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May 29, 2019 Latest post:
Jun 10, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Aubree was born on August 21, 2002; she was a small little baby at 6lb 13oz. She was a lovely little girl, absolutely beautiful. We had no idea in less than 24 hours our whole life would be changed forever. Here is her story.........
Turner Syndrome was her diagnosis. I had never EVER heard of that before. Dr. Pierpont from Genetics was sitting in our room explaining chromosomes and working her way through them until she reached the 23rd pair (sex chromosomes). She explained - girls have 2 x chromosomes (XX) and boys have 1 X and 1 Y (XY); well Aubree has only 1 X (X). The other X had completely disappeared. This made absolutely no sense to me - I mean honestly - how can CHROMOSOMES DISAPPEAR??? Mike and I didn't even have questions to ask - I think we just stared at each other - probably because there were so many questions to ask that we didn't have any....if that makes sense.
The genetics team started going through all of the health issues Aubree could have...the list was endless. When they had finished they gave us a manual on Turner Syndrome. They stated that she could have some of the health issues listed in that book, a few of them or all of them. They had no idea and neither would we until it actually happened. I was floored that the doctor just told me that she had no idea what kinds of health issues my child would be facing. She explained that many things are on that "X" chromosome such as growth, reproduction, etc. There are many symptoms that automatically go with Turners like small stature and not being able to have children. However - there are many things that some girls have that others don't and there is no way to tell until it actually happens.
I was floored. I was filled with anxiety. I was done having kids. I had no idea what life was going to be like from now on. I had no idea what I was doing either. This was my first baby and I was a nervous wreck to begin with...now you add in Turners Syndrome....no idea what health issues she may have, the two heart conditions we did find at the hospital...we were overwhelmed. It got worse from there....she wouldn't stop crying...literally....around the clock screaming. She wouldn't eat. When she did eat - I learned what true projectile vomiting was like. We learned to stand across the room with a beach towel. Our carpet looked like polka dots from formula stains....whatever they put in that stuff NEVER EVER washes out.
I learned to shower in about 3 minutes and I still brought her bassinet in the bathroom with me to make sure she was always breathing. I learned what true paranoia was...I suppose the lack of sleep helped that along. My beauty routine vanished - literally. I became that mom you see at Target - the super stressed out looking one - running around in sweat pants - half covered in formula because the burp rag was soaked - trying to get out of there in super record time because your baby would not stop screaming and you just KNOW that everyone is STARING at you wondering what you are doing wrong - why you can't calm your own baby down. We went to doctor after doctor after doctor and nobody could figure anything out. Some had the audacity to tell me it was in my head (pretty much). I was a new mom with unattainable expectations for a baby. (what???)
Finally we were introduced to the world of Sensory integration and for the first time - something was at least starting to help. We began taking her to OT, PT and SLT. We would try and build sensory items at home (some worked, some didn't). It certainly didn't fix the problem but it helped enough that it made a difference. Aubree started wearing weighted vests, we had noise cancellation headphones and soft textiles for her to touch. (She would scream at the people on the intercom in the stores because it was too loud).
Life was still difficult with her anxiety from all the hospital/ER/Urgent care visits. We had to see Cardiology, Endocrine and Genetics every 6 months and they would be all day long visits. (Aubree did not cooperative very well). She had mastered the "noodle" well - you know the kid screaming and completely going limp so it's almost impossible to carry them??? Yeah - that one. Eventually she ended up with 3 sets of tubes, tonsils and adenoids removed because they were closing off her airway. MRI's, CT's, Ultrasounds, EKG's...the list is exhaustive. She broke her collar bones 3 times...one time by walking....literally....she tripped on her own two feet on carpet. She had kidney tests, heart caths...it was endless.
It was excruciating to watch....and listen too.
Soon she had a new sister...which thank the Lord because MyKee has been an absolute angel to Aubree and is very protective of her. They have become really close and MyKee helps her through all of the hard stuff. They are less than a year apart and Aubree absolutely adores her. When they were younger the only way Aubree would let anybody in the hospitals touch her is that they would have to do everything to MyKee first. We would have to put MyKee in the bed next to her and do MyKee's blood pressure first, then she would tell Aubree is was ok - then Aubree would let the nurse do it to her...and on and on....even as young as two years old. MyKee was so calm - she would just tell Aubree - "See?...it's ok Aubree...let them do it". MyKee would always have to stay with Aubree. Even now - Aubree calls MyKee daily - (I wonder now if its just to get her out of class!!) 😊 and MyKee gives her encouragement for the day.
Aubree has been on so many medications - daily shots of growth hormones - and she finally reached 5 feet...which is amazing for a Turner Girl!! Yay!!! But she takes them like a trooper and doesn't complain...well, maybe once in awhile.
These surgeries / tests / hospital stays have always been a part of Aubree's life and always will be. But she takes it in stride and lives life to the fullest. She doesn't look at what procedure is next or when the next surgery is - she just puts that out of her mind until she is actually faced with it.
Nevertheless...she is my lovely little Turner girl!!! And I adore her...she is just an angel....truly sent from God.