The road less traveled

So much to say, so little time. I will do my best to get this all out before Kennedy wakes from her nap.

Kennedy has been doing better. Much less coughing with the breathing treatments and we are even starting to wean her down on the frequency. She has regressed a little on her eating and was down by about two ounces a day as of last week, but today she has done well so hopefully she will be back up to her previous level of formula intake. Her weight gain has slowed a bit, but I think that has a lot to do with eating less and all the throwing up she did when we attempted to take her off the erythromycin. She has been talking up a storm the last couple days and has been working hard at strengthening her neck and tummy muscles. She is only taking three naps a day and they seem to be getting shorter and shorter. Overall she is doing really well.

Saturday my parents offered to watch Kennedy for a few hours so Shawn and I could have a break and some time together just the two of us. We thought it would be a great opportunity to use the balance on a movie gift card we received during Kennedy’s NICU stay. We decided on an early dinner at Wing Stop. It was Shawn’s first time and my second. I had been craving Wing Stop since Jenn introduced me to a few weeks before. Well we walk up to the door and sitting inside is another NICU mom. She doesn’t live in the desert so she was the last person we expected to run into. She had twins exactly one month before Kennedy was born. One of them passed early on, but the surviving twin had quite a go of it in the hospital. Any time we would see her in the NICU we would ask about the others child and whatever the latest problem with Kennedy was her daughter had already been through it. The last time we saw her was a week or so before Kennedy was released. They were finally releasing her daughter after 5 months in the NICU and she was running around getting all the things done that you have to do before they will hand over your kid. Of course she asked how we were and how Kennedy was doing. I gave her the reader’s digest version of what was going on with Kennedy and asked about her girl. It was awful news. Her daughter had passed away on Tuesday form respiratory failure. I didn’t ask any more questions. We just offered our condolences and sat down to wait for our dinner. I tried my best to keep it together but I couldn’t. I sat in Wing Stop and cried. Five months of diving back and forth to the NICU waiting to finally get to take your baby home all the while thinking you should be taking two babies home and two months after bringing her home to have her pass away. It hurt so much because we knew her struggle, but it hurt even more to know that at any moment things could turn and we could be in the same situation. I keep a journal for Kennedy. I started it the day I found out I was pregnant and wrote about all kinds of trivial things. Foods that made me sick, every doctor appointment that we had, the ER scare at 17 weeks, its all in there. Then when she was born the journal became even more important to me. I wrote about her weight gains, and the day to day stuff that went on in the NICU. Every once in a while I go back and read the old entries. That first entry with all the excitement and hope and joy that came with watching those two little pink lines show up is killer. It is so hard to look back. Of course it is what every person should feel when they find out they are pregnant, but some how I just look back and think how naïve I was. Part of me wishes I could go back to that. When Kennedy came home without oxygen we were so happy. It was easy to push the NICU to the back of our minds and just concentrate on our baby girl. You want to forget the hard times. Shawn and I talked about how you almost forget you have a sick kid. To look at Kennedy without her cannula you would think she is a normal healthy baby. It was kind of a reality check when she had to go back on oxygen. We almost had to remind ourselves that we have a sick baby. I suppose if I went around thinking about her health problems all the time it would drive me crazy. Its like this- when you leave the NICU you think you’re done. You fought hard and you made it through and you won, but what you don’t realize is that the NICU is just one battle and that the whole war is still ahead of you. The path Shawn and I travel is a difficult one. It’s certainly not one that most people would choose, but it is the path given to us and I feel we will be a closer family because of it.
So dear readers, before I go I would like to ask you a favor. When you get home today and find you kid has colored all over the walls, or your teenager is being a teenager before you get mad or ask your self why, take a minute to hug them and tell them how much they mean to you and if you don’t have a kid then tell you partner or your parents or even your cat because you never know what life is going to hand you next.