2 Weeks Old

July 30, 2012

2 Weeks Old Today

We have had a lot of progress this week.  Today the doctors came in and said the "D" word.  It was kind of exciting.  ENT has signed off on Ameir's admission and said follow up in the office 1 month after discharge.  We are waiting on PT/OT for an evaluation today to see if Ameir will be able to drink out of a bottle.  Today we were going to try and take him off the nasal cannula but he had an ECHO that lasted an our and a half and when he was screaming through out it his oxygen was going down a little bit so we will try tomorrow. The radiologist told me that Ameir has 2 small VSD's that will close on their own but we have to see the cardiologist tomorrow so then can at least follow that they do close.  Since he is oxygenating good the plan is to just monitor clinically.  The plan right now is home early next week.  Fingers crossed that everything keeps going good for us.

Here is some ECHO pictures.

Ameir seen the PT today and she tried to tape his foot, but it kept turning a pretty shade of purple so she could not leave the tape on.

A couple pics from this afternoon.  He was awake a lot today :)

July 29, 2012

13 days old

Lots of visitors today.  Here are several pics.  Nothing really new since it is the weekend. Off the high flow nasal cannula and now just on the wall cannula.  With no added oxygen so it will be attempted to wean off this week sometime.

Another step forward.....

July 28, 2012

12 Days Old

Well, tonight I got a nice surprise.  Ameir was taken off the CPAP machine to give his little nose a rest from the CPAP and it was ordered that he can be on high flow nasal cannula.  He is doing good and really looks good.  I just can't believe how different these two hospitals really are.  I have control here and it seems like they are willing to let Ameir try things before just telling me he won't be able to do something.

Home Clothes

July 28, 2012

12 days old

Just some pictures in out home clothes.  Size preemie, he will need newborn size very soon :)

A New Spot

July 28, 2012

12 Days Old

Today I got to give Ameir his bath.  It was my first time, but not his.  I also got to play dress up.  Of course I did not have his bag over here so I had to put him in a hospital gown this time, I will have to get his bag and change him later.

Ameir also successfully sucked on his pacifier for 40 minutes today while he his feeding ran.   Since he is on the CPAP they can't try to bottle feed him.  Once he is off the CPAP we will be attempting to bottle feed.  CPAP started yesterday at 6 and today is down to 4.  This will be weaned off in the next day or two.  I can finally pick up my baby when I want to.  He is a cuddler and easily consoled. 

Ameir had his renal ultrasound today and the doctors looked at it and gave a preliminary normal reading, but we are still waiting on the official radiology report.

Here is his new name tag :)

I have been so busy here the past 2 1/2 days here is the update of what went on.

July 27, 2012

11 Days Old

First full day in the new place.  I got here by 7:00 am and lucky that I got here when I did, Ameir was on his way down for an upper GI study.  Results almost instantly, normal with no refulx.  We saw at least 30 doctors today, it is kinda crazy how this happens.  They come in sometimes one at a time and sometimes 6+ at a time.

ENT consult:  Ameir does not need jaw distraction surgery, his jaw is normal and proportionate in size to his head.  They are going to follow Ameir in case he needs a Trach or something, but at this time there is no plan for intervention.  Ameir's sucking reflex was checked and found to be adequate. 

Surgical Consult:  Ameir is too small for a G-Tube, so if he can not tolerate bottle feeds when we get to it he will go home with the NG/OG feeding tube until he is a lot bigger.  Unless he is having a Trach, he will get the G-Tube at the same time. 
 
Genetics Consult:  I already knew Ameir hasTrisomy18.  They are going to order a blood test for Karyotyping, a renal ultrasound since kidney issues are common in Trisomy 18, they also ordered a repeat ECHO of Ameir's heart to verify with the Cardiologists here what Covenant said.

Ameir was extubated today at 2:30pm.  I finally got to hear my boy cry.  He is a little hoarse so it will take a few days to get the full feeling, but there was noise and I heard it!!  AND he is back up to his birth weight 3 pounds 15 ounces.

They did try nasal cannula for a minute or two but since he was turning red (he always does when he cries) they went with the CPAP for a couple days.  It looks more scary than it really is. 

July 26, 2012

10 Days Old

Today we got our GO orders.  Finally insurance approved Ameir an out of network transfer.  U of M here we come.


Your chariot awaits you young man :)

Since the move may have been traumatic on Ameir (it was not we were assured he had a good smooth trip) nothing was started tonight that was different than Covenant.  Just going to relax tonight and start fresh in the morning.  

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.

It sure was a busy day, they also lifted the visitation restrictions and Adriana was allowed to visit.

Just some more pics.

3 Days Old

July 19, 2012

Ameir is 3 days old!  He is doing great.

Last night, Ameir had his first bath and has a ton of wild black hair.  The umbilical artery line is now removed.

I was discharged from the hospital today.  It was sad leaving him there but I know that he is in really good hands.  I can visit when I want and call as well.  We had some milestones today.  The photo therapy light was stopped.  I had my first mini-meeting with the NICU doctor and a couple nurses.  The doctor asked what I knew about the living kids with Trisomy 18 and wanted to be sure that I was ready for whatever.  His only worry which is really minimal is the oral secretions.  Ameir has a little bubbly spit in his mouth on occasion so after he gets bigger and off the vent they will reevaluate swallowing.  Feedings are being increased every 6 hours and at the same time the IV nutrition is being decreased.  When he is up to a full feeding the IV in his belly button will be removed.

The nurse told me about the bead keepsake they do.  Everything that Ameir does or test he has he will get a different bead on his crib and when he is discharged I get to keep that.  She was going to work on getting that put together and I will post that picture as soon as it is there. 

Tonight I took up our blanket to cover Ameir's crib, just a piece of home and us.  I had to go and tell him good night.  Also on my way out the nurse told me that the visit restrictions have been lifted and big sister Adrianna will be able to visit on the weekend and so will my sisters.  I called and woke them up to tell them :)

Tomorrow the doctors are going to try to take Ameir off the vent.  I will be praying for him since I can't be there when it is pulled due to an appointment, but I will be to visit in the afternoon.