Friday, December 11, 2009

The CDH roller coaster

The day began with a 5:30 am phone call from the NICU telling us that Briana went downhill a little bit. They said it wasn't serious enough to come in, but sleep at that point was out. So we got ready and we were in the NICU by 6:30.
Like they told us, a dip after coming off ECMO was very likely, but when we left last night around 9:00, she was doing great. Her numbers were great, and she was very tolerable of the poking and prodding from the nurses, so we were feeling very good and thought we may have avoided the dip. Well, Briana just waited a little bit longer to surprise everyone. Apparently, her heart rate was elevated, and it seemed she wasn't getting the oxygen she needed. They put her back on the oscillator, which is an advanced form of the respirator. It delivers oxygen more gently, and does more of the breathing work than the other respirator. They also gave her some medicine to control her heart rate, some more sedative so she relaxed more, and also put her on nitric oxide, which helps oxygen to be delivered to her cells. She is stable now, which I know is a vague term, but it is good. They are just keeping her sedated, and doing more of the work for her for awhile, until she gets over this bump. She is definitely more pale again, but that will get better.
The diaphragmatic hernia experience is definitely a roller coaster. It harshly reminds us that nothing can be anticipated, and remaining in the present is the only way to remain, as hard as that is. We have to wait patiently, hope for the best, quietly celebrate the good, and keep our strength through the bad. Briana has already proven her strength, so we are staying positive and remaining patient.
Please keep praying for our little girl. Thank you.
Jim and Angela


  1. Even though you guys are at not very far on the ride, you are already so wise! I hate the little dips .... even one bad blood gas is so upsetting to us! Thank goodness for all the treatment options they have now! I am glad Briana is stabile! Don't worry, her body will figure out how to do the work more and more on her own! Sometimes she just needs a little rest! I think she is doing awesome!
    Lots of prayers for forward steps!!!!
    Mom to Dakota 12-25-2008

  2. My prayers are still with you and remember, you don't even have to take it one day at a time or one hour, just one minute at a time. We love you guys!

  3. Kayla was on the oscillator and nitric for several days! It took her a while to get off the nitric- but she did- it was a slow and steady ween!

    Hang in there- you guys seem to be very strong!! :) Stay positive and our prayers are with you!