Our road ahead....

Many have asked about the number of surgeries Ryder will have to undergo throughout his lifetime. Since we just met with the craniofacial panel to review this very topic, here are a list of his surgeries and their prospective ages:

1.) Lip repair - 2 to 4 months of age

2.) Palate repair - 1 year

3.) Cartilage transplant from his rib to his nose  - 4 to 5 years of age

4.) Bone graft from his hip to his gum line - 8 to 10 years of age

5.) Palate repair (to fix any holes that may have formed - any time after his initial surgery and most clefties have their palate repaired at least 2 to 3 times post initial surgery) 

6.) Orthdontal surgery - breaking of the jaw line for proper alignment, dental implants etc., - beginning at age 8 through 18 

Not to mention the numerous sets of ear tubes he'll have to have replaced every 6 months to a year until he's a young teenager. 

As I sat in the room yesterday and doctor after doctor came in, I started to become overhwlemed and I could feel my eyes start to fill with tears but I reminded myself.....God has a plan.

One of the many things I've learned throughout this journey is to count my blessings. To try and focus on the blessings in my life instead of the trails or storms I'm currently facing. It was no accident that the Happy New Year cards we sent out in January of this year, announcing our pregnancy, had "Count your blessings this New Year and always" written above Ryder's 12 week ultrasound photo - before we even knew of his cleft diagnosis. 

Apart from the surgery summary listed above, the following is a brief synopsis of Ryder's panel appointment from yesterday:

• Ryder needs ear tubes as fluid has already started to build up in his ears - more so in his right ear than his left but nevertheless he needs them put in within the next couple of weeks. We have a follow up appointment with the ENT doctor to schedule this procedure.  I asked the doctor how ear tubes are placed and he said they go in through the ear hole with mini-instruments.  I immediately pictured a game of Operation. I was never any good at this game so it's a good thing I didn't become an ENT doctor. 

• Ryder had a hearing test conducted and looks like his right ear has some current hearing loss which the ear tubes should help with after they are placed. 

• The ENT said Ryder has hairy eardrums - I thought this was funny! Maybe that's the Mexican in him? 

• Ryder will have his very first speech therapy appointment 6 weeks after his lip repair - so sometime in November. How cute is that? Speech therapy at 4 months old! Who says babies can't talk?

• Ryder weighs 10lbs 10oz and is 22 inches long. He's in the 16% percentile  for his weight so momma has some fattening up to do on this baby! If only I could tear off my post-pregnancy weight and somehow put it on him? Hmmmm....how awesome would that be? Some doctor needs to invent that procedure! We can send man to the moon but not transfer body fat? Come on now! 

• Ryder will have to begin his orthodontist work at about 2 years of age when his teeth start to come in - a cleft babies mouth is full of surprises as teeth start to form. Because of Ryder's gum line being affected his teeth will come in differently than a normal baby's teeth. He may be missing some teeth or teeth will start to overlap so we'll see what kind of surprises we get with Ryder! 

• Ryder will definitely need that bone graft around age 8 but the ENT doctor said that medical advances may eliminate the need to transfer bone from his hip to his gum line. There are trials with some sort of protein drops that help grow bone. These drops are still being explored but it may be available by the time Ryder is of age. 

• Ryder's heart, lungs and basically everything else look strong and healthy! Hooray! Good news finally!

Yesterday's appointment lasted 3 1/2 hours (poor baby!) but we are so fortunate to have met with a panel of doctors who are taking a proactive approach to Ryder's health. They helped us to further understand the road ahead and answered many of our questions! 

A HUGE thank you to my mom and dad who joined us for the appointment - it helps to have another set of ears during appointments like this. As so much information is poured onto you one starts to tune everything out because it begins to overwhelm you. Having another set of ears to re-explain everything to us really helps! Mom and Dad are a part of my blessings that I count twice! They've been so loving and encouraging throughout this journey.  They've picked us up off the ground when the weight of this journey has knocked us down. 

For anyone who might be curious, here are some photos I took of the inside of Ryder's mouth a few weeks ago. 

Here are some other photos from the week - I just adore his little hands!  Staring at his little hands (all 10 fingers and all 10 toes) reminds me of how perfectly he was created. He may have some bumps in the road ahead but he was perfectly formed in my womb (cleft and all). I'm confident God will use Ryder's story in a powerful way as he continues to grow. It's a part of his testimony! I can already see how God has used his story to not only touch others but to teach me life lessons that I may not have leaned otherwise and for this, I am thankful! 

First tooth and big appointment!

On August 20th Ryder had his first tooth pulled. He had a tooth growing out of his cleft - as if this poor baby didn't have enough to deal with.  While he was in the NICU we noticed it and we saw a pediatric dentist the day following his discharge and that dentist said it wasn't a tooth. I'm convinced that dentist wasn't familiar with cleft babies and didn't realize it was one, so when we saw another dentist in mid-August he said it was a tooth and pulled it right there and then. Thank the Lord my mom was with us during this appointment because she held him as they pulled it.  The doctor pulled it immediately, no numbing medicine, no prep, he just pushed back the gum line on the cleft and yanked it! Ryder did incredibly well - he screamed at first and cried for about 30 seconds while I, on the other hand, cried for the rest of the day. 

We are asking for specific prayers for Sept 18 as this is the day we meet with a panel of doctors. This panel appointment will happen annually and the same doctors will see Ryder to keep track of his progress and how he's developing  (speech pathologist, prosthodontist, ENT doctor, feeding specialist, plastic surgeon, social worker, dentist, etc.,) Our appointment is at 4pm at CHOC of Orange and we basically sit in a room as doctor after doctor come and inspect Ryder (another day of poking and prodding). Ryder will need ear tubes very soon and I can already tell that his ears bother him. Ear tubes are common in children and even more common in cleft babies aka "clefties" as the world of cleft mommies like to call them. Clefties need ear tubes to help with fluid developing in their ears.  My guess is they'll want to insert ear tubes within the next couple of weeks but we won't know until our panel appointment and....another day of poking and prodding - he'll have to be put to sleep for this but from what I've heard it's a pretty quick procedure and it's completed within 30 minutes.  Pray for mommy as I'm sure she's going to do most of the crying on this day. 

Here are some snapshots of our little guy - I take a million pictures a day. I just can't help it - I'm in love with every inch of this baby boy - cleft and all - I think he's the cutest baby out there! 

Every smile has a story...

 

A huge thank you to my sister who has done an incredible job of updating our journey with everyone! I wanted to write a post to personally thank everyone for all of the texts, phone calls, meals and visits. I have been overwhelmed and amazed at the outpouring of love, support and encouragement we have received from friends, family and even strangers. I've truly seen God work in our hearts as well as the hearts of others and I can't believe how a little 10lb baby has touched the lives of so many and he's only 2 months! I've never prayed so hard or cried so much since Ryder has been born. I have a sign in my kitchen that reads "When life gets to hard to stand....kneel" and that sign has never spoken so much truth!

I have asked God a million times "why Ryder?" As a mommy you want to be able to fix every hurt, mend every "owie" and take away all of your baby's pain. Isn't that what mommy's are supposed to do? Make their chlidren feel all better? It breaks my heart to not be able to fix Ryder, to not be able to tell him he won't have to undergo surgeries or have to be constantly poked and prodded at every doctor's appointment, to make his lip/palate whole again etc., that's when I remember that God is the ultimate healer and His ways are not our ways nor are His thoughts our thoughts. I look at Ryder day after day and as I start to think about the numerous surgeries he'll have to go undergo I can easily start to get discouraged, grow angry and bitter but then I quickly take every thought captive and I remember that God has a plan. He has every detail of our lives written down and before Ryder was born, He knew him, He set him apart and He has a plan!

September 10th marked Ryder's 2 month birthday and on that morning, as he slept, I just stared at his face as tears streamed down my own. I cried and rejoiced all at the same time. Ryder likes to smile as he sleeps (I like to think he's dreaming of the Angels who carried him down from heaven) and as I gazed at his smile I savored every second of it because I knew his smile would soon be changing...

Ryder's first surgery is scheduled for October 4th at 7:30am at CHOC of Orange. Dr. Prutsok (Ryder's plastic surgeon) will be repairing his lip and he'll have to stay at least one night in the hospital. Post-surgery, he'll have two sets of stiches (4 layers each) coming down from his nose, from where they pulled the sides of his top lip together to meet in the middle. I know I'm supposed to be happy about this because Ryder will be able to eat, talk and function better with his lip surgery but I've grown to love my baby exactly the way he is that the thought of his face changing breaks my heart. For 2 months I've woken up to and fallen asleep staring at his perfect little face. I don't even notice the cleft anymore! I savor his smile, I savor the way he tries to suck down his special bottle as fast as he can, I savor his little cleft that I have to clean after every feed. In my mind, Ryder is exactly the way God has intended and he's absolutely perfect! His smile already has such a story!

I ask for prayers as we embark on this first surgery. I pray that God directs the hands of Ryder's plastic surgeon and nurses. I pray that God comforts him as he lies on that hospital bed and has no idea what is going on. I pray that God gives us a peace that passes all understanding as we wait for our precious baby to come out of surgery. I pray that when we see Ryder for the first time, post-surgery, that our hearts will be filled with joy and not sadness. And when we see Ryder's new smile, we'll know that this smile's story will eventually end with "and they lived happily ever after"