Doctors, nurses, NICU staff as well as other NICU parents all refer to the NICU journey as a rollercoaster. Filled with ups and downs, good days and bad days. Some days those good days are really good and some days those bad days are really bad, and then of course there are all those days in between. Like being on a rollercoaster, going up is always fun an exciting for most people, but for me I hate it because I always know there is going to be a drop somewhere that may be scary. So even when the babies have good days, I hold my breath and pray that the trip down isn't very long or steep.
Case in point...after what I would call a pretty bumpy week we get to yesterday and things are starting to turn upward again. After Blake's on/off relationship with photo therapy for his high bilirubin count/jaundice his is once again back OFF of photo therapy. Addison's still on the Oscallitor but the doctor believes today she maybe able to come off and go back on to the regular vent. And both babies are back to getting their feedings. Great news right? Right. But here's the "hiccup" the doctor wants to try steroids to help mature their lungs and get them off on the ventilators all together. The catch is that those steroids do not come without their own set of risks, risks that could or could not be caused the steroids in themselves.
All of the risk factors are quite possible with preemies on their own who've never gotten steroids. So the choice is, give them a medicine that could mature their lungs and get them over this "plateau" of sorts and potentially worsen their over all condition at the very least temporarily but possibly for life. OR do nothing, keep praying that their lungs will mature and heal and continue to wait which could also cause it's own issues as far as brain development and overall lung function. This marks the first decision that we've had to make as parents since they've entered the world. But there is some hope, they don't want to start steroid treatment for a week to two weeks and a different Neonatologist will be caring for the twins starting next week. As our current Neo mentions it is possible that he may have a different opinion or idea that could result in the same outcome ( = bye bye ventilators) so he recommended that we discuss it further with this Neo before making our decision.
So until its actually decision time I am going to keep right on praying that God will guide us to the right choice or even make the choice for us. We are asking that are friends and family do the same thing and pray for us. This is one topic that we do not want to discuss in any greater detail with anyone, and we don't want any outside advice on what to do, because at the end of the day we have to be able to live with the decision and outcome for the rest of our lives.
And now I leave you will pictures of Little Rascal (dubbed this by his nurses)...And of course Princess Addison herself (please forgive her she was a little "dopey" thanks to her Fentanyl drip).
And one more for good measure, this your laugh for the day...This would be Jake aka Baby Daddy...passed out while I was in the the breast feeding room at the hospital. Too bad I don't have a sound bite to go with it because I am pretty sure I heard snoring.