Wednesday, May 20, 2009

NICU Rollercoaster

We are just 18 days into life at the NICU and I'm ready to get off of the NICU rollercoaster ride, I honestly don't even remember signing up so please...a little help? I know I need to be and am incredibly grateful that the boys are in the best possible hands, and we've met some of the best nurses and doctors who have taken us and our sons under their wings. But in all the years that we dreamed of having our family, it certainly didn't include nor prepare us for this. I go and look at these beautiful, amazing boys in their tiny incubators day in and day out, I ask about them, learn all kinds of medical jargon, ask a million questions of the nurses, doctors and try to be the best advocate I can be but I don't yet feel like a mom. I mean my heart overflows with love for them, dreams for them, a desperate desire to kiss their wounds and make everything better for them...but I feel so helpless. I can't pick them up to comfort them, I can barely touch them without "permission" and even when I talk to them, I am at risk of "overstimulating" or agitating them. I jump at every opportunity to help change their diaper, their bedding, or take their temperature but most of the day I just sit there and watch them behind the Plexiglas, listening to all their alarms sounding when their blood pressure or breathing is not normal, or watch when one more person comes to do blood work, another test, another scan. I'm too scared to even let myself dream of the day we might be able to finally bring them home, it seems like they have to overcome so much.

Even when I first arrive for the day and think they are stable and things are going well, there is not one day that we haven't left before hearing about one of the boys needing one more test, one more possible diagnosis, or another new medicine or treatment. Every day blurs into the next day, and I come home completely spent not having "done" anything. There are a hundred "tasks" to be done, a dozen people who want updates and calls back. Everyone says to call when we need help or wants to know what can they do. I'm so grateful for their love and support and I feel guilty that I don't even have the energy right now to figure it out, or to return those calls.

The doctor says Friday we will learn if either or both of our sons will have to have surgery to close the vessel that is open in their hearts. They are each on their second course of medications to attempt this but surgery is the next option. He reassures me that this is not an overly complicated procedure and recovery for them would only be a couple of days. In my heart, all I can think of is I don't want either of them to have to go through one more procedure no matter how "uncomplicated" it is. Its more anesthesia, more cutting. My head has to remind me that if they are struggling and this will help them, then lets get on with it. (My head is just not working as easily as my heart these days but I'm told that it has a lot to do with being a parent). The doctor says if we can get this vessel closed, either with the medication or the surgery, then they can get on with the treatment that Nicholas needs to help with all of his respiratory issues and both boys can begin feeding. Surprisingly he says that Nicholas has the longer road due to all of his respiratory issues and to be patient, both boys will need to remain in the hospital for at least several months. How do parents do this? I mean I know you don't have a choice or anything, but literally I wonder how do people get through this time, watching their babies struggle with even the very basic of things and being able to do very little about it? It is heart wrenching.

Yikes--- I apologize that you've wandered into Holli's pity party, but to be honest, it does feel better to get some of it out. I know these are the times that I have to remind myself this is not forever, and there will be days where things will actually move forward for them. I know they need their mommy to be near them even the days that I'm not allowed to touch them or hold them, I think and hope that they can still sense that I'm there. And I love just watching them even wriggle and move. Nicholas loves moving his tiny hands and feet everywhere and even bundled up, manages to escape the wrapping. Alex likes moving his hands, touching his face, his head as well and recently discovered how much he enjoys his pacifier. (Its the tiniest pacifier you ever did see and he needs help keeping it in his mouth but he will work at it for over a half hour if you let him). These are the moments I know I need to focus on when I need to re-energize and for anyone else who also finds themselves on the NICU rollercoaster ride, it really is true what everyone says: One day, sometimes one hour or minute at a time. Just breathe.

Oh....and let me never to forget that these are the two amazing reasons that we will do whatever is required of us, always! We are so blessed to have them simply in our lives!!!!!

Alex's close up

Nicholas out of his incubator for a few priceless minutes!


Pam said...

Very cute pics!! :)

Hang in there--it *will* get easier. W/in a couple days after the PDA surgery, you'd see some marked improvements in blood saturation and many fewer alarms.

Just one course of the Indocin caused a bowel perforation for JP (scary!), so we had no choice on the PDA surgery. At the time, it was difficult to even think about him having surgery, but now we're glad he did.

BTW--Our docs let us start holding JP as soon as he was off the blood pressure med. (dopamine).

Anonymous said...

Grandma here. The pictures are beautiful. I can only imagine what you are going through right now. But hang in there. There have been and still are lots of prayers for all of you. I am coming to see you next month. Hope there is some way I will be able to help. We love you very much. Love Grandma