Gracielicious

Natalie Grace (we call her Gracie) was born December 17, 2001...barely breathing, barely moving and no cry. About 15 mins or so after she was born she stopped breathing and had to be resuscitated. No answers...we believe I had preeclampsia that was missed by the doctors..all signs point to that so that is all can think other than at some point inutero or delivery she clamped her cord or it was wrapped around her neck at some point causing her blood flow/oxygen to be cut off. It is very difficult for me to not have some sort of answer/closure as to what happened. She is 6 yrs old now and I still relive her birth over in my head every night as I try to sleep. I know that seems like a lot of nites...but I truely cannot remember a nite I haven't relived it. Well...back on track here...so it was all down hill from there. She spent almost 2 months in the NICU at Duke where they would preform every test known to man to try and figure out what was wrong. The MRI showed that at some point either while in utero or during birth she suffered lack of oxygen. She was then diagnosed with HIE (Hypoxic Ischemic Encephalopathy). She had no suck, swallow or gag reflexes and suffered terribly with reflux. After weeks of on and off again intubation's and infections such as pneumonia and RSV she became strong enough to breath on her own and slowly worked her way out of the NICU. She was placed with a G-tube so we could feed her at home and had to have a nissen fundoplication (stomach wrap) so she would not reflux. We were sent home with an apnea monitor, a suction machine and caffeine meds to keep her alert so she would breath enough to keep her sats up at a safe level. It was so nice to be home....we lived at the hospital....we would take turns going home to shower and that was it...we slept and ate there everyday. It was so great to have her home....you really grow to hate hospitals...I still get nauseous from the smell of the hand soap, remembering scrubbing up to our elbows every time we just wanted to touch her. We learned a little everyday how to take care of her special needs...it was so scary...so delicate and fragile. She slowly began to gain some of her sucking and swallowing reflexes....when she was around 6 months old we didn't have to suction her anymore and were able to stop giving her the caffeine med. Though we continued with the apnea monitor until she was about a year old (just to be safe)! At 18months old we went through 42 sessions of Hyperbaric Oxygen treatments (HBOT) http://www.hbot.com/frontpage.htm it was after this treatment she began to sit on her own and became more interactive with us and also began taking small amounts of baby food by mouth! This was HUGE for us! At the age of 2 she was diagnosed with Cerebral Palsy. Gracie is now 6yrs old! I cannot believe she is 6! She has had such a rough journey...6 surgeries, and can't even count the hospitalizations from pneumonia's and seizures. She is such a toughie and a very determined little girl. Thanks God for her stubbornness! As of now she still has her G-tube, still doesn't take liquids or meds by mouth but does eat Gerber baby foods by mouth and also Cheetos Cheese Puffs! Her seizures are fairly under control with her Keppra medicine. She uses sign to communicate with us, though her fine motor skills are really weak she manages to use some traditional sign and some that is her own version of sign. She gets around the house by scooting on her bottom and she can stand and cruise along the furniture pretty good though her balance is a challenge! She can climb up on the furniture and in chairs...if she wants it she'll get it...there's that determination again! She is a very happy little girl! She loves her sister and brother and they know just what to do to make her laugh! She is very silly and gets so tickled when they play with her or when something is really funny in a book or on a cartoon! She has a great belly laugh! Sometimes we all get to laughing so hard because her laugh is contagious! She has come so far and although when she was born I remember hoping she would be even farther than she is....when she was a baby I (of course) had hoped she would be walking and talking and eating and drinking....etc. by now. But we are so blessed she has come as far as she has. Ari (Gracie's 10 yr old sister) said to me just a few days ago...."Mom, wouldn't it be so awesome if Gracie just woke up one day and was all better?" And then she said "But you know what Mom, I would kind of miss her the way she is." And that is so true! Don't get me wrong I want her to be "all better" more than anything on earth! But the way she is now is all we know...and it is the Gracie we know! Well, hope this catches you up to date...when she was born Jerry started up a blog for friends and family but after a couple of years we slowly stopped writing in it. So this is our attempt to start it back up again to keep you all posted! Thanks to all of you for your thoughts and prayers for our sweet Grace these past 6 years...keep 'em going! :-)