My Story

Emmalynn is our little princess. This is our journal as we search for answers.



Emmalynn Renee is our little meant to be princess.  She was conceived without trying, heck without knowing it was possible and yet here she is! She was born Jan 17th, 2010 weighing 8 pounds even and just beautiful! At nine hours of age she was admitted to the NICU for increased respiratory/heart rate and increased white blood cell count.  After 48 hours she was released because her cultures did not grow anything.  I kept saying to nurses and doctors that she just wasn't breathing right yet no one seemed to listen.  They kept telling me I was just being anxious, that all babies make noise but I just knew something was wrong. After 3 weeks of this I took her to an emergency visit with the on call Pediatrician and she stopped breathing at the appointment. The Pediatrician (who at the time was not our normal one) immediatly admitted her. She was in the hospital for 10 days and had an EEG (brain test-Emma passed with flying colors and continues to be developmentally ahead), EKG (heart test-she had 3 borderline issues but has now been cleared by her cardiologist) and lots of blood work done and still no answers. We left the hospital with the diagnosis of exagerrated periodic breathing (she stops for 10 seconds then takes 4-6 breathes then stops again-this happens ALL night). We hoped she would outgrow it however she is 5 months old now and just getting worse. She "honks" when she breathes, chokes severely while eating, has a really loud stridor (breathing noise) and has a milk protein allergy.  She is unable to lay on her back for any period of time as she has positional desaturations (her oxygen falls into the 80% range).  She had a sleep study done and had 242 events recorded in one night! She showed both obstructive and central apnea episodes. The doctor said she has the most abnormal study he has ever seen in a child with a healthy brain. Surgery right now is set up on the 28th of June with ENT performing a bronchoscopy with a possible easy fix (laser) to a tough fix (tracheostomy) as well as GI will be there to do biopsies of her esophagus and stomach to test for various things as well as expand on her allergy issues. She seems to be allergic both from an internal response and external response to various things. She has a rash almost all the time as well as bad stomach pain/diapers/gas.

We could use all the prayers we can get so send them our way.  Please note that the donate links on the right DO NOT go to Emma.

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Melissa Rupe posted a new journal entry.

Parkers appointment went ok, he had several swollen, hard lymph nodes in his neck between five and seven mm big. Most are concentrated on his right side, the side he says ... Read more

Sandy Daron signed Emmalynn's Guestbook.

The waiting must be soo difficult. I will pray the antibiotics WORK and that Parker will begin to feel better!!! Check it out…we NOW have a new link on our homepage for ... Read more

Melissa Rupe posted a new journal entry.

Parkers appointment went ok, he had several swollen, hard lymph nodes in his neck between five and seven mm big. Most are concentrated on his right side, the side he says ... Read more

Melissa Rupe posted a new journal entry.

(This site was created for Emmalynn, Parker is her older brother and I'm borrowing this site at the moment to update friends and family on him)...Today is Parkers ... Read more

Sandy Daron signed Emmalynn's Guestbook.

I am soo sorry!! I am sure that is so worrisome!! Please post when the surgery will be so we can be sure to pray. "Have you heard about Cole's Foundation? We have a ... Read more

Lisa Fainter signed Emmalynn's Guestbook.

Continuing to pray for little Parker and your family!!!!! God Bless & Comfort you all. Hugs~~Lisa Read more

Melissa Rupe posted a new journal entry.

We found out Friday that Parker has a low WBC, white blood cell, count with an abnormal distribution of cells. He has more neutraphils then other cells. With this info and ... Read more

Dee Dee P signed Emmalynn's Guestbook.

Thinking of you and your family! I will say a prayer tonight and tomorrow when I visit the chapel at our hospital. Take care! Read more

Sandy Daron signed Emmalynn's Guestbook.

I pray that you find out SOON what is causing Parker to be sick. It must be soo concerning. We have added a new link (It is right about the prayer requests) on the site ... Read more

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