Last time I gave an update on Alyssa, she had just started on dexamethasone, the steroid to help decrease the inflammation in her lungs. It did help, and very quickly. Within 24 hours, her settings were decreased on the ventilator, to very low pressures, and her RR (respiratory rate) went from 65 to 30. However as the medication was weaned over the week, her rates went back up to 45 and have remained there for another week or so before they finally went down to 40 as of yesturday. The RR is how many breaths per minute the ventilator is giving her. She is taking some breaths on her own, but not enough to be extubated (taken off the ventilator).
I mentioned BPD in a previous blog, which is bronchopulmonary dysplasia - abnormal tissue growth caused from the inflammation and damage to the lungs. BPD usually occurs with premature babies who had respiratory distress syndrome at birth (requiring mechanical ventilation), and are still on a ventilator several weeks later. The crappy thing with BPD is that these babies need the assistance of the ventilator because the inflammation makes it difficult to breath, however this assistance of extra oxygen and pressure to the lungs is also what is preventing the lungs from healing.
Of course everything we've read suggests that severe forms of BPD are rare, but as you all well know if you've been reading this blog, rarity is more common for us then not. And Alyssa has bilateral cystic BPD which is the more severe type. How severe I really don't know. I'm planning to meet with Dr. G this week before his rotation ends to find out his input on the situation. Today was the first day that Keith and I both attended rounds since we found out about Jessica being so sick. It wasn't as bad as I thought it would be, but I think that's because there was a lot of people that I didn't recognize.
BPD can cause mortality and morbidity, however in MOST (80%) cases there is no long term consequences, and although some babies may go home with supplemental oxygen, usually after two years it is no longer needed, and after 7 years the baby has completely normal lungs. The other 20% of premies with BPD may show some developmental delay at 3 years...Alyssa will be the 80% that does well in case you're wondering ;)
So, they are trying to wean her very gradually off the ventilator and let her do as much as possible. They may give her a second course of steroid if she is unable to wean off on her own, but like all medications there is side effects, like a slower growth rate, decreased immune response, therefore more prone to infections...and also some studies have shown an increase in CP when used at higher and longer doses. So wait and see...
Now for some good news, actually great news. Alyssa reached 3lbs yesturday. She is no longer the smallest baby in the back pod. There are two other babies who are in the 1lb range (not twins), so she is the big baby. She had a very busy morning yesturday with tests. She had her 4th cranial U/S to check for bleeds, and yippee!!! her scan was normal. She also had her eyes tested for ROP (retinopathy of prematurity). Premature babies who have extra oxygen and other problems may develop abnormal blood vessels around the retina which can damage this area of the eye and possibly cause it to detach from the wall of the eye. Scary....however....yesturday was a good day, and this test came back fairly normal as well. It's not to say that she won't have problems down the road, her next test is in two weeks. But on the positive side, the first test they only charted "immature" eyes, which I'm ok with.
Ok, I think we're all updated. Alyssa is feeding 12 ml of milk every 3 hours and it increases by 1ml every 12 hours if she tolerates it ok. She has been doing well, and when I call tonight, hopefully she will be up another ml. She poops and pees and loves her cuddles out of the incubator with both Mommy and DAddy (today for the first time without Jessica for Keith). She usually gets close to room air when she does kangaroo care.
Our big goal now is to get off the ventilator with very minimum blips on the way. Keep praying.
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