The first three days

Anyone that has had a baby in the NICU can tell you, the first three days are like nothing you have ever been through before.  It is somewhat surreal, very scary, confusing, and can sometimes be infuriating.

Surreal because you just had this baby and you probably haven't even gotten to hold them yet.  Then, when you finally get to the unit where they are, they are hooked up to fifty different tubes and IVs, and you are afraid to touch them!  So there you are, looking at your brand new baby, and they are a million miles away from you at the moment.  Surreal is a kind way of saying what this is like.

Scary because chances are, if you have ended up here, something has gone very wrong, and your child may be in a really fragile state.  This is usually when your family asks you, "did you hold them yet?" and you are thinking to yourself that you will probably rip something out by accident and then they would be in real trouble.  Sometimes your family will then say, "well don't you think you better ask to hold them?", without understanding that you are scared to death and the baby looks super small and extremely breakable.  I didn't hold Dane until the third day I was there, and then it was okay.  You sometimes have to push yourself through the fear and then it is easier afterwards.

Confusing comes in when you finally meet with the doctors.  If you have a team you are working with, sometimes you hear a few different plans about the same issue.  For example, with Dane's nasal blockage, one doctor told us that the ENT would possibly do a procedure there in the NICU in the next couple of days, another doctor said that they would probably transfer him to Brenner's for a transpalatal procedure (where they remove the hard palate and repair the passage and reattach the hard palate back), also in the next few days, and then finally that they were going to drill holes in the bone and that they may do it the same day they told us about it.  In reality, he has to wait until he is 7.5 pounds or is 39 weeks old before they either put in a trach tube or do a repair surgery.  They still haven't decided what they are going to do.  Patience is a necessary virtue here.  Quite necessary. 

Infuriating because it seems like part of the doctors' job is to give you the worst case scenario for every single probability, whether it is really likely or not.  Of course this breeds worry in an already tense and emotional time, just in case you had any chance of sleeping well at night.  We had to meet with a geneticist to see if Dane has a sydrome of some type because when there is more than one thing wrong, (brain cyst, choanal atresia) they then look for syndromes.  The doctors also told us that his ears were lower than usual and his chin was farther back.  They decided to do a chromosome test and then a test for CHARGE syndrome, and we would find out the results in two weeks.  The ears and the chin have since normalized as he grew, but we are still waiting for the results for the CHARGE test.  However, he did have an MRI on day three and they discovered his brain cyst was gone.  That was wonderful, miraculous news, because my OB later told me he could have been blind, had seizures, or some other difficulty because it was a large cyst.

One of the blessings of the situation was having almost four days in the hospital while I was recovering from my c-section.  I got up and moved around as soon as I was catheter-free, and it really helped with being able to walk around and get up and down by myself quickly.  After the first day, I was a frequent flier in the hallways, walking from my hospital room over to the NICU, at first pushing a wheelchair in case I needed to sit down on the way, and then hustling like a powerwalker on a mission.  I was planning on nursing, but since that is impossible with a ventilator tube, I chose to pump instead, so every two hours I had a good reason to get down there and visit.  NICU nurses are a special breed of person, and they are invaluable to every parent dealing with this situation.  More than once it would be really late at night (or early in the morning), and I wouldn't be able to rest or sleep, so I would go down and ask Dane's nurse to talk about things.  I had a really awesome nurse named Mary Rose, and she was very calming and nurturing, and helped me through the darkest period.  The last day I was there, I met Martha Harrelson, who I had heard about through my friend Arika that had a NICU experience of her own, and she was just so comforting and helpful that I can see why my friend loved her so much.  Unfortunately the same day we met Martha, Dane was transferred to Brenner's NICU so we didn't get to take advantage of her knowledge, experience, and sheer force of personality. 

Yet another blessing during these days was the amount of texts, calls, emails, flowers/cards/candy, and general outpouring of love from our friends, neighbors, and family.  It helps when it is 8:00 PM and all of your visitors have gone home and you are all by yourself in your hospital room, and you have something to take your mind off of things.  That, and my mommy was here and that sometimes is the biggest help of all.