The Recovery

It’s been a week since our beautiful Isabella had her primary lip/nose repair. All I can say is WOW. What a difference!

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This photo was from Sunday. Since then the glue has come off the outside of her lip and basically the only thing left is just a little bit of a blood booger that is stuck to the dissolving stitches on her nose.

She has been sleeping fairly well and eating basically just like she did before surgery. She had a bottle within an hour of surgery being done and with the exception of a few bad feedings here and there on Thursday night and Friday, she’s been back to basically normal since Saturday afternoon. Don’t get me wrong, she still had her moments, and still needed a ton of cuddle time, but for having a MAJOR surgery, it was incredible to watch.

While she’s obviously looking a bit different, her personality is still 100% there…I mean look at this picture of her…

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She’s totally giving me a “Dad, please stop taking so many pictures of me…I’m just trying to enjoy my fingers and make this pain in my bottom gums stop. I’m teething…leave me alone.”

Or her super dramatic sleeping position…

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So one thing I wanted to try to explain with this blog is what is to come in the future.

More surgeries – at a minimum…2…more likely…way more.

This surgery simply attached the lip together and formed her nose. Nothing else was done during this surgery (well technically she got tubes in her ears…but that was easy.).

At about a year old she’ll have her primary palate repair surgery. This will bring together the upper part of her mouth and cut off her mouth from her sinuses. If you haven’t googled what a cleft palate looks like just imagine eating and absolutely everything going up your nose (and then out your nose) without a laugh required. They’ll bring those two sides together and she’ll have a full roof of her mouth.

Sometime between 5 and 9 years old she’ll have a bone graft using bone from her hip and they’ll connect her gums (take a look at the split screen shot above and you can see the right side of her gums…those are still not attached to the left side) and place the bone within it to ensure that her adult teeth have a place to anchor.

In addition, every cleft cutie is a bit different when it comes to growing and revision surgeries. I’ve seen stories of 16 surgeries by age 16, and some that have way fewer. That will all depend on her, both physically and what she wants for herself down the line.

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One of the things that we heard a ton of at the beginning was “Well modern medicine is incredible and they can fix that easily.”  While it is accurate (I mean look at that picture…she’s amazing and I can’t believe they did that.)…it’s also a very simple way to look at it.

While yes, her lip and nose are now formed together and the surgery went great, the road is just starting. This is something that won’t occupy our lives at all times, but will occupy our lives for a very long time…likely 18+ years.

I’ve had so many people ask me in the last week, “Oh, now is she done with surgery?”

It’s not that people are minimizing the issues, it’s that there is a total lack of knowledge by anyone who hasn’t been personally touched by a cleft, or someone within their inner circle of family or friends. Think about it…how many “friends” did your child have at 3.5 months old? Not many…you weren’t introduced to other parents because of dance class or soccer yet. If there hasn’t been a cleft within your family, or that inner circle of friends you’ve likely never seen a baby in person with a cleft lip, you’ve seen the scar from surgery afterwards. There is absolutely nothing wrong with that but I want to change it moving forward.

The internet is helping to change it, and I want to be a catalyst for that change. My ask of you, if you’ve read this far, please share this post to your network. Tag me on Facebook, Twitter, Instagram, anywhere you share it. July was craniofacial awareness month, but let’s make it every month. Help me help explain the journey.

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Do I know everything about cleft lips and palates? Hell no! Can I explain what is going on as we go through it. Of course. We are blessed to be so close to the amazing team at the Lancaster Cleft Palate Clinic…if you are moved to do so…make a donation in Isabella’s name. Every time we go there I see kids from infants to young adults that are so happy and full of life. Help me help them.

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Isabella is trying to break into mommy’s wallet to donate!

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What a difference less than 12 hours can make.

Thursday, August 3rd – 6:00 AM – We pack up the Jeep and head to the hospital.

We know that today is the day. Isabella is going to have her lip/nose surgery. We know going in that it’s going to be a long and likely VERY emotional day. There is going to be a major change in our daughter…the biggest question in my mind…”How am I going to feel about the change in her smile?”

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6:30 AM – We arrive at the hospital and check in. By 7am we are in the waiting room waiting to go back to our pre-op room. We already took a final family photo (above) the night before celebrating Erin’s birthday but I grab a quick snapshot of my two favorite girls.

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8:15 AM – We’ve gone through all of our pre-op stuff and are getting ready to escort Isabella toward the OR before being swept back to the waiting room. Isabella finally fell back asleep for a few moments after crying most of the morning since she wasn’t allowed to eat. This is the final pre-surgery photo.

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8:34 AM – Isabella is officially taken back to the OR. However, as the doctors said, “She’s feisty” and the actually surgery didn’t get underway until much closer to 9:15 or 9:30.

12:30 PM – Isabella is done with the first procedure on her lip and nose and is now getting the tubes done in her ears. Our amazing doctor, Dr. Samson, comes out to the waiting room and talk to us about the procedure. He told us that everything went great and he was very happy with everything. We now know that we’ll soon be able to see our daughter.

12:55 PM – After the longest 25 minutes of my life (narrowly beating out the 33 minutes I had to wait for Erin’s C-section prep before I was allowed into the OR), we are escorted back to the PACU. There she was, our daughter….crying. Well of course she was crying, it was almost 10 hours since she had last eaten, and someone was just doing surgery on her mouth. You’d be crying too!

As always, Isabella drew a crowd near her bed, so there were at least six nurses and doctors checking her out and seeing the massive change in her appearance. She looked amazing. Even crying and being super upset, she looked incredible. I guess I should just show you.

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Not the best face, or angle, but it was what we walked back to. Our incredibly amazing and super strong Isabella Grace.

3:30 PM – She’s eaten about 1.5 oz and fallen asleep on Erin. Each of our parents and my brother Steve have made their way back into the PACU individually to see her. We now know that all that is standing between us and going home is her waking up and eating enough to prove that she will eat and not need any IV fluids.

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3:45 PM – We wake her up and begin to feed her. She eats another 2 ounces and we are cleared to get ready to head home!

4:30 PM – We leave the hospital and head home. Isabella slept the entire way home. It was amazing. I wasn’t sure if we were going to end up having a crying baby but instead after eating she immediately fell back asleep and enjoyed her ride.

5:00 PM – We arrive at home and she continued to sleep until about 6:30 PM and then ate another 3.5oz of milk. That appetite we all know and love is coming back quickly and this girl is going to act like nothing happened by tomorrow.

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It’s been a very emotionally draining day. I cannot believe that such a massive surgery yields results this quickly. Just a little black and blue dot on the right side of her nose, a few stitches and some glue. The red directly under the middle of her nose is just some dried blood residue but this is it. This is the result. I cannot begin to thank everyone who has sent a message, our families who sat with us today, and the doctors who made this magic happen.

Before and After

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Isabella’s 3 month photo (July 12th) and today’s post surgery photo.

3 Months…where has the time gone?

It’s been far too long between posts. Between life and baby and work and everything else the blog has fallen a bit by the wayside, but I want to try to change that back.  I had ideas for posts about Mother’s Day, and Father’s Day and numerous other things, but sleep always ended up seeming like a better idea.

My last post was exactly 3 months ago. April 19th. Wow. I thought that week flew by and all of the sudden my baby is rolling over, standing up with help and getting HUGE!

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All dressed up for Memorial day and super alert. 

The summer is flying by and we are almost to August, but that doesn’t mean that we’ve been home the whole time.

Isabella loves the car and loves being outside. For Mother’s Day, we went to the Hershey Gardens in the morning for Erin’s first Mother’s Day and my girls seemed to really enjoy it.

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She didn’t really want to wake up much, but it was the start of a pretty busy day, so getting her rest was definitely a good thing!

As she’s become more and more alert her personality has come out in ways that can only be described by this next picture. Let’s put it this way. I had just fed her and was looking at my phone…this was her response to not paying attention to her.

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She wasn’t overly amused.

The tap on her lip in that photo was to help pull the two sides of her lip together until her first surgery. Unfortunately, as you can tell from the pictures below, she wasn’t a big fan of that and ripped it off a lot so we stopped taping. It won’t impact the future, but if it can be done (and the child cooperates) it makes the first surgery just a little easier for the surgeon.

Before heading back to work. We took a few days to go to the beach. Isabella absolutely loved it even though it was a little cooler than we would have liked.

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She’s even begun to enjoy the pool. Well, truthfully, the girl loves water and loves bath time so it’s no surprise that she loves kicking her feet and splashing around in the water.

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As you can tell there is no shortage of photos of Isabella. Erin and I both think that when we get new phones we’re going to have to upgrade to a larger storage capacity to account for the photos and videos.

When people tell you that your child is going to grow up in a flash and time passes so quickly there is no way to truly understand it until it happens. This is about as close as I can get to explaining it.

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And like any good dad, I had to make sure to take a few pictures that I could use against her when she was older…

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But as we approach the August 3rd date of her first surgery things are getting a little more anxious. That huge smile is going to change.

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And honestly, that scares the crap out of me. I don’t even think it’s the surgery that I’m worried about. It’s my daughter changing. It’s not that she’s defined by the cleft, but by that HUGE smile and bubbly personality. She smiles at everyone. (Well except my sister one day…that day as soon as Tracie got near her she’d just start screaming.)

Don’t worry. I’ve got plenty of photos to share, and as we get to the surgery and follow ups and everything we’ll be sure to share more often. It’s just been a crazy 3 months and as anyone who is a parent can attest…time flies.

So to recap the first three months…we’re eating, growing, pooping, sleeping, standing (with help), almost crawling, rolling over, talking up a storm (when the words come please help us all!), and overall sleeping amazingly.

For everyone who has helped us…thank you. For everyone who is inspired by this…keep it going. You’ll get there. For everyone who is figuring this whole parenting thing out…it’s fun right???? (The answer is always coffee. Coffee, coffee, coffee!) For everyone else…thanks for reading all the way down here.

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Look at her just pushing me away saying “Daddy, I’m not a baseball…get me out of your glove!”

It’s been a week…

It’s official…as of 9:45am this morning Isabella Grace is 1 week old. To us, its crazy. Not so much that she’s a week old, but more that we are parents for a week now. So far it’s been all everyone says it would be and probably more. It has been fun, crazy, scary, loving, tiring, inspiring, incredible, and so many other words that I can’t even think of right now.

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Once again, before we get into our experiences so far, we have a few thank you’s to share. To both of our sets of parents, they’ve been extremely supportive and helpful through the first week. To my siblings and our friends, thank you so much for your support and caring. We know Isabella is loved beyond words.  To the staff of PSU Hershey Medical Center, from the doctors, the nurses, our amazing speech therapist Lori, and everyone else, a heartfelt thank you. We had such an amazing experience even with some testing situations along the way. And finally, to Megan.  Thank you again for coming out and taking photos of our journey. Every photo you see in this post, (and likely others to come after it) are courtesy of the amazing Megan Huppman. Check out all of the pics HERE.

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So now for the 1-week recap…

Above you’ll see the final photo of Erin pre-baby. Obviously still looking amazing and barely showing that tummy off at all. Shortly after this she got her IV and then walked to the delivery room. They continued to prep Erin for the c-section as I stood and paced in my jumpsuit. That may have been the longest 33 minutes of my life.

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Finally the nurse came and got me to make that same walk that Erin just made to the delivery room. I walked in and saw all of the people that would be participating in the procedure. And as soon as I was safely behind the curtain they began.

Things progressed but did take some time and I could tell that Isabella wasn’t going to come out without a fight. We later found out that she was transverse with her head to Erin’s left side, and her back facing outward. As the doctor said, “One of the hardest positions to deliver.” Of course she was. Why would we ever expect anything different?

About 11-12 minutes after they started I was told that if I wanted to stand up and look that it would be the time to do it. I did and while what was happening at first wasn’t exactly what I expected, a short time later I saw something that I’ll never be able to unsee. My beautiful daughter for the very first time. There she was. In living color, sound, and everything. It was intense to say the least. I looked down at Erin and said, “She’s here” and then immediately sat down. Not because of blood or anything surgical…but because when all you have is a small rolling stool to sit on and that emotional of a moment happens…you don’t want to miss when you do sit down.  Not to mention…knives.

IMG_3768We immediately heard the cry. It was small. Almost a coo, but within a few seconds and with the assistance of the amazing nurses who suctioned all of the fluid out of her mouth she was crying like the best of them. I walked over and saw her up close for the first time and quickly took a photo on my phone so that Erin could see our daughter’s face.

IMG_3770That was intense too. Showing Erin her daughter while she’s still in the middle of a MAJOR surgery. But it didn’t matter. The curtain separated us from them. That other room was so far away. We had our little family space and soon Isabella would be ready to join us there…after being cleaned up and measured of course.

7lbs 8oz, and 19 inches long. That’s crazy for 37 weeks and from a girl who just about anyone who didn’t know her would have probably thought her due date was in July or later. But that was our girl.

Just before Erin’s procedure was finished Isabella and I made our way down the hall and back to Erin’s room. It was sort of surreal. I just walked out of the delivery room with my baby in a bassinet and that was that. NICU and the Pediatric teams all cleared her almost immediately. After a LONG procedure and additional fibroids needing to come out just to close her up Erin joined us in the room. Now Erin got to truly hold our baby for the first time. IMG_3788

Later in the day our parents all came in and met Isabella for the first time. We had several visitors throughout our time at the hospital and it truly showed just how loved Isabella is not only by us but by many.

Things got a little interesting later in the evening after everyone headed home. We were told that with a “normal” delivery much of the amnionic fluid is pushed out of the baby due to the birth canal. But with the c-section that doesn’t happen. Isabella, while in my arms, spit up some of that fluid and began to choke on it a bit and held her breath. The nurses immediately swooped in and helped remedy the situation. While extremely scary for a guy who’s been a “dad” for about 12 hours, the nurses said it was something they’ve seen before. We decided to send her to the newborn nursery that evening just because we knew that neither of us would sleep.

Apparently overnight she did it again and the NICU and Pediatric teams got together and decided that even though her oxygen levels dropped for only an instant both times and they couldn’t replicate what had happened that she would be heading to the NICU for observation.

IMG_3808Just seconds before we found out that Isabella was going to be heading upstairs for the NICU observation Erin was going to need two units of blood due to her levels. Luckily we were able to go with Isabella to the NICU so that we at least knew where she was exactly and then headed back to Erin’s room for blood and lunch. Well just lunch for me.

After a solid day in the NICU, Isabella was moved to the Continuing Care Unit (think, NICU light) for continued observation but she was looking good. Feeding her with a bottle was still a task, but we were getting there. By Saturday evening, Screen Shot 2017-04-19 at 1.05.45 PMIsabella was literally “kicked out” of the CCU because they needed the bed and she was stable and looking good. We were overjoyed. Isabella was back with us, and Erin was making the progress that she needed to get discharged as well. Easter Sunday was going to be our release from the hospital.

Megan came Sunday morning and took a ton of photos. If you haven’t already, please click that link above and check them all out. I don’t think we could have asked for more amazing photos of our journey. Our daughter was coming home.

Screen Shot 2017-04-19 at 1.07.37 PMWe got in the car and started home. I don’t think I’ve ever felt more pressure while driving. We got home and were on our way as a cute little family.

Sunday was good, Isabella ate, and the dogs welcomed her home. Honestly, it was like they knew she was coming and were super happy to finally meet her. It was awesome to see. Chase still whines whenever Isabella cries. It’s like he’s trying to sooth her. (It doesn’t work.)

Since Sunday, we’ve had two doctor appointments, mostly just weight checks. No concerns, just trying to get her to totally rebound on weight and start packing the pounds back on. Feeding with a cleft lip/palate baby is Screen Shot 2017-04-19 at 1.06.59 PMtough. For now, it will only be Erin and I feeding her since there is such a learning curve not only for the person who has to hold the bottle, but also for Isabella to learn how that new person will be holding and aiming the bottle. It’s not like a typical baby. You can’t just hold them and keep the bottle in their mouth and have a conversation with someone else. You can’t watch TV. It’s a full time 100% concentration event. For any other cleft palate/lip parents…stick with it. It’s HARD. REALLY HARD. You’ll get there.

But to wrap up this whole crazy thing…She’s a week old. She’s been here for a week! Thanks again to everyone who has helped us in week 1. Here’s to a million more weeks!!!!

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Isabella Grace Has Arrived…

She’s here! Finally! At 9:45am this morning after putting up a heck of a fight to stay inside, she’s here! Ok fine…I won’t delay…here’s the three of us still in the OR this morning.

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Ok…so for the details.

 

We got here at 7am and got our room and things got underway. After getting a slight delay for the NICU team to be ready in case it was needed they took Erin back to the OR at 9am to get her going. I got escorted back at 9:33 and things got underway. Within 15 minutes our beautiful baby girl was here and making all kinds of noise.  But of course…like she would…she didn’t make this easy either.

Her official birth time was 9:45…but it likely could have been about 9:41 or 9:42 if she didn’t put up such a fight.  She was transverse and had her back facing out. The team we had with us was amazing and kept everything calm and moving forward despite the difficult baby that refused to help.

So…for everyone who put in an official guess the other day on Facebook…you all lose.  Some were close…guessing length but not weight, or weight but not length, but no one was dead on for both.

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Isabella Grace weighed in at 7lbs 8oz and 19 inches. For being 37 weeks, we are beyond happy with her size and can’t image how big she would have been at 40.

It’s been a crazy day with lots going on but we definitely want to thank both of our sets of parents and families that offered support throughout the day. We’ve had amazing care and amazing support from everyone at PSU Hershey Med and know that they will continue to take care of us in the days, weeks, months, and years to come.

It’s taken a while for me to get a chance to sit down with the laptop and share all of this, and we even considered just making a quick post on Facebook and doing a blog post later, but that didn’t seem right. We’ve created this blog so that people beyond our Facebook friends can follow. This blog is for everyone who has ever struggled to conceive and/or have a cleft palate/lip baby. We are sharing our story to help each and every one of you and we truly appreciate your support!

 

Once again….ISABELLA GRACE IS HERE!!!!!!

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Two Weeks from Tonight…

In just two short weeks (as long as little Miss Isabella Grace doesn’t decide to be a total diva…shhh don’t let her know that’s an option) we’ll be making final preparations in the house, going out to dinner together, and HOPEFULLY getting some sleep on our final night as a family of two. Then on the morning of April 12th…we are heading to the hospital to meet our daughter!

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With that said, most of the “preparing” is over. We’ve completed the nursery, the car seats are in and we’re finalizing the “go bags” tonight. In the last few weeks we’ve definitely noticed that the animals know something is going on. They’ve become very cuddly. They check out the swing and highchair and other baby stuff, but they have been very good about not messing with anything.

We’ve been using this time as a time to reconnect, a time to simply enjoy “us” as us. We’ve been talking to Isabella every night. It’s crazy to already know that this girl is going to be sassy and love to dance. The second that “The Voice” comes on the TV she’s rolling and moving around for two straight hours. What can I say? The apple doesn’t fall far from the tree.

I think it’s also been a time to reflect. At least it has been for me. Back in December when we found out about the cleft lip and palate we were obviously taken back by the news. But now, with time to think and reflect on everything, I think we are prepared. We have friends who had to deal with life changing baby news within minutes of their son being born, and I’m still in awe of how well they’ve handled everything. I feel like we are lucky. We’ve been able to learn over the second half of the pregnancy and there is already a plan in place. It’s comforting.

With only one more appointment scheduled (possibly another one next week too) we are in the home stretch with our prenatal team at Hershey. The entire staff, from the doctors to the nurses to the people checking us in and out of appointments, they’ve all been incredible throughout. This will likely be our final post before sharing the news that Isabella has arrived and we’ll be sure to share a photo of her as well.

The pregnancy journey is almost over…but our family journey is about to begin.

Seriously? Only 5 more weeks?

It’s been a crazy journey so far. From those first little pictures of basically just a black hole, to the 3D ultrasound where we can finally see her, it’s been crazy. But we both know that the crazy is just about to get started.

Over the last few weeks we’ve really been able to see the changes. Isabella has gotten A LOT stronger. She’s also gotten a lot bigger. We have been going in for growth checks every three weeks and when we went in for the last one on February 27th we got some pretty crazy news.  On February 6th, Isabella was estimated to be 2lbs 10oz and about 58th percentile. Now, just three weeks later she’s being estimated at 4lbs 10oz, and 93rd percentile. She’s definitely hit her growth spurt and Erin’s ribs have the bruises to prove it.

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Copyright: Megan Huppman

We also had a great time on Sunday even though it was only about 40 degrees outside with our friend Megan who is learning more and more about her camera and wanted to do a maternity shoot with us. We explored Pinchot State Park and got a few great shots. You can see all of the pictures here. Thanks again Megan.

We’d also like to publicly thank everyone who had to do with planning, setting up for, or even simply just attending Erin’s shower. It was incredible to see and feel the love in that room for Isabella already. We’ve gotten her nursery just about completely set up at this point, and just have a few more odds and ends to pick up before the big day.

Speaking of the big day, we know exactly what day that is now.  Officially, April 12th is our c-section date. Obviously Isabella could have a mind of her own (and if her personality is any indication, SHE DOES) and push that date up but we’re on the schedule for that day. It’s only 5 more weeks. It’s crazy.

I think I speak for both of us in saying that we feel extremely blessed to be at this point. Last year it felt like it would never happen, and then it did. We actually just heard from a friend of ours that they are now expecting too. They were one of the first people to reach out after we started this blog and let us know that they were thankful for us putting it out. They were only beginning their journey toward parenthood but it gave them the hope to know that eventually, it would happen. For anyone who is still out there struggling. Just keep with it. It will happen in due time.

p.s. I can’t wait to do this picture again, and have my daughter sitting next to me.

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Thank You For The Overwhelming Support…and not just for us!

Since we began this blog it’s been a rollercoaster of emotions. The high and lows of struggling to conceive…finally getting that positive test…going to the doctors for weeks on end to make sure it’s a “good pregnancy”…finding out we’re going to have a daughter…finding out she’s going to need surgery…it’s been a whirlwind to say the least but no matter what post we’ve made there has been an outpouring of overwhelming support.

We’ve heard from family, close friends, people we probably haven’t spoken to since high school and even complete strangers but no matter who reached out it’s been an abundantly clear that Erin and I have the strongest network of support we could ever ask for.

When we first launched the blog announcing our pregnancy, but also announcing the tremendous journey it had been to even get to that announcement we received messages from many of you. It was amazing to see not only the support, but how open people were to share their stories as well.  This blog was first started as a way for us to hopefully find a baby to adopt. Now, it’s not only a support system for us (and a therapeutic release for all of my anxieties as we sprint faster and faster toward that mid-April timeline), but it’s also beginning to become a place that others are feeling support as well.

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Erin is feeling good at almost 27 weeks.

Struggling to conceive is hard. Not just from an emotional standpoint for each of the parties involved, but as a stress on you as a couple. And if your closest friends or family do know that you’ve been not been able to conceive, it’s an added stress on that relationship as well. They want to hear the good news from you just as bad as you want to hear it for yourself.

As we continue to share our story with this blog we hope you find something positive from it. No matter the journey, you’ll eventually get to where you need to be. It may not make sense at the start, or even along the path, but keep on moving forward. You have no other choice.

Again, thank you to everyone who has reached out. In addition, those of you who who haven’t reached out or commented but have read and taken comfort in knowing that what you are going through isn’t uncommon and isn’t anything you can control…thank you for taking a more silent part in our journey. Let us know if we can ever do anything to support you, because all of you have been supporting us throughout this journey so far.

Overall Everything Looks Great…

This post has been a long time coming. Over a month to be exact. We were never really sure how or when we would share, but we knew that eventually we would. Warning: This post is definitely on the longer side, but we truly appreciate your time and energy in reading this blog. You’ll see why once you get there.

Back on December 8th we had our anatomy scan. As I mentioned in the previous post Isabella wasted no time sharing with us that she was a girl. But, not unlike her mother, she’s stubborn.  She wouldn’t give us a solid view of her face. At this point we’ve now had two additional 3D ultrasounds since the anatomy scan and each time she likes to hide. Erin has even tried to bribe her with presents…still no luck.

Here’s the closest we’ve gotten to truly seeing our daughter’s face.

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Of course she’s cool enough to give us a little “thumbs up” to let us know she’s all good in there, but this is the best we’ve seen.

You may be asking yourself…”So what if she didn’t give you a great view of her face, why did you have two more 3D ultrasounds?”

We’ll get to that soon I promise.  So back to the title of this blog, “Overall everything looks great…” I struggled to try to find a launching off point for this blog, so I decided to use the exact same phrase our doctor used when she walked in after the anatomy scan. “Overall everything looks great…but…”

As soon as I heard that “but” my heart dropped.

I immediately started thinking, “What was wrong with my baby? What did you see? I didn’t see anything during the scan. Everything seemed fine. I didn’t notice our ultrasound tech mark anything or take any extra pictures. What is happening?”

“…but we noticed that she has a cleft palate and cleft lip.”

We both stopped. Stunned like we got kicked in the gut. Neither of us really sure what to think, feel, say, do.

Our doctor continued to talk to us and let us know a brief overview of what we could expect in the coming days/weeks. We were moving back from “normal pregnancy” to working with the Maternal Fetal Medicine team. Ok…that’s not a big deal…it just means that we have to drive to Hope Drive a few extra times. Once we scheduled our meeting with them they would advise us on what else we could expect.

We were planning our gender reveal for two days later and just got this news. We had planned on going to Babies ‘R’ Us to pick out a cute outfit for our boy or girl once we knew what our baby was just because we finally could. Should we cancel everything. Just keep to ourselves and try to figure out all of this cleft lip and palate stuff?

No!

Ok, well maybe sorta, but eventually the answer was NO!

We drove home, both almost in tears. Not really sure if we were ready for this but by the time we drove down our street we decided to keep going and go to Babies ‘R’ Us anyway. We found the cutest little outfit for Isabella. (Yes, I know I’m screwed and need to find about 3 extra jobs just to pay for all of the cute clothes Erin is going to be buying.)

We talked to our parents about it, and shared with my siblings but that was it. Since then we’ve told a few other people. But for the most part, we’ve been keeping it to ourselves. Mostly because we wanted to be educated on what exactly to expect and for how long.

It was yesterday that we finally got a TON of answers. We also found our guides through this entire ordeal. We met with the Lancaster Cleft Palate Clinic and now feel like it’s time that we can share this information with the world. Again, at this point we are in no way experts (and please do not take any of this information as 100% accurate as I’m going from memory, notes, and what I can find from fairly reputable sites on the internet.)

So first, here’s a little bit of information on cleft palate and cleft lip.

  • It’s the most common birth defect, affecting 1 in 700 babies.
  • There is no known reason why a cleft happens.
    • There are certain syndromes that clefts are associated with.
    • Most often a cleft happens with no family history or syndrome.

For more information check out Lancaster Cleft Palate Clinic’s website.

Here’s a rough overview of what we have ahead of us:

  • Isabella will need special bottles and nipples and will need to be held upright in order to eat.
  • Lip Surgery – 3-4 months, once Isabella reaches about 10lbs.
  • Cleft Surgery – About 1 year.
  • Speech Therapy – As needed, but constantly monitored.
  • ENT Specialist – Babies born with cleft palates and lips can develop hearing issues and often have multiple ear infections and require tubes in their ears. (Often put in their ears during the cleft surgery).
  • A bone graft from her hip into her gums to assist with her teeth having somewhere to anchor.
  • And much more.

With that said, both the team at Hershey and the team at Lancaster Cleft have made us feel extremely comfortable and while I doubt we will ever be truly “ready” for all of this. We are as close as we can get. We met with our feeding specialist already and met the Executive Director and many others at the clinic. It was comforting to finally find out how feeding her will work. As we filled out the registries we had been unable to select any bottles or other feeding items.

The “TEAM” that we now have includes:

  • Plastic Surgeons
  • Feeding Specialist
  • Orthodontist
  • Speech Therapist
  • Audiologist
  • ENT
  • Pediatrician
  • Dentist
  • Prosthodontist
  • Social Worker
  • ALL OF YOU

When I started setting up and writing this blog we thought our Family Journey would go in the direction of Adoption and possibly IVF. But as life tends to do, it threw us a curveball. We ended up getting pregnant naturally and are now on a completely different journey than what we imagined.

I’m going to do a special blog next week with some thoughts on our first few months of blogging and some of the amazing feedback we’ve gotten so far. Stay tuned.

 

Our not so fun end of 2016…

Typically when you get out of work 4 hours early, you arrive home 4 hours early and get to enjoy some extra time relaxing and together.  Unfortunately, on December 30th, that wasn’t exactly how everything played out. Here’s the story of what happened to end the crazy year that was 2016.

Erin’s day, like most state workers on the 30th, was ending early and she was heading home around 11:15 a.m.  Driving up State Street with relatively heavy traffic for the time, but it was New Year’s Eve eve and that meant an early dismissal for everyone.

At the same time at home, I’m working on a few things around the house expecting Erin to be home soon. We’ve made plans to go see a movie at 1pm. We figured there would be plenty of time to grab some food at the theater and enjoy a movie with the extra time together. Especially since we won’t have that 1:1 time as much once Isabella has made her arrival.

It’s now 11:30 and I’m on the phone taking care of a bill payment issue and see three straight calls from our friend Stacy, Erin’s co-worker. Figuring something is going on, I quickly get off the phone and call Stacy back. I’m out the door and in the Jeep before she even told me where they were.  Erin has been in an accident and the Police, Firemen and EMTs are all either on their way or already at the scene.  I find out that I’m heading to 16th and State Street and make my way there as quickly as possible.  Stacy reassures me that Erin is fine and the accident is minor, but in my head (and I’m sure any other expecting parent would agree) there is no MINOR!

I arrive at the accident scene and park. I notice one of the responding officers is a guy that I went to grade school with and played on the same peewee football team. I think to myself, “Ok whew, at least there is someone I know here and if I need anything he’ll be able to help me.” They seem relaxed and I look around to figure out exactly where Erin’s car is. He directs me over to Erin’s car.  Erin is just sitting in the driver’s seat sipping on her water and looks up at me, “I’m fine, it wasn’t bad. I just want them to check on the baby, but I’ve felt her moving around.”  WHEW! Ok. My heart has now resumed beating at a semi-normal rate. The EMTs come over and take Erin to the ambulance. They check her out but still recommend that we head to the hospital for the doctors to check everything out.

I tell her I’ll meet her at the hospital and they are off. By about 12:30 they’ve already gotten her back into an ER room and the waiting game begins.  With no apparent injuries we likely got moved to the back of the line in terms of service at the ER.  They’ve checked her blood pressure and they used the doppler to listen to Isabella’s heartbeat and everything sounds good…but we are waiting for a doctor to come in to check her out.

And we wait…and wait…and wait….it’s now about 3pm and they’ve come in once again and taken Erin’s blood pressure and checked Isabella’s heartbeat. Again, all sounds good but still no doctor.  About 3:15 the ER doctor comes in, look at us, asks a few questions and then says, “I think we are going to send you up to Labor and Delivery for monitoring just to make sure everything is good.”

“Why couldn’t you have done that three hours ago?” we both said at the same time after the doctor had left the room.

We got up to L&D and they once again check Isabella’s heartbeat with the doppler. It’s again all good sounds. However, this time the speaker is set little louder and we’ve figured out that Isabella is a bit of a drama queen when it comes to hearing her heartbeat.  She tries to kick the doppler wand off of Erin’s stomach every single time.  (Even when they hooked up a doppler to someone else for monitoring in a nearby room and we could hear the heartbeat she was still trying to kick it away.  It’s those little things that put a smile on my face.)

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By about 4pm they hooked Erin up to the fetal monitor just to ensure that there are no contractions to be worried about. At the time they told us it would be about an hour so I went down to get us some food while Erin downed about a gallon of water since the ER didn’t give her anything at all to eat or drink.

We figured we would make the most of our trip to the hospital and enjoyed some food from the “Hidden Door Cafe”. It’s sort of a Knode family tradition that if you go to the Harrisburg Hospital you have to eat there. Hell, that’s how Erin’s cousin let the family know that their baby had arrived in December. We all got a text message that simply said, “Anyone up for some corn nuggets?”

Finally at about 6:15 pm we got the all clear and began to make our way back to the Jeep.  Erin’s car has only minor damage but it’s truly the fear of the unknown that made the 30th so crazy for us.  What was supposed to be an extra 4 hours together was still spent together, but not in the way we had planned.

We’d like to take a moment to thank everyone who has been reading this blog and following along our crazy journey. We’ve had some amazing support and we know that support will only grow stronger as the journey continues.  Thanks everyone!