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

One Month Old!!

We're One Month

The weeks are still flying by.  I'm going to try to recap each month of the boy's first year of life, let's hope I can keep up.

The boys spent the first 8 days of their lives in the NICU (Neonatal Intensive Care Unit).  These 8 days were the toughest on me emotionally so far.  Any woman who has experienced caring a child for 9 months can somewhat understand.   Most women expect to leave the hospital with baby/babies in arms and well, I didn't.  I left them with nurses.  I cried myself to sleep some of those nights, a few of them fighting with Mark cause I felt he did not and could not understand what I was going through.  He tried so hard to continue to explain that it was best for the boys, yada, yada but I knew all that already, I just wanted to be allowed to be sad.  I spent my days in the NICU with the nurses feeding the boys every three hours and pumping for them once done with the feedings.  One of the nurses who took great care of the boys name was Kim.  She was a pleasure to talk to.  I could feel her care and passion for her job and my sons.  While in the NICU, Cooper managed to pee on Kim before getting a bath.  It was pretty funny cause all Kim could do was stand there and let him finish peeing. Then to hear her say, "Ahh, Cooper, you peed on me!" in her Asian accent  was hilarious.  (Go ahead say it in your head, you'll chuckle)  But anyways while in the NICU, the boys spent 4 or 5 days in the isolettes (they would have been out sooner but they became jaundiced and needed to stay warm while they laid naked under the photo-therapy lights.)  They started off on IVs but both came off within 4 days. They both spent the first 6 days losing weight every night which is normal for newborn babies.  But both had gained by the 7th night.  Cannon took a few days to get the hang of sucking, swallowing, then breathing.  But he figured it out and became a great eater.  All both boys really needed to do was to grow and eat.  And that they did.

They came home on Friday December 17th and it was crazy!  It was raining as we tried to get the boys into the car quickly, by the time the boys finally got discharged it was almost time for them to eat again and by the time we got home they were more then ready to eat.  It was our first chaotic moment of many to come.
Like I said in the three week old update, the next few weeks were a blur.  My time has been filled with changing diapers, feeding babies, cleaning bottles and pumping breast milk every 3 hours!  Mark took the first week off work and has helped a ton (even though we don't see eye-to-eye) and then my mom was here with us the week after Christmas.  It was beyond awesome.  For Christmas we debated for days on whether or not to get out of the house to see family.  We ended up going to Mark's parents and the boys did great.  New Year's Eve we went and showed the boys off at my best friends Keri's parents house and New Years Day we were back at Mark's parents to hang and eat all day, again the boys are very content, and so far, they do great in cars.

Grandmas and boys on New Years Day 2011

Mom taking care of business

So month one was full of poop and milk and NO sleep.  Mark and I are running on fumes but we love our gifts from God.  I break down weeks by days and I break down days by 3 hour work sessions. And every morning I wake up looking forward to my cup of coffee and think to myself, it's a new day, I made it.  (Corny but it works for me)

As I sit on the couch pumping my boobs, writing this blog (Mark's out to go get us some McFlurries from McDonalds) it's easy to get distracted by watching the boys sleep in their bouncy seats.  Their little personalities are starting to come out and I am truly enjoying every minute  with them.

As of 1/3/11
Cannon: 7.1

Cannon Alex Johnson

Cooper: 5.11

Cooper Anthony Johnson

My goal by the end of month 2: To get a few full nights sleep.

To my boys:  Welcome home.  Your dad and I are so excited for our future together as a family.  We of course like excited young parents have big plans for you guys.  Our hope is that you will grow to have big plans for yourselves as well.  Keep growing strong. (Even if it means you have to wake up every 2-2.5 hours to eat.)  I know one day you'll let me sleep again (or buy me a Hawaii vacation)

<3,

Mom