Dear Henry, Your oxygen trial results

Dear Henry, Your oxygen trial results

I wrote this once before and deleted it. Then I rewrote it, because sometimes I just have a bad day, and it's ok to share.

For the past 48 hours (give or take) Henry has been on a room air trial, which means they took him off the tiny bit of oxygen that he has been on to see if he can go home without it.

He did great.

But then, around midnight last night Henry had a 5 second "spell". He stopped breathing, had a dip in heart rate and his blood oxygen content dipped into the 60's. 5 seconds. He recovered himself with no intervention from a nurse or doctor. This trial was a pass or fail, a 1 chance to make it. We failed.

Henry will go home on oxygen. 

I had decided that I was ok either way. Until the Dr. actually said "this means he needs to go home on oxygen". I just lost it... I listened to the doctor talk and didn't make eye contact because I felt the river brewing. I calmly walked out of the NICU and the tears started to gently roll. I passed the waiting room and just let it roar. I sat outside for 45 minutes and just cried. Thats 44 minutes and 55 seconds longer then Henry held his breathe.. 

I haven't cried in weeks. Henry is amazing, he has beaten all the odds. I am so happy and so proud of him. No heart problems, no hearing problems, no eye problems, no brain problems. He is perfect! So you would think that this little bit of oxygen wouldn't be a thought for me. 

So why did it feel like a heartache?

Because I don't think he needs it. But I'm not a doctor so fine. Because I pictured myself walking out of the NICU without being attached to anything. Because I want to take him on walks with out a backpack for oxygen. Because I don't want him to look at pictures of his first Thanksgiving and Christmas and ask about the cannula. Because I want to walk around my house without being attached to a wall. Because I want him to be free. Because I want to be free. Because his whole life has been surrounded by medical equipment and I don't want that for him at home. Because I don't want people to look at him and wonder whats wrong. Because I'm vain, I guess. 

My days in the NICU are numbered and I wanted to end on a high, but this felt like a low. Tara can always talk sense in to me but she is on vacation. Mary can always calm me down and remind me how special we all are but she is off until Sunday. My favorite Doctor is the one that broke my heart, but I know that he just wants Henry to succeed. 

 

This is going to be such a small blip in Henry's life, I know that. He isn't sick. He is, in every sense a miracle baby. I just thought it would have been nice to be all the way free. I will spend the next day learning how to hook up oxygen, how to pack it, how to travel with it, how to give CPR if something goes wrong. I don't want to think about what can go wrong, he is fine. Another small hurdle for this little one, but won't even care and he will do great, of course.

It's my job to worry now. I'm the mom.

Nikki

 

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