Travel Day

I am writing this to you as we are en route to where our surgery will be. Is traveling inconvenient? With all this extra gear, yes. But it is so incredibly worth it knowing we have the best team for us and for Gideon. And if you want more convincing that there are no coincidences, we received this recommendation from one of my best friends. See she and I have grown up together but then had babies at very different times. Fast forward to 2023 when I became pregnant with Gideon, and now all my friends are having babies as well. Her little babe was born, unknowingly with a cleft lip. She found this amazing doctor and he cares not only about the patient, but about the family as well. Last January when we found out about Gideon's cleft lip and palate, she was (and still is) such a source of information and support. Isn't that funny how God has all the things set up well ahead of time before we even know? So from her recommendation, we knew right then and there that he was the doctor for us to use.

So here we are. Loaded up. Like really loaded up - we have to bring the vent, vent stand, double of all the supplies for travel settings and home (humidified) settings, extra trachs, cleaning solutions, etc. I know a lot of this sounds like another language, but don't worry. As the days trickle on, we will share more and more what everything is and how it pertains to Gideon. Anyways. It's a lot of stuff. Daniel went out yesterday to get rubbermaid containers to pack everything in. And we can't forget to pack clothes and things for ourselves. I do look forward to door dashing or walking to pickup yummy food that we may not have at home while we have our stay at this hospital.

I also want to take this moment as an opportunity to share how much of a journey it has been to get to this clinic. How often we had to push the date out as our previous hospital stays lasted longer and longer. This is not the FULL story, but a snippet. Gideon was born mid-June. He went to the NICU for feeding for his cleft. While we thought we had figured things out, he then got sick. So the first date was pushed out. Then we had a tentative date and he got even sicker. Date pushed again. July 17 we left NICU and had a date to get to our cleft clinic August 6th. We had a brief PICU stay because Gideon got sick again July 23rd. We were still looking forward to that August 6th date. And then he stopped breathing July 30. A week before we were supposed to be there. This resulted in a 6 week PICU stay. We finally made it to our cleft clinic on October 31. Gideon was 4 months old at this point. Typically cleft repairs of the nose/ lips happens at 3-4 months. Given our extended hospital stays and the desire for some stability, along with our doctor wanting to watch him grow and thrive, the decision was made to not do surgery until February. We made 2 other trips to the clinic and they have been very pleased with his progress, and OK'd his surgery to happen February 6th. It has been such a journey, and not an easy one to get to this point. We know this is the clinic we are supposed to be at, even if it took a half dozen tries to get here. This is how important it is to find a team that is supportive, caring, and wants the best for their patients. Our team called us and just asked how we were. How we were doing. If we needed anything. They don't just care about a paycheck but truly care about the children and their parents. They have listened to us rehash all the things we've dealt with. And they are skilled at what they do. I feel like I can trust them with our baby.

We will check back in in a couple of days with Gideon's post-surgery report and how we are handling things. Enjoying these last few hours of his sweet cleft smile before he gets his forever smile. This feels so big and not a big deal all at the same time after what we've been through. It's like we are really turning the page and stepping into the "Next". The next part of our journey. The next chapter. Our season of Next.

Enjoy this moment at sunset yesterday during Gideon's vent break and matching dad.

#trach #trachventlife #babiesonvents #cleft #cleftpalate #tracheostomy #momlife #medicallycomplexkids #ventilator #foreversmile