Transitioning back to his normal (but cleft special) bottle was harder than expected. He basically had to learn all over again how to suck from a bottle. It took a few failed attempts before he got it Tuesday afternoon. Boy, oh boy, am I glad that I switched him over Tuesday morning instead of yesterday! He still doesn't quite have it down like he used to, but he has got it enough to eat a whole bottle.
As the title suggests, we went back to NYC for to get nasal stents put in. I had the great pleasure of traveling again with my friend Angela, but sadly didn't get any pictures of her from this trip, so here is one from the first trip she came on.
The early morning started off well with our drive to Chicago and flight to NY. He slept most of the 3 hour car ride. Sadly though, Elijah only slept about 20-30 minutes on the plane. And that was his only morning nap. If you have spent a day with Elijah, you know he can be a very happy baby...unless he gets sleep deprived. And now that he is older, it is harder - scratch that - nearly impossible for him to sleep when we are on the go.
By the time we got to the clinic, he was breaking down. I was so excited to see the clinic staff and, in addition to my excitement for them to see his surgery results, I was also really excited for them to see his hilarious blossoming personality which includes smiling, laughing, lots of babbling, and even more high pitched squealing. (Picture below NOT from yesterday.)
However, he just cried almost the whole time. Poor guy was so tired. It was good to see everyone though and they were thrilled to see Elijah and his new look :) Sandy, a dental assistant, showed me how to set up the taping for the nasal stents. Dr. Grayson and Dr. Olson cut the nasal stents to fit Elijah. They are basically the piece that goes in the nostrils when people need supplemented oxygen. They are fairly soft and flexible so they really don't hurt him. He just doesn't like things going in his nose. Once they are in, he is fine.
As you can see they are attached by tape and rubber bands again. A little tricky to make but not too terrible. The purpose of nasal stenting is to keep the inside of his nostrils from scarring and closing up which happens after surgery. We are one day in, and already the inside of his nostrils look much more open. Amazing. They really know what they are doing at the clinic! They went ahead and cut extra stents the next size up which we will switch to in about a week. Usually they have babies come back a week after placing the stents to do this but they were very thoughtful and wanted to save us a trip.
Afterwards, we crossed the street and went to visit our friends at myFace, the foundation that had made our trips to NY possible. I was equally excited to see them, and their faces lit up when they saw Elijah. They treat us like royalty, and it is so humbling because we are so grateful for all they have done for us. Their amazing photographer Saulo took more pictures of us. This first one is from our last trip before surgery, and they used it to celebrate their 1,000th "like" on Facebook. I just think I forgot to post it before. Then, the second is from yesterday.
We couldn't get Elijah to smile for the pictures. He was just so tired! If you haven't already, check out their website: myface.org. They are an amazing organization that enables families to get the best care for their kids with craniofacial differences.
Next, we had a delicious lunch of gourmet mac and cheese. Before the food came, I tried to feed Elijah and he finally passed out from exhaustion.
He only slept while we ate, and then pretty much cried and/or screamed during the cab ride to LaGuardia and through most of the airport. Poor Angela...at one point, I left him with her so I could wash his bottles and she had to endure the stares of strangers that you get when you are holding a screaming baby in a very public place. He also proceeded to pull out his nasal stents for the first time (and certainly not the last). He didn't do it intentionally, but happened when he was rubbing his face from being so itchy. His skin issues aren't cleared up yet, though they have improved. By the time I got back out there, a man came up to us to tell us that kids find him comforting and offered to hold Elijah. It was weird. I told him, probably not so graciously, that we had it under control. I feel bad because I do think he was good intentioned, but you just never know.
For as miserable as the last several hours had been, Elijah calmed down on the plane ride back. He both ate and slept. Small victories. The airplane pressure caused a small milk explosion from his bottle when I took the lid off mid flight. Sorry to the guy sitting next to me.
The drive back was great, full of wonderful conversation and chic-fil-a sauce. Mmm. Hadn't had that since two trips ago, so was especially enjoying it.
Elijah and I went to the dermatologist this morning. I had an appointment for myself and they were so sweet to squeeze him in. They gave us some ramped up ointment for his skin and are expecting his skin issues (seborrhea) to be cleared up in a few weeks. Until then, Elijah will have a greasy head, so watch out if you hold him! This is how I found him after nap time this morning:
Look Mom, I pulled them out again!
Hard to be mad at that face. Yesterday was really hard. Probably harder than most of our earlier trips because of the sleep deprivation, or I just have forgotten how he was on those trips before. But, God got us through. And here we are today. One day at a time. Leaning on God's grace to get us through. Now, I am off to take a power nap.
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