Thankful for

A-Mazing!

Thursday was an amazing day.  There is no other word for it.  I started my day off at 0430 when Graham woke up with his NAM hanging off his face and wanting to eat.  While feeding him I grabbed my phone and found the text from one of my besties.  Her water had finally broke and she was headed to the hospital... only 9 days late!  That is when I knew it was going to be an amazing day.  Graham was going to get his new smile and his best bud, Matthew, was soon to be entering the world!

After feeding him I taped up the NAM for what would be the last time.  There was something a bit sad about it.  What am I going to do with all my supplies, my nifty little box and my rubber band block?  Into the keepsake box they go.  Graham went back to sleep and I headed to bed for a few more z's before all the excitement began.

The morning was like any other.  We got the boys ready, Tyler headed off to school and we dropped Alex off.  Dan and I requested to have Graham baptized before his surgery so Grandma Jill, Dan, my mom and dad and I headed up to church.  Denny, our Deacon, preformed the most amazing and meaningful ceremony.  Although we knew everything was going to be alright, it put our minds at ease.

We checked into the hospital at 1245 and by this time Graham was getting ready to eat.  It was going to be a long day.
The nurses took him back about 1:45p and there we were... all alone and empty-handed.  I missed him already.  Although I trusted these people with all my heart, I still worried.
Worry we did for the next 2 hours.  We paced, we drank coffee, we talked, we updated the blog and we hugged.



Finally the call came.  The nurse updated us.  Things were going well, so well that they were going to be able to do the GPP procedure.  But, that meant another 1-2 hours without my baby.  Ugh!
So the waiting continued.
Five-thirty rolled around and what was supposed to be a 1.5-2 hour surgery had turned into a 4 hour surgery.  Dan and I had never moved so fast as when we heard that beeper go off.
Dr. Hopper met us and filled us in on the surgery.  I heard very little of what he said.  I was more interested in seeing my little boy, scooping him up and never letting him go.  After getting the update we headed to the desk to get our room number.  That's when they asked us if we would like to go see Graham in recovery.  A prior co-worker of mine was caring for him in the PACU and bent the rules a bit. I immediately said yes!  Dan was a little more hesitant.  He chose to wait and meet us at the room.  I headed back to the recovery room not knowing the reaction I was going to have when seeing Graham's new smile.
At our pre-op appointment Dr. Hopper warned us that Graham's new smile would take some getting used to.  We fell in love with Graham just the way he was and now he was going to be different.  I approached his bed and there he was, laying peacefully in his crib.  But there was one problem... he didn't look like my baby.  He was swollen and so pale.  His tell tale lip was gone and in it's place was a perfect little pout.  Although, I knew that this was indeed my little boy, he was changed.  I didn't cry and I am not quite sure why.  I had all the emotions but they were trapped inside.  All I could do was stare at him, kiss him and tell him mommy was there.  The last nine months of worry, tears, taping, NAM, it was all over and my already perfect little boy was even more perfect.  I scooped him up and just stared.  He was sleepy, very sleepy.  The anesthesiologist was hesitant to let him go to the floor with a respiratory rate of 13, so there we sat.



After about 30 minutes we decided that although he was not waking up (he had gotten a generous does of morphine on the way out of surgery), his sats and breathing were acceptable.  I got to carry him.  Walking into the room, Dan approached us hesitantly.  He took one glance and I have never seen such amazement in his eyes.  I have never seen Dan cry, but this is certainly the closest I have ever seen him.    I laid our sleeping baby in his crib and we all just stared in amazement.



Graham slept.  And slept. And slept.  I requested tylenol to be started, knowing that when he did wake up, it was going to be with a vengeance.   That's when the nurse walked in with a syringe of tylenol.  I wasn't quite sure who he was going to give that to since the little baby sleeping in this bed was most certainly not going to be awake enough to take anything by mouth.  I politely requested a rectal dose.  Two and a half hours later we finally got the rectal dose and all was good.







The visitors came and went and Graham slept.  That morphine was good stuff!  Until 1230 am that is... he woke up and he was not happy.  We repeated the dose of tylenol, started some pedialyte (with a red rubber catheter?) but he was not such a fan.  After about 30 minutes of crying we gave him a dose of morphine.  Ahh, comfort at last.  A couple hours later we started him on scheduled Tylenol and Oxycontin which seemed to be a good combination for him.  Then we slept.
4 am came around and he was awake and wanting nothing to do with the pedialyte.  I "told" the nurse I was going to nurse him.  After a brief moment of hesitation he latched on and went to town.  Not sure it was so much nursing as pacifying, but nonetheless he was content.
The next morning we were up and going with morning rounds at about 7:15 am.  Graham was happy, smiling, cooing and watching mickey mouse clubhouse.  Graham has amazed me through every step of this journey and today was no different.  As long as we kept on top of his pain he was a happy little camper.  Plastic surgery was very pleased with his progress and let us go home at about 2 pm.  Walking out of the hospital, Dan and I both agreed it felt like we were coming home with a new baby.  It was like a replay of the day we brought him home after his birth.  The joy and excitement, it was all there.



This journey has been one of discovery for me.  I have a whole new appreciation for the families of the patients that I care for and I know my nursing care will be forever changed.  I know this surgery, in the eyes of medical professionals, was minor.  I have struggled with this the whole time.  I care for babies that undergo open heart surgery and transplants... these are HUGE.  Our little guy was going through a routine cleft lip repair.  Seems simple, but to us this was huge.  To us, this was our baby going through months of discomfort and then surgery.  To us, this was not a simple, routine lip repair.  It was our baby being put under anesthesia, intubated, and enduring a four hour surgical procedure.  Anyone else that has gone through this knows that, although it may be routine, it is a BIG deal as parents.
I will forever hold the doctors, hygienists and nurses that care for Graham in our hearts.  They are amazing.  They gave my baby the most beautiful smile, a smile that he will wear for the rest of his life.









Through this journey we have had the most amazing support.  From Nana and Boppa's willingness to help us with childcare, join us for doctor's appointments and wait with us during surgery to Grandma's travels north for the big day we couldn't be more grateful.  We couldn't have done it without you guys.  To all the family and friends that have been there for us every step of the way and put up with our chaos, made us meals and took me for pedicures, thank you.  We couldn't have done it without you either.  And lastly to all those that prayed for our little guy.  I can safely say all our prayers were answered.  Thank you.
From the bottom of our hearts... THANK YOU!

Update...

This is officially going to be the longest I have ever been away from him.

We got an update and things are going well.  They have, however, decided that Graham is great candidate for the GPP.  Therefore, it is going to be another 2 hours. 

The waiting continues.  The hardest thing I have ever had to do.

I can't wait to squeeze that little guy.

September 23, 2011
Sorry for the delay in updates.  Graham got out of surgery about 530p last night.  He did great, especially after we got his pain under control!  I am working on a post complete with pictures.  But know, until then, he is doing better than we could have ever imagined.  

In the OR

Well, it is 1:52pm and our little man is off.  

Please keep him in your prayers.

Pre-op

Today was our much anticipated pre-op appointment.  It was a long day but we made it.  I was so glad that Dan was able to make it to this appointment.  First off we met with the NP in the PASS clinic (anesthesia).  They weighed Graham in at 12 pounds 6 ounces and 23 inches long.  Not a whole lot of info there besides telling us we can't feed him 4 hours before surgery.  When is surgery you ask... we don't know.  Well, we know it is thursday but we don't get a time until wednesday sometime.  Ugh!

Next up was the craniofacial plastic surgery clan.  Doctor Hopper explained the procedure and we signed the consent.  We are hopeful that he will be able to do a procedure called GPP, minimizing the orthodontic surgery Graham may need in the future.  There is a 50/50 chance that it would work and he would not need bone grafting at a later age.  Graham is also tongue tied so we opted to have his frenulum clipped during the surgery.  G put on a great show for the group.  He was smiling, cooing and giggling the entire time Dr. Hopper was talking.  Dr. Kapadia even stopped in to say hi.  As I have said before, we are SO lucky to have such wonderful and caring people taking care of our little guy.  Every one reassured us that it is normal to feel hesitant and worried.  This little face that we have loved for the past 3 months is going to change and it is ok to be scared of that.  Everyone told me when we found out, by the time the surgery date rolls around you won't even want to do it because the cleft will be part of him, part of who he is.  I didn't believe them.  I was wrong.
  

Last was the appointment with our nurse and social worker.  During this time they did the preliminary admit questionnaire.  It was so odd to be the person answering the questions instead of the person asking them.  I could have given her all the answers without hearing any of the questions.  It was during this time that I reminded myself, I am the mom, not the nurse.  At times I have to pull back and let go.  I need to be his mom.  I need to kiss him, hug him and hold him and leave the rest to the great people we have taking care of us.  I need to trust in them.  

So now we wait.  We wait for thursday...  The day we have been looking forward to since that single appointment in January when we found out our little boy would be born with a cleft. 

 Somehow, right now, I am not so much looking forward to it, but dreading it.  

We will see how I feel when it gets here.

What a difference 98 days has made!

LIttle Lucy-Loo

Last weekend I got the pleasure of playing with my friend's little girl, Lucy.  Of course I always jump at the chance to take care of cute little girls.  Gotta get my fix somewhere.  Lucy is the most photogenic little gal.  I have been taking her pictures since the very first days of her life.  The second the camera comes out she is all smiles.  

Point proven!

Wendy, anytime you need a break Alex and I are always willing to play with Lucy!

We're gonna miss them!

Graham had his last visit with in the Dental Clinic on thursday.  Dr. K was not wanting to change anything with surgery right around the corner.  Graham did great and we even snapped a few pictures with our dental clinic posse.  I think Dr. K was glad to see us graduating.  Graham is getting so big that he is able to kick Dr. K in the face while he is trying to look at his cleft.  It's a far cry from the little 3 week old that we brought in that very first time.

Our life for the last 3 months has been full of doctors visits, dental visits, NAM, tape and anxiety.  All that is about to end, but there is a part of me that fears I am going to miss it.  It has become our normal.  The doctors, nurses and dental assistants have become our family.  I am going to miss it when it's gone.  Don't get me wrong, we will continue to be seen in the craniofacial clinic, but not as much as we have been there in the last 3 months.  I am sentimental like that.  I miss my prenatal visits too.  There is just something about the friendships that you make there during such a exciting/stressful time of your life.  Then one day it is just done.  

We are so thankful that these people have been brought into our lives.  I am sure we will go back and visit them for years to come.  

Thank you to the Dr. Kapadia and the Seattle Children's Dental Clinic for all you have done.  We can't thank you enough for caring for our Graham like he is your own!

Yesterday sucked!

I am not going to lie, yesterday sucked.  This little dude tested my every last ounce of patience.

It was one of those days that I wanted to be anything but a parent because I obviously wasn't doing a great job at it.  One of those days where I would have given my child to anyone on the street that asked for him.  Not really, but I would definitely think about it if approached.  It was one of those days that I had to put myself in timeout.  It was one of those days that I am definitely not proud of.
Today is a new day.
It can only get better... right?!!

{three months}

Graham baby, you are three months old!  I can hardly believe it.  You continue to be such a happy baby!  You have developed your own schedule and it is your way or the highway.  You wake up around 7, nap from 9-11 (when we are home), then again from 1-2ish and once more in the evening for about 1-2 hours.  You go to bed at around 9 depending on your evening nap.  You tend to wake up once at night, sometimes you eat and other times I can get you back to sleep without eating.  We are looking forward to getting your room finished so you can have your own space.

You love your binky, but will only take it with your NAM in.  I am interested to see if you take to it after surgery or not.  You are all about your hands, so maybe you will be a thumb sucker.
You are getting squishy and I love it.  While we were in visiting work I threw you on the scale.  Clothed, with a soaking diaper you were 12.5 pounds!  I love squeezing your chubby little legs and kissing your chubby little cheeks!

The date of your surgery is nearing and although I am not eager to hand my little baby over in complete trust, I am excited to get this done.  I am excited to see your beautiful face without tape all over it.  To see your full smile without your cheeks being squished together.   7 days and counting.

I love you, love bug!

NAM week 6

Graham had his normal thursday clinic visit.  As usual, he is doing awesome.  His alveolus and nose are responding so well to the molding.  Dr. K is just making some very minor changes, but other than that he is ready to go for surgery in 12 DAYS!  I feel so fortunate that this process has gone so well for Graham.  I have read many a blogs that the babies just didn't tolerate the NAM and it was months of agony for both the parents and the baby.  There have been times when I wanted to give up, when I wanted the through the NAM out the window.  Luckily, those moments have been few and far between.  Overall it has been a tolerable experience and Graham has amazed me every step of the way.  

However, as tolerable as it may have been Graham says he is done!
This is how I found him when we got up this morning...



and he was so proud of himself!



I think he is D-O-N-E!

My First Grader

Well, the first week is over and we are back in the swing of things... kind of.

It's still not easy to get up and going, but we're getting there.  And the homework thing, well, we're getting there too.  

Tyler is enjoying school and comes home with a huge smile every day.  So far he has played with Colin every day on the playground, apparently dumped his "girlfriend" (I'm not sure she even knew they were "dating" or that they broke up) and learned the letter H.  That's about as much as I have gotten from him.

Dan and I are still in shock that we are actually the parents of a first grader.

Par-tay!

A few weeks ago I was enlisted to take photos of a friends ridiculously cute little girl and her ridiculously cute birthday party.  How could I pass up the chance to take pictures of pink tu-tu's, ladybugs and the cutest little girl ever.  Fellas, stay back, she's taken by none other than Alexander.  They affectionately refer to each other as Boyfriend Alex and Girlfriend Erin.

Thanks Shannon and Todd, I had a blast!

12 weeks... for real this time!

Graham Cracker is really 12 weeks old this week!  He is growing so fast it seems.  I can really see that he is starting to fill out and get some chub.  It doesn't surprise with as much as he has been wanting to eat.  These days he is eating just about every 2-3 hours during the day and waking 1-2 times at night with the occasional sleep through the night.
He giggles like a little school girl and I love it!  He thinks it is especially funny when I play patty cake with him.  He is the happiest little guy despite all he has going on.  He amazes me with his resilience.
Graham has gotten himself into quite the little routine, which is great.  The only downside is that he is pretty set on it.  He loves his naps and will sleep for 2-3 hours, 3 times a day... IF he is swaddled, with his binky and in HIS bed.  He will take cat naps in his car seat but it doesn't do the trick for him.  He is a fussy guy if he doesn't get his routine.  I am a little nervous to see what this fall is going to bring when we are having to tote Tyler around to and from school and 2 soccer teams practices and games.
This week Graham is all about his hands.  He has learned to bring them together in front of him and every once in awhile can squeeze them under his NAM and into his mouth.  I am wondering if he may be a thumb sucker after his surgery.
The count down is on.  Only 17 days until surgery.  My fear is slowly being replaced with excitement.  I am excited to see his little face, kiss his chubby cheeks.  I eager to not have to listen to him cry when I have to pin him down to tape up his face.  I am anxious to give his little face a break.  Most of all I am ready to not have the stares anymore.  I don't want to have to explain anymore why my little baby has tape all over his face.  I am excited for him!
At our dental appointment Dr. K continues to be amazed with his progress and how much we have been able to do in such a short time.  He credits me and my meticulous taping.  I am not so sure that is it, but I'll take it.  There is a small part of me that will miss our weekly visits with the dental group.  Dr. K, Sam and all the other assistants are like family now.  They have helped guide us through one of the toughest things our family has ever faced.  I will forever remember them and what they did for our little boy.  

What is old?

The other day I had a conversation with Tyler that went a little like this...

T:  Mom, how old do you have to be to go in that restaurant?

Me:  21.  I guess I can't go in, I'm not old enough.

T: Moooommm, you're 31, you can go.

Me:  Oh yeah, I forgot, I am old.

T:  You're not old mom.  You're right in the middle.  You're perfect.

Me:  What do you think is old Ty?

T:  Um, maybe like somewhere in the 40's, and you're only 31.

Me:  What is young?

T:  Like maybe 20's.  (pause)  Mom, I wish we could stay one age forever.

Me:  Yes, that would be pretty cool huh?  I think I would want to be 27.  What about you?

T:  Um, I think 9.

Oh, little man.  Just you wait!  

I love this bug!