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.

Listen To Me Please....

Since that first hospital stay in July, I have been begging people to listen to me when it comes to Lauren.  I have known since she was two months old that she was not your "average" baby.  I did finally get one group of doctors to listen to me in August.  We were admitted to CMH for "seizure like activity" only to find out that my baby was having at least three seizures per day.  So we now have added a Neurologist to our list of physicians.  She continued to have trouble eating, if I was lucky enough to get her to take anything so we placed a G-Tube in September to supplement the formula she wasn't taking in by mouth.

Skip ahead to ten months old.... we now know that she has two heart murmurs, three types of seizures, acid reflux, stage three kidney reflux, Failure To Thrive, Oral Dysphagia, muscle tone issues, developmental delays, possible hearing problems, and a thin corpus collasum.  As if that's not enough, she cries all the time as if she's in pain.  She's never like being swaddled, but now that she's eleven months old, that's the one thing I've found that will calm her down at night.  I have fought like hell to get these things noticed.  My eleven month old baby girl sees more doctors in one month than I have seen in my lifetime.  It breaks my heart!  We still have no diagnosis.  They just keep telling me she is "Atypical" so they need more time to figure it all out.  Her geneticist says that everything should tie into one genetic disorder.

 It's not all bad.... she does crawl and cruise along the coffee table.  We've taught her to wave bye-bye and say "HI" or "Ma Ma".  She's so beautiful and when she is happy, she laughs and plays with her sissy.  She likes to play with her toys, as long as they light up and play music.  :)   Her home health nurse, Miss Denise, works really hard with her to keep her going, especially when I begin to get stressed.

Our First Set-Back

I will never forget July 2, 2010.... Lauren had not eaten all day.  For the next two weeks I was lucky to get Lauren to drink twelve ounces of formula in a twenty-four hour day.  I spoke to our Occupation Therapist, Miss Jami, about it and she told me to take Lauren in to the ER immediately for risk of dehydration.  As soon as we got there, they admitted her and began running IV fluids. 
While in the hospital, they ran a chest x-ray to make sure everything was ok.  They did a swallow study, which she somehow passed.  I still to this day believe she should have failed that.  They did an MRI and discovered that she has a thin corpus collosum.  And they placed an NG feeding tube.  She was then diagnosed with Failure To Thrive......
That hospital visit changed my life ~ we followed up with our Pediatrician on the following Monday after discharge and she informed me that I needed to file for Disability (SSI) for Miss Lauren but never really elaborated and/or explained why.  She also told me that it would not be in my best interest to go back to work yet.  She said that Lauren needed me and required a lot of care and that it was best for me to be at home with her.  The hospital even sent out a nurse to our home once a week to keep an eye on her.
Before this first admit to the hospital, I had been doing my own research for a possible diagnosis for what was going on with my child.  Several people had mentioned Cerebral Palsy to me.  The more reading I did on that topic, the more it began to make sense.  After this admit, I heard those two words more and more from different people.

First Few Months....

At Lauren's four month check-up I explained to her Pediatrician all of my concerns with the crying and developmental delays.  She said that Lauren probably had acid reflux and prescribed her some Prevacid.  She said as for the crying "that's just her demeanor" and said that Iwould just have to deal with it.  She did, however, recommend that I get in touch with the Infant Toddler Services in our area and see if they would be able to help us out any. 
I received a phone call from Miss Susan, our Family Services Coordinator and our lives seemed to change.  I felt my first breath of hope after our first phone conversation.  Susan set up an appointment with me to come meet myself and evaluate Lauren with a P.T. from their office.  From first sight it was obvious to them that Lauren was very far behind in all elements of development.  First things first, we had to work on the crying, feeding, and get her to do tummy time.  She refused to use a pacifier and hated swaddling so I didn't have a lot of options. 
Lauren was very picky about her bottle nipples, but I just thought she was truly being picky.  Come to find out she has Oral Dysphagia and an extra large tongue.  While she eats I have to hold a rag under her chin to catch the formula that runs back out of the side of her mouth.  She has to drink her bottles in an upright position as well.  I ended up having to add rice cereal to each bottle to make it thicker and that seemed to help her keep the formula down as well as not drool out quite as much with each feeding.
Lauren did not respond to the sound of my voice, although she had passed her newborn hearing test.  Lauren also seemed to have trouble tracking objects with her eyes.  She could not control her neck and head to look around as well either.  She did not reach out or grab at toys intentionally.  She never brought her hands to midline or up to her mouth.  She loved to look at adult faces and watch different facial expressions.  At her four month check-up her development level was rated more towards a newborn's development.

Coming Home From NICU

Things got very difficult when I brought Lauren home.  She began crying almost constantly.  She would cry from the moment she got up in the morning until she went to bed that night, unless of course she was napping.  She was inconsolable.  I tried singing to her, walking around with her, driving in the car, sitting her in the infant swing or the vibrating bouncy seat - nothing worked!  I also slowly began to notice that she was developmentally delayed.  Lauren's tongue was large and it was really hard for her to breathe and eat at the same time.  Her tongue also quivered a lot.  Her eyes would move ever so slightly back and forth constantly.  She reminded me of a little rag doll that just laid around on the floor or in my arms all day.  Her cry.... it was always so high pitched and shrieking like.  She seemed to be in constant pain.

When it all started

My daughter, Lauren, was born seven weeks early (at only thirty-three weeks gestation) and had to spend just shy of five weeks in the NICU.  While she was there, they discovered that she had three heart murmurs and she continually had Apnea Spells.  Along with those issues, she was having a hard time eating anything by mouth.  I spent every spare minute I had sitting in her room with her and learning how to care for such a tiny little miracle.  I had a three year old (at the time) daughter at home as well so I couldn't be at the NICU all the time.  When Lauren was finally discharged, it was just after Valentine's Day.  She was sent home on an Apnea Monitor....