1 month 6 days old

August 22, 2012

1 month and 6 days old.  My little man Ameir is still thriving and doing amazing.  This week at the doctors Ameir weighed 5 pounds 10 ounces.  At the rate he is going I am going to have me a little chunker on my hands in no time.  Ameir was diagnosed with reflux this week, after getting input from other Trisomy 18 mommies I took him in to be seen.  When I told the doctor about the symptoms: sneezing, irritability at feeding time, spitting up a little yellowish liquid (bile).....she said it sounded more like an obstruction and panicked so we were sent for a STAT Upper GI.  Results were mild reflux and gas with no other abnormalities.  I also got a call from our first choice pediatrician.  He explained that he was on vacation last week and wanted to check on Ameir.  I had to use another pediatrician because on discharge we were told Ameir had to be seen in 3 days.  The office did not explain to me that Dr was out, just that if the appointment they had would not work we had to choose another doctor.  He still wants to be Ameir's doctor so we will begin seeing him Friday.  He has another T18 child so I want to use him as he is more familiar with issues our children face.

Life at home is busy.  We have a lot of appointments and people coming to the house, but I am told that will slow down soon.  I wouldn't trade having Ameir home for the world.  Overall Ameir is a pretty easy baby.  He cries  at feeding time and when his diaper is dirty.  He loves to snuggle with mommy.   He sleeps pretty good.

Here are a couple pics from the week.

 

Beating the Odds...Happy 1 month Birthday

August 16, 2012

1 month old today :) 

Today is one of many days we hoped to make it to but were not guaranteed.  Ameir is one month old.  Against all odds he is LIVING and doing GREAT.  Last Friday Ameir came home.  A little Trisomy 18 info, boys do not usually do as good as girls with Trisomy 18, a lot of babies don't even survive birth, of the few that do survive birth many do not make it home from the hospital.  Today makes day 6 at home.  I have taken him to several appointments and we have several people come to the house to work with Ameir so I don't have much time to update my blog.  As we get into a routine and the visits let up a little I will try to update more often. 

Ameir is happy and smiles often.  He is adjusting well to our home schedule.  He is starting to wake up at his feeding time rather than my alarm waking me, him crying is more pleasant than my alarm clock going off. 

What are my goals for my baby, I want him to live a long and meaningful life.  I want him to continue to bring joy to me and my family.  I want him to be respected and treated like any other child.  I want him to teach the medical community that children with Trisomy 18 can live and thrive!

Monday at the doctor Ameir weighed 4 pounds 15 ounces, on the home nurse scale he weighs 4 pounds 12.5 pounds either way this is a pound over his birth weight (there is a discrepancy in that too I was told 3 pounds 15 ounces but U of M said records from Covenant say 3 pounds 12 ounces).

Adrianna has been a great helper and I don't know what I will do when she goes back to school in a couple weeks.   


Here are some pictures from the past week.


Getting ready to go home.

Daddy holding Ameir for the first time.

Ready to go.

Car ride home.

Just getting home.

Bouncer for the first time.

Bassinet with music and mobile, he loves it :)

3am feeding time sleeping in his bassinet.

Good morning little man, first morning at home.  Ameir had a great night, the alarm did not go off at all.

Adrianna picked out little monsters for his outfit.

 Some big sister snuggles.

Bad mommy fell asleep holding Ameir.  (Lack of sleep setting in but totally worth it)

Swing for the first time.

We went for a walk to IGA for some milk.  Put Ameir in the stroller and he slept the whole trip.  He looks so tiny in there.

Feeding Ameir on the couch.

I'm going to get that bear!

Hanging out in my boppy pillow.

 I'm still going to get that bear!

HOME is in our near future.....

August 9, 2012

24 days old


The countdown begins.....in less than 24 hours Ameir will be released home, and I will be on my own.  No nurses to double check that Ameir's feeding tube is placed in the correct spot, no nurses to take his blood pressure or temperature every 3 hours, nobody asking how many times he peed and pooped today, nothing but a weekly home nurse visit for vitals. 

I have been an emotional wreck all day.  21 weeks ago I was told that my baby would not survive another 4 weeks of pregnancy and here I am packing up little man's hospital room into our home bags.  With everything going on I have forgotten something semi-important, I didn't pick out a coming home outfit....I have a lot of clothes up here with us, but totally let picking one special one for HOME slip my mind.  All along I had plans on going home with Ameir and it seems reality has now set in.

Today the pulmonologist asked me what were my goals for Ameir and what do I want....I told him that in 5 years I want to be signing Ameir up for Kindergarten and I mean that.  We had tons of doctors come in today to give us the all clear.  The discharge planner made a return visit to let me know which company will be supplying our DME needs and home nursing visits, not to be confused with home health care...I guess the hospital social worker signs us up for that and I have not seen her at all this week.

Ameir passed his car seat test yesterday.

Tomorrow after my infant CPR class we will be homeward bound!!!  I will try and update again tomorrow night, I changed the camera battery because I know we will have tons of pictures of tomorrow.