Mid-Week Update

This has been a fairly good week so far for the boys. Henry is now on a nasal canula that attaches to the wall and gives him a very low flow of oxygen. I can now walk over to Henry any time I please and pick him up and cuddle him. Not having to ask to hold your own baby is such a luxury in the NICU. Because Henry is now on nasal canula he was also able to begin what are called, "non-nutritive feeds." Basically I pump and then Henry gets to "practice" breast feeding. The first time we did it the Lactation Consultant came over to help us get settled and make sure we knew what we were doing.  Well, you would have thought Henry and I had been doing this forever.  He latched right on on the first try and never let go. These feedings are supposed to be non-nutritive because his tummy can't handle a lot of milk right now and he's getting the exact amount he can handle through his feeding tube. Henry does not care that he's only supposed to get a certain amount. That kiddo loves his milk fresh off the tap. I was warned by Dr. Gut-Guru to be very careful during these sessions that Henry doesn't get but a taste of milk. I have to limit the sessions to just 5 minutes because of this. But those are 5 of the most glorious minutes of my day. I'm so impressed with how well Henry has done at this. The nurses and LC were both shocked at how well he did and commented that it usually doesn't happen like that the first time. 

In other Henry news, one of our primary nurses noticed that his fontanelle felt "full" earlier in the week. A full fontanelle can be a sign of a brain bleed or hydrocephalus so we were very concerned. Unfortunately, our primary team has switched again so we have a new doctor and a new NNP, neither of which know my boys or me. I had to push to get Henry a head ultra sound which came back with a radiologist's reading of "slightly larger lateral ventricles." Our new primary doctor wasn't really convinced they looked larger than the last ultrasound from December and said we could just watch it. Like I said, she's new to me and my boys. There was no way in hell I was going to "watch it" over the next couple weeks to see if something got worse. Not after what we have been through with Charlie. I got David on a conference call and the doctor filled him on what she thought and what she saw.  David and I both agreed we wanted neurosurgery to look at the ultrasound and weigh in. Our new doctor noted that this wasn't the normal way to proceed but if it would make us feel better (it will) she would order a neuro consult.  While waiting for the consult, guess who should walk in to check out Charlie's head? If you guessed Dr. Perfect Beard give yourself a pat on the back.  Dr. Perfect Beard or one of his colleagues come by each day to check Charlie's fontanelle. Dr. Perfect Beard said things looked good on Charlie and asked how things were. I may have casually mentioned I had requested that neuro take a look at Henry's ultrasound and head. Dr. Perfect Beard asked who from neurology was looking at it and I said I wasn't sure. He said, "why don't I just pull up the ultrasound and look at it now?". Yes, Dr. Perfect Beard, that sounds like a great plan. He pulled up the ultrasound and checked out Henry's head and said it was all normal growth and the ventricles weren't really any bigger. Oh Dr. Perfect Beard, how I love thee. So, three cheers for no head issues with Henry! 

Charlie continues to do well on his vent and we are just really trying to grow him. He needs to grow in length and weight before we can try to put him to CPAP again. He is slowly getting there. In good Charlie news, the eye doctor said that the injections look to already be working in. My wonderful mom bought Charlie some special NICU clothes that I plan on putting on him today. Stay tuned for pictures. 

A couple days ago I found out that one of the nurses in the unit does not believe in vaccinating and does not have her flu shot. Please read that sentence again and let that sink in.  A NICU nurse who does not have her flu shot. Apparently they can't force her to get a shot so she's supposed to wear a mask when working. She doesn't. I know this because I sit there all day every day and I've never seen her wearing a mask. I am so infuriated on so many levels by this. Why does the administration allow this? Why didn't the charge nurses notice this? Why were my babies put at risk? The doctors and nurses will tell you not to let any family or friends that don't have their flu shot around your babies, so why is a nurse allowed to be? I reported this to the charge nurse and I hope to see a major change in this. Exposing babies to the flu is inexcusable. 

Now for a small update on our new team. Nobody likes change. I especially don't like change when my babies lives are in the hands of said change. The new doctor is very good and I really like her. She just doesn't know our babies yet, so we are still in the learning curve portion of this month's rotation. The new NNP is...more challenging. I don't think she gets that I will be there during rounds every.single.day. I will have questions and I will correct you if you have wrong information about my boys. She only addresses the doctor during rounds so I have to physically stand in front of her to hear what she is saying. It's annoying but I'll break her in sooner or later. Thankfully we still have one of our NNP's from last month. She's back today so I'll be breathing easier that the boy's history isn't soley on me to give during rounds. I think that's about it for updates for now. 

(A)