TrachKids.org

TrachKid Profile

MaryJane was born on Feb 21, 2009 - a week late.  She never turned during the last few months and was delivered by emergency c-section.  MaryJane was not breathing very well and it was decided that evening that she would transferred an hour a way to Sutter Memorial in Roseville, CA since our hospital didn't have the equipment to help her.  It was found that she had a soft cleft palate, a collaspable airway due to her position in the womb, a recessed chin and reflux.
MaryJane was in the Sutter NICU for 54 days and was given a trach and feeding tube before we could take her home at about 2 months of age.  Her daddy and I have waited so long for our little girl - our only child thus far - and we were very scared with what was to come and what we had to go through by ourselves at home.  Luckily I was able to get nursing care about 20 hours a day established before going back to work full time.  I'm so blessed to have such a happy baby that has such a strong will to survive that it makes the trach and feeding tube seem almost normal.  She's such a beautiful little girl.
Her cleft palate was repaired in January 2010 and she had such a fast recovery and we are now working on getting more oral baby foods down.  I'm very hopeful that her trach and feeding tube will be out this year sometime - I want to be able to do normal things with my daughter, like take her to the store, over to a relative or friend's house, the park, and so on.  With her trach I'm hesitant because I do not want to take the chance of her getting sick.
She is walking everywhere now and laughing and talking w/her passy valve - which is so awesome to hear your little one's voice!  Her first word is mama and that just melts my heart each time - along with her smile!
MaryJane's first Sleep Study results were actually abnormal on June 4th.  MJ had shallow breathing throughout the night even though her sat levels were high.  The Dr feels that she's still not yet ready to be decannulated, so another sleep study will be scheduled in October/November this year and hopefully we'll get a nice Xmas present!
UPDATE:  2nd Sleep Study was on November 12th, 2010 and she has passed it!  No more sleep studies!  MaryJane now has a pre-bronch appt on Feb 7th to get us (and her) prepared for what's to come in March as they perform the Bronchoscopy and determine whether MaryJane is now ready for decannulation.  As for her tube feedings, she is still mostly dependent on them, but we are making progress by reducing her night feedings slowly down to none at all.  She is finally swallowing a little more with each passing day so I'm very proud of her progress and I hope that sometime this year she'll be out of the woods on everything!

• Gender: Female
• Demographic Region: North America
• Siblings: None
• Medical Conditions: Laryngomalacia, Reflux, G-Tube, Pierre Robin Sequence, Cleft Palate

History

Blog

View recent blog entries

Member for

1 year 51 weeks

Location

Country

United States

State/Province

California