Ameir's Story ~ Living with Trisomy 18: Happy 1 Week Birthday

1 Week Old

July 23, 2012

Today I celebrated 1 week of life with my little man Ameir.

Having a baby in the NICU is hard work, I think harder work than having a baby at home. I spend several hours a day up at the hospital caring for Ameir - they let me change his diapers, take his temperature, suction his airway, and put his eye drops in. I know it does not seem like much but between visits, pumping, and sleeping that leaves little time in the day do much of anything else, I know I am a little behind so I will include what we have accomplished in the past few days.

July 23, 2012 Tonight I held Ameir for an hour and a half. He was awake for 45 minutes while his feeding was ran. He fell asleep right after his feeding was done. His weight tonight is 3 pounds 9 ounces. He is gaining weight and his lowest weight was 3 pounds 6 ounces. Andrew and I have decided after talking to another Trisomy 18 family that Ameir will be transferred to U of M. They have the specialists and he will need to see them eventually anyway. We are just waiting on the specialist to call our doctor and tell us when he wants us.

Here is Ameir sticking his tongue out at mommy.

The nurses put together Ameir's memory beads. Each bead symbolizes a milestone. I will get the printout when Ameir is released from the hospital and post it with his complete string.

5 Days Old

Saturday July 21, 2012

I got to hold my baby for the first time! I also changed my first poopy diaper. Ameir's IV was removed and he is strictly on oral feedings (by nasal tube). His vent settings are down to room air and 24 breaths per minute he normally breathes 50+ so he is not dependent on the vent. When they put him in my arms and back in the crib they disconnect the vent completely and he is fine with his oxygen status.

This is us the first time I got to hold him :) He finally gets to wear the hats big sister Adrianna and I made him.