Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

Daisypath Anniversary tickers

Daisypath - Personal pictureDaisypath Anniversary tickers

Lilypie Second Birthday tickers

Lilypie - Personal pictureLilypie Second Birthday tickers

Lilypie Pregnancy tickers

Lilypie Pregnancy tickers

Tuesday, November 30, 2010


19 Weeks Old

Yesterday, a cold windy morning, we went to the cardiologist, Dr. P, at St. Joe's . Whitney endured another echo cardiogram (ultrasound of her heart). The results of increasing the oxygen had helped her, not sure if it's the pulmonary hypertension or high blood pressure because she has both and heart stuff is a little confusing to me. The pressure was (last week) moderate and now it's mild. Maybe one day it will be normal.
Basically, the artery from the her heart to her left lung is small and crooked. They cannot see lung on ultrasounds (which we all know already because before she was born they didn't know how much lung she had, you can only see it on like an MRI which is how they knew that they were both small, one worse than the other).
So the Dr. said he might need more information in the future or next 6 months. Meaning some scary options: MRI, CAT SCAN, or doing something with a catheter and some dye to see how things are working and possibly fix the problem, and for that they would put her to sleep and intubate her. Let me just say now that I am praying that that will not happen. If it were my choice I would never ever let that happen again (or anything requiring hospitalization). Praying for another miracle that her heart will be healed on it's own.
From my understanding this is not life threatening (her heart problems) and that she just needs to grow. She now weighs 11 lbs. 7 oz. You grow girl!
Whitney needs to stay on the 1/2 Liter Flow of oxygen for the rest of this month and we'll go from there. Dr. P. wants to see her end of this month. He's says that if it becomes impossible to keep the nasal cannula on her face (babies pull it off), then he might put her on meds. The tape to keep the nasal cannula in place makes her face all red and sore. They gave me a sample of a better tape that lets the skin breathe but of course it's not a prescription so insurance won't pay and no pharmacy has it. It's called Tender Grip and it costs $50 for 25 pairs! $2 bucks a pair! $1 each! I change it every three days. Crazy! I'm sure every mom has this problem of finding good tape to put on baby's face....
Also this month we have the synagis shot to prevent RSV, pediatrician appt. to get 4m shots, G I appt., Pulmonologist appt. some Physical and Speech therapy, PLUS baby's first Christmas!

1 comment:

  1. Poor Whitney! Her little cheeks. Did you ever use 'duoderm thin' with her? I have a TON I could send you if you need some. It worked really well for Quinn. Email me at schutzkatie@hotmail dot com if you want it!