Saturday, September 20, 2014

Dear William

My heart is filled with joy and love and also relief - Will is ONE today! Which means... WE MADE IT! We made it through all of the difficult treatments and surgeries in his first year, and he can just enjoy being a kid for hopefully years to come now! Here's a collage of Will's first year:
To capture my sentiments, I decided to write Will a letter - something he can look at and hold on to forever.  And I'm now sharing it with you too, so here goes:

Dear William,

I can't believe how time has flown; my little man, you're turning ONE!
I feel so lucky and so blessed to have the privilege to be your mom.
It feels like just yesterday that I held you in my arms for the first time,
And now a full year later, we've been through so many firsts of different kinds:
Your first smile, your first laugh, all of your first bumps and bruises,
I've adored watching every moment as you grow, and now you're off and cruising.
But son, the year has also brought with it some challenges you see,
This year I had the heartbreaking task to hand you off not once, but twice for surgery.
You've been through so much more in your first year of life than most will ever endure,
you've come so far and shown such strength that it touches me to the core.
You have a world class team of doctors, and we are grateful for all they've done,
But William, please don't ever forget that we've loved your smile from day one.
I love you more than words can say, and you're the bravest person I know.
You've touched and changed so many lives, and your impact will only continue to grow.
And while this year has brought its share of great times as well as some that were hard,
I would not change a single thing, as it's made us who we are.
So as I wish you a very Happy First Birthday, I also have to say:
You are my superhero and my inspiration each and every day.

Love always and forever, with all of my heart,
Mommy

Wednesday, September 17, 2014

On the Other Side of Cleft Palate Surgery!

We made it! We're on the other side of palate surgery... and it feels GOOD! On September 9, Will had his palate and other side of his gums repaired, ear tubes placed, and steroid injections in his scar. The morning of surgery we arrived at NYU Langone Medical Center bright and early. Will was in great spirits, and it felt a little strange to see him be so happy and playful - I felt like we were deceiving him. But really, I think it was better that he was happy and didn't know what was to come before going back. That's one benefit to having these surgeries done when they are so young. Here we were waiting to get checked in, and then ready to go back:
 

 


 The surgery took about 4.5 hours, which is a little longer than we expected, but other than that, it went exactly as planned. Dr. Warren explained afterwards that Will's cleft palate was on the wider side - he basically just had gums up there (see my last post for a pic), his nasal bone was off-centered (it's normally centered), and he has a naturally high arch to his palate, all of which made the surgery just a little bit more difficult to complete - hence the reason for taking longer. But Dr. Warren said it went great, regardless. We got to see Will around 1:30p, and it was just as hard as the first time to see him in recovery - he was very groggy and trying to come out of anesthesia, and clearly was in pain. I of course held him as soon as we got back there, and before long he was drinking without protest (a HUGE accomplishment immediately post op). Here we were in recovery:


Thankfully, this time around, the nurse on the team, Pat, pulled some strings to ensure we weren't stuck in the 4 baby room again overnight so we had a normal 2 patient room. It was uncomfortable, but 1000 times better than the last surgery. Will didn't want to sleep unless he was held, so I spent the night on the reclining chair with Will in my arms, and we managed to get a few hours of sleep together that way. It wasn't great, but it was no where near as bad as I expected it to be. And he continued to drink throughout the night, so we knew we would be discharged first thing in the am.

Since being home, Will has just amazed me with how he has handled this recovery. It's been so much better than the first surgery. By day 2, we had smiles and even some laughs, and day 3 I had him back on his regular nap schedule! And once he figured out how to crawl and cruise with the arm restraints on, he was a much happier baby. He does still wake a few times a night - at first it was for meds, but now I think he's just mostly uncomfortable because of the damn no no's. We are still struggling to get him to drink enough fluids as he really just seems uninterested in anything liquid at all, but he's getting at least the minimum to keep him hydrated and I know eventually he'll come around (I hope anyway)!! But all in all, I cannot complain, and in fact I'm still pinching myself at how well he's doing. At 1 week and a day post op, it almost still feels unreal that we actually made it to this point already, but boy does it feel good! Here's Will a few days post op:



We have a follow-up appointment with Dr. Warren at 3 weeks post op. If everything looks good at that appointment, we should be cleared and surgery free until he's about 7 or 8 years old (and possibly even later)!!! So please cross your fingers for us friends, as that would just be amazing news for us to receive. But for now, it's time to help Will continue to heal, and of course - plan for his FIRST BIRTHDAY that is just THREE days away!! Wow - what a year it's been and I wouldn't change it for anything.

Tuesday, August 12, 2014

The Countdown to Cleft Palate Repair Begins!

Well everyone, we are officially 4 weeks away from palate repair and I'm starting to get anxious! It has been so wonderful these past few months letting Will just enjoy being a baby and not having to worry about surgeries, taping, and endless doctors appointments. I know we still have a month before the surgery, but in the last few weeks we've been meeting with the doctors and discussing the procedure, so it's made it all feel very real and very near! Here he is this week:


Will's surgery is set for September 9 (11 days before his first birthday), during which the surgeon will repair both his hard and soft palate as well as the other side of his gums, and the ENT will place ear tubes. Dr. Warren will also be doing steroid injections in Will's scars since they've healed much thicker than we'd like - the injections should help accelerate the healing process and help minimize the scarring on his lip. The whole thing should take about 3 hours. He will once again have 3 weeks of restrictions post op - arm restraints, no bottles, no binky. Luckily, he'll be able to go back to eating purees and very soft foods within a few days. Definitely not looking forward to another 3 weeks of restrictions!

For those wondering about the palate repair procedure itself, I'll try to explain. First, here is a picture of Will's open palate so you can what it looks like - there's just a big hole that goes all the way back.


For the repair itself, Dr. Warren explained that he will take tissue from each side of Will's existing palate, basically cutting a thin layer from each side and folding it over itself to repair the hole. He also does a detailed repair of the muscle in the back of the throat, which is also split open, by pulling that back together so that Will is able to form proper sounds for speech. Without repairing the muscle, children with cleft palate often experience many speech issues that require extensive speech therapy and even additional surgeries because they aren't able to make the necessary sounds. Up until Dr. Warren explained this to me, I actually hadn't even thought about the muscle as part of the repair - I always just assumed they closed the hole in the roof of his mouth and that was it. Dr. Warren said that he has perfected a technique (spearheaded by Dr. Cutting, whom he studied with) that has a greater than 98% success rate, which means there's a 98% chance that no additional surgeries will be needed. For comparison, the typical cleft team has a success rate of 80%, and the best cleft teams have a success rate of about 90%. So I'm feeling very confident that Will is once again in the best possible hands!

So for now, I'm going to focus on enjoying these last 4 weeks before surgery, and then take recovery one day at a time. Plus, planning for his first birthday party (I'm thinking superhero theme is appropriate) will at least help keep me busy with something fun! And don't forget that we are asking for donations to two awesome cleft charities in lieu of gifts for Will's 1st birthday, so please check out his fundraising pages if you'd like to donate! Thank you!

Smile Train: support.smiletrain.org/goto/smilesforwill. This is a fantastic organization that provides training and funding to empower local doctors in developing countries to provide free cleft surgeries in their communities. Each $250 raised will provide 1 complete cleft surgery.
 

Cleft Kids, Inc.: http://www.cleftkids.org/store/p34/Will%27s_First_Birthday_Fundraiser%21.html. This is another amazing organization that provides care packages for children undergoing cleft surgery. $20 will provide one care package to a child.

Wednesday, June 11, 2014

Preparing for Cleft Palate Surgery and Will's First Birthday!

Happy June everyone! It's been awhile since my last post and I have to say that this last month and a half living tape free has been so wonderful! Will can finally just be a baby and not have to worry about appliances or tape or raw cheeks and I can really see a difference in his personality - he's just happier (and I don't blame him!). I can't believe my little dude is already 8.5 months old. Here are a couple of his 8 month shots because I couldn't pick just one.



Time is going so fast. So fast, in fact, that his palate repair is creeping up on us. It felt so far away for so long, and now all of a sudden we have a date set in stone - September 9 - and we're making our preop appointments with his surgeon and the ENT, so it's becoming real very quickly. Luckily, we get to enjoy the summer before we have to worry about it, so as much as I get anxious thinking about it, I'm going to try to relax and enjoy these next 3 months as much as possible! As we get closer I'll do a post about what the surgery entails, but luckily this one will be much shorter than his lip repair was (about 2.5 hours compared to 8!!).

In more exciting news, we have started thinking about Will's first birthday, which will be here before we know it! We have decided that in lieu of gifts, we are instead asking friends and family to donate to 1 of 2 cleft organizations we have selected to raise funds for in Will's name.

The first organization is Smile Train: support.smiletrain.org/goto/smilesforwill. This is a fantastic organization that provides training and funding to empower local doctors in developing countries to provide free cleft surgeries in their communities. Each $250 raised will provide 1 complete cleft surgery.

The second organization is Cleft Kids, Inc.: http://www.cleftkids.org/store/p34/Will%27s_First_Birthday_Fundraiser%21.html. This is another amazing organization that provides care packages for children undergoing cleft surgery. $20 will provide one care package to a child.


We have an aggressive goal of raising enough funds for 5 cleft surgeries through Smile Train as well as to provide 5 cleft care packages through Cleft Kids. If you would like to donate in Will's name, please check out his fundraising pages using the links above. THANK YOU!!

Wednesday, April 30, 2014

Living Tape Free

Today marks Will's last day of wearing nose stents, after wearing them for 2 months. To some, that may not sound like big news, but for Will, this is the first time in his 7 months of life that he does not need to have some sort of appliance taped to his face. Literally. He got the NAM at 2 weeks old and wore it for 4.5 months, then had his nasal stents fitted 3 weeks post lip and nose repair and has worn them until today. I'm more overcome with emotion than I expected to be - in fact, I even cried when the doctor told us Will was done with them. I guess it's just a huge release. A small part of my joy is selfishly based - it's been a lot of work for me to keep up with all of his taping. But really, the biggest part of my joy is for Will - he can now touch his face without us pulling his hands away in the fears of him pulling off his tape... he doesn't have to have junk constantly taped to his face, constantly itching his poor sensitive and raw skin... and he now can just be a baby, pure and simple. It's a wonderful feeling and one I've waited a long time to feel. Here is a shot of Will today just after removing the nose stents for the last time - what a happy little dude!
 
 
 
For those skeptics, like I had been, who may be wondering if it was really necessary to wear those nasal stents for 2 months... here is a shot of Will at 3 weeks post op the day he got the stents, and today after wearing them for 2 months. It's quite unbelievable and it makes all the hard work worth it. His nose is perfect!! 

And another close up shot from today of his nose and lip repair, for good measure. I've said it before and I'll say it again - Dr. Warren and our entire NYU team is hands down the best out there! I'm just in awe. Speechless really.

 


I also have to add that we started using essential oils on Will's scar in the hopes of reducing the redness and softening the scars, and after using the oils for just over 2 weeks, the redness has been literally melting away and the whole area is softer! It's unbelievable. I was a HUGE skeptic, and now I'm a believer. We're now starting to use the oils for other home remedies (colds, headaches, back pain, dry skin, etc) and I'm loving the fact that we can go a natural route and reduce our reliance on chemicals. Call it voodoo witchcraft if you will (Buddy does), but it works!! Thank you to Dara for introducing me to them!! Here's a shot of Will before we started the oils and then after just 2 weeks using them:

So, Will is doing great and we're free from appointments for the next few months until palate repair around September. And although all of hard work over the past 7 months has been absolutely necessary and completely worth it, I'm now looking forward to enjoying the summer, letting my baby be a baby, and LIVING LIFE TAPE FREE!! Wahooooooo!

Friday, March 28, 2014

Can't escape the tape... and introducing Cleftopedia!

It is hard to believe that we are now nearly 8 weeks post op from Will's lip, nose, and gum repair. We are so amazed at how wonderful it turned out, and so grateful to be working with such a fabulous team. I know I say it all the time, but we LOVE Dr. Warren and our entire NYU team. Here's Will this past week:


As far as recovery goes, Will has been healing very well. He's been a bit more red than most babies on and around his incision lines, which is a result of his body fighting those stitches that are still in there. But other than the redness, which will go down as the sutures continue to dissolve over the coming weeks, he looks fantastic. Especially his nose - such a cute little button nose! But let me tell you, that nose takes WORK! Will got nasal stents at 3 weeks post op and he has to wear them for about 4 months to help shape the tissue as it heals. The stents are taped on very similar to how we taped the NAM, so we are facing the same struggles with his cheeks being so irritated and we are having a hard time keeping the tape on as we did with the NAM. In fact, I would say it's actually worse than the NAM because he's older now and it is not unusual for him to literally rip the stents out, tape and all, on a daily basis (of course further irritating his cheeks). Plus, he screams bloody murder as soon as he sees us coming near him to place the stents and shakes his head side to side the whole time we're trying to place them. It's pretty awful actually, and I literally have to pin him down to get the stupid things in. Every day. Sometimes more than once if he rips them out. But... the results are obvious, and they are really making a difference in the shape of his nose, so I know that they are completely worth it and of course will stick it out for as long as we have to. But it sucks and I don't have to like any of it. Here's a side by side shot of Will before stents and then after having them just one week, and another shot showing how the stents look when they're in.


In other exciting news, I have been working hard on a new cleft website called Cleftopedia with my West Coast twinnie, Dara Smith - we just launched it this past week and it's already receiving an amazing response in the cleft community! Dara and I met through the Baby Center Cleft Moms facebook group, and as our friendship has developed, we discovered we have freakishly similar lives: we are the same age, have 2 kids that are the same age, with similar birthing stories, her daughter Isla also has the same bilateral cleft lip and palate as Will and is just 5 days younger than him, their surgeries were a week apart, we're both into tattoos, have tattooed hubbies who are into the same kinds of music and have similar interests... seriously the list could go on and on! But one of the biggest things we had in common was how difficult it was for us to choose a cleft team while we were pregnant. There's a lot of information out there, in a lot of different places, and yet none of it is very detailed or particularly helpful beyond offering a simple listing of teams that exist. One day we were talking about how helpful it would have been to have a more detailed list of cleft teams that clearly outlined things like their pre-surgical approach, post-surgical restrictions, reviews from other parents and before and after pictures. It was from this discussion that the idea for Cleftopedia came about - what started out as a more thorough team listing, also grew into a full cleft resource intended to help out new cleft mommies as they start their journey. It is unique because it's based completely on the personal experiences of over 200 cleft mommies, and includes information on different bottles and sippy cups, thorough descriptions of the various pre-surgical techniques with real life examples and photos of results, and of course it has the more detailed cleft team listing, which is the true gem of the site. I am so proud to have created such a thorough site for new mommies, and it feels amazing to be able to help so many others as they embark on their own cleft journeys. I'm also grateful to have met someone as awesome as Dara, who is an incredible mommy to her girls, and a super cool chick to boot. I can't wait to see where Cleftopedia takes us, and I'm looking forward to the ride.

Saturday, February 22, 2014

On the Flip Side of Cleft Lip Repair

Hello all, and apologies for taking so long to make my next post. When I left you last, we were counting down the days until Will's surgery on Feb 4, and now here we are 18 days post-op! I still find it hard to believe that the surgery is behind us - we had so much anticipation leading up to it that it almost doesn't feel real. The road to recovery has given us some bumps along the way, but before I get there, let me take you back to the night before his surgery and tell you about our journey. Will's surgery was the first one scheduled for the 4th, meaning we had to be at the hospital at 6a, so we knew it would be better to spend the night in the city and not have to worry about waking up ultra early and dealing with driving there the morning of. We booked the apartment through the myFace foundation (www.myface.org), which is the non-profit associated with the NYU team, and luckily it is located directly across the street from the hospital so we knew it would be exactly what we needed. Well, Monday, Feb 3rd brought with it a massive snowstorm across NY and NJ. As in, roads were a disaster all day. Of course. That evening, we said goodbye to Sadie as she left to stay with my parents for the next few days, and then we hit the road around 7p to head into the city. Here he was just before we left home.


It was a mess, but we took it easy and didn't have any issues getting there. That night, while Will peacefully slept in the teeny little kitchen of the studio apartment, not knowing what was in store for him, Buddy and I were anxious and didn't know what to do with ourselves. It was such a surreal feeling, knowing that we would be handing off our little man the next day to forever change his sweet little smile. I think we both managed to get a few hours of sleep, and before we knew it, it was daybreak and time to head over to the hospital. We checked in at 6a as planned, waited a little bit and then Will had a quick checkup by one of the nurses to make sure he was ok for surgery. After he was cleared, we were brought back to a final waiting room where we then met with the anesthesiologist and the surgeon, Dr. Warren, one last time before we changed him into his little hospital gown. Here we were in the waiting room, and then in his gown all ready to go back.


We were able to walk him back to the OR doors, and then we had to say our goodbyes. I stayed strong all morning because I didn't want my little dude to see mommy cry, but handing him off definitely stole a few tears from me. We handed him over at 7:30a, and then the waiting game began. We knew it would be a long surgery as Dr. Warren had explained to us all that was involved - lip, nose, and gum repair - and that he took about 7.5 hours to complete it. In fact, one of the nurses described Dr. Warren to us as "an artist who likes to take him time", and you know what, being this is our child's face we're talking about, I'm plenty happy to have an artist working on him. Believe it or not, although the day was long, I actually worked all day and it made it go by much faster than I expected. And more importantly, it distracted me from worrying the whole time (thanks, work!). We received a few updates throughout the day, each time receiving a report that everything was going excellent, and then just as 3p rolled around out came Dr. Warren to let us know he was done and everything went beautifully. They had Will in recovery and were helping him "wake up" from the anesthesia, and we could go back to see him in about 30 min. I'll tell you, those 30 min were the longest of the entire day to that point - it felt like an eternity as we waited to see him and I was flooded with anxiety and emotions. I found myself wondering what he would look like, whether would I still find him handsome, and whether I would be happy with his repair. All of that went away as soon as I had him in my arms. My sweet little baby, still completely out of it but trying to wake up, sort of whimpering, face swollen and new... and I instantly fell in love with him all over again. Instantly. Here he was in the recovery area just after we got back to see him.


We stayed in recovery for about 2 hours I think, and then our room was ready for us. It was a room shared by 3 other patients. Yes, 4 in a room. Dear lord. Saying it was a horrendous night is putting it mildly. Will was in pain, inconsolable and up screaming and writhing every few hours all night long, the other babies in the room tended to cry as soon as I had managed to fall asleep, thus waking me and Will up again, and all I had was on a teeny little fold out chair. I think I slept a total of 3 hours the entire night, if that. It's a memory I would like to soon forget. Luckily we had kept the apartment across the street for one more night, as there is no way Buddy could have possibly stayed there was literally just no room (and might as well let one of us get some sleep)! I'd say around 4 or 5a I started hearing sleet hit the windows - yes, mother nature was gracing us with another winter storm perfectly timed for the day we were to be heading back home. We were discharged from the hospital around 12:30p and headed over to the apartment to figure out what to do. After much deliberation, we decided we would be much more comfortable at home, so we decided to hit the road. Luckily, it was mostly just wet by then, and again we took our time and made it home safely. Whew!

The first few days and nights home were pretty awful, not going to lie. It was like having a newborn all over again - constant feedings and not much rest at all. The stronger pain meds they prescribed for Will upset his stomach and made him puke up every bit of formula we had managed to get him to eat (which was not much), so obviously that wasn't going to work as we had to ensure he remained hydrated. So after just three doses of the stronger stuff, we had to switch to just Tylenol for his pain and hope that it would be enough. In addition, we have to follow certain restrictions for 3 weeks - he has to wear arm restraints to keep his hands out of his mouth, he can't have his regular bottle so has to eat from a special feeder, and no binkie. Between the pain and the restrictions, Will has not been a happy camper. Besides the initial pain, I think the binkie withdrawals have been the hardest for Will. He always used it to soothe himself to sleep and all of a sudden we took it away. He has been struggling so hard to fall asleep since surgery - he literally screams and screams and almost nothing soothes him. It has gotten a little better, but we still have a ways to go - we used to be able to lie him down awake and he would fall asleep within minutes; now, I basically have to pace around with him until he tires himself out from screaming, which can be anywhere from 15 minutes to hours (yes). It's heartbreaking and frustrating at the same time. I just want him to feel better and to get back to his usual self. Besides falling asleep, though, he has been mostly back to his normal self since probably about 5 days after surgery. He's definitely not as content as he was before, but he's getting back to it.

In terms of healing, Will is doing fantastically. His repair looks amazing and we're beyond thrilled with his results. He had his surface lip stitches removed after 1 week, but still has tons of dissolvable ones in there - Dr. Warren said there are 3 kinds that will take between a few weeks or up to 4 months to fully dissolve. We keep a piece of tape over his lip, which we are supposed to do for 6 weeks post-op - Dr. Warren says it helps to keep pulling the area together as it heals, so even though I would rather not, we'll do it! We're just about done with the restrictions - this coming Tuesday will be the 3 week mark so I think we'll be going back to business as usual sometime this weekend. The final step in this phase of his repair will be getting nose stents placed, which will happen next Wed. He will have to wear them for 3 MONTHS, which I'm sort of bummed about but I know it's to help support his newly formed nose so again, we'll of course do it. I am a little worried about how he'll react to them, but hopefully it won't be too bad, and before we know it we'll be done with those too! Just in time to have a few months off before gearing up for palate repair sometime in September. But I'm not going to think about that right now. Here are a few pictures of his progress to date:

                                                           2 Days Post-Op                                                      5 Days Post-Op

 
                                                                                                                                         Happy 5 Months little superhero -
                                                My little Valentine - 10 days post-op                                  2/20/14, 16 days post-op
 

So that's where we are. It's been tough, probably tougher than I expected, but Will is my little superhero and I'm amazed at his strength and resilience. Although mommy and daddy will unfortunately remember every part of this journey, luckily he will not. We will of course show him the pictures and this blog so he understands and is proud of what he's been through, but I'm so glad he won't remember the pain or struggles. I wish I could take it all away from him, but since I can't, I am just doing the best I can to help him heal quickly and keep him happy.

Wednesday, January 29, 2014

T minus 6 days until Cleft Lip Surgery!

Well, we are less than a week from Will's surgery. It actually got bumped up a couple of days due to some scheduling issues and is now on Tuesday, Feb 4.  I've been strong for most of this journey so far, but I've been finding it harder to stay composed lately - I'm so emotional! As I've said before, on one hand I am super eager to have this behind us, but on the other hand I'm worried about how Will will react to the surgery, and even more so, I just can't picture what his new smile will look like and I'm going to miss the sweet smile I've already fallen in love with. We had our preop appointments today with the team and Will's surgeon, Dr. Warren, so now it is actually feeling real - it's hard to believe that the surgery we've been anticipating since we found out about his cleft at our 20 week ultrasound is actually upon us. Everyone on the team is thrilled with his progress with the NAM and there is nothing else that could have been done to make him more ready - he's as well prepared for his surgery as we could have hoped, and that makes me beyond ecstatic. Of course, there are no guarantees that his repair will be "perfect", but I can rest well knowing I did everything I could for him - going with the best cleft team and surgeon around and slugging through 16 weeks of work with the NAM, I know I have given him everything I could for the best possible outcome and won't have any regrets or "what if's". Dr. Warren said the surgery is actually more like 7.5 hours (yikes!), and that's because he does it a bit differently than most other surgeons out there - he repairs not just the lip, but also in this surgery he builds the floor/base of the nostrils and does an initial repair of the gums where he connects all three pieces in the hopes the bone grows together (and thus potentially avoiding a bone graft when Will is older). So now we wait, counting down the final days before his surgery, taking a MILLION pictures of my favorite smile so that we never forget the first smile we fell in love with. And really, we're lucky because as other cleft mommies have said, we don't get just one smile to fall in love with, we get two! And soon we'll be falling in love with Will's new smile all over again. For now, here's a pic of Will at 4 months old last week, as well as his most recent progress pic after 16 weeks with the NAM.


Saturday, January 11, 2014

And the countdown to cleft lip repair begins...

Happy New Year, all! It is hard to believe that the holidays have come and gone and we are now full throttle into 2014. And a big year it will be: Will's cleft journey will really get underway as he will have at least his first surgery to repair his lip, nose and gums, and possibly his palate surgery later in the year. We recently locked in Will's surgery date - it's Feb 6th... and I'm terrified. I'm terrified first because it is a long surgery (5.5 hours) for my sweet little dude to have to go through, not to mention I have no idea how I'll hold it together the moment I have to hand him over to the doctors. I'm terrified of his recovery afterwards as I know it will be difficult and I'm going to hate seeing him in any sort of pain. But most of all, I'm terrified because I can't picture what he will look like afterwards and I love his sweet little smile just the way it is! Of course, I know it's what he needs - not cosmetically, but physically so he can eat, speak, breathe better, etc. But still, it's so bittersweet. And so the countdown begins - we are less than a month away and I really can't believe how close we are. I obviously knew this day was coming but now it is starting to feel real. He only has one more NAM adjustment this coming week, and then we're off the following week and the next week is his preop with the nurse and the surgeon. Wow! As I said earlier, this surgery will repair his lip, nose, and gums all at the same time. This is actually not the norm for all cleft lip surgeries - typically these repairs would be done in multiple surgeries over more time, but because the team at NYU is so magnificent with the NAM, Will is ready for all of those repairs at once. Not only is it less surgeries for him to go through, but there is a much better result from just this one surgery. In fact, they even told me that there is a good possibility Will won't need a bone graft for his gums, which most cleft kids need to have at around 7 years old or so. That is not guaranteed, but I'll take even the chance that he can avoid that surgery (it's a tough one). I know I say it all the time, but I'm SO GRATEFUL for our NYU team of doctors - they are truly amazing!!

This is a collage of his progress to date (from 2 weeks old to 16 weeks old). Bottom right is current. His premaxilla (piece of lip and gum just below his nose, which was sticking out and pushed off to the left when he was born) is now centered and pushed back in, and his gums are now completely aligned and touching. He also now has a defined nose and his columella (the piece of his nose between his nostrils) is now longer than most babies his age (and he didn't have ANY when he was born). All of this alignment and movement is due to the work with the NAM, and means he won't have the telltale "flat nose" that many bilateral cleft lip babies have after their lip surgery (that usually gets fixed in a later surgical revision for those babies).
 
 
And here is a picture of Will today - just being cute!

 
I have to say, I am a HUGE advocate of the NAM as I believe it really does wonders for preparing cleft babies for a successful surgery and reducing the number of surgeries needed, and although it has not been as terrible as I thought it would be, I CANNOT WAIT to be done with it! As much as I will miss Will's cleft smile, I WILL NOT miss having to deal with the daily taping and watching out to make sure he doesn't bump his face or pull it out.
 
Beyond that, 2014 marks my return from maternity leave and the start of my shiny new job that I'm super stoked about! This was actually my first week back to work, and as eager as I am to get back to the adult working world, it was hard to leave Will knowing he still struggles with eating and everything. Plus his care is a whole other fiasco - we have a great daycare that Sadie goes to and they were willing to take him now, but being we have to keep him super healthy in the month leading up to his surgery, daycare was clearly not the right option (if he gets sick, they will postpone the surgery!). So for now we have a team effort of me, Buddy, and our moms watching Will up until his surgery. Whew! But he did pretty well this week and I think I'll relax more as I get used to not being with him 24/7. Also, this year Buddy and I will celebrate our TENTH wedding anniversary on July 17 (wow!!). I'm hoping we can try to get away or do something special to celebrate, but I'll guess we'll have to see how the year plays out.
 
So that's where we are right now. It's really exciting and scary all at the same time. Most important right now is keeping Will healthy - wish us luck!! It will be hard with a toddler who goes to daycare, but I know we can pull it off. So until next time... stay classy my friends. :)