I will never take for granted in my tomorrows, the miracle I hold in my arms today.

Well ladies and gentleman this will be my last post on my CDH blog.  I am converting back to only updating our family blog.  Any of my CDH family can feel free to now follow our family blog if you wish to continue to see updates on our entire family, including Garrett of course:  www.thecaraviafamily.blogspot.com

Garrett contintues to thrive.  He is still in the 11lb range somewhere and growing a mile a minute.  Garrett will forever have some ‘health issues’.  However his issues are minor compared too many CDH babies.  As said by another CDH mom, “When you have a child with CDH you spend their entire life sleeping with one eye open.”  She was exactly right.  You always have to monitor their health and be proactive about issues as they arise.  Once you are a CDH parent, you are ALWAYS a CDH parent.

I want to thank everyone that has read my blog as well as any one who reads it in the future.  This link will always remain active for reference for future CDH families.  Garrett is now a part of our family.  CDH will always be a part of him; however I will never allow it to define him.  So I decided to wrap up our CDH story.  Ours had a happy ending.  Fortunately he was a lucky 1 of 800 babies that lived this year.  Another 800 babies died in the past year due to the CDH birth defect.  In writing this blog I hoped to create awareness of a birth defect that I had never heard of until our diagnosis.  So thank you to each of you who followed Garrett’s story.  You all helped make this blog worthwhile.

Garrett Talks to Mom

I think he is saying something to the effect of, "Do you have ANY IDEA what I have been through!!!" 

hahhahahahahaha

Re-New Born Screen

Results = COMPLETLY NORMAL :)

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.

               

By One of my Best Friends

One of my best friends recently wrote about me on her blog.  It was a very well written post so I wanted to include it on my blog.  Megan is a labor and delivery nurse -- and a mighty fine one might I add!!!  Love you much Megan!

My Friend :  By Megan (Ellett) Parcel

Can I just talk a little bit about one of my best friends, Janna?

She, Andrea, and I met in the fall of 1999, and were basically inseparable until spring 2003 when Andrea and I graduated college. Janna graduated the spring before but came back for lots of weekends. Anyways, these two women are defining women in my life. They loosened me up, helped me become confident and sassy, and are basically the sisters I got to choose. I love them both dearly and would drop anything at anytime if they needed me. I am positive they would do the same. We have grown from giggling college coeds to giggling grown women when we are together. Our husbands get along. Our kids get along. Coincidentally, we all only have boys...word is still out on Andrea's latest bundle of joy, but I have a feeling she's in for boy number two also!

This fall, Janna and her husband, Paul, found out at a routine ultrasound that something was wrong with their baby. Further tests revealed that their second son has a birth defect called congenital diaphragmatic hernia (CDH). To make a long explanation short- his abdominal organs were in his chest cavity and didn't allow his heart or lungs to form or grow properly.

Now, I know what I would have done with news like this. I would have turned into a crying, weak, worrisome, unpleasant, wallowing in the sadness woman. And after learning of the less than favorable odds that he was given- I would have shut down. My heart was breaking for my friend and her family.

Not Janna. She met this head on, did countless hours of research on CDH, doctors, hospitals, treatment options, facilities. She became totally engrossed and invested in this baby. She started throwing around medical terms like a pro. She started a blog (www.ourcdhstory.blogspot.com) for all her friends and family to read. The last time I checked, that blog had over 20,000 visits.

She was determined to change the odds for her baby.

I know Janna. There is no one more head strong than her. (I know, I've lived with her!) If she wants something to happen, she makes it happen. She excels at everything she does. She is strong and smart and always prepared.

Through this whole thing, she has been positive and thankful. I am sure she has had bad days or moments, but she has kept it in order. And that's something I am in awe of.

After Garrett was born, she has been with him every day. She knows him like the back of her hand. She has been his biggest supporter and advocate. She hasn't been afraid to tell the doctors and nurses what she thinks is best for her baby. She knows that no one knows him like she does, and she does what he needs her to do for him.

I had the privilege of visiting them last week. Let me just say, the pictures do not do the poor kid justice. In the pictures, yes, he is adorable. In person, he is beautiful. Big, dark, handsome eyes...my oh my. Heartbreaker.

Now, I see babies every day. But when I saw him, I teared up. He is a fighter, stubborn, and headstrong. He knows what he wants and how to get it. He's got his momma in him. And watching them look at each other will forever be locked in my memories.

The odds for a CDH baby truthfully aren't very good. Definitely not in your favor. Garrett has been a lil man on a mission. He was able to stay off ECMO (baby life support), he did great after his surgery, was able to be extubated, and most recently, has mastered the art of eating. (He will now fit in with all of us and our boys!) This little baby is nothing short of a miracle.

I am so thankful to God for Garrett's recovery. I can't wait to see what life has in store for him. He has a purpose, that is for sure! I am excited to see him grow up.

I am sure though, no where near as excited as his mother and my friend Janna.

Cannula Free: Day 41

Garrett came off his oxygen today.  He still breathes fast.  It is weird to be able to see his face.  VERY WEIRD. 

Frantic for the Bottle

Garrett gets "frantic" for his bottle.  It is so funny.  "Frantic" is the word the nurses use to describe it.  He just flails those little arms and then – suck, suck, suck, suck as fast as possible once he gets his hands on it.  Too funny.  Today they decided to change his feedings to allow him to eat as much as he wants at each feeding.  So they filled his bottle up with 90 mls……….and he ate all of it…………hahhahaha.  I did 2 feedings today and he ate the entire 90 mls at both feedings.  Quite the little porker. 

He is still keeping all his feedings down.  It is almost like his stomach just ‘figured it out’.  He acts so much like a normal baby now I am somewhat shocked.  For so long he was sedated and if he did get upset, they would just give him stronger drugs.  Not so much anymore.  Now the binky is his main soothing item instead of upping the morphine or getting a dose of versed ordered.  AAAAHHHHH, to be a little normal is a wonderful thing.

Special thanks to the Henson Family – Herb (aka Herbie as far as I am concerned), Michelle, Alyssa, & Anna for the Red Lobster Gift Card.  I can’t remember the last time I cooked a meal from scratch in the past 40 days, so the gift card is VERY APPRECIATED!!!  I can’t wait for you to all meet Garrett.

Also would like to thank a fellow CDH mom Lindsay Kranz for the CDH t-shirt.  I keep it in my car as a spare incase Garrett decides to decorate me with spit-up at the hospital.  It is always great to get to see you and Karlie – what a strong little CDH miracle she is!

40 Days......you must be kidding me! We have been here FOREVER!

Garrett is doing just fine – I know I took 2 days off from updating the blog.  We just had a very busy Memorial Day weekend, hence the hiatus.

Nothing very new to report.  They CONTINUE to wean his morphine and oxygen; however he is still on both.  We are not sure if he will come home on oxygen or not.  There has been talk about when Garrett will go to the “zoo”.  Apparently they do not use the “H” word (home) here in the NICU as babies tend to regress when they do! Hahahah.  So they talk about them going to the “zoo”.  I find that very entertaining.  Though there has been some talk of it, I know it is not in the immediate future.  We still have a list of things to accomplish before little Garrett will be taking any trips to the zoo.

 I am very ready for the zoo whenever we can get him there!!

Silence........(Day 37)

            Such a quiet room we now have.  No med pumps beeping.  No alarms from the vitals monitor (unless one of Garrett’s leads falls off or comes loose, which does happen occasionally).  No alarms from the ventilator. No alarms from CPAP.  Just a quiet, content sleeping baby………..

            Special thank you to Shaun, Andrea, and Westin Gress.  The lunch was great and I can’t wait to break into that gift basket.  Westin is such a cutie; and SO WELL BEHAVED!  My goodness!

Trying out the NICU swing.



Removal of the Feeding Tube

Garrett's feeding tube came out today also. Dr. Yang stopped by the room and told them to remove it, so out it came.  Not a bad thing considering Garrett removed it twice by himself in the past 24 hours or so.  He was OBVIOUSLY ready to see it go.   He will now eat everything by mouth.  Oxygen cannulas are the only thing left on my baby's face.  :)

We are now down to a 'short' list of what Garrett is on.  This list ain't got nothin on where we started!  There is my Southern IL lingo for ya --

• Oxygen - Nasal Cannulas (will continue to wean)
• Morphine (will continue to wean)
• Pepcid (will continue at home)
• Daily Vitamin (will continue at home)

Let's not forget:

• SMALL lungs - hopefully will continue to develop more lung tissue over TIME
• Slightly mis-shaped heart - still seems to work normally

Day 36: The Mobile

Garrett’s occupational therapist recommended a mobile for him.  So I got him one and he is fascinated by it.  Grant had one and had no interest in it really.  Garrett is still eating well.  Some feedings he does gets full before he has taken all of his “66 mls” so we just put whatever he didn’t finish down his tube.  He is continuing to keep all his feedings down, gotta love that!  Besides his feedings (which is what has obviously been our focus here lately) we have been weaning his morphine and monitoring his withdraw symptoms.  He is also scheduled to undergo an echocardiogram tomorrow to check on his heart and his pulmonary hypertension.  

Day 35: Drum Roll Please........

66 mls -- all by mouth -- no spit up

It is a happy day! :) 

Day 34: Updated Late Because Blogger was Down Last Night!

Garrett is trucking along with his feedings.  He has not spit up ONE TIME since Sunday morning.    He actually LOVES the bottle.  He attacks it ferociously when we give it to him like he has not eaten in weeks.  We have been offering him/letting him take around 50 to 55 mls and putting the rest down his feeding tube. I DO NOT PUSH HIM.  I think if he stops eating there is a reason; especially because he no longer has a problem with his suck/swallow/breathe mechanism.  He is a pro – he truly amazes his mother.

            I read on another CDH mom’s blog something that also rings true to me.  She wrote how mothers are supposed to teach their children many things, but her CDH baby has taught her more than anyone could ever understand.  I would have to agree with her.  Little Garrett has taught me so much.  He has taught me that even with poor odds; that odds can really mean nothing.  He had me mentally prepared for him to be on life support, only to never need it.  He has taught me how to be a mother to a high needs baby.  He has taught me to read him and not ‘always’ agree with the doctors and nurses.  He has taught me more than most people will ever be able to fully understand. 

Fortunately most people will not have to go through what we have these past few weeks.  God chose me to be Garrett’s mother for a reason.  What that reason is I may never know.  I just know that I never ONCE questioned why Garrett is the way he is.  I just loved him.  I feel that that is the main thing that all babies really want to be anyway -- just loved.

Doctor of the Year

Let’s talk Dr. Yang for a moment.  Dr. Ed Yang is what I consider to be a CDH master.  A large part of his life’s work is dedicated to the CDH birth defect.  In our case, Dr. Yang has followed Garrett from in-utero, through the present, and will do so until we get discharged I do believe.

 I don’t think he sleeps.  He stops by Garrett’s room once a day, in person, to check in on him.  He obviously used to be in our room more, but we are on the upside of our CDH battle so now we do not have the need to see him more than that.  After I delivered at St. Marys Hospital, he stopped by that evening to see me.  It had to be around 8:00 that night.  He told me he was going to stop back by Cardinal Glennon to see my husband & Garrett on his way home.  So who knows what time he got home that night.

Dr. Yang also did Garrett’s repair surgery…….thorascopically might I add, which used three tiny incisions.  Garrett’s scars are minuscule, and completely healed up at this point.  A lot of surgeons still make a large incision for CDH repairs; but not Dr. Yang.  He also performs operations on babies still in the womb with CDH to try to increase their chances of survival.  In our specific CDH case, the risks outweighed the benefits for the Tracheal Occlusion procedure.

With our initial CDH diagnosis I found 3 facilities in the US that I thought were the best for handling CDH babies.  One of the three was with Dr. Yang at Cardinal Glennon – so fortunate to live so close to St. Louis.  So hats off to you Dr. Yang, you obviously won the Doctor of Year award in our book!

Inching up the Feedings by Mouth: Day 33

During rounds today we decided to go up 5 mls on the feedings by mouth.  Garrett still gets 64 mls every 3 hours.  So now he is taking 50 by mouth and having 14 down his feeding tube.  We have only done 1 feeding so far at that rate and he kept it all down with no spit up.  I should also refer to his spit up as projectile vomiting …….because that is what it is.  It is not your normal baby spit up. 

I love it when the doctors or nurses tell me, “well, that is what a normal baby his age would be doing, eating, etc.”  Let’s face it.  He is not normal.  APPARENTLY, a normal 1 month old would be eating around 64mls by mouth every 3 hours.  WELL, it just may take Garrett a little longer to get there.  I think he is doing remarkably well.  The fact that he keeps down 50 mls every three hours I think is pretty darn good.

Special thanks to the Brentlinger Family – JR, Nikki, Jase, & Gentry, for brining dinner by last night and Grant’s big brother gift.   I am going to cook it tonight; so excited!  I didn’t get the chance last night as I got home MUCH later than anticipated.

I wonder what Garrett looks like without stuff on his face?  Someday I will know.



Adjusting Feedings: Day 32

In a nut shell I fed 3 bottles this afternoon & evening while I was there.  We only offered Garrett 45 mls by mouth.  He took all of it like nobody’s business.   Then we put the remaining 19 mls of his feeding (64 mls total) down the feeding tube over about 20 minutes or so.  All the feedings stayed down doing it that way.  I think he needs some time to work up to taking 60+ mls by mouth.  There is a surprise; this is going to take some TIME.  Geeeeesssoooo.

Feeding is Going to TOTALLY Test my Patience: Day 31

Today I fed Garrett 3 bottles.  The first 2 did not go so great.  They want me to give him 60 mls over 30 minutes.  He seems to not quite be able to tolerate that much in a short period of time without spitting up.  He has NO PROBLEM sucking it down (obviously my child).  He sometimes still does get short of breath while eating because he gets in such a hurry. I make him take frequent breaks while eating to try to burp also.  If I would let him, he would suck the entire bottle down within 3 to 5 minutes……but I don’t let him because I would immediately see ALL of it again instead of just some of it! ;)

The last of the 3 bottles he took about 42 mls of the 60 in the bottle, with breaks in there to try to burp.  The 42 was taken, along with burps, within about 10 minutes.   When I went back at him with the bottle he slightly refused it, so I did not push it on him at all this time.   I put him up on my shoulder and patted his back for about the last 20 minutes of the feeding time.  I got a HUGE burp after about 10 minutes of patting, but no spit up.  Then the nurse put the last 18 mls left in the bottle down his feeding tube.  He did gag a little, but did not spit up at all.  I kept him upright for another 10 minutes or so before putting him back in his crib to leave for the evening.  He is going to have reflux, hands down, so it helps to keep him upright during/after feeding. 

Going with my maternal instinct on this one……….I think 60 mls is a little much for his stomach to handle at one time.  He seems to do better with 40 mls or so at one time.  I may talk to the doctors to see what they recommend on rounds tomorrow.  Maybe we can adjust the amounts somehow.

Special thanks to Megan Parcel!!  She brought our family 4 dinners she made and froze for us to eat whenever and a big brother gift for Grant.  We will be eating GOOD on those dinners!  Thanks Meg – SO GOOD TO SEE YOU :) 

1 Month Old

Garrett is one month old today.  I am sick of the NICU.  I am ready to bring him home.  I am mad at the world today.  Not going off the deep end here or anything, just in a very foul mood that doesn’t want to go away.  The only cure for my pissy mood would be getting him out of this place.  I feel bad for anyone at the hospital who has had the displeasure of crossing my path today.  Unfortunately I think the bad mood is going to now have to stick around until I do get him out of here!

On a brighter note -- A few special thank you’s this week:

·         The Xenia School Girls – Thank you for the thoughtful card and ‘gifts’.  It was unbelievably thoughtful of all of you!  We truly appreciate it.

·         Kim, Cal, Cari, & Cali – That you for the card and gift dropped off at mom’s.  It was a very generous gift from you all that will be put to good use during our time in the NICU.

·         Juli Coble Kastl – The Andy the Elephant toy looks super cute in Garrett’s room!  Thank you very much.

·         Sarah (Mernick) Williams & Family – Thank you for providing a PHENOMENAL chicken dinner than I ate from for 3 nights in a row!  I LOVED IT that much!

·         Ed & Jeanne Hayes – Thank for the Chili’s gift card which has already been put to good use!

·         Aunt Nancy – The Olive Garden gift card is being saved for one of the times mom and dad are out to enjoy it with us!