Reality Is......

I entered Emma's room this morning to find her in her usual spot. All curled up in the corner of her bed with her bottom way up in the air. My only thought was, "She's here with me!! She is here in her bed...in our house...with ME"! I gladly got all of her supplies ready to give her a breathing treatment. As I propped her sleepy body up against the pillow to put the mask on her face, her tiny little head started shaking from side to side (as if to say No Mommy...it's too early...let me sleep just a bit longer). After finished I happily went to draw up the 4 medications for the morning and mixed her milk (which now requires 3 different supplements to be added). During the time I was doing this, Miss Emma had crawled into a different corner of the bed, both hands on her face, face down, with her bottom up in the air. I woke her up again to take her beloved medicine. However, the medicine that she used to love has now been added to the regiment of nasty tasting medications! Sips of milk in between and the medicine is gone. Next I got Emma dressed and ready to go (including packing all of her "new" things to go to the babysitter...Epipens, thickening agents, caloric additives, etc.). I put Em into the car and we head out to the babysitters (the 30 min. drive). As we drive down the road to Miss Joline's house Emma starts to clap and cheer...happiness at it's best...what a great joy to know that she is in such great care!

As I went to get Emma out of the car...HUGE pile of you know what...all over the car seat, all over her clothes, all over her coat...UGH! I am overjoyed to take her in to the sitters house, clean her up, then clean up the car seat.

You may wonder why I am so happy to do all of these time consuming activities. The activities that I know that most parents do not endure on a daily basis. The reason I am so overjoyed to do these is because I GET to do these things. Last week, on this very day of the week, my reality was that I may not be taking my baby home. When that hits you in the face...you learn to enjoy even more than you ever have before... even the most cumbersome activities...as long as they include your child.

My reality today is that my child is here with me! She will brighten my day today, and I will be there to help her with ANYTHING that she needs! She is the light of my life. In some ways I wish every parent could experience what I did last week. It truly helps to appreciate every aspect of your child.

WOW!!

Wow!! That is one word that sums up the past week. At times I have felt like I was run over by a truck, thrown in a washing machine during spin cycle, and completely hung out to dry (sometimes all 3 of these....AT THE SAME TIME). It amazes me how one can feel utter anguish one day, and complete joy the next.

Emma had a "procedure" done on Easter morning. This was her 3rd "procedure" to be done...in a week (under sedation and intubation). We were slightly fearfull but reassured by the doctor that, "I have done 120 of these...and I have never had one go bad"....let's just say HE WON'T BE SAYING THOSE WORDS AGAIN!!

We sent Emma off with the nurse that morning..only to be approached by the doctor 20 minutes later. A look of terror on his face that I will never forget as he said, "She did not do well"....immediate reaction was that they lost her! Complete anguish overtook my body as I sobbed and sobbed while the surgeon attempted to console me. They had stabilized her, but it was pretty touch and go...and she was to remain intubated as we took a journey to the PICU.

Thought for that day....that was the worst feeling that I have EVER had!!

The next day they attempted to extubate Emma right as my husband and I walked into the room. I looked at the monitor and saw that her O2 SAT was 37%...NOT GOOD!! Then I made the extreme mistake of looking at my child!!

Thought for the moment...that was the worst thing that I have EVER seen!!

Emma was able to stay off of the ventilator, but it was very scary for a couple of hours!

Today she woke up ready to take on the world! She is almost off of oxygen, and the joy to see her awake and interacting is one that I cannot put into words.

Thought for the day...enjoy every breath that you take...every moment that you live, and really learn to appreciate the WOW moments! Seeing my baby girl smile today was one of those WOW moments!

Completely Drained!

I am going to start by saying that I am going to whine quite a bit in this post. So, if you don't want to listen to a pathetic Mother whose child has been through the ringer this week...then go ahead and exit out of this post.

Now, for those that stayed to "hear" me whine...here goes:

Parenting is not supposed to be like this! In the past week I have:

1) Held my child while 20 needles where poked in her back (to check for allergies)
2) Watched her be put to sleep by "laughing gas" twice so she could undergo procedures(which included a total of 7 IV attempts...yes, 7...she looks like an IV drug user!).
3) Experienced the pain right along with her of 3 blood draws
4) Answered numerous questions about my pregnancy, our living situation, our pets, her development, what size underwear I wear (OK...I'm exagerating there)...only to turn around and answer the EXACT SAME FRICKIN QUESTIONS AGAIN 5 MINUTES LATER...then again 5 minutes after that!! READ the CHART people!!!
5) Held her down for 3 X-rays
6) Soothed her time and time again while she screamed bloody murder
7) removed blood from my brand new white shirt (her nose was bleeding excessively after a sinus biopsy)
8) Held her down while they did a catheder to obtain a urine specimen...and right after that they did a nasal suction (tube WAY up the nose) to obtain a "booger" specimen!

Yes, I am exhausted..and I do not see the light at the end of the tunnel right now. My child is admitted into the "dark abyss" otherwise known as the hospital. While it is a wonderful place and I am so glad that it is there...I don't want US to have to be there. And, to top it all off...we STILL don't know why Emma is sick this evening. SIGH!! As we head into the weekend when the hospital turns into a ghost town...we patiently wait for Monday as Doctors will emerge once again into daylight...hopefully with a very bright and cheery insight for us! Until then...I am feeling a "little" BLUE!!!

Thanks for listening! Here's a great picture of my little princess!! I pray for her to look this healthy and happy again very soon!!

Hospital "Fun" pictures

Princess Emma had a fine time this hospital stay. She is once again feeling like royalty, and we cherish the time that she feels good! I swear that she has to make a visit to the hospital every few months to get "pampered". I keep telling her "Honey, we could get pedicures, go to Bath and Body works, go shopping for crying out loud...there ARE other ways to pamper yourself!



Well, Grandparents came through in our little Princess' eyes! She got a Barbie purse full of a BARBIE CELL PHONE (that "really" calls Barbie...it's a flip phone and it does look real), 3 necklaces, bracelets, make-up, and A WATCH! This was the big hit with Emma! She thought that it was the greatest! It even came with 3 watch bands! She had to wear it every day and show it to everyone that entered the room. Here are a couple of pictures of the great Barbie watch:









Finally, our little Princess needed some rest, so Daddy put her in between the pillows while she was watching the alltime favorite...Elmo...and off to dream land she went! Sweet dreams Princess!!

Pictures ????

The day before Emma was admitted to the hospital...we went roller skating! It was SO much fun! They let me take her out in her umbrella stroller. She loved it!! This first picture may be sideways (sorry, I tried everything to get it to go the right way?)





This is Emma showing her "serious" face...she's so silly!






How does this "Hokie Pokie" thing work??




When we got home she practiced riding her horse. Try telling her that horses aren't pink...HA!

A Few Pictures

Love/Hate Relationship

I am experiencing a Love/Hate relationship with my life.

Things that I love: 1) I love love love to be a Mom 2) I love my little angel with all of my heart and soul 3) I love being a wife...even though my husband and I don't always see eye to eye...It is great having someone to come home to, and someone to share everything about life. 4)I love my job (as crazy as that sounds...I have the best job that anyone could ask for...I have 9 5 and 6 year olds that love me and think that everything I say "just has to be right"! 5) I love the place that I live...it is beautiful, mountainous, varying seasons, etc.

Yes, I do have SO much to be thankful for and to love...so why do I have this hate feeling inside??

Things that I hate: 1) I hate that my child has to go through so much! 2) I hate that we are in the hospital. 3) I hate not having all of the answers 4) I hate not knowing what the future will be (I know that no one does, but when you have a "medically fragile" child I think that fear in compounded) 5) I hate not being able to lead a "normal" life 6) I hate it when people feel sorry for my situation....when they express it to me it makes me cry...I feel even more pathetic...then they feel even more sorry for me...it is a losing battle.

Yes, my life is different! That commercial that says "Everything changes when you have a baby" WHEW!! They weren't kidding! Would I trade it if it meant not having Emma in my life....NOT IN A MILLION YEARS...I WILL DO ANYTHING FOR THAT PRECIOUS CHILD OF MINE!!!

"In the SLAMMER!!!"

Yes, we must have committed the "ultimate crime" because we ended up in the hospital with Emma on the first 60 degree weekend! The best layed plans (just yardwork, but hey...we would have been outside) were put on the back burner. I took our sweet girl to the doctor Sat. morning. She had been on antibiotics for a week, and Friday she started taking a turn for the worse. Sat. morning she had a slight temp. and she just wasn't acting like herself. I took her to the doctor, and they tell me that HER oxygen Sat. was 74!!!! WWWHHHAATTT???? No, that can't possibly be! This child was on oxygen for a total of one year...I KNOW the signs to look for (bluing around the mouth, feet and hands...rapid breathing...ribs showing when breathing in)!! 74 is a VERY LOW sat!! So, I am in the Urgent Care, which is about 1/2 mile from our hospital, and they tell me THEY HAVE TO CALL THE AMBULANCE when an O2 Sat is that low! OK, in our town the ambulance team is all volunteer, so they send out the call, and the ambulance personnel receive the call..rush to the hospital...jump in the ambulance...and go to the call. If you add it together, does it make ANY sense to have the AMBULANCE come to get her if I can drive 1/2 mile to the hospital??? I convinced them of this and we were on our way.

She is doing better today, and we are hoping to be "sprung from the slammer" tomorrow! LOL!! This reminds me of when we were staying in the Ronald McDonald House after Em's transplant. We always called that "Being out on Parole". Hey, when you have been through HE_ _ with your child...you have to find humor SOMEWHERE right??