Last week things were looking so promising. We were getting very excited and looking forward to having the babies home, and naively thought that would be happening sooner rather then later. Things had progressed in leaps and bounds.
Until Saturday night...I was holding Addison and got up to put her back in the isolate. She was on the nasal cannula at the time and from the humidified air that it pumps thru, some condensation had gotten in the tube and flooded into her lungs. Suddenly she Brady-ed and went blue in my arms. (In a sense she had just been drowned by the stupid cannula). It took quite the effort and a lot of time for Addison to get herself together. The Nurse Practitioner immediately put her back on the CPAP and we realized we were > < this close to having our little girl back on the ventilator. I have seen a lot of things during our NICU journey, but by far this was more then I could handle and I suddenly felt at my weakest point.
From there things snowballed downhill quickly. Addison had several more episodes of Bradys throughout the night and into Sunday which required vigorous stimulation and several "baggings" where they had to resuscitate her. Late Sunday night we were being cautioned that we could be looking at NEC (a various serious GI infection), but the only thing to do was sit it out and wait. All of her feedings were stops and antibiotics were begun immediately.
By Monday the doctor said that her condition had improved although she still wasn't 100%. His concern was very serious reflux so in effort to counter act that, they decided to push her feeding tube down further into the beginning of her small intestine and begin "continuous" feeds (meaning she receives 33mls over 5 hours continuously rather then 33mls at once every 3 hours.) He told us today that he noticed she is still refluxing, so medication for it may be in her future. In the meantime her feedings will continue like this for at an absolute minimum of 3 weeks, which is a huge set back and means that it will be the very least that much longer before she can come home.
Blake has been put back on a rotation of CPAP 6 hours a day to help with lung expansion and they are both still having small issues with fluid on the lungs, which is being treated off and on with Lasix.
In the midst of all of this though, there has been a silver lining. Both babies brain bleeds are officially "resolving" (including Blake's who had actually worsened a few weeks ago). And they both passed their eye exams with flying colors. Not to mention Blake is now in an open crib.
As NICU mom, all you can do is take the good with the bad and just keep moving on.