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!

I am too Angry to Think of a Title for this Post: Day 29

The Good – My little Garrett is doing very well.  He took the same amount from the bottle again today and kept it all down.

The Bad…..the very, very bad – I am not going to go into great detail, I am just going to say that today I have lost quite a bit of faith in the hospital and some of their decisions.  Ultimately I am beyond words because I am so upset.  The vast majority of the doctors, nurses and surgeons are beyond marvelous.  However, it only takes one unbelievably POOR decision by one or two people to cause what happened to Garrett to happen.  They put my child at risk for something (which he has now contracted) that he should have NEVER been put at risk for.   Right now I am praying that it does not affect him.  We are lucky he is in as good of a place as he is health wise.  Otherwise this could be even more devastating than it already is.

Garrett Made his Momma PROUD! (Day 28)

                 Garrett amazed me today.  With our second bottle attempt, he did MUCH BETTER.  First of all, I saw a major improvement with his suck/swallow/breathing.  He took at total of 22 mls. -- which is exactly what he gets in his continuous feeds during 1 hour.  While he was eating his stomach made a HUGE RUMBLING sound.  He and I both kinda looked at each other. I told him that I hoped that his stomach was ‘kick starting’ itself!  I have never heard his stomach make any noises before.  After the 22 mls, I put him on my shoulder, got a little burp, and he fell asleep with a full belly…………..for the first time.  AND…………drum roll please……………NO SPITTING UP AT ALL!!!!!!!!!!!!!!!!!!!!!!!!!  YIPEE FOR GARRETT!!!!!

                We didn’t want to push things, so he only did the one feeding for today with a bottle and is now back on continuous feeds.  But this is a GIGANTIC step for my baby.  Today was the first time his STOMACH took food and did not reject it.    I have teared up about three times because I am just SO HAPPY!

4 Weeks Old

                Garrett now has both occupational and physical therapy every weekday.  They work his little muscles and he gets baby massages.  They tell me he is actually REALLY strong for a little guy.  I told them I attributed his strength to the CPAP machine.  The entire time he was on it he worked his neck and arm muscles so much trying to get if off he had to build up some muscle tone!

                Garrett also wears clothing now!  I forget to mention this.  Since the PICC line came out we do get him dressed.  I did bring in some outfits from home.  But I quickly learned he goes through a lot of them AND my clothes get confused with the hospital outfits that are used in the NICU.  So I decided, for the time being, just to use the little hospital outfits so mine don’t keep disappearing. 

                I LOVE watching Garrett’s “numbers” steadily come down.  That is what TIME seems to buy us – better vital signs.  I know most of you are like me, probably not familiar with vital signs (unless you are a nurse or doctor).  Garrett’s breathing rate once he was extubated was in the 80/90 range regularly, and would spike well over 100, which is HIGH.  Now he sits in the 60 range most of the time.  (While on the ventilator, it kept him around 40 which is the range he should be in with normal lungs).  His heart rate now sits in the 140 range.  Previously he was in the 180/190 range and would spike over 200.  That is also way too high.  So being in the 140 range is much, much better.  I don’t normally post numbers.  I find them confusing when I read them on other blogs.  The point is, his are steadily decreasing.  Which means his lungs and heart do not have to work quite as hard as they have been.  Garrett’s vitals, I would assume, may always be a little higher than an average person.  Though his lungs can continue to grow for the next 6 years or so; they will never be 2 fully developed lungs.

                When Garrett wakes up we will attempt his bottle for the second time ever.  I am prepared, I hope he is too!

We Attempted Our First Bottle: Day 27

              Today we tried the bottle.  It went how I figured it would. He had trouble with it in general.  Sucking, swallowing, and breathing, was a little much for him to do at one time.  Over 30 minutes we got about 19 mls down him – which isn’t that much.  He had the hiccups for 5 to 10 minutes of the 30 minutes I tried to feed him.  During that time I really could not feed him at all.  Then, the very last minute of the 30 minutes of the feeding, he puked up half of what he ate all over both of us.  Fun times.

                That is pretty much how I really did anticipate it would go for the first attempt.  I have NO IDEA how long it will take him to be able to learn to eat. There is no way to tell really.  Not to mention just learning how to eat, his stomach also has to learn what to do with it.  He has been tube fed into his intestines, so his stomach really has no clue what to do.  Time will tell how this will all play out.  Today we just attempted one bottle feeding.  We will ‘try’ again tomorrow and see how it goes.  Let the games begin…………..

No Bottle Tonight.

Garrett's breathing was a little fast today.  So we decided to hold off on the bottle feeding for now.  Hopefully we will give it a whirl in the next few days still.

Day 26 - A New Bed for Garrett

                Garrett was moved out of his isolette today and into a NICU crib.  Wow.  At first I thought I was in the wrong room today when I walked in.  I seriously had to do a double take.  I also walked in right as the doctors were doing rounds in our room, so it was perfect timing. 

                They stopped Garrett’s continuous feeds and are going to try a couple of Bolus feedings before we go for the bottle.  Essentially that means they are going to feed him what would be like a full bottle through his feeding tube and see how it goes before actually giving him the bottle.  His feedings on continuous feeds is very gradual throughout the day, so this will be all the food at one time. We will see how he does.  If he handles a few of the Bolus feedings well, we will try the bottle later this afternoon.

                Garrett has had his first visitors (besides immediate family) over the past week.  Thank you Juli Coble Kastl, Jake Colliflower, and DJ, Ashley, & Peyton Mernick for coming to see him!  I know it is not that exciting to look at a baby sitting in an isolette all day – so we appreciate you stopping in.

Day 25

               Today Garrett had his PICC line removed.  That had to feel GREAT.  It has been in his arm almost since birth and was just always ‘in the way’.  So I was glad to see one more line be taken OUT OF my little baby.  They also turned down his oxygen flow and stopped his Lasix (which has been helping him get rid of excess fluids I believe).  So he is down to his feeding tube and his oxygen cannulas ONLY at this point.  He still gets some meds through his feeding tube.

                He was a very content baby today.  Awake for a while; sleeping for a while.  Not fussy at all.  Tomorrow we are looking at trying him on his first bottle - a little nervous about that!  Yet another fairly uneventful day for us in the NICU.

Day 24

          Today marked Garrett’s last day on intravenous feeds.  They stopped them this morning.  He was getting nutrients straight into his blood stream up to this point.  Now all his nutrition will come from his tube feeds and a daily vitamin.  He is still getting regular doses of morphine to keep him comfortable.  Since he is done with intravenous feeds, hopefully his PICC line in his arm will come out soon.  I know it has to irritate him.  Once the PICC line is out, he will only have his feeding tube down his nose and his oxygen cannulas on.  They can still administer his morphine and other things through his feeding tube.

                He is starting to look more and more like a normal baby as more tubes and wires get removed.  I think he definitely has his days and nights confused, as most babies do.  He likes to sleep all day and is usually wide awake about the time I am looking at heading home for the night. 

                Hopefully soon we will be able to try feeding him by mouth to see how it goes. I think they want to give him a little more time on the plain oxygen and make sure his vitals stay stable before we attempt it.  It will be our next big step.

Off CPAP? Day: 23

Today at noon they took Garrett off CPAP……….again.  This time, thank goodness, they have monitored him closely and watched his vitals BETTER this go around. Of course, I have been here all day this time so I have been making SURE they paid attention to them.  (Mama bear came out on this one.)  They were only going to leave him off CPAP for 4 hours initially.  But he did very well with his vitals, so as of 8:00 p.m. tonight he is still off CPAP.  He is back on the regular oxygen and seems to be tolerating it much better this go around.   Let’s keep our fingers crossed………….

Garrett Needs Rehab: Day 22

Garrett is having a hard time with withdraws from his narcotic drugs. He is now off of all his ‘drips’ or ones that were being continuously administered.  He did have to get a dose of morphine this morning to help him calm down as he was beside himself. As a wise nurse from Flora, IL, told me:  it is a blessing that he will not remember a lot of his struggles during this time.  I agree to that.  Drug withdraws are difficult for adults to go through, hence so many having severe additions.  So I can only imagine a 3 week old having to go through them.  I knew we would have to face this, I am just glad he will not remember it when he gets older.

                He is sleeping peacefully at the moment.  That is ALWAYS a good thing.  Modern medicine amazes me.  The change in handling babies with CDH has changed drastically over the past 20 years.  One of our NICU nurses has been here 25 years.  She told me when she first started in the NICU, when a CDH baby was born they took the baby straight from delivery to the operating room to have its repair surgery.  The survival rate during that time period was, obviously, very low.  Now they handle things so much differently as you have seen with Garrett.  He did not have his repair surgery until he was 6 days old.  Interesting how things change over time.  I feel if I had had Garrett 25years ago his outlook would have been even bleaker.

                This afternoon my 3-year-old Grant will head out with my parents to the Quad Cities for my brother’s wedding.  Unfortunately my husband and I are not going.  Garrett is not having the best of times right now and I feel that my place is here with him (Solid 4 to 5 hour drive from STL to Quad Cities).  It is a sad thing for me to miss my only brother’s wedding.  No words can express how sorry I am to miss one of the most special days in his life.  I feel once Ben and Ashley have their first child and feel the love for that baby; they will never question this tough decision I had to make.  I know the wedding will be marvelous and I wish them both much happiness in the years to come!  Bring on the nieces and nephews as far as I am concerned!!!!!!!!!!

Update from this afternoon:

So there were a few changes today since my morning post.  First of all, his withdraw symptoms are not so bad because they decided during rounds to keep him on doses of morphine.  We will worry about morphine withdraws when he is NOT still looked up to so much and no longer has a PICC line or IV.  The morphine makes Garrett a much happier camper.

            Secondly I wanted to report he is steadily gaining weight as they have been upping his tube feedings and going down on his intravenous nutrition.  He currently weighs 8lbs 1oz (he was 7lbs 5ozs at birth).  He is moving in the right direction with his weight and growth; which is eventually what is going to get him HOME.  Eventually we will attempt feeding by mouth.  That may not happen until he is off of CPAP.

            So things are fairly smooth today at the NICU.  An uneventful day is my favorite kind of day.

 

3 Weeks Old -- Day 21

              Garrett is 3 weeks old; I cannot believe it has been THREE WEEKS.  The days all blend together.  Today was a normal day in the NICU for us.  I held Garrett – not for as long as usual as his CPAP was NOT staying together good today.  Every time he moved it popped off, so I ended up putting him back in his isolette.  He was actually pretty comfy in there today.  He has calmed down since yesterday, which made me very happy.

                They completely shut off his Fentanyl today.  So he is no longer on any meds for the pain.  He does get doses of Versed fairly regularly just to take the edge off because he has trouble sleeping with the CPAP on.  Other than that he had a pretty good day!

Here is what CPAP looks like  Pretty uncomfortable.

 A brief sleepy moment on CPAP.  Note the hand creeping up to try to pull it out. :)

With everything that has happened to you, you can either feel sorry for yourself or treat what has happened as a gift. Everything is either an opportunity to grow or an obstacle to keep you from growing. You get to choose. - Dr. Wayne Dyer

Oh the CPAP: Day 20

Garrett had a bit of a rough day today.  During the middle of the night someone had the bright idea to take him OFF CPAP.  (He was supposed to be on it for AT LEAST A WEEK per his doctors).    Not going to get into all the reasoning, let’s just say Garrett never should have gone off of it.  Bad, bad, bad decision.  This is why I do not like NOT being at the hospital.  I mean REALLY, who takes an infant with severely underdeveloped lungs off a breathing machine at 2:00 a.m.???   

So from 2:00 a.m. until 11:00 a.m. he was off CPAP, and went back on it at 11:00 a.m. today.  It took the majority of the day to get him calmed down and his heart rate and respiration rates back down somewhat.  They are still not down to what they were, but they are slowing moving in that direction.

Garrett had his usual holding time today as I tried to calm him down.  He was pretty irritated from his ‘time off’ from CPAP.  As much as he hates the nasal cannulas I do believe he hated being off of it more!  However he snuggles right into my arms and is (usually) content while being held.  I love holding him.  It is GREAT.  Especially knowing how much he enjoys it makes me a very happy camper. 

We have been gradually upping his feedings and he seems to be handling it well still.  They have also been weaning his Fentanyl (pain med) which is almost completely off.  He has had to have quite a bit of Versed to try to calm him down over the past 24 hours.  However I am always for giving it to him when he is upset.  He has been through a lot for a little guy so let’s at least make him more comfortable! 

Garrett has the biggest, darkest eyes.  He actually looks more like I thought our children would look.  When I had Grant he looked NOTHING like I expected. Garrett looks more like what I had in mind. J

Time Is On My Side.......I HOPE! Day: 19

So “time” is what we now deal with.  I asked today, “What is going to help Garrett’s small lungs?”  And the answer I get is, “Time.” 

He needs to eat and grow stronger, which is hard for him.  However eating and growing stronger is what needs to happen.  Garrett’s insides are not exactly in prime shape for eating.  His stomach and intestines lived in his chest for most of his life.  So they are not exactly sure what they are supposed to be doing.  Plus all CDH babies usually have pretty severe reflux, so spitting up is a common thing; which you don’t exactly want them doing when you are trying to get them to gain weight.   So it is kind of a perpetual cycle.  A cycle that will take a lot of TIME.  As for how much time, who knows?  It could be another month…….or three.  No telling.

One thing that is for sure, Garrett LOVES to be held by his mom.  He hates the CPAP.  Just as he starts to fall asleep in his isolette, he will wake up and grab at his nasal cannulas trying to pull them out.  He has royally scratched up his face and chest in his regular attempts at their removal.   When I hold him though he is out like a log.  If he starts to get mad, I will just rock a little harder and talk to him and he settles right back down.  They have been weaning his sedation drugs at a pretty good pace, so he is awake more and more.  He is up some of the time when I hold him and he just stares at me and does normal baby faces.  At times I do forget where we are.  For brief moments I am just a normal mom holding a normal baby.  Then one of his machines alarms or beeps and I am brought back to reality.  He is pretty immune to the sounds of his room at this point.

 All the nurses and doctors agree that he is a baby that thrives from being held.  He enjoys it; so do I.  I figure he is a baby that desperately needs time being just ‘held’.  Most babies just get bundled up and handed back to their mother, but not my Garrett.  From the moment he was born, all human contact has been bad.  He has had tubes in every orifice of his body, he has had IV’s/PICC Lines/Central Lines, he has had an operation to rearrange his major organs…..you get the idea……humans were not his friends.  So I want him to know we are not so bad, especially his mom.  So when I hold him it is all good stuff.  No needles.  No blood pressure cuff.  Just mom and Garrett and a boppy (and an occasional binky).  I think we both enjoy our time together.  The time does fly by when I am holding him.  Hours pass like minutes and another day is gone.    

Mother's Day - Day 18

        Not gonna lie, today was hard for me.  I felt like an animal in the wild that had lost a cub/pup/whatever offspring you want to input here.  Humans are too animals.  We have natural instincts.  At a mother’s day lunch today with my husband’s family, I felt as if part of me was missing.  It has been difficult, to say the least, the past 18 days.  I feel like there isn’t enough mom and wife to go around. L

            My heart hurts no matter where I am.  If I am at the hospital I miss home and vice versa.  With no signs of Garrett coming home anytime soon, I know the reality is I will have to deal with this for some time.  I am very tired.  I wake up in the middle of the night sweaty every night – not sure if it is hormones or stress or, most likely, both.

            I know I can handle this.  I have no choice.  I just think, no matter how strong one may be, we are only human.  I cannot help but feel a little jipped this mother’s day.  I saw many families with babies today.  I wanted mine there also.  I knew he was lying alone in his room hooked up to a million machines and drugs.  Not a happy thought for any mother.  So I drove myself to the hospital to sit with (and eventually hold) my baby.  I sit alone in his room tonight as I have done on so many others.  I wonder what the future will hold for him.  I hope he grows up to have an amazing life.  That will make all of this worth while.

A Step Backwards We Go. (Day 16)

When I arrived in Garrett’s room this morning………….there it was…………the ventilator.  However, upon closer inspection, I noticed there was no tube down his throat.  He did have on some massive looking nasal cannulas, much larger than before.  After tracking down a nurse to find out what the heck he was hooked up to, I discovered it is what is called CPAP (see-pap).

                CPAP is actually a step between the plain nasal cannulas with oxygen and being ventilated.  As Garrett’s mom, I knew he was struggling to breathe.  Each breath seemed more difficult than the last.  As hard as it was for me to accept it, I knew we needed to take a step backwards.  Garrett’s little lungs could just not handle breathing for his entire body on their own.  It pained me to know that he may need re-intubated, but it pained me more to watch him struggle so to breathe. 

He did do just fine respiration wise when I would hold him, but I cannot do that 24/7.  I did not realize we had an in-between step before re-intubating him.  That is what CPAP seems to be.  It delivers a little stronger pressure than just the nasal cannulas, yet is not as invasive as a ventilator. 

                Garrett is adjusting to it.  Though it irritates him, he seems to not have to struggle so to breathe.  So it is a very good thing.  Dr. Yang thinks we should leave him on the CPAP machine for about a week.  This will give him time to rest and allow us to work on upping his feedings.  I can still hold Garrett on CPAP, which I cannot do on the ventilator.  So let’s hope that this is as far backwards as we need to go.  He still breathes a little fast, but is a LOT LESS labored now……….aaaaaaahhhhhhhhhh.  A little peace of mind for mom.

Day 15 - 10:00 p.m.

              Today was overall a good day for us.  First of all, I had the chance to hold Garrett for hours today.  Good thing about this, besides the obvious just getting to hold him, is that when he is held by me his breathing and heart rates both slow down.  Which is very good because they are way too elevated the rest of the time.  Other fun part of today was that Grant got to meet Garrett for the first time.  There has been an RSV restriction on the NICU and children under 5 have not been allowed in until yesterday.  Grant was very well behaved and ecstatic to meet his baby brother.

                The bummer’s are that Garrett is still breathing very hard and also retaining a little too much fluid where his chest tube was.  So what does this mean?  As for the fluid, they may have to drain it with a needle or reinsert something for drainage.  As for the breathing……….unfortunately if it persists, he may have to be re-intubated at some point.  I am hoping we do not have to go there.  But if we do, we do.  Praying that we don’t though………..

                Since when I hold him his breathing really slows, I will be trying to hold him as much as possible now that I can.  Darn the luck on that one.  As soon as a put him back in his isolette today his respiration rate went WAY UP.  It amazes me that a mother can have that kind of effect on her infant.  The human body is an amazing thing.

Hello Baby Brother!

 I said HELLO Baby Brother!!!

 We had to wear masks when they changed Garrett's fluids.  Grant thought he hit the jackpot.

 Bye bye baby boy.......see you tomorrow!  Love, Mama

         

Garrett's First 2 Weeks

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So today Garrett is 2 weeks old.  Wow.  Time actually has flown by since we have been in the NICU.  It is stressful, but does seem to go by quickly.  Today we have 2 goals. 

1.       No spitting up from feedings (via tube fed).  Garrett needs to gain weight.  Right now his body is getting a workout from his breathing, literally.  He works VERY HARD to breathe.  He is maintaining his vitals great, but really has to work at it physically.   So we really need to get him feeding good to put some weight on him. 

2.      Removal of Chest Tube.  This will happen at some point today.  Not exactly sure when.  Someone from the OR will do it and they are pretty busy today.  However, it is one of the things on their to-do list.  The chest tube has been draining from the area where all Garrett’s organs were removed from during surgery. 

From Garrett’s heavy breathing his chest also has become concave in the area where there currently are no organs.  This is something that can happen with these babies because they have to breathe so hard.   Luckily it is only cosmetic and can correct itself over time.  It can also be corrected surgically when he is older (like high school) if it does not fix itself on its own.  I am glad it does not affect anything health wise, but it is sad to look at.

Oh so tired.

 The thing hanging off the bottom of the isolette is where the chest tube drains.  Hopefully this will be the last picture of it!

 Big stretcher.

Giving the Lungs a Workout

Here is a little clip of Garrett breathing away.  He bobs his head as he goes.  You can't see under his blankets, but it looks like a workout.  His little chest just pumps away a mile a minute.  It pumps so hard he does a little head bob with it.  That is what the video is showing.

Day 13 -- 10:30 a.m.

Garrett enjoys not being on the ventilator that is for sure (his mother also enjoys it not being in the room).  However he is ready for his chest tube to go I do believe.  That should happen tomorrow.  One the chest tube is out, I should be able to hold him for the first time J -- at 2 weeks old. 

                I told my parents I was really strict with NOT holding Grant when he slept.  I did not want him to get used to being held all the time.  So the moment he fell asleep I would stick him in his swing or something.  With Garrett I think it will be the complete opposite.  Once I DO finally get to hold him, I won’t want to put him down to make up for lost time.  I am picturing me caring him everywhere I go. 

                Today at 11:00 Garrett is taking a trip down to radiology to have his feeding tube placed where it needs to be.  I will just wait in his room.  No need for me to watch him be unhappy.  I want him to associate me with the times he is not being poked on.  They had to move him to a mobile isolette.  He actually slept through the whole transfer.  Good deal.  He also just got a little versed; which also helped I am sure.  Once the tube is in a good position they will try to resume some of his feedings.  Right now he is back to being fed intravenously. 

                Garrett now handles being touched a lot better.  I can hold his hand and rub his head until he falls asleep and his vitals all stay stable.  Ahhhh, the little things in life.