Saturday, October 1, 2011


I apologize for the lack of posting lately. The last several days have been such an emotional roller coaster that I have not had the energy to update. Things always change so quickly in the NICU. This will be a short update but I just wanted to let those of you following Ava's journey to know where we are at right now.

We have *almost* brought Ava home 3 times now. Each time, something has happened to delay that and each time I have been completely crushed and heartbroken. The cumulation of all of that heartbreak has put me in a pretty dark place. I am struggling to cope with the let down of not having my baby home. The reality is that she has not been in the NICU that long. That is, if you compare her to her brother. But the other reality is that between the two of them, I have spent 216 days in the NICU. That is approximately 60% of one year. As you can probably imagine, I am pretty over this by now. I am over calling the NICU several times a day to ask someone ELSE how my baby is doing. Over driving 25 minutes one way and paying for parking just to see my own daugther. Over getting my hopes up just to be let down. Over the constant anxiety and fear of something going wrong that will delay her even more. Over staring at monitors with numbers telling me if my baby is breathing well enough. Over being away from Travis at bedtime and feeling torn between him and Ava. Over never seeing my husband or having ANY time with him at all because as soon as he gets home I leave for the hospital. I am just over it all. I am tired and worn down, and not in the physical sense of the words. I am emotionally exhausted.

I may never understand why having children is so easy for some people and for others, it is such a challenge. For some, not even possible. I feel blessed that I DO have my babies. But a little bit frustrated with God right now for putting them and me through this journey. As much as I want to give up sometimes, especially right now, I know that I can't. And maybe thats part of the problem. Everyone says how strong I am, but really, what other choice do I have? Is crying all day for days on end really strong? This IS my life. This is the hand I was dealt. Right now, I am not strong, and I am ok with that. I am fervently praying to God that He can renew my strength and help me get through these days that follow, how ever many there will be.

Enough about me. I know this blog is about Ava and I am sorry for getting a little off track. In general, she is doing well. She is growing and eating and being a big girl. One of the reasons she did not come home was because she failed her carseat test. The carseat test entails sitting in the carseat for an hour with no issues. With only 10 minutes remaining on the test, she became apenic and dropped her heartrate and oxygen saturations. She was supposed to re-do the test yesterday but she ended up having two apenic episodes that were unrelated to feeding so the doctor has decided that she needs a few more days. She has to go 5 days free of any episodes before she can come home. So the soonest we are looking at now is Wednesday, granted she has no more episodes and passes her carseat test between now and then. She weighs 4lbs 13oz and is eating like a champ! When she does come home she will be on an apnea/brady monitor since she has a tendency to drop her heartrate during feeds.


Robin W. said...

Oh Chelsea! My heart hurts for you, for all the pain, the suffering and the hard times you have gone through! I hope the end is near and that you get to take your little Angel Ava home soon!! Those pictures are darling of her. I hope the next 5 days go smooth and the car seat test goes down with no more issues. ((hugs))

Robin (oct ddc)

Michelle said...

She is absolutely precious! I understand your comments about being strong so well. Everyone always told me how strong I was when my 24 week twins were in the NICU. I wanted to scream, "I don't want to be strong; I just want my babies home!" I'm praying that Ava's episodes will end soon and you will have her home in no time.

marcie said...

Ava is beautiful! She WILL be home soon. You are so close. We were told three times that our 24 weeker was coming home and she didn't. It was soooooooo hard. The 4th time she came home and it was amazing. My prayers are with you that Ava will be home soon.

Jim's Mom said...

Oh Chelsea, I am so sorry the roller coaster is continuing. People told me the same thing about how strong they thought I was when Jim was in the NICU. What people didn't know was that it was completely an act, because you're right, what choice do you have but to just get through it? Ava WILL come home, and this nightmare WILL end. It's just a question of when. And when she does, your heart will start to heal.