Cleft Surgery #1

What a whirlwind these past 2.5 days have been. Gideon's surgery was a success - which we had no doubts. What I did not expect was the outpouring of love surrounding us and our family. I know we are loved, but this was above and beyond. And we appreciate each and every single one of you. I have so many thank-you cards to write, honestly I've had them since my baby shower and then the past 7 months happened and writing those have certainly taken a back seat. But thank-you, and know that we are anxiously awaiting every moment to spread the same kindness shown to us to others.

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Cleft lip and nose surgery - technically it is stitching the lips together and performing a rhinoplasty. Though this is a very mild rhino, he will have the option to have a more permanent one when he is in high school. This is the first in a series of surgeries for Gideon. Every cleft baby is different. But in our case this is what the surgeries will look like:

Cleft lip/ Rhino - usually 3-4 months in age, we did ours at 7 months given his extensive history. Gideon has a bilateral cleft lip and palate which means it affects both sides. The recovery time is honestly quick though sitting here watching him be swollen and in pain is very hard. And he's not able to touch his face. Which he greatly enjoys doing. We came home 24 hours after surgery, which did include an overnight stay.

Cleft palate - usually 12-14 months old. We don't have a surgery date yet but it will be this summer. This recovery will look very similar. He has a bilateral cleft (complete on one side, incomplete on the other) and will need a palate repaired. This will be a soft palate that will need "adjusting" a couple of times throughout his childhood. We will expect the same - hours long surgery, 1-2 days of inpatient recovery, and then home.

Follow up surgeries for Gideon specifically (and a lot of clefty kiddos) is 1-2 surgeries between ages 5-8 depending on growth and development. Gideon will need jaw work and palate work and teeth work.

Rhinoplasty/ Additional palate and teeth work - This will happen in the high school time frame age 14-17, again depending on growth.

This is why it is SOOO important to find a team that can really work with you and care about you and your child and family. They will be following you for your baby's entire childhood.

Which brings me to surgery day. We arrived at the hospital at 5:30AM, which meant we had to get up around 4ish, and of course neither of us really slept. We were exhausted and I had a dry throat (and still have somewhat of a sore/ irritated throat from that). We get all checked in, Gideon had a weight check (14.8lbs! Let's go mama milk!), and go over what is happening again and again. Gideon of course was all smiles and I'm just so thankful for a few more good clefty smiles before his face is changed. They took him back at 7:30 and just before they did, our doctor sat there and prayed with us and over Gideon and not just for the here and now but for the man of God he will become as he transitions through child and adulthood. It was beautiful.

We were called every hour with a checkin and everything went smoothly. He was done close to 11AM. We had a brief chat with our surgeon and an hour or so later were able to see him. He of course was still on anesthesia and wasn't unhappy yet but that definitely settled in a few hours later. It is so tough to see your baby in pain and the few things he loves (like his thumb and borrowing his face up against you) yet can not do. We made it through the night - Gideon sleeping on Daniel in a chair for half of it. Of course the techs always want to do vital signs right when they go to sleep. I caught it this morning and turned them away because we had just gotten him calmed down. Remember - you can turn anything and anyone away at any time. I know they always say to be your own advocate, but goodness if this experience has taught us anything is that you MUST follow behind everyone and every detail and ask questions. We did not have any negative experiences this time, except for those 4am cares. Yes, they can wait to change the diaper.

We were discharged around 10:30 this morning and packed everything up and made it home a little after 1 (there is a LOT to pack up). Thankfully we were able to have a nurse meet us here at home and provide nursing until 6 today! This has allowed us to rest, unpack, do chores, etc. He is very pitiful going from napping to in pain and confused to finally settling back down. This will be managed and we will get through it, it's just going to be a tough few days.

Some fun things to note from surgery day - it was slated to pour down rain Thursday and Friday. We were afraid that walk in the dark to the hospital (much easier than loading everything up in the car and driving) would be rainy. It started pouring at 5AM and stopped at 5:20AM when we started to head to the hospital. God says don't worry about these things! Also Thursday night there were tornado warnings (yes... near the mountains and in February) - it was fine obviously. But they still had to take protocols and turned Gideon's bed around and head everything set to move him if it got worse. 10 minutes later the storm had passed and we moved everything back around. So much excitement haha.

Other things we did while admitted. We met with a pulmonologist there at the hospital to have them familiar with Gideon and be a second opinion should we run into more issues with our current practice (we are SO happy with the doctor we have now but, the practice as a whole needs some help). She had a similar philosophy to our current pulmonologist and we really appreciated that. We met with speech therapy again, in case anyone doesn't know, speech therapists also work with feeding therapy. I really like talking with her and her involvement with Gideon's care. I now have her number to connect her with our in-home therapist whenever that starts for feeding and speech and we can get everyone on the same page. This is so exciting!

Whew. That was a lot. I'm sure I might have missed some details. Enjoy a few photos here of our Mighty Warrior pre and post lip repair. We love that clefty smile and we are so thankful to have been blessed with it 7.5 months.

PS - We are extremely sleep deprived. If I've misspelled something or used incorrect English, forgive us :)

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