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!