Very Busy

My goodness we have been busy!  Well, we discovered Lauren's extreme tiredness and color changes have nothing to do with her heart murmurs.  They are still open, but too small to cause problems.  Which is a great thing.  However, it leaves me wondering why this is still happening to her.  We are now considering the possibility of it being related to her lungs.  There is a chance that she may have been micro-aspirating for the last six months to a year and it has caused scar tissue to develop on her lungs.  We will see her Pulmonologist in two weeks to find out.  She is doing fantastic with her "walking".  She took eight steps last week for her Physical Therapist.  We have a new Occupational Therapist starting this Friday and hopefully she can help us with some of Lauren's sensory issues.  She is definitely beginning to act more like a toddler, some days anyway.  She is into everything!!!  She is wearing me out.  I have been so exhausted lately.  You'd think I would be used to doing all the extra's each day that Lauren requires, but it still gets tiring sometimes.  I feel like I am always so busy caring for Lauren, that I never have time for myself anymore.....

The Irritability....

Lauren has been so irritable and tired lately.  I have a feeling some of it is due to her heart problems and maybe even the neurological stuff.  She can't even drink more than two ounces of her bottle without having to stop and rest because she gets so tired.  Her irritability seems to get worse and worse as the day goes on.  Her evenings are awful and, of course, that's when our nurses aren't here.  Occasionally she gets so bad that I just have to put her in bed and let her cry out.  I've tried everything I can think of to make her more comfortable.  She has a great bed already, but we're getting an even better one at the end of the month.  She has lots of soft blankets and a pillow in her bed to help her rest better for naps and bedtime.  But even then, she doesn't sleep the greatest.  I have lavender scented air fresheners around the apartment too.  I end up having to give her Infants Advil just to see if that helps.  It appears as if sometimes she is in pain, but I can't figure out what hurts. 

She also has an extremely low pain tolerance.  I have baby-proofed everything!  I even have padding on the edges of the walls so if she bumps into them (which she does often) she won't get hurt.  Her poor little head is not supposed to get hurt, but she runs into everything.  She even ran into the toilet the other day while crawling and bit a hole in her lip. 

I swear it seems like as soon as we take one step forward, something happens and we end up taking two steps backward.  Her gross motor is going great, but the fine motor and cognitive skills have not.  She's drinking less of her bottles now too.

I'm trying to make the most of our "good times" and enjoy it when she does laugh.  Trying not to stress about everything....

A little about me....

I am twenty eight years old.  I'll be twenty nine in October.  Turning thirty scares the hell out of me.  :)    I am a single mom.  I have two absolutely beautiful little girls.  I grew up in a small town in Kansas.  I've lived in Kansas my whole life.  I graduated H.S. in 2001 and attended Emporia State University in hopes of becoming a teacher.  At the beginning of my sophmore year, my mom passed away of Breast Cancer.  I kind of "lost myself" after that.  I quite school and worked all the time.  I got married and then divorced within two years.  I even moved around a bit and worked little jobs for a while.  Finally, in December 2005 my life turned around (for the better) when I found out that I was pregnant with Lindsey.  She made me turn my life around and grow up to be a more responsible adult.  Then, of course, my life changed even more when I found out we were pregnant with Lauren.  Twelve weeks into the pregnancy, I left Emporia and moved back to Gardner with Lindsey.  I have a wonderful life here now.  We have a cute little apartment and a wonderful crew of nurses and physicians that help me out.  I've also got a couple of amazing friends who have been helping me out as well.  Unfortunately, I still can't go back to work yet, but things are still working out.

Really?

I apologize, but I need to vent a little bit....
I am so sick and tired of people telling me that Lauren is fine and that I am over reacting.  Just because she does not yet have a true diagnosis does not mean she's not a special needs baby.  I am tired of people acting as if Lauren does not exist and not accepting her for whom she is.  It pisses me off that some people whom used to be such a large part of my life can just throw in the towel and be done because I have a baby with special needs now.  Lauren is wonderful!  She is a beautiful, amazing, and smiling little girl.  She enjoys to be tickled, loved on, and she absolutely adores playing with her big sister.  Yes, she gets cranky and she has a feeding tube sticking out of her tummy, but that doesn't mean she doesn't need love and want attention.  If you can't accept her, then you need not to be a part of my life. 

Things are getting tough....

Hard to believe my baby girl just turned a year old.  My how time goes by fast.  As joyous as this month has been, it's also been extremely overwhelming and will continue to be until January is over....
Tomorrow we have to go in for a Swallow Study.  She's still having so many problems drinking her bottles.  If you look at her feedings on paper, I don't see how she takes anything by mouth so we'll see what the doctors say tomorrow.  Her hemangioma on her chin/neck has gotten bigger and changed in color so I'm also worried that it's possibly grown on the inside of her throat as well.
We also have upcoming appointments with her Neurologist and Cardiologist as well as her twelve month check-up.  I am terrified that she's going to need heart surgery.  Her hands, feet, and legs still turn blue/purple all the time.  It's hard to say whether it's cardio related or brain related, but either way, it's scary.  I don't know if I could handle her having heart surgery.  As if that's not enough, she was sitting on the couch with me the other day and turned purple from head to toe, but never stopped breathing.  I've never been so scared in my life!  I don't know how I'm going to make it thru these next couple of weeks.  Her neurologist is going to redo her MRI and EKG, hopefully those two things can explain some things to me.
I feel like I could just sit around and cry and give up and let her be who she is.  But the other half of me is determined to make her better.  I've gotten really good at arguing with doctors and fighting for her and advocating for her.  People keep telling me that she's fine and she will be a "normal" child some day.  Maybe I'm being negative, but I'd rather be in the reality and work on getting her better versus living in a "dream" and hoping for the best. 

Oh God, please give me the strength to keep going and to fight for my baby girl.  Please look over her and make her well.

Staying Organized

One of the most important things that I do for Lauren is to keep all of her information organized.  I purchased an explandable fifteen pocket file folder from Wal-Mart as well as fifteen three pronged folders.  I labeled each folder on the front with the physician's name and department along with having a folder for each home health agency, all prescriptions, a Behavior Log, and a Daily Log.  Each day I write down every bottle, diaper change, medication given, nap, any solid foods she may eat, any appointments and comments for the day.  I keep track of all seizure-like activity and when she has a "brain storm" or a speradic tantrum in the Behavior Log.  I take all of this to each and every appointment with me.  I can answer any question that the doctors, nurses, or case managers ask me.  I even printed off a copy of each "major" appointment / surgery and important information for all of her physicians so that they can all be kept up to date on her.  She has eleven physicians on her team and sometimes it gets hard to keep on top of them.  It does get very time consuming, but in the end, it's all worth it!

Remember to smile :)

I've always considered myself a strong and patient woman.  I've always thought I handled stress really well.  I've never been so challenged in my life until I had Lauren.  I love her with all that I have.  She and her sister, consume my heart and everything about me.  But I'll tell you what, I've never cried more than I have in the last eleven months.  I've never felt so alone as I have in the last eleven months.  I began to feel like a robot that was just going through the motions of the day.  Up at 6 am, drink some coffee, girls up at 7 am and start my day....  the only thing that would change was which appointment we had to be at that day.  Most single mom's at least have family to help them out with the children.  I don't have that luxury.  I'm doing it all alone!  I do get help from our nurse and from a few friends, but most of the time, I still feel very alone.  I go to bed each night wondering if there are any other parents out there going through exactly what I am going through.

Now I realize that I am strong and I have learned a lot about life, and a lot about myself.  I am an advocate for my baby girl and that means something.  I have been raising both of my girls on my own as well as having one of them be disabled.  I am raising her to the best of my abilities.  I do research all the time, I keep in touch with all of her physicians and keep everything organized. 

I've had to remember to smile each and every day, even thru the tears.  It's all worth it at the end of the day when they both look at me and give me hugs and kisses.  Lindsey tells me how much she loves me and Lauren shows it.  Lauren makes progress every day and that is something to smile about.  For every step forward, we usually take two steps backward, but we keep going.