Stanford Team Visit

This week we took another trip to Stanford where Henry had his big "team" check-up.  Basically, we had the chance to meet with every doctor and specialist that will be involved in the process throughout Henry's surgeries and yearly development.  They each were able to examine him for their own field, talk to us and guide us through our next steps.

Smiling at doctors!

Here is a little summary of what we learned:

• Plastic Surgery:  Dr. Khosla was very pleased with his lip repair scar and said it is healing wonderfully. The pink coloring of the scar will take a full year to fade.  
• Genetics: Henry's children will only have a 2-3% chance of also having a cleft lip or palate. This was great news and a big concern of our's explained.
• Dental & Orthodontics: The teeth that Henry already has (2 on bottom, 1 on top) look great. Children with clefts are more susceptible to weaker enamel, i.e. more prone to cavities so we have to do our best to keep the baby teeth in and strong for as long as possible.  There is already a lack of bone structure because of the cleft palate, so it's important to maintain what he has until his adult teeth grow in.  Once his adult teeth come in (8 or 9 years of age), he will have an oral surgery to fill in structure wherever it is still needed (bone will be taken from his hip for this) and possibly an artificial tooth if needed.  
• Speech Therapy: Henry is doing well with the baby noises that he is currently making.  As he gets older (in a few months), he may have trouble with some of the consonants, however this will be fixed with his palate repair.  The speech specialists will continue to monitor his development after the palate surgery as he begins to speak.
• Audiology: Henry went through a serious of hearing tests is a sound proof room with various speakers spread throughout.  He was very responsive to the loud noises however some of the softer, white noise, he was less reactionary toward.  He then took some hearing tests with sensors attached to the bone behind his ears and did very well.  She let us know that the fluid is making his hearing a little muffled so we need to be aware to talk a little louder than normal to him to ensure he gets proper stimulation.  Once the palate is repaired, the fluid will be gone and he will no longer have the muffled hearing.  
• ENT: After an ear exam, the ENT doctor confirmed exactly what the Audiologist told us - he has quiet a bit of fluid in both ears.  She explained the anatomy of the ear and because of the cleft palate, the muscle that usually controls the opening and closing of the eustachian tube is missing which causes fluid to get trapped behind the eardrum.  It doesn't cause any harm, except for the muffled noise.   

We also set a date and learned a lot more about his next surgery, the palate repair:

• Palate Surgery: Scheduled for April 4, 2014.  Dr. Khosla wanted the surgery to be right after his first birthday which is March 22.  This is to give as much time as possible from his first surgery, but before he begins talking. 
• About the surgery:  Dr. Khosla will remove some tissue of the mouth lining from the sides of the roof of the mouth to the center to close the cleft.  All of the tissue for the repair is there, it's just separated.  There are many layers of tissues so there are a lot of cuts that need to made and special techniques to ensure the muscles will be able perform properly for speech development.
• Recovery: The stitches will dissolve on their own in 2-3 weeks.  During this time, Henry will have to wear the arm restraints (No-No's) just as he did after his lip repair to make sure he doesn't touch the stitches.  He will only be able to eat soft/mashed foods with the restriction of spoons, straws, pacifiers, thumb sucking, etc.   

Here are some pictures of the last couple months!

5 months

                   

                    6 months

7 months

Halloween!

Post Operation Follow-up

We had our final follow-up appointment with Henry's surgeon, Dr. Khosla, yesterday at Stanford and pleased to report that he is doing amazing!  It's hard to believe that it has already been 7 weeks since his first surgery.  We are so thrilled with the outcome, however Dr. Khosla told us that over the next year things will improve even more significantly as his facial tissue continues to grow and settle out.

The appointment was also to remove the plastic stints from Henry's nose, which he has had in since surgery to help form the nostrils.  Henry never seemed to mind them but for us, it's nice to know he is now breathing freely!  

Other than that, everything else with his health is right on track as a 4 month old baby should be.  At his latest checkup with his pediatrician, we learned that he is now 16.7 pounds which is in the 95th percentile!  He is still doing great at eating, and now even able to drink out of a normal bottle and trying to hold it on his own!

Here are a few pictures of the few months progression:

Monthly Birthday Photos!

Holding his own bottle!

Snuggling with big brother, William!

At the doctor's office, right after his nose stints were removed!

Our next step is to go back to Stanford in November for a 3-4 hour clinic visit with the team of specialists that will take part in his next surgery for the cleft palate, inside his mouth.  From there we will learn the next surgery date, which will most likely be Feb/Mar of 2014.

As always, thanks for all the love and support!

A Succesful 1st Surgery!

Henry had his 1st surgery to repair his lip and nose on Friday, June 28th.  We are so happy to tell you that everything went perfectly and Henry has been such a little champ! 

 

Here is a brief recap of the past 48 hours...

At our hotel
 

Evening cruise in Palo Alto

The day before the surgery, we drove to Palo Alto and had a nice, relaxing evening. We even got to spend a little time by our hotel pool and a dinner walk downtown. 

 

Scott, Henry & Father Jones

 
 


On the morning of the surgery, we were very fortunate to have Father Vern Jones come

to our hotel room to give Henry his very

own blessing.  This was particularly special,

because Henry is now the 4th generation of family members to have know Father Jones, beginning with Kristin's nana.  He has been an Episcopal priest for 61 years and is very active in the Stanford community. 

 

Henry went in at noon, and the actual surgery took about 3 hours.  Following an anxious afternoon, Dr. Khosla came out to tell us he was very pleased with the outcome, calling the prognosis "great."  Soon after, we were able to go see Henry in the recovery room as he was waking up. 

 

His lip and nose were both repaired with remarkably only one incision, with the team creating a left nostril and pulling the lips together.  Henry's little face was swollen, but we were so happy with the incredible work they did!!  He will have plastic stints in his nose for 6 weeks to help keep the form of the nostrils.  The stitches and glue on his lip will dissolve on their own in about 10 days.  He also has little bands for his arms called "no no's" so he doesn't touch the stitches.  So far, he doesn't seem to mind them too much!

 

After recovery we were admitted in our overnight room.  The night after surgery was long as Henry was in noticeable pain and was trying to orient himself, just as expected after any procedure.  Thankfully, he took to his bottle almost right away, eating little by little and impressing the doctors and nurses (no surprise to us, the chunk is 15 lbs at 3 months)!  The day after his surgery, he is already looking more alert and able to handle the pain better with every hour. 

 

Hanging out with Dad in the hospital room

Taking a walk around our floor to get some fresh air

Because he resumed eating so well and began managing the pain without the IV, we were released from the hospital by noon the next day.  On our 4 hour drive home to Reno, Henry slept the entire way, not making one peep! 

 

A very warm welcome home from Noni and Aunt Pibby!
 

Little swollen Henry, happy to be home and in his swing!

We cannot begin to express our heartfelt gratitude to all of you!  You represent Henry's closest family and friends, and his biggest fans. You are his cheering section, and you are our support team. 

 

THANK YOU for your interest,

your time,

your genuine concern,

your letters, emails & phone calls, 

your prayers,

and especially your love

...they made all the difference in the world for Team Henry!

 

 

2 months!

It's hard to believe that Henry is already 2 months old!  Since the day he was born he has been a great eater, taking perfectly to his special bottle - and it shows.  At his 2 month check-up, he weighed 13.1 pounds (90th percentile) and measured at 26 inches (98th percentile).  This is outstanding news because the doctors wanted him to be 10 pounds for his first surgery - and he still has 3 more weeks!  This has been an incredible blessing, as some cleft palate babies have to be tube fed just to keep on weight.  

Henry's first surgery is set for June 28th and will repair his lip and nose, the external elements known as the cleft lip.  This surgery will not correct the palate. We have been told that this first surgery will take about 2-3 hours and we only have to stay in the hospital for one night.  We go in Friday morning and if everything goes according to plan, God willing, we will get to come home on Saturday!  

Today in the mail, we received word from our new insurance company that he has been APPROVED for surgery at the Lucile Packard Children's Hospital at Stanford!!!  We went through months of ups and downs, and were starting to be resigned to other options.  This is truly an answered prayer, thanks be to God!  

The past 2 months with this little guy in our lives has been nothing short of wonderful.  Just in the last couple weeks he has started to make a lot of little baby talk noises, becoming more aware and has even begun smiling a lot.  While his eyes started at a blue/grey color, they are now turning more brown, just like his big brother.  Speaking of, William continues to love him more and more everyday.  When we go in to pick William up from preschool, William is so proud to show off his baby brother to his friends and dotes on him with lots of kisses.  To this day, William has not said one word about Henry's lip or nose, even while most of his friends ask questions about Henry's "broken lip."  The older brother is doing a great job protecting his little brother!  

Here are a couple of our favorites from Henry's newborn pictures:

And a couple more highlights from the last 2 months:

Henry on his 1 month birthday (left) and 2 month birthday (right)

Hello world...it's me, Henry.

It's a Boy...Welcome Henry!

Welcome 

Michael "Henry" Whittemore 

Henry was born on March 22nd at 2:50 p.m, weighing 7 pounds, 12 ounces and 21.5 inches in length!

Just as we expected, Henry was born with a unilateral cleft lip and cleft palate.  What we didn't expect was a seven hour trip to the ICU because his umbilical cord became wrapped around his neck during birth.  Almost on cue, God was again providing us instant perspective.  "You don't have it so bad.  It could be a lot worse."  For some parents that day, their experience in the ICU was tragically worse.  Suddenly, the cleft lip and palate took an instant back seat.  Respiration and blood circulation quickly reminded us what was really important: fully functioning organs.  Thankfully, after some fluids, oxygen and a lot of TLC, Henry was released out at 10 pm, no worse for the wear.

As with any baby, but especially cleft babies, the chief concern is getting them to take nutrients right away.  Fortunately, he has been eating like a champ, taking to his bottle incredibly well and even trying to breast feed.  He gets a little frustrated with the breast feeding but is able to latch on for a few seconds at a time.  Amazingly, after 48 hours in the hospital, he had even gained weight!  When we checked out Sunday, he was 8 pounds 5 ounces!

We will be especially sensitive to his weight throughout this process, as the more he weighs the sooner he will be scheduled for the coming surgeries.  We head to Stanford Children's Hospital on Monday for the first surgical consultation.  We hope this meeting will provide us a solid blueprint for the coming months and years.  Even though the reality is "years," we are taking this one day at a time.        

William loving his new baby brother

We came home from the hospital on Sunday morning and pulled up the house to this very warm welcome!  Thanks Noni and Aunt Pibby!  

Cleft or no cleft, we recognize this amazing miracle and gift from God, and we are feeling incredibly thankful that the delivery went mostly without incident, and everyone is healthy!   

The finish line to a "normal" mouth may have just started...but we fully intend to enjoy every second of the journey with this little gift named Henry.  

Baby 2...A New Adventure

Hello Friends & Family!

As most of you already know, we found out at our 20 week ultrasound that our baby will be born with a cleft lip and cleft palate.  Since then, we have received an incredible amount of support, love and words of wisdom from everyone we have talked to and want to start by thanking you each and everyone one of you.  We really feel blessed to have such amazing people in our lives!  With that said, we have decided that this blog will be the best way to communicate to all of our friends and family through the birth, appointments, likely multiple surgeries and more.  We'll start this first post with a little background and where we are now...and then check back in about 3 weeks (baby's due date is March 18th) for another post after the baby is born!

What we know:
Through an ultrasound, our doctors were able to determine that the baby has a cleft lip and cleft palate.  Technology is pretty amazing!  We don't want to bore you with all the medical terms but if you are interested in learning more, visit The Cleft Palate Foundation.  There are a few different types of a cleft lip, and the doctors have determined that our baby has a left side unilateral cleft lip, which basically means that the skin from the lip to the nose on the left side of the baby's face is separated.  We won't know more about the cleft palate until the baby is born, but this is an opening on the roof of the baby's mouth where the two sides did not join together.  Good news is that both the cleft lip and palate are completely repairable by surgery!

We feel very blessed that based on all the current information we have, the baby is otherwise completely healthy.  Clefts can be related to additional genetic disorders, some of them very scary, so we had to have an amniocentesis to test all of the baby's chromosomes to rule out any abnormalities   Most of the time the cleft lip is an isolated condition but there is a 7-35% chance where other serious problems occur.  After a LONG 2 weeks of waiting for these results, we found out that everything else looks normal and healthy and of course, we couldn't be more happy about this!  Truly, thank God!

Cleft Lip

Cleft Palate

What we don't know:
The sex!  Somehow, through all the of the many ultrasounds and even driving around with a file the doctor said was "gender stamped," we have been able to keep the sex a secret!  Just the way we want it!

Our next steps:
We had a consultation at the Lucile Packard Children's Hospital at Stanford a couple weeks ago and have decided that would be our first choice for surgery.  We were very impressed with the center and it's staff and feel very comfortable with our next steps.  They have an entire center dedicated to cleft and craniofacial surgeries, you can check out by clicking here.

About 1-2 weeks after the baby is born we will take a day trip to the surgical center where the actual surgeon will have the chance to meet the baby and assess the cleft lip and palate in person.  From there, we will schedule the first surgery for the cleft lip which will most likely take place 2-3 months after the birth date.  The surgeons recommend waiting this period of time to ensure the baby's facial tissue has finished developing, which will help with long term results and to decrease scarring.  Then the baby will most likely have the second surgery for the cleft palate sometime between 6-18 months of age.  We really won't know more about the second surgery until after the first.

Stanford also has already supplied us with some special bottles we will use to feed the baby.  Basically, they have longer nipples than a regular bottle to help with adequate suction and avoid taking in too much air.

That's about it for now!  We can't believe this baby will be here in 3 weeks or less but of course we are so excited.  William is also thrilled to become a big brother - he told us he is excited to have the baby be his "neighbor" in the room next door.  His prediction is that the baby is going to be a girl and has picked out some interesting names, most of which are characters from Thomas the Train!  We'll see ;)

Thank you again for all the wonderful love and support!
Lots of love,
Kristin, Scott and William