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:



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

Garrett Comes Home

"I heard a rumor I may get busted out of this joint today!"

Last snooze in the NICU crib:

 Grant thinking he is funny........it was kinda funny.......

 Garrett's largest scar from his repair surgery:

 Waiting to be discharged:

 Headin out:

 Welcome home baby boy:



Day 45

Today Garrett Goes To The Zoo. :) 

Such A Happy Day.

You've Come a Long Way BABY.

Last night Garrett’s nurse was one that also had him before his repair surgery.  She told me she was his nurse during the night he almost had to go on ECMO (baby life support).  I knew there had been talk of him going on ECMO.  I am just glad that, first and foremost, we DID NOT NEED IT and secondly, I wasn’t around when the doctors where considering putting him on it.  I probably would have just fallen apart.  Once on ECMO, there is only a 50% chance that he would have been able to come back off of it.  The nurse told me he took a turn back towards the ‘better’ and the doctors obviously decided he did not need to go on it after all.  Talk about dodging that bullet – barely.

I guess the nurse telling me about how close Garrett was to going on ECMO made me really examine where he has come from THEN til NOW.  He has had to fight to live from the day he was born.  Garrett has to work for his life – with every breath he takes.  He only has ¼ of a left lung.  He has a misshaped heart.  He almost needed life support before he had been on this earth for 24 hours.  I look now at a sleeping miracle in his room.  He now wears no oxygen.  He eats from a bottle.  He stares at a mobile over his crib and makes baby noises.  AND, one of my favorite things is that he crys – it is so wonderful to be able to hear it. 

Day 44: Garrett is Back to Normal

Garrett seems to be back to himself today.  No more cranky baby in this room.  Just a wide eyed, content baby looking at his mobile.  So much better.  I find it interesting he is such a content baby most the time.  I mean...he has every right in the world to be a cranky baby with everything that has happened to him.  But he is not.  Quite the opposite actually.  When I stayed 2 nights ago at the hospital he woke up ONE time in the middle of the night for a bottle and right back to sleep.  I woke him in the morning for his morning feeding.  Right now he is grunting trying to get out of his swaddled blanket.  I just love baby noises.  And now it looks like he gave up and is falling back asleep.............

Bad news.........and more bad news..........Day: 43

                Today was rough for mom and Garrett.  First of all Garrett had his circumcision done last night.  So he was not too happy this morning about that.  Then this morning they stopped the last of his narcotic drugs.  Bummer.  He had pretty bad withdraws today.  He just was not his normal self.  Once again, I knew this was coming since we had postponed it once before.  But that doesn’t necessarily make it any easier.  We both cried today.  He cried from the withdraws and I cried because he had withdraws.  Lose/lose situation in our room today!  He didn’t even really want his binky….so I KNEW he was not feeling right.

                Other HUGE BUMMER is that Garrett lost weight over the past 2 days.  That is a big no-no when you are trying to get signed up for the next boat out of the NICU.  So that has obviously pushed back our trip to the ‘zoo’.  He was up to around 8lbs 9oz.  He dropped back down into the 8lb 8oz zone.  But as of this evening he was back up –8lbs  11oz, the best yet!  So I am trying to figure out how I can pump the most food into the kid without him spitting it right back at me.  J  Best bet for Garrett seems to be sticking with feeds every 3 hours.  He burns more calories than a normal baby because he works so hard to breathe.  So we have to pump as many calories into him as possible, while also being healthy about it. 

                Garrett seemed to be doing better late this evening.  His weight was back up and he wanted his binky with a vengeance – both good signs.  So I came home to sleep for a few hours.  The past few days have been crazy stressful. No one ever said the CDH rollarcoaster would be an easy ride – but it just is SO LONG!  I wanna pull into the unloading zone already!

Loving the Binky.

Car Seat Test (Day 42)

Garrett took his car seat test today.  He had to sit in his car seat for an hour.  He did just fine.  He actually fell asleep and ended up staying in the car seat for closer to 2 hours.  Looks like he will enjoy car rides like his brother!

                Today was an unbelievably crazy day in the orange hallway.  I made the mistake yesterday of saying out loud that it was an exceptionally SLOW day….then today happened; just very busy.  I also found out they are doing Garrett’s circumcision tonight, so I ended up deciding to stay the night as well. 

                We are now a catch 22.  Garrett is now in a good place health wise, so he is now a low priority baby compared to some of the others in the NICU.  So if a sicker baby needs attention, Garrett has to wait his turn.  Since he is doing so well, his nurse may have up to 3 babies.  So now I find myself actually spending more time at the hospital to take care of him.  I am very happy he is doing so well, NO DOUBT. It is just interesting when he was sicker, he had his own nurse and I was actually more comfortable leaving the NICU to go home for the evening.  Now I worry he will cry and no one will be able to come to his room until they are ‘available’.  Like I said – a catch 22.