Saturday, October 31, 2015

Tales from the NICU

Just a disclaimer here. This is not to say a NICU is not a valuable place, that the nurses don't work hard or any such thing. It is just my own view of things. If you don't like it, I really frankly don't care. :)

So this is our fourth time with a child in the NICU. Never a fun experience. This is also our second time with a child in this particular NICU. So not a fun time. You get used to the constant beeping of alarms because they must be ignored. You get used to the sound of babies crying because there are not enough hands around to hold them when they are upset so it seems they only get picked up if something is wrong. You get used to never being told ANYTHING because it seems communication is just not a priority. Doctors who are rarely around, parents kicked out when they are around during rounds. This seems to be a policy exclusive to this NICU. When Robert was in the NICU, they made a policy of getting the parent of the child and bringing them into the conversation during rounds. Trust me, this was very reassuring. But this place, well, they drive me bonkers.

What I have learned over the past few days (and the previous week long stay) is that this place runs entirely on the concept of standard protocols. No real though given to what is best for an individual child or family. This is not at all a good thing. No child may be treated for jaundice unless the bilirubin levels are dangerously high. This means we are dealing with our second child with numbers that are borderline dangerous, causing excessive sleepiness which leads to feeding issues but they refuse to treat it. Two times in a row. This decision led to a longer than needed stay for Seamus and I believe is doing the same thing with Charlotte. They have a standard rule for when a child may try a bottle the first time. When they may move out of on incubator. They also refuse to allow a child to leave with a feeding tube no matter what. This is our big one right now. Charlotte's cleft is fairly severe. I'm not sure she'll be ok without a tube until after the first surgery. Can we see the problem here?  And oh my goodness. I am so tired of being told simply blah, blah, the doctor hasn't said when I ask a freaking question. Call the guy and get an answer or you will quickly have a very angry mother on your hands.

Yes, we are trying to get her transferred to a local hospital. One that is better at working with parents and has a better support network in place for helping families. One that is  20 minute drive rather than the current hour or more drive. But it is all up to insurance approval. The doctors are ok with moving her but the insurance can easily deny it because insurance companies rarely care about what is easiest on families. And TRICARE especially is notorious about denying anything and everything it can. Already fighting with them on denial of genetic screen done after the cleft was discovered. So here we sit, playing the waiting game. The local hospital will send kids home on feeding tubes if needed. It's where she'll have her plastic surgeries. It's where I had planned to deliver if she was truly early like her sibs but I thought 37 weeks was safe enough to be out of the woods. Big mistake on my part. We are hoping to get in contact with her plastic surgeon on Monday and see if he can help us facilitate a transfer.

So please pray with us that the insurance company will see reason and approve a transfer. Otherwise it will be a very long road ahead of us.

1 comment:

Ashley @ said...

Lots of prayers. So sorry you guys are dealing with drama. I was so hoping for as calm of an experience as possible for you all! But congratulations on your sweet baby. Can't wait to meet her. :)