Continuing to Thrive

Weight at last week's home health visit = 9 lbs 4 oz

Weight at today's home health visit = 9lbs  15oz  -- almost 10 lbs. 

Holy Mackrel!!!

 

Making a funny face in the bath -- he loves the bath.

 Super content in his chair:

 Stretchin out on the floor:

 Remarkably he still has a very ROUND head.  Shocking since he laid in a NICU for 45 days.  He does have a little bald spot, small price to pay ;)

I'm Getting Sick of Making Lemonade From All the Lemons Thrown at Garrett!

Unfortunately we have now received some scary news from our Pediatrician.  It appears Garrett’s new born screen came back showing him ‘borderline’ for possibly having Galactosemia – a rare genetic condition.  Very upsetting news for all of us.  We are having Garrett retested and must wait a week for the results.

Galactosemia is a genetic condition that affects 1/60,000 babies.  Typical.  We suck with odds at our house these days. 

The good news – Garrett had a small blood transfusion after his surgery.  The blood transfusion could have actually thrown off his newborn screening results, which apparently can happen after a baby has had a transfusion.  Thus him showing up ‘borderline’.  This next test will determine if he does or does not have the condition.  We are hoping he does not have it OBVIOUSLY.  And just hoping the screen was thrown off due to the blood transfusion.

The bad news – if he does have it, it is not a very good thing.  Here is some info about it:

In individuals with galactosemia, the enzymes needed for further metabolism of galactose are severely diminished or missing entirely, leading to toxic levels of galactose……., resulting in hepatomegaly (an enlarged liver), cirrhosis, renal failure, cataracts, brain damage, and ovarian failure. Without treatment, mortality in infants with galactosemia is about 75%.

The only treatment for classic galactosemia is eliminating lactose and galactose from the diet. Even with an early diagnosis and a restricted diet, however, some individuals with galactosemia experience long-term complications such as speech difficulties, learning disabilities, neurological impairment (e.g. tremors, etc)

Galactosemia is sometimes confused with lactose intolerance, but galactosemia is a more serious condition. Lactose intolerant individuals have an acquired or inherited shortage of the enzyme lactase, and experience abdominal pains after ingesting dairy products, but no long-term effects. In contrast, a galactosemic individual who consumes galactose can cause permanent damage to their bodies.

As if the CDH battle wasn’t enough, now we may be dealing with this.  I am hoping and praying that our next screen shows that he does NOT have Galactosemia.  If he does, we will just have to deal with it.  Once again, what choice do we have?

I feel like I may have tapped out our prayer supply chain………however we still desperately need them.

~Janna

Trying to get a smile out of Garrett while trying to take the picture yourself = Blurry Pictures.

 Garrett trying to figure out what is going on with me (as I am trying to get a smile!)

 Hayley and Courtney meet Garrett:

 Grant saying "cheese!" for the camera:



Almost Forgot!

I need to add 2 things to that last post:

First of all Garrett started babbling today.  He looks like he is trying so hard to talk.  AND secondly, how could I forget this, GARRETT SMILED AT ME......... 3 times in a row!  I thought it was a fluke, but NOPE!  I was talking to him and he smiled and then did it 2 more times as I was talking to him.  Crazy!  He just loves being home with his mama apparently!

This Little Piggy is Gaining Some Weight!

Well, Garrett continues to gain weight.  Yesterday he was at 9 lbs. 4 oz. and today he was 9 lbs 7.5 oz. at his doctor’s appointment.  I wonder how long they will keep him on high calorie formula since he is gaining so good?!  I guess I should have asked that today at his doctor’s appointment.  Oh well, we are back in 2 weeks to the regular pediatrician so I will keep him on high calorie until then or unless someone tells me otherwise! 

A special thank you to Hayley Kohn and Courtney Atwood for their Garrett Gifts, the Honey Baked Ham, and great company.  I am so glad you had the opportunity meet Garrett.  It was GREAT getting to see you girls!  I miss hanging out and having ‘girly time’.

First Home Health Visit

          Garrett’s first home health visit went very well.  Thank Goodness!  I have been sweatin it – mainly about his weight and blood pressure.  If he did not gain weight that is NOT GOOD and I really do NOT NOT NOT want to be readmitted to a NICU anytime in the immediate future.  Let’s just say it wasn’t a problem.  When we left the hospital on Saturday he weighed 8 lbs. 12 oz. – today at his home health weigh in he weighed 9 lbs. 4 oz.  I think he definitely didn’t lose weight J. 

                His blood pressure was also GREAT.  Very in the normal range.  It has a tendency, as with most CDH babies, to be too high.  But it was good today!  His heart sounded good as well.  I told the home health nurse she can come by anytime she wants if she is always going to give me such good news!

Settling In

Garrett has settled right in at home.  It is SHOCKING to me what a CONTENT baby he is.  I just expected a cranky, hard to please baby due to the fact he had been through so much.  WRONG.  He is quite the opposite.   The only time I see him get very upset is when I lay him on the changing table to change his diaper.  At the hospital diaper changes went along with his assessments – which could include a LONG list of items with everything from blood pressure checks to blood draws.  So he has BAD associations with having his diaper changed.  The moment I get the diaper changed and pick him up he is SILENT. 

We have had a few spit ups with one BIG one the first day we were home, other than that he has been quite the easy baby.  The spitting up is normal for CDH babies.  We just try to keep him upright for at least 10 to 15 minutes after each feeding and that really seems to help.  The majority of feedings we do not have any problems.

Adjusting to a baby that requires a little more attention and a 3-year-old that is all excited to have a baby brother home is NUTS!  However I am enjoying every exhausting minute of it – wouldn’t change it for the world.

We have Garrett's first normal pediatric appointment tomorrow -- hoping for a weight gain!  We also have home health nurses coming to the house over the next month to monitor his blood pressure, weight, etc.  Gives me a little extra peace of mind, I'm LOVING that. ;)

Special thanks to DJ, Ashley, & Peyton Mernick for the food – good stuff!  Also want to thank my Chicago Family for the Lou Malnati’s Pizza’s that were delivered from Chicago today.  YIPEE to that!

Lovin from Mimi Vicky

 Lovin from Mimi Ellen

 Lovin from Papa Ed

 Check out those bird legs!

 Lovin from brother Grant