Operation Get Bennett Home

Operation Get Bennett Home was not a success :-(  I sat at the NICU from 8:30am until 6:30pm yesterday and 9am until 4pm today strictly working on feeding Bennett.  On Wednesday I had a mental breakdown while at home with Blake.  Partly because I can't be with Bennett as much as I would like or at the drop of a hat when I want.  I was frustrated that he had been getting new nurses every shift and when I would ask them questions about his eating they didn't know the answer because they don't know Bennett.  I didn't feel it was fair to him to have to deal with a new nurse's learning curve every 12 hours.  I didn't have a problem with a particular nurse, I just wanted him to have nurses that knew him.  Every time I turned around someone was feeding him with a different nipple and holding him in different ways.  How is he supposed to learn what to do without consistency?  I was also upset that they still had him on the same schedule that they have had him on since they day he was born.  It didn't really hit me until a nurse told me she had to wake Bennett up to feed him after he had only been asleep for 45 minutes because he had been awake.  By 3 months old it is only natural that he is awake for a few hours at a time and how can they expect him to be successful at eating when he had only slept for 45 minutes?  Blake wouldn't be successful either if I did that to him!  Thankfully Bennett had a great nurse on Wednesday who could handle me sobbing to her on the other end of the phone and got right on the ball in getting some changes made.  In less than 30 minutes Dr. Simpson was calling me and we came up with a plan. 

They took out Bennett's feeding tube and were going to let him go 4 hours without waking him up to eat, but if he wanted to eat sooner he could.  This made me feel much better, but I needed to be there to see for myself how he did.  The first night he did great and ate more than he had eaten in 1 feed before...97 ml (a little over 3 ounces)...the next morning when I got there it was a different story.  Bennett would wake up to eat every 3-4 hours and would power through the first half of his bottle in about 5 minutes without a problem then he would start to fight eating.  I would give him a break, sometimes as long as 15 minutes, and try again.  As soon as he realized it was a bottle with milk and not his pacifier he would start throwing a fit, crying, arching his back and spitting.  I think the most frustrating thing is he would take his pacifier, but not his bottle.  He prefers the pacifier because it doesn't take as much effort or coordination as the bottle.  All in all yesterday he barely met the minimum amount of calories he needs to grow, the amount of fluid he needs to stay hydrated and he lost 1 ounce.  When I went back today it was the same story all over again.

All tuckered out after trying to eat by himself all day

I am so thankful that Bennett had one of our favorite nurses, Gwen.  She knows how to talk to me so that I listen, I feel like we are a team and it isn't me against them, she knows when to help and when to step back, and most importantly she is a great advocate for Bennett...she is able to see who Bennett is instead of just another baby...I think she loves him as much as I do.  I always feel better when she is there because I know Bennett will get the best care possible!

Before I left today I talked with Dr. Grubbs...the first doctor he had when he was born.  We decided to put the NG tube back in, still let Bennett eat when he wants every 3-4 hours for 30 minutes at a time and to feed him what he doesn't finish through his NG tube.  We are hoping in the next few weeks that he grows enough to build up his stamina so he can eat all of his bottles on his own.  If he is unable to finish his feeds at that point we are going to have to look at sending him home with a G Button (a plastic button they put in his stomach so I can feed him if he doesn't finish his bottle) or a NG tube.  I'm really hoping to avoid a feeding tube all together!

I know it sounds silly, but it makes me sad to go through their clothing drawer and see matching or coordinating outfits and know that I can't see them in them together, and that he will probably out grow them before he comes home.  I'm also worried he won't fit in the coming home outfit I had made for him.  Basically I feel like I am missing out on all the normal things that someone gets to do with their newborn and I feel pulled in so many different directions that I really have to stop and focus to make sure I enjoy the time I get to spend with them both.  It's almost like I thought time would stop and they wouldn't change much until they were home together, but that doesn't look like it is going to be the case.

I think the thing I have to remember is Blake and Bennett are not the same...they never will be...they probably would have never been even if they were both born without complications.  Since the day Bennett was born he has called the shots and we have never been able to 'make' him do something he wasn't ready for.  We always joke that Bennett says "Your not the boss of me, I'm the boss of me" and that holds true for him when it comes to eating as well.  He will do it when he is ready and when we least expect it...I just have to be patient and that is really hard after 3 months.

When I came back from lunch today I found Larry, aka Santa Clause, rocking Bennett.  It's nice to know that there are volunteers there to love on him when I'm not :-)