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.

 

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4 thoughts on “Overall Everything Looks Great…

  1. Thank you for sharing! It is really, really tough to hear that something is “wrong”. But it will make you so much stronger parents! My son was in NICU for a few weeks and required two surgeries before he was 5 months but just being in the NICU knowing that eventually we would be able to take our son home was an incredible blessing. We saw the priest in there everyday doing baptisms and last rites so things could be WAY worse. I’m praying that everything else goes smoothly for you guys! Your daughter is incredibly lucky to have parents who love her so much 💕

    Liked by 1 person

  2. Your beautiful Isabella Will Be Loved a hundred percent because she is Isabella. Her journey and yours may be a little more difficult. I am positive you both will love her and treat her as Isabella not her palate issue ..that is a cosmetic and medical issue that can be approached and dealt with….She will still grow up loved, confident and beautiful …..You will make sure if it. Embrace every moment….They are each so precious. Her challenging surgeries and healing will be but a dim memory to her as she will be so young for most of it… The people who surround her with love… will help her become who she is to be. She chose you for a reason. Much love and happiness to your beautiful new family my friend.

    Liked by 1 person

  3. Great blog Matt & Erin! We really enjoyed meeting you two and are honored to be taking this journey with your family. Isabella is a very lucky little girl and has been blessed with amazing parents! I’m here if you need anything!

    Liked by 1 person

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