Update on our little patient

Does this guy look like he just had a big surgery?

I can not believe that Parker's palate repair was over a week and a half ago!  The little guy has been so tough, and we were shocked at how well he handled the pain after the first day.  Since we have been home, we are still using pain medicine each day, alternating the tylenol/codeine and motrin.  I'm giving him less and less as time goes on.  However, our poor little guy started teething again this last weekend- perfect timing, right?  As though his mouth needed more discomfort!  His drooling got worse (hard to imagine), he wants to gum and chew even more than usual, and we can see two spots on his lower jaw where some buds are about to emerge.  Starting Saturday, he started to wake up every 2-3 hours for a few days, but we are starting to come out of that and get back on our regular routine.

I went looking for Parker the other day, and this is what I found- the 2 boys playing together!!

Parker loves his Honey

Debbie (Spencer's Mom) was so sweet to fly here on Friday to help out with Parker's recovery.  Fortunately- Parker was not nearly as bad as we had worried he would be.  Of course, she had to endure his teething period, but overall- he was still really enjoyable.  Sadly we had to take her to the airport yesterday- so sad to see her go!  I can't say enough how nice it was to have her help- even just leaving Parker with her for a couple hours to run errands and go to the grocery store.  I didn't realize how tired I was until I realized how I felt refreshed having a break here and there.  And it is such a treat for me to watch Parker be around
Debbie and our other parents.  I always hope and pray that he will have the joy of knowing his grandparents as well as I know mine.  It is such a special relationship.  And this coming weekend, my mom will be here, so we will have another fun visit!

Waiting to see Dr. Chen

back to real food- so exciting

We went back to Dr. Chen on Wednesday for our post-op follow-up.  I was really worried about what he would say because I was able to see a hole the size of a pencil eraser in his hard palate.  But Dr. Chen said everything looked great otherwise.  He thinks that the hole is just on the oral side (hopefully), and said it is possible that it could close on its own with time.  If it doesn't, or if the hole goes through the nasal side, it won't matter because he won't repair it until his next surgery in 5 years.  I felt a lot better after this report.  We got the go ahead to eat regular food, and we won't go back for a year.  It feels so strange to have all of this behind us- hallelujah we are done for a while!

Using the sippy cup for the first time.  We are trying to get away from using the Haberman, and transition to sippy cups after the surgery.  He doesn't quite know how to really suck well- He's never had to so far, but we are working on it.  On some of the cups, I've taken out the valve so that milk flows freely.  He's very messy for now.  I'm just trying one feeding a day with the cup, and the rest with the Haberman.  Eventually we'll drop the Haberman.

Did I mention he's teething?  He quickly lost interest in the milk (difficult to drink) and decided to chew the cup

MELT. MY. HEART!

I don't mean to minimize Parker's cleft lip and palate.  Obviously we have had to do a lot of extra things that most babies don't deal with in his first year.  But for something that caused so much anxiety to Spencer and me a year ago, we have realized that this defect is such a small thing.  We have a beautiful, thriving child who is the happiest little boy I've ever known.  He has overcome everything like a champ so far.  There are so many things that are more challenging and more difficult to overcome- the cleft was such a small thing in the great big scheme of things.  We have really grown throughout the experience, and in so many ways we have experienced so many blessings, answered prayers, support, and made new relationships with so many people we otherwise would not have had!

We are home!

Saying goodbye to our nurses and techs at the Children's Hospital.  What an incredible place!  We had fantastic care, and they do such a great job!  It makes me so proud to work for Palmetto Health!

When we met with Dr. Chen for appointments in preparation for the palate repair, he prepared us for a long, painful recovery.  One appointment he said we would be in the hospital probably 4 or 5 days, and that the issue would be Parker wanting to eat again due to the pain in his mouth.  He always reiterated that this surgery was "a really big deal," that he will "really, really hurt," and that it would be "pretty bad."  How reassuring, right?  We were hoping that we could go home by this Friday.  However, this precious little boy is constantly surprising me, and as I mentioned earlier, he didn't hesitate to take down some milk when it was presented!  In addition, his pain was well managed that second day with the PO medicine and I never had to request for the IV morphine.  When Dr. Chen rounded on us yesterday (Wednesday morning), he was very pleased and discharged us much earlier than originally expected!  He told me that he has had kids go up to 7 days without taking any food post surgery.  Parker- you are amazing!

Jack was thrilled to have us home- he jumped straight in the car and went for kisses on Parker

So happy to be home- clapping!

We had a great day at home!  Parker was thrilled as he crawled and pulled up nonstop around the house.  He also was very happy to see Jack, and there multiple attempts to stand up holding on to Jack, as well as trying to eat Jack's collar (I didn't say he is always brilliant).  We got to be outside for the first time in days, go on a couple walks, and not be restricted to the metal crib in the hospital room.  He got to take a bath in the tub with his toys.  In addition, I only gave his pain medication a couple of times- and it was only in trying to prevent breakthrough pain and not because he was upset.  This is one TOUGH kid!  Did I mention how raw his palate looks?

Anyhow- I can only give praise to the grace of God and his answering of so many prayers and requests.  He is so good to us, and I am constantly blown away by our many blessings.  We follow up with Dr. Chen next week to see how he is healing and to get the go ahead to eat real food again.  Go Parker Go!

Back in our chair for stories and cuddling before bed time.   By the way- as I write this, Parker has been asleep for 10 straight hours without waking up!  Thank you, Lord!

Day 2 Post-op

Parker shaking his maraca!

This girl does such a great job!  All of the
 patients loved music time!

What a difference a day makes.  Today was a really really good day.  Parker slept almost the entire night through, waking up only for assessments, vital signs, and pain medicine.  He woke up at 7am, and played all morning long.  Dr. Chen came in around 9 and was really happy with how great Parker seemed to feel and gave us the green light to start feeding him.  Then at 1030, we were invited to Music time down the hall.  Child Life has a great playroom with tons of toys, games, tables and chairs.  One of the Child Life employees played the guitar, and we sang songs for more than 30 minutes.  It was so much fun.  Everyone had an instrument to play.  Parker shook his maraca the whole time and clapped his hands on his own.  It was precious!

He didn't go down for a nap until 1145.  Friends stopped by with lunch, and Parker woke up after 2 hours of sleep to play.  We made a lot of laps around the unit with the toy car.  Parker was the biggest flirt with all the nurses smiling and clapping at them.  They loved it!

This evening, my friend Kala stopped by for a visit.  Then, Ms. Laura showed up.  He saw her, smiled really big and reached out for her.  She was so happy to see Parker, and he was clearly happy to see her.  Very sweet.  It melts my heart to know how lucky we are to have someone who truly loves our little boy be his caretaker when I work.

Overall, we are a different baby.  He took down almost 20oz of milk!  That's sometimes the amount he takes at home!  We also haven't required IV medication since about 4 am.  We are getting closer and closer to being able to go home!  

parker is constantly standing up in his crib and trying to play

yesterday, Happy Wheels, a local nonprofit, came by so we could pick out a new book for Parker to keep

"come on, Mom, let me out of here!"  painkillers and "no-nos" can't slow this boy down

Palate Repair and Bilateral Myringotomy with Tubes

Happy boy in his hospital gown!  

Childlife had all kinds of toys and such for us to play as we waited to go back

Yesterday was a very big day for Team Robinson!  We woke Parker up at 5am to come to the hospital for surgery.  He was happy as can be as we got him ready, clapped and giggled on the ride to the hospital, and laughed and played and flirted with the nurses in the prep area.  It was really sweet but I felt guilty knowing what was coming.

Making laps- he kept his hands at 10 and 2- loved the car!

Our favorite CRNA, Beth, came and made us feel so comfortable.  We knew Parker would be well-cared for.  Dr. Garner (ENT) came to see us, and he placed his hands on all 3 of us and said a touching prayer before surgery.  Dr. Chen came to check on us.  We felt much more prepared this time around, and definitely more at ease.

Dr. Garner had his tubes in place in less than 10 minutes.  Then Dr. Chen operated for a little over 2 hours.  When he came to update us, he said everything went really well.  Again, my summary is very oversimplified, but he explained that he had to reconstruct the muscles of the soft palate to run laterally instead of anterior/posterior.  Then on the hard palate, it is made of layers of bone, muscle, and mucosa.  He said the nasal side (I assume the superior aspect) "came together beautifully." This is really important to keep from having fistulas or open passages from occurring.  The oral (or inferior) lining went well too but is very raw for now.

In PACU- Parker finally took a mini nap on me.  He was an unhappy little boy

In our room- he finally wore down and took a nap- the blue thing is one of his "no-nos" that he has to wear on both arms to protect himself from putting his hands in his mouth.  He really doesn't seem to mind them.

As soon as I got to PACU, he was very fussy, whiny and whimpering.  It lasted like this until about 7pm.  Long day needless to say.  It is beyond heartbreaking to watch your baby in agony.  But by evening, all of a sudden he was awake, comfortable, and ready to play!  We kept prn pain meds on board round the clock and I think it really helped.

We actually slept pretty well last night.  I have to say, there are times in life where you know the arms of the Lord are wrapped around you and you can sense prayer lifted on your behalf.
Yesterday was one of those days!  We can't thank all of you enough for your love and prayer.
More to come!

A little swollen, and as you can see, we had a lot of bloody drainage from his nose and mouth.  

Parker's Next Surgery

we love to rip the paper on the table at Dr. Painter's office

We have been spending a lot of time at doctor's offices lately.  Monday, September 10th is the day of Parker's second surgery- his palate repair.  I keep getting asked how nervous I am, or am I really anxious about it?  Of course, ask me on Monday and you will get a different answer, but to tell you the truth, I really have a peace about it all.  Parker has to have his palate repaired, it's inevitable.  If I am anxious, it's only just for the day to get here and have it behind us.

I have to work hard to keep him on the table now

At Parker's 6 month appointment with Dr. Painter (pediatrician), he found pus behind both ears.  Parker was really happy, has never had a fever, and never made us think a thing was wrong.  Round 1 antibiotics.  We followed up a month later to see how he looked.  Fluid behind both ears.  Again- asymptomatic, happy little man.  Round 2 antibiotics.  Dr. Painter talked with Dr. Chen (surgeon) and decided we needed to see an ENT.

We went to see Dr. Garner (ENT) 2 weeks ago, and I really really liked him a lot.  He is actually from Arkansas, and we hit it off really well.  Parker loved being held by him (he's really tall) and was entertained by his deep voice and stethescope.  Dr. Garner said "hands down" Parker needs tubes placed.  I knew from my research a long time ago that it is extremely common for cleft palate babies to require tubes at their 2nd surgery.  I just didn't understand why.

I know I am oversimplifying this, but basically Dr. Garner explained that for the normal person- we use our palate muscles to drain fluid from our ears, especially with swallowing.  Clearly, Parker's anatomy and musculature is different and therefore insufficient at this.  The way to correct it is to have palate surgery but it takes at least 6-12 months for the muscles to then work properly to drain his ears.  This is why Parker has a high risk of ear infections, hearing problems, and even hearing loss.  Therefore- tubes are essential.  End of story.  At least he can do it at the same time as Parker's other surgery!

waiting to see Dr. Chen

He also wanted to be proactive and have us do a formal hearing test so that we have a baseline for him in case we run into hearing issues in the future.  We did the test this week, and apparently everything looked like he was doing well, but he definitely has fluid behind both ears still.  His eardrums move with vibration, but not as much as they would like.  We'll get more feedback on this later.

We also saw Dr. Chen for a follow-up before surgery.  He actually said the opening in his palate has narrowed, and that can happen sometimes as babies grow.  What a blessing!  The surgery will start around 7:30am, probably last about 2 hours and we should expect to be in the hospital for about 4 days.  Our biggest concern will be pain control, and for Parker to start taking clear liquids.  Apparently he won't want anything in his mouth for a while because of pain.  He'll be on IV fluids for a few days, followed by a week or two of clear liquids as his mouth heals.

So, now we are just preparing for our next step in this journey.  Parker has exceeded all of our expectations from day one.  I know he will handle this surgery well, and I just pray for great pain management, fast healing, and no complications from the procedure.  I also pray that we can be rested, give him plenty of comfort and support, and meet his needs.    Thanks for your prayers and thoughts for our sweet boy.