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!!!!!!

4 MONTHS!

This is so hard to start so I'll just jump right in...

The 4 month doctor appointment is this Friday so I'm estimating...

Cannon: About 13 1/2 pounds.  He's sleeping anywhere from 5-7 hour stretches at night.  He's goofy and silly already.  He loves sticking his tongue out and talking very loud.  He is so fun to hang out with and is a pretty independent baby so far.  I'm afraid he may have a mild case of reflux cause he isn't eating as well as he has and tends to fuss during feeds.  He eats anywhere from 24-28 ounces a day.

Cooper: About 10 1/2 pounds.  He's sleeping anywhere from 4-6 hour stretches at night.  He's becoming a happier baby now that we've switched formulas and his poo issues are almost gone.  Him and Mark like to growl back and forth at each other.  He is definitely my cuddle bug and loves sleeping on anyone's chest and hates sleeping alone.  He is eating anywhere from 18-24 ounces a day.

The boys have somewhat noticed each other.  Where they may not know what's going on, they know something else is there.  They will stare at each other and check each other out, it's pretty fun to watch.  Makes me think of all the things they will plot against mom and dad in the future.  They have also just recently decided that naps are overrated and they'd rather stay up and be cranky.  They used to fall asleep on their own and now I am needed to rock, bounce or do SOMETHING to get them to fall asleep and then heaven forbid I try to set them down cause they'll be up as soon as I do.  I'm being told this is their 4 month wakeful period where they begin to be more aware of their surroundings.  Makes sense but it still sucks, BAD. 

I just recently went back to work part time so we hired a nanny.  She's very sweet and so far she's doing well.  Cooper had an ear infection her first day with them so you can imagine what kind of day she had.  So for her not to go running for the hills was nice cause believe me, it's hard work.  So here I go again, into another adjustment period.  I was just getting used to staying home and it was time for me to go back. Of course I know my role will always be mom, now it's like, where and what's my routine?  Where did it go?

I've been struggling with all the baby care and all the crying and the unpredictable things babies bring to the world so I've reached out to family and they've responded perfectly.  I don't know where I'd be without them.  Life is definitely a little rough at times with two babies but at of the end, I wouldn't change a thing.  I love my life.  I love my family...

kisses for your face...

happy boy

Here's to 4 more months!  May they be filled with sleepful nights and happy smiley babies...

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

A Few Photo Moments

 I love my life

 Spit up much?

 Cousins

 Coop

<3

Coop's First Cranio Appointment

For some reason this post is hard to start.  I knew from day one when I saw Cooper's palate and gumline that he had a long road of surgeries ahead of him.  But what I knew and know even more is that my child is still a child and that he needs to be cared for and loved like every other child.  There was/is no time to dwell on the fact that it is harder for him to take a bottle then other babies and nursing is pretty much impossible from a nutrient stand point.  I look at him exactly the same as I do Cannon and both kids need to eat and grow.  So that has been my focus from day one.  With that being said, Cooper had his first appointment with his surgery team...

We met this team prenatally so I knew who were going to be seeing.  I absolutely love the team nurse Pam. She is has a ton of experience not only with cleft babies but is an OT and was a nurse in the NICU for many years.  Babies are her thing and you can tell in the way she talks about them.  She helped me understand what it is like for a baby with cleft palate to eat.  She explained it like this: It's the same as someone trying to drink out of a straw with a hole in it.  Makes sense.  Pam came in and I asked her how her holidays were.  She had let me know not very good because her daughter just had a stillbirth.  There was a knot in the cord and it was wrapped around the neck three times.  As soon as they cut the cord, the babies heart stopped beating.  My heart goes out to Pam and her daughter.  This story made it a little hard to focus on the appointment because I could tell Pam was hurting.  She went on to weigh Cooper.  According to their scale Cooper lost a few ounces since his January 3rd pediatrician appointment.  This was very surprising to me and disappointing.  I thought for sure he was getting bigger.  They asked how much and what he was eating and I let them know he was eating two ounces every 2.5-3 hours and that he was eating well.  Also, that I was feeling very confident in my feeding skills using his special bottle called the haberman (a $27 bottle)  The team informed me that they weren't concerned with his slight drop for two reasons, 1) Because it's a different scale then at the doctor's office, and 2) The amounts he eats seems more than enough.  But of course I was very bummed.  The plastic surgeon came in and went right to checking out his mouth.  He informed us he was going to talk around us for a minute while he discussed Cooper's palate with what looked like a young new doctor.  He did not start up a conversation with us and give us the low down on Cooper so I just started asking questions.  He let me know his palate was pretty wide but just like the lip he will be able to use what's in his mouth to pull everything together (so to speak).  Since Cooper was born at 34 weeks gestation his first surgery (the lip) will most likely be pushed back to April.  There is no "cookie-cutter" way about any cleft surgeries since they are all different cases, so for Cooper's case he just needs to get bigger before he can be operated on.  We will go back in March to check on his weight progress and depending on that appointment, they will schedule a date for his lip repair.  Most likely it will be towards the end of April.  He will also straighten out his nose.
I'm gonna not be PC for a moment and say doctors are weird.  I'm sorry if I'm offending any doctors but even Mark felt the appointment was just odd.  I guess I just expected Cooper to be assessed and then you get explained to regarding his situation and the plan of attack.  That didn't really happen but I still got those answers because I asked the right questions.  Cooper's palate may need more than one surgery to repair and he will need some sort of bone grafting once his teeth come in (or don't come in).  I also asked about speech issues and he again let me know it's just something we won't know until he starts talking.
I'm getting the hint that there's just not much of a way to be proactive and that these issues are going to just have to be dealt with as they come up.  Cooper's cleft is not as severe as others so for that I'm grateful, but it's also not the best case.

This makes me reflect for a minute.  I have never been one to sit back and wait, I've always gone after anything and everything I've wanted usually succeeding (partly because of dedication and drive, partly because I'm spoiled and tend to get what I want.)  I also enjoy having control.  More like, I can't stand NOT having control.  So here is God...giving me these obstacles out of my ordinary, testing my character, forcing me to learn, grow, and overcome.

Cooper's journey for Cooper will be a big part of shaping his character as he grows and goes through each surgery.  He won't know life any other way.  Cooper's journey for mom is a testing one and a learning one.  One that I think so far...I'm doing okay.  Like I said, Cooper is still a boy, a child, he will be treated just the same.

Here's to trusting in a higher power and the plan for all of us.

Coop-a-loop