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.