zoo

Last week, Leslie and Brian brought their family and Lori’s girls to Salt Lake, and we met up with them at the zoo.  The kids had a fun time, even though we got rained out. 

cutest.kids.ever.

singing in the shower

Drew got to go to Disneyland with his cousins, aunts and uncles, and Grandma Suzie and Grandpa Mike last week.  What a fun time he had.  Thanks so much for taking him Grandma and Grandpa. 

While he was there, he learned his new favorite song.  He sings it constantly!  (Sorry the video is sideways, apparently I don’t know how to use my phone correctly). 

hank

I have been horrible at updating about little Hank lately.  It just seems like the same old routine anymore, and we are just waiting to come home.  I guess, there are a few things to update though.

• Cardiology has put Hank’s pacemaker in a mode where it senses pressure in his body, and changes his heart rate based on that.  So his heart rate is not fixed anymore.  It has been different for us, but seems to be better for him.   Since then, the cardiology team has signed off, and we are to see them next for a follow-up appointment once we get out of the hospital.  Good I think. 
• Baby Hank has been a champion eater, and in general, takes all of his food by mouth.  They did pull his NG tube and he takes his meds and food through his mouth, the way it should be.  He has had a rough time getting his minimum volume in (because he sleeps all night), so there is talk putting a tube in as he needs it.  That would be okay and is something we could do for him at home if needed. 
• We just found out that Henry has some oral thrush, which I am pretty sure is from his inhaled steroid (used for his lungs).  Pretty treatable with nystatin by mouth, which is good because the thrush has slowed his oral intake a bit. 
• As far as respiratory goes, Henry has done really well.  No more high flow oxygen, just a regular cannula now.  He sits around 1 liter of oxygen at about 30 to 40% and does pretty good.  We are still working on weaning him down.
• Last eye exam turned out pretty good for Hank.  He is almost all the way in zone 3, with regressing ROP.  So, as soon as we get to zone 3 of development, his oxygen should not effect his eye development at all.   

(look at his scars.  pretty cool, right?)

(does not like having his blood pressure taken)

Hank has quite the personality.  When he doesn’t like something, or wants something, he lets you know.  There is no waiting in Hank’s world.  What a funny little guy he is.  We are so excited to get him home. 

A day at primary’s (with Drew)

When we are visiting Hank at the hospital, Drew often comes.  There are some fun places for him to play there, but sometimes, he just likes to explore with Steve.

Hank sees the world (really, just out the window)

Drew is growing

Over the past few weeks, Drew has really been growing up.  He talks a lot more, and we are starting to be able to understand some of what he is saying.  What a funny, smart boy he is. 

We recently moved him into the car bed that was passed on to him by his cousins Nick and Matt (this is in preparation for Hank to come home).  He really loves his new bed and spends time in it, even when he’s not sleeping.

Since Drew has been talking more, I thought I might write down some of the funny things he says and likes to talk about. 

• When Drew needs help with anything, he always ask for help by saying “Help you”
• Loves to have mom and dad take turns.  He loves to sing songs with mom and dad, but never at the same time.  First, it’s “mama’s turn”, then “daddy’s turn”.  Usually to this song. 

• This kid loves music, singing, and dancing so much.  When he finishes listening to his favorite songs on the ipad or iphone, he has started saying “I love his song”.  So adorable. 
• He loves to talk about the “piggies” on people’s and his own feet.  Sometimes, in Salt Lake Steve takes Drew to the church history museum on temple square.  There is a replica of the Angel Moroni (the one that sits on top of temples) there.  When Steve asks Drew about him, Drew always notices his feet and says  "This little piggy went to market."
• Whenever Drew sees a pot or pan you cook with, he is quick to tell me what it is, which according to him a “lolly pot”.  My favorite.

15 and 16 weeks

Well, I guess I don’t have pictures from 15 weeks old.  (I think I do, but I’m not sure where they are). 

Anyway, Hank turns 4 months old today.  Really, he is 4 to 6 weeks old developmentally, if you adjust for his actual due date.  He really has been growing up a lot and despite still being in the hospital, is getting his own definite personality. 

Health wise, he is doing pretty good.  Looking to come home in the next few weeks hopefully. 

What’s going on?

• He’s on 2.5 liters of high flow oxygen, his lowest yet.  Doing well on that.  Just weaning very slowly.   He does get an inhaled steroid twice a day to see if it will help with his lung disease.  We will see. 
• He gets to take his feeds from a bottle and is allowed 30 minutes to take his full feed.  After that, he has the rest as a gavage feeding through his NG tube.  I think on last report, he was taking about 70% by mouth, which is great.  Most of the time he doesn’t is because he is asleep.  Unlike everything else in his life, this is one area he hasn’t struggled too much!  Lucky us.
• He is slowing getting off his diuretics and allowing his body to adjust to that.  We will see how that goes.  We watch his weight gain and hope he doesn’t gain too fast. 
• He is finally off the morphine completely.  I’m not sure how much he likes that, but he does have ativan to help him compensate for the anxiety and agitation that it causes him. 
• Pacemaker is working great.
• Heart looks good.
• Hank does have an inguinal hernia.  Poor kid.  Surgery consulted and said that it is large, but easily reducible, so we will have surgery to correct that when he gets a little older.  Maybe 6 months or so.  

Hank is really waking up and interacting a lot more than he used to.  He likes to stand up on his feet and look around at everything. 

Hank with Aunt Lori and Uncle Nate visiting. 

4th of July and playtime

This year, for the 4th of July, we didn’t do too much.  We did get to go to the Centerville parade and watch Leslie and Brian’s family in the parade. 

I had a rough time getting some great shots of Leslie’s family, but they looked like they were having so much fun in the parade.  Drew liked running out and handing Matt a flag and seeing his cousins in the parade!

We didn’t end up seeing any fireworks.  Maybe next year.

Happy 4th of July!

14 weeks old

Last Friday, Hank turned 14 weeks old!

Changes since last post:

• No more lasix, back on aldactone and diuril
• PICC line out!  No more IV lines (for the moment)
• Back on full feeds
• Down to 3 Liters of high flow oxygen.  Lowest he has ever been at and holding strong. 
• Still growing. 
• Still weaning from morphine. 
• Gets to have feeds from a bottle.  He is allowed to have as much as he wants in 30 minutes.  Hank tires out quick, so he usually only takes about 15 to 20 mls (but has done more at times).  The rest goes through his NG tube. 

1st time with bottle (with Barb the PT that works with him)

Still waiting to get him home.  Excited about his progress though!

choreography

Check out this "dance" Drew made up to angry birds theme music.

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