Cooper's Lip Repair May 17th 2011

Cooper had his lip repair surgery on the 17th of May. 

The time leading UP to his surgery was almost more nerve-racking than anything.  It was all I could think about the week before.  Part of me didn't want his face to change.  I  have now spent 5 months with this little man that looks one way and now his entire look is going to change.  Selfish I know.  I of course also didn't want to see him in pain.  The fact that a little baby can't communicate is hard.  And it was...


We had to be at the hospital at 5:30am to be admitted.  His surgery started at 7:30am.  He wasn't allowed to have any formula past 1:00am so I woke him at 12:30am and fed him.  He wasn't allowed to have anything past 4:00am so I woke up at 3:30am and fed him pedialyte.  My best friend's younger sister Kimberly watched Cannon for us so we dropped him off with her at 5:00am.  I even felt sad leaving him.  I knew it was going to be a while before I saw Cannon again and that was hard.  But I knew he was in amazing hands and am forever grateful for Kimberly and all she's done.

Right away when Cooper was admitted he was getting fussy...He was getting hungry.  Keeping him calm was a challenge and I'm sure he felt my tension.  But I was able to get him back to sleep.  At 7:15 they came and took him back.  We were only allowed to walk him down the hall and kiss him goodbye.  We (me and Mark) kissed his sleeping face and thought I was going to lose it but I didn't.  We walked back down the hall hand in hand in silence.  Mark squeezed me and I quickly remembered I was not alone.  I thought that was gonna be the hardest part.  Boy was I wrong...

In the waiting room we sat.  We were told by the surgeon he would be done by 10:30-11:00am and that he would come out to get us right away.  Mark's parents came to sit with us along with his sister and brother in law and grandma.  My older sister also came.  The support and love was amazing.  But my nerves kept me looking at the clock.  10:30am rolled around and Mark and I are saying anytime now.  10:45...11:00am.  Not cool.  I look at Mark and I see his nervous energy has his leg going one hundred miles a minute.  (Not very often do I see that.)  At 11:15ish the Doctor came out.  Mark away asks how it went and he says great.  He let's us know that he was in fact tongue tied and it was pretty severe.  He also told us his nose took a little longer than he thought to straighten out.  I wasn't listening too hard cause I just wanted to see Cooper.  He took us back to the recovery area and there was Cooper laying on his back, knocked out and all red and blotchy.  Here is Cooper right after his surgery: (taken from my phone)

Mark and I were amazed with how good he looked.  Right away I thought he looked even more like Cannon.  One by one we brought family back to see him and once it was just me and Mark again Cooper decided to wake up.  He woke up LIVID.  The doctor told us he would but this was terrible.  I tried so hard to hold him to calm him down but I couldn't let his face touch anything and he was not feeling well AT ALL. (can you blame him?)  As his mom I felt helpless.  I was shushing him, bouncing him, just trying to hold him but nothing would work.  It didn't help that we didn't have our own room yet and recovery was this big area that was divided by curtains and there were a ton of patients recovering from their surgeries as well.  Part of me felt bad for them but I bigger part if me felt horrible for my son.  I felt like I did this to him, I put him through this.  As silly as it sounds and I know he would eventually choose this surgery for himself I still feel bad making this decision for such a small helpless child and then not being able to comfort him, ugh I felt like a failure. 

About an hour into recovery they transferred us to the pediatric floor and told us Cooper would be staying the night.  I was bummed.  I knew then I wouldn't be seeing Cannon anytime soon and that they also felt Cooper NEEDED to be there.  They gave him some more morphine and we got him calmed down in a bouncy seat in a hospital crib.  After a few hours we switched to tylenol with codine and that pretty much sedated Cooper for four hours at a time.  Each time we had to wake him to administer meds I changed him and tried to syringe feed him some pedialyte.  I sent Mark home that evening to stay with Cannon cause there was no where for him to sleep in the hospital anyways.

 We had visitors during the day...

Mommy and Daddy and Coop in the background.

The next morning the doctor stopped back by and was very surprised to see Cooper had not bruised at all.  He gave us the go-ahead to try to bottle feed while not allowing Cooper to use his lips too much.  So we went back to the haberman feeder where we can squeeze the formula into his mouth for him.  He also said we could leave whenever we felt comfortable. Right away I knew I wanted to get going.  I wanted to get Cooper in his environment and wanted to see my Cannon ball.  :)  The doc prescribed Cooper tylenol with codine to take home.

We got home by noon on Wednesday and my mom was watching Cannon for us and of course had cleaned our apartment and done our laundry (SCORE)!  I'm glad we brought him home, he seemed so much more comfortable in his own element. 

It's now day 10 and Cooper is still somewhat demanding and cranky.  If he's awake, he wants to be held, BUT he has to be moving while he's held.  That would be fine but he's a twin and has a brother that has needs too.  All week after the surgery family took days off to come and help.  They are a Godsend.  Amazing people...we have an amazing family.

Cannon!!!!!!

Cooper Stuff - Lip repair date set

Cooper's noises sound very different from Cannon's because of his cleft palate. This is the reason why timing of the palate repair is important. The palate needs to be repaired before babies start to speak. Because your palate (the roof of your mouth) is also your nose floor (and Cooper is missing part of his) he may sound nasally as he starts to talk. It also sounds gurgally, I'm not sure if that's cleft related or just him keeping formula in his mouth...

He brings joy to me every morning and frustration to me every evening...

The first surgery is set! May 17th he will get his lip repaired and his nose reworked. So many emotions, I'm happy for him, but am not looking forward to the discomfort the days after surgery will bring.

Tuesday and The Geneticist

We had another appointment today.  It was with the geneticist that we saw prenatally.  I really like her.  She wanted to see Cooper to check if there were any syndromes or disabilities that could be related to the cleft.  So she did some developmental exercises with him.  He was doing everything a 6 week old should do. (this is the boys' ADJUSTED age) and most things a 12 week old does (their ACTUAL age).  This is all do to his prematurity.  He does still clinch his fists pretty tight which is a newborn thing and he should have begun to relax his upper extremities by now so I have to work with him a bit.  I had also noticed he was developing a flat spot on his head last week and she showed me what I can do to help him NOT favor that side.  The Dr. was impressed with my intuitiveness and knowledge of child development (even thought that may have been my background- which was funny cause that's what I wanted to go into.)  It felt good to get that compliment but at the same time I thought to myself why wouldn't I learn about what my baby should and shouldn't be doing?  Same went along for the cleft talk...she was impressed by mine and Mark's involvement on cleft.  She said some parents still tend to be clueless, I thought that was interesting. 

She also informed us about our chances of having another baby with a cleft.  It increases 3-4%.  It will also increase for Cooper when he has children and possibly Cannon (more so if they are identical).  When Mark and I are ready to conceive again she let us know that I should (along with prenatals) start early on a folic acid.

I'm a believer that babies and children will do things in their own time and we need to be careful as to how far to push them... but if there are things that can help him succeed I will be all about providing that for him. 

The boys will be three months tomorrow, I'll get to that tomorrow...I never knew how much worrying a mother does about her children.  All parents want for their kids is the absolute best and we will do everything under the sun to make sure the best is provided. 

Cannon says hello

Sleep deprived mommy and daddy.

Ate us some meatloaf for dinner and time for me to hit the hay while daddy takes the 9:00 pm - 1:00 am shift.  Yes, we started shifts, and I LOVE it.

Cranio Appt #2

We met with Cooper's craniofacial team today and it looks like they're okay with setting a date for his lip repair.  I should be getting a phone call from the surgeon's scheduler within the next few days and we will set a date for the middle of April.  A few days prior to his surgery we'll go back in to check his weight again and check blood levels and make sure he is well enough to proceed. (If not it will be postponed)  The surgeon said he will most likely stay the night in the hospital just to be monitored. 

During his lip repair he will also get his nose straightened out.  The recovery period is 7-10 days.  Cooper will wear casts over his elbows so he can not touch his face.

I have some mixed emotions about it all. I like his face the way it is.  I hate holding his pacifier in his mouth in the middle of the night.  I don't want to see him in pain or an any discomfort.  I don't want to spend the night without him.  I don't want people to keep starring at him the way they do. 

I'm sure he'll do great, the kid got mine and Mark's spunk plus some more.  I know that none of this will hold him back from anything he wants to do, ever.  He is a little rockstar.

Cooper's Cleft Palate