Alone

...Alone...

...Tonight, I thought I was going to lose her...

I was getting her night time meds together when she started to cough. It was no different than any other cough to start. She continued and when I looked at her, she looked distressed. She closed her eyes and began these long coughs that just wouldn't seem to end. Then her face began turning red. She lost those rosey cheeks I love so much and it all started to become one big blur.

...Alone...

I put her meds down on the coffee table and picked her up, managing to remain somewhat calm. Inside I could feel my heart beating faster and faster. I started calling her name out loud because she just wouldn't open her eyes for me. Slowly, her lips began to turn purple. I started to remember how my mom looked when she died in my arms from an allergic reaction to Vicadin. She had an asthma attack when I was 15 and became limp in my arms. You don't know what to do. You know true fear. Reality hits you hard when you realize that you might have just witnessed someone's last breath. Their last look. Their last touch with warm skin.

What happened tonight was an all too familiar feeling for me. First my mom, now my daughter?

I began swiftly rapping on Charlie's back with a cupped hand. She still had her eyes closed and she stopped breathing. Her lips, now completely purple, told me to trust my instincts. I threw her on to my shoulder and rushed her to the bedroom where the suction machine was located at the time. I put her on her side facing me while watching her little body trying to get air. She couldn't. I turned the machine on and inserted the tube down her throat. I wanted her to vomit so there would be nothing obstructing her airway. Success!

...Alone...

It took a few tries to get her clear but she finally did it. I hated making her vomit but it was the only way I could think to help her. I trusted my instincts. I went with it. I was in control and didn't panic. I got her breathing again. Just like my dad did with my mom. We put my mom on the floor and while we waited, what seemed like eternity, for the ambulance, my dad did CPR on her. He didn't give up! I, however, crawled into the corner of the bathroom where my mother lied with no pulse. Holding her inhaler and watching my dad be insistent on not losing my mom. It worked! He kept doing what he thought was right and in doing so, she is still here today.

...Alone...

Charlie finally opened her eyes. She had tears streaming down her face but no cry to follow. She was uncomfortable, probably from me pounding on her back, but she was awake and alive. I let her stay on her side for a while. Letting her drain whatever might be left in her throat. I was kneeling on the floor just looking at her. I broke. I broke. I broke. I cried while rubbing her back. I told her that she cannot leave me. Not like this. Not in such pain. I don't want her last moments to be filled with pain and discomfort.

After fully draining, I picked her up and just embraced my baby girl. Rocking back and forth. Feeling her breathing effortlessly. Thanking myself for being able to control the situation.

Now, she is sleeping peacefully and I, once again, am alone...

To be continued...

Children's Hospital, Boston

On April 25th, Charlie and I ventured out to Children's Hospital Boston. We are regulars there since they are the ones that know exactly how to take care of her medical needs. So, of course we hit traffic on our way. Even though I always leave fairly early, it never seems to matter. But at least the traffic moved at a decent pace this time. So, I found a parking spot on the 8th floor (I forget what animal represents that floor) and I began to get her stuff out of the van. It was pretty quiet and noone else was near us. I like parking higher up because then I don't feel the pressure of other people parking too close or all together, not knowing how to park at all. So, I got her chair out, got her bag and then unbuckled her. I put her in her chair and attached her harness. Put a blanket over her lean but long little legs. She had a smile on her face. If she knew what was going to be happening shortly, I guarentee she wouldn't be smiling!

So, we went to the elevator and of course there were children waiting to get on along with us. All talking to their parents. Having little conversations that seem so important at the time. The mothers and fathers have a look of pride on their face. I love that look. That is one look that I know I have! People get on the elevator and just look at Charlie. They usually cock their head to the side as if to say 'Poor Dear'. I just look at them and smile. Then I start playing with Charlie's hair. We get to the revolving door at Children's and I usually take a deep, cleansing breath before entering. We go around and around and then we are in. Such pleasant faces greet you and ask if you need any help. I asked "What floor is Radiology on?" and the employee pointed me to the set of elevators that I know quite well. "Second Floor" she said with a smile on her face. I went to the desk to get my parking ticket validated, cause if you don't it will cost you god knows how much for a few hours. It's only $8 when it's validated.

Anyway, into the elevator we go and we got off at the second floor. We went and registered. I swear I have said my last name so many times that now my maiden name sounds weird. We were sent to a different area to wait. The T.V. was on one of the Childrens Hospital stations and it was one that plays music. So, without hesitation, I picked my baby girl up and took her over to the T.V. I started to dance with her held close to my body and out of the corner of my eye, I could see her smiling. I was singing to her also. I think she likes to hear my voice, at least, that's what I like to believe. We finally got called in after almost a half an hour. We were brought to a room to have her weighed and changed. After I put her johnny on, we headed to the sterile x-ray/procedure room. It's funny how different everything sounds in those rooms. There's a slight echo and it's always a little colder too. It's just plain erie.

All the doctors asked me "Are you Mom?", and with a big smile I would answer "Yes!". They put my metal shield on and we were almost ready to go. Charlie's legs were strapped down since she is usually in the fetal position. The doctor performing the procedure applied some numbing solution around the site where the Mic-Key button used to reside. After the button was carefully removed, Charlie immediately started to get uncomfortable. I stayed by her head and held her arms up. She wiggled but then just started breaking out in hives, just like her mommy. I asked the nurse if she could have some oxygen and she agreed. They then inserted a long tube into her button site and passed it through to the Jejunum (area right below the stomach). I was able to watch this all happen through the power of a moving x-ray. They then inserted the actual tube which would be taking the place of the Mic-Key button. After they completed the procedure, Charlie took a deep breath and passed out. They said she was all set and that we could go.

I carefully changed her diaper and wiped her face down. She looked so peaceful afterwards. Needless to say, I was relieved that everything went as planned, for once! I went to the main floor of the hospital and donated some blood and we headed home...

We took a nap together... we needed it...

To be continued...

How cute are we together??

Why Us?

Today, a co-worker brought in his beautiful little baby girl. These days are very tough for me to get through. My head is happy that they are all healthy and happy (and tired of course) but deep down inside, my heart is breaking... This is not the first time this has happened either. There have been many people that I work with that have had their babies after Charlie was born. Some of them complain. I listen. Like a friend. But I try not to let on that I could only wish to have such things to complain or worry about. Some people do not approach me with such silly comments like "Oh, I just couldn't keep up with the little one because they just wanted to run, run and run". Others say "My son was talking back to me"... I wish... The thing that I have that others don't (besides the most beautiful little girl in the whole Universe) is my 2 year old loves to CUDDLE! What other 2 year olds do you know that still enjoy doing that??

I cannot help but ask "Why?" Again, what made my husband and I so special that we would be entrusted to take care of such a delicate little AnGeL? Are we worthy? Am I worthy?

And if I am, will I ever feel that way about myself? I highly doubt it...

To be continued...

Charlie Girl & Rocco, the Pup!

This morning I was getting ready for work and when I came out into the living room, Charlie's puppy, Rocco, was waiting to go out. I asked him "Would you like some cheese to go with your Whine?" Hehehe... He looked at me as if to say "Real nice Mom!" and then he continued to wait until I was ready to take him out. I proceeded to go past him to find that Baby Girl was awake in her little bouncy holder, which we have propped up on my computer chair. She was eating and as soon as I said "Good Morning Baby Girl", her mouth opened wide along with her eyes. As I went in to give her a kiss, she smiled. A great big smile. With her 5 little teeth, she made my heart just melt! She is just so stunning! I still cannot believe that I had a part in creating the beautiful little girl that she has become! I was at the bowling alley playing my last game for the summer and saw a little girl, who I assumed was around Charlie's age, running around and having fun. Her mommy kept running after her and her grandpa was just enjoying his little granddaughter. I turned to one of the ladies we were bowling against and said "I wonder what Charlie would be doing if she was born okay". She looked at me and said "I am sure you wonder that a lot". I do but I don't let those feelings stop me from loving her the only way I know how.

She is my most precious gift... My husband and I have her in our life for a very special reason... I am still trying to figure out what that reason is...

Whatever the reason, one thing I am sure of... I wouldn't change her for the world!

To be continued...

A Long Night for Charlie Girl

So, lastnight Charlie and I had a fairly long night. I took Charlie into the bedroom with me to sleep on the big comfy bed. I put her down and went to walk the dog. When I got back, she was eating through her g-tube but still wide awake. I went to lay down next to her and she just seemed so uncomfortable. So, I wound up staying up with my Charlie Girl. She was throwing up a bit, which is something she does often, but she couldn't get comfortable. It was about 12 when I started trying to ease her discomfort. I relieved her gas through her g-tube, which is a tedious task but I will do anything for her if is means she will feel better. Bubble by bubble, they came out for air. With each lift of her legs we worked all the pesky bubbles out. By the time I was done with that, she seemed a bit better but her legs kept doing that bicylcing motion which could mean 1 of two things. One would be that she needs to poop or she could be having a seizure. Luckily, she has not had a seizure like that in quite a while. Don't get me wrong, she still seizes quite often, but they are mostly in her face, more so in her eyes. When she has a seizure I just feel so helpless. I never know what the next one will bring. Anyway, I helped her poop a little. The face she puts on when I help her (I won't go into too much detail here) is priceless. She looks very intense! She gets all blotchy too. Just like her mommy :) After that, I changed her outfit because she had vomited quite a bit. I put her in a two piece pajama set that my mom bought for her. It's pink (of course) and it's long! She looked beautiful.

After I put lotion on her body, changed her diaper, cleaned her mouth, flossed her teeth, cleaned her Mic-Key button (which is what the port that the tube locks into for her feeding and medication purposes), washed her hands and feet, and cleaned her ears, she was fairly calm. I sat her on my knee, facing me. I just kept looking at her saying "Can you see Mommy?". Over and over I said that. I held her close and kissed her over and over and over again. I would swear she was looking right at me but the look is very empty in ways. She would answer me sometimes with a sound, as if to say "I am here mommy"... I don't know if she even knows who I am. If she knows how much I love her. If she knows how much pain I feel knowing that I can't help her. If she knows what I would do and give up for her to live. Live her life...

Right now she depends on my husband and I for everything. She can do nothing for herself but cough up anything that might enter her lungs. Which is huge for her because that is something that we cannot do for her. I just hope that she's not in any pain. I hope that this is all just a big dream for her and that when the time comes, she will feel no pain. No agony.

She is my life... She holds my love and when she leaves... I am afraid that I will be dead inside. Alone. Drained. Afraid. Scared. Lifeless.

All we can do is wait...

Anyway, after all was said and done lastnight, or should I say this morning, she and I cuddled while we both fell asleep. Those are the nights that I treasure... And always will...

To be continued...

I am starting this blog to help myself get through some very tough times. I was encouraged to do so by my sister-in-law. I agree and am willing to give it a try. It will be weird for people know all that goes on in my head when it comes to my darling baby girl, Charlize... aka: Charlie Girl*

I will post more shortly, I just wanted to start here and I will see where it goes from here. Feel free to post and add your comments and feelings about my Charlie Girl...

To be continued...