labs and wanted for her to give them a sample.  We tried to get her to go again, but by then she was exhausted and of course she didn't give them one.  We waited for her labs to come back to make sure all of her numbers were good.  They finally told us that they were going to keep her at around 2:30am.  Ember had fallen asleep on daddy and I was sitting in the chair falling sleep too.  They let us sleep actually until her room was ready at 4:30am.  So, we got to her room, got her in bed with me and we all promptly fell asleep. 

Of course when you stay at Children's, you get to see a lot of Dr's!  So, around 6ish they started coming in.  Most of the time I was awake, but sometimes I am sure they thought I was talking crazy.  Ember actually did really well with all of the blood pressure, listening, and temperature taking they did.  She also got the hang of pushing her IV pole around her room by herself pretty quickly.  They pumped her full of fluids and Thursday all day she had no more blood in her stool.  So, we took naps, ate badly, and watched a lot of sprout while she wanted to be held a lot.  She never acted like she felt bad, but I am glad they decided to keep her just in case.  We did get to come home Friday which was good.  Autumn stayed with Grammy J while we were in the hospital and needless to say I missed her.  Ember did too.  She kept asking about her sissy and if she would see her when she went home.

Since we have been home she has been playing and running around like her normal self.  She has been wanting to play outside, but the lovely snow we just got on Saturday has kind of dampened that.  Hopefully spring will hurry up and bring a few warm days so my little ones can get some good park time in!  Ember loves outside time and I can't wait to see how her and Autumn play together at the playground. 

We are going to get her labs done again later this week.  Hopefully there will be nothing more to report.  I will try to give you more updates!  I am sure there will be plenty once the weather warms up!  Oh!  And as soon as she starts her dancing and tumbling class!  Can't wait!