Latest update on Lil’ JaMonkey. She seemed to be doing well. In fact they told us yesterday that we will probably get to take her home in AT LEAST a week. We WERE so excited.
In order for her to be able to come home there are a few things that Preemies have to be able to do before they will release them. They have to be able to sustain their own body temperatures without the heated bed. Breathe completely on their own without any help. Take all their feedings by bottle or breast. And what the NICU refers to as “Outgrowing their As and Bs” (Apnea and bradycardia).
So far she is off any breathing machines or oxygen. But occasionally when we hold her her stats have dropped and she turned blue. Me and the nurses then had to stimulate her to take a deep enough breathe.
Her feedings are currently every other feeding. So every other is either a bottle feeding and the others through her NG Tube, which I’m happy that that was the only tube on her for the last week or two. She nurses from me normally for only a few minutes. She is so tiny and if you’ve ever met me in person you know my breasts aren’t small so it’s very hard to nurse such a tiny baby. A nipple guard helps but I’m fine with her bottle feeding because she is still getting breast milk.
She hasn’t had any trouble since they started putting her in clothes. When she gets a little chilly they throw the hat on her and she gets nice and toasty.
Now the As and Bs are an entirely different story. Lil” JaMonkey is currently on 2 different medications. The cardiologist told me (along with reading lots of support group posts) that most infants only require 1 medication to help regulate the heart for the SVT attacks. He then told me that she was being especially difficult. The medications that she are on are causing her heart rate to be low but now they are dropping too much and too many times.
I mentioned that they have to find a happy balance in her meds so that it controls the SVT but also doesn’t cause such bad Bradycardia’s. It always seems to be looking good until the last minute!
We had an SVT attack (heart rate above 250) on Monday that was broken by a Vagal Maneuver called the Diving Reflex (Ice on the face). Thursday she had another right after I left that they had to do another maneuver called Knees to Chest. Today she had two while I was holding her but she was able to break them on her own. But among all those there are lots of Bardy’s (drops in heart beat). Bardy’s tend to also cause oxygen and breathing to be affected also.
Needless to say that is causing a longer stay. They have also told us that she will be going home on a heart monitor to will alarm when she goes too high or too low.
Today however after we left today the doctor called to let us know that they gave her some kind of vitamins and iron and it didn’t agree with her at all and she spit up so bad that they had to aspirate and mask her to help her breathe. The doctor called to let me know that she was alright and the nurse was in there when it occurred so they were able to help her fast. (Heaven forbid what would have happened if she wasn’t in there.) But this showed her that Lil’ JaMonkey is not ready or close to going home. That incident was going to push it out at least another week.
So for those of you that have kept us in your thoughts and prayers please don’t give up on us yet. We need your strength. Thank you for keeping me positive when it’s REALLY hard to keep my head up.