What’s Next?

I’ve been a little MIA… we have been super busy enjoying some first Holidays celebrations and preparation. We have also had a lot of follow up appointments. Two and a half months post-op Patrick is doing so well, and we are so grateful for how he is healing.

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Patrick had so much fun in Buffalo making cookies!

I recently shared that Patrick’s cardiologist saw him and we learned that his VSD, the small hole in his heart, has closed. When Patrick was born and we learned that he had a heart defect, I was terrified. I didn’t expect to learn anything about his heart, and I worried about what this meant in terms of complications for the surgeries, and his life. I worried about things like; would he be able to play sports, would he need heart surgeries?

We learned that the VSD would show symptoms while eating, causing sweating and difficulty breathing. His doctor believed based on the size of Patrick’s VSD, that it would not show symptoms, and that it may eventually close completely. We prayed that it would, that he wouldn’t have to experience the added struggles. At our pre-op appointment in September they cleared him for surgery without any additional measures necessary; the VSD was getting smaller and they were so happy with how he was doing.

While the expectation was that the VSD might close, when we got the final clearance, the absolute relief, and joy was overwhelming. I was holding Patrick, hugging him to my chest and I just kept crying. We love his cardiologist, but to learn we can take him off of our list of concerns, no more visits necessary; it was such amazing news! I could still cry of joy thinking about it.

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His cardiologist made him a balloon animal to celebrate!

We also met with his cleft team last week and scheduled Patrick’s next surgery for April.  I have mentioned and spoken to people about this surgery and they’re surprised or confused.. “Another surgery so soon? He looks amazing though.” This surgery will repair what you can’t see, the cleft of his palate. While Patrick looks absolutely incredible, the cleft of the palate is a structural defect, one that makes it impossible to create true suction. Until his palate is repaired he would not be capable of successfully using a traditional bottle, sippy cup, or straw.

Just like the first surgery, we have prep to begin for the second. The biggest piece of prep for us is getting Patrick to drink from an open cup. You will start to see us posting pictures and maybe videos with his cup, and I know the first reaction will be “So Soon?!” It is incredibly early for a baby to begin working with an open cup, most children would start working on a milestone like this around 14-18 months old. However, after Patrick’s surgery he won’t be able to suck for 4 weeks, so the bottle will go away again, this time for good.

After his lip repair, we weren’t able to use a bottle and instead we fed Patrick mostly through a syringe and a special bottle called a tender care feeder. Both were super annoying and he hated them. The goal for this second surgery is that he is weened from the bottle completely and successfully drinks from an open cup. Our surgeon and speech therapy team have talked to us about how important this is, babies who are successful with this have a much easier time with recovery and fewer days in the hospital! We’re very motivated and so far Patrick likes his cup. He goes through the motions of drinking from the cup. We’re working on actually swallowing, I get so excited when he does!

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Patrick with his Reflo Cup

We are so beyond grateful for a few months where we can enjoy a little break. Most of our medical team has cleared us for 2 months, which means January and February will be slow months for appointments and I have never been more excited about the idea of the pajama days! Since Patrick was born we have had an average of 2-3 appointments per week. Some weeks we might only have 1, but others we would have an appointment every day. Thinking of 2 months free is almost inconceivable. Best Christmas present we could have received.

 

Published by mamahouli

I'm a new mom of a beautiful baby boy, living in Long Island, NY. I was sure before I became pregnant that I knew exactly what this "mom life" would be like. I knew nothing. I'm ready to get real about what it's like being a mom, having a child born with a cleft lip and palate, and just trying to figure it all out.

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