Discharged From Home Health

Garrett was discharged from his home health visits today!  Yipee!

Weight:  11 lbs 1/2 oz  (Last home health visit: 9 lbs. 15 oz.  --we skipped the 10 lb range all together apparently)

Tomorrow morning we go for his regular pediatric check-up and then onto an Echocardiagram at Cardinal Glennon in the afternoon. 

Still No Results

Initially, OF COURSE, the doctors office said we should have the results from Garrett's re-newborn screen by the end of last week.  When I called today to inquire, they told me it could take much longer that one week to get them back.  I was a little suspicious when the other lady told me they would have them back within a week -- I thought that sounded to good to be true with the timeliness and I was RIGHT ON.

As soon as I know something it will be posted on here.  Thank you everyone for being so concerned about little Garrett!  I have a lot of texts, e-mails, etc., inquiring about him and the test results so I wanted to put this post up.

Garrett enjoying summer with his big brother Grant:

My CDH Miracle

I found out at an ultrasound CDH is what you had,

Nothing could have prepared me for something so unbelievably bad.

‘Your baby has a 50% chance of surviving’ is what the doctors said,

I had so many scary thoughts running through my jumbled head.

I decided from the beginning to give you the best chance I could,

I knew if you were a fighter, a good chance that you stood.

Your organs were working against you from the very start,

They migrated to your chest – stomach pushing on your heart.

Your lungs could not grow to what they were supposed to be,

Yet you still grew to a full baby, warm inside of me.

You made a quick entrance into the world one fine day,

Unfortunately the specialists did quickly whisk you right away.

I did not get to hold you as a normal mother would,

But I knew it was for the best; and this I understood.

You were such a strong baby; baby boy of mine,

You fought quite the battle, and it took quite a bit of time.

There were many scary moments, especially for mom and dad,

You came so close to life support; at times we were quite sad.

I sat by your side and watched you fight to stay alive,

I was by your side for always, from the moment you arrived.

I watched you improve to the baby you are today,

I watched the CDH battle slowly moving far away.

After living on a ventilator, many drugs, and surgery too,

After 45 days you came home to me, my baby number two.

You have taught me many things my son, too many to explain,

You taught me how to beat the odds, how to deal with all the pain.

You continue to grow stronger with every passing day,

Continue on this path my son, growing stronger in every way.

No one can explain why things happen the way they do,

No one can explain to me why I was given you.

You are my miracle; this you will always be,

I am happy god has given me you to stay on earth with me.

2 Months Old

Hard to believe Garrett is 2 months old.  We took him to my hometown for Father's Day Weekend.  My dad's side of the family was very excited to meet him!

 LOVE THIS PIC:  My dad sleeping in his chair and Garrett yawning in his.

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: