Ben is one and sports a new palate!

THIS guy:

is one. One. ONE!!! I want to shout it from the roof tops. He did it! We did it. God is so, so good.

"Aw shucks ma, don't make such a big deal of it..."

Here is the meaning of a year in Ben's life: 

Here is the meaning of a year in my life:

God has used this year to teach me a lot about beauty out of ashes, hope out of darkness, and the fulfillment of His promises. This year was a whirlwind of emotion for me. Lots of it so joyful and lots of it pretty heart breaking. That picture was taken the morning before the day of his palate surgery. I was feeling pretty stressed/overwhelmed/scared and I decided to go running, early. And through the misty, foggy, cold morning I noticed that Spring was pushing through. Finally (!) - after all this ice/cold misery. This was a message I desperately needed that day.

We haven't had too much birthday celebration for Ben. He hasn't even had a cupcake. He did get some presents/love from Tia, Mimi and Abba and Nana. It was just too hard for me to get on the celebration bandwagon when on his actual birthday he would have surgery. When we celebrate I want it to be for everything he has overcome this year - and he wasn't quite done yet. So the party is still coming as we wait for his recovery to be all finished. 

Here is a throwback to his first surgery. This time everything looked familiar and there was less anxiety on my part about where we would be when.

Morning of! We arrived by 7:30 I think - actually we were late because that is how I unfortunately roll -  but we still had a little bit of waiting before they took us back.

In the "holding" room Ben did AMAZING. He had his last bottle (of all time) around 12:30am and nothing since then but he wasn't fussy. This was a direct answer to prayer because I just wouldn't have been able to handle Ben being upset because he was hungry. He wasn't upset about anything and let the nurses take his blood pressure, pulse ox, tempature, anything they needed happily. He laughed and even gave some high fives. People were coming in to meet with us (anesthesiologist, PAs, etc.) and I just felt so. much. peace. This was the time that was really hard for me last time because it just gets overwhelming seeing how many people are going to be working on your baby. But peace prevailed the whole time. Even when a random Dr. came in and start talking to me. He was expliaining the surgery and was like "I think we met in the clinic." But I had NO idea who he was! And when I asked ("I'm sorry, but... -who- are you!?") he said, "Oh, I'm Dr. so and so's fellow." But he said the other surgeon's name (there are two that work in the team we belong to and the one he said wasn't ours) AND I had no idea what a fellow was. So basically, I was so confused. But as it turns out he works with our surgeon and I didn't mind so much.

When it was time for Ben to go back we walk to the doors and hand him over to the nurses to go back to his room. Ben, who often cries when he sees me but I'm not holding him, didn't fuss one bit when I handed him over. So! Grateful! for this! And so we began the almost 3.5 hour wait to get him back. 

We ventured to have breakfast and then open our "love bomb" that Amira had put together with lovely notes and giftcards from a bunch of family/friends. It was such a sweet way to pass some time and it felt like a giant hug from all my favorite people! Then, coffee in hand, we went a walking and stopped in front of this guy. This amazing "art" is an interactive sculpture that has balls that flow through a series of pathways that make the tin animals move/make music/etc. We watched it for a long time and realized there is a pathway that only comes about when 7 balls back up. Backing the balls up is tricky though because there are 4 different pathways each one can travel from the beginning and if they go another way they can get stuck somewhere else where they need a certain number to back up before dropping all out. And there are two knobs you can turn to release balls stuck in other places and one of the knobs links to the path where we needed 7 balls to line up. So, if a kid (or grown up) comes by and releases the balls you have to start all over. This entertained us for about 1 hour and 30 minutes. That is how long it took for the balls to stack up and take the extra path. We were STOKED when it finally happened because we had invested lots of energy and expectation into it. We never mentioned what we were doing to families or people walking by because who would tell a sick child not to watch all the balls drop down!? This was our first "date" in a long, long time and I really feel like it reminded me of all the reasons I love Matt: wholeheartedly involving himself in random activities I think up, equal excitment over silly things and contentment in simple entertainment. It was a perfect way to get my mind off what was happening to my baby on the floor below.

Except for that time when we saw someone walking towards us and I said, "Ha, that man looks like Dr.  Our Doctor." -- which I should mention that Matt and I have had a joke, both last time and this, that we would be in the cafeteria and see our Dr and it would be a funny awkward moment. Like he just -tells- people he does surgery but really he is out getting some breakfast tacos. - Anyways, he is getting closer to us (we are between a breezeway and the front door) and I say, "Matt that IS! Dr. Our Doctor!!" And there he is, in the flesh - living out our joke. Except he was on the phone. So we are just kind of staring at him and he sees us and approaches us so non chalently becuase that is 100% how he is. And he's like "hey guys. things are going great. just have a little break here.." it was so hysterical to us because our joke came true. What are the chances of that!? Later we found out that there are periodic breaks during the procedure because they have a device holding Ben's mouth open and they take it out to relax the mouth/protect his tongue. But we didn't know that then and it was too perfect. 

The hospital was shooting a fundraising video and so an executive had been nearby us the whole time and she approached us saying that she was glad we were enjoying the art so much. We told her about what we were trying to do and she was there when it FINALLY happened. She insisted on taking our picture so there we are - there was real celebration. 

The buildup

The "extra" path

This surgery took longer than the lip repair - I'm guessing because of the breaks from the mouth device and because while his lip was a unilateral cleft, his palate was bilateral.  Around 11:30a they finally told us he was done. They call you back to tell you they are done and then wait while the kids wake up in the pacu. Our dr told us he had found a tooth in Ben's palate (this happens sometimes to cleft babies, it can be an "extra" tooth or could also mean he may be missing one of his other ones. Only time will tell. Or an x-ray. But I'm fine with time.) so he handed it to us with a dollar for the tooth fairy. Well done Mr. Dr. sir - becuase you just warmed my heart and probably went outside of protocol to do something to make us smile. That's what I love about people - when they do things on a person to person basis rather than protocol.

And finally we could see our baby!! After the lip in the pacu Ben was fussy and in a nurse's arms when we went back. This time he was sleeping pretty peacefully and he looked SO big in that hospital crib! 

Happy birthday Ben! Must have been a good party....

I didn't want to wake him up so we just watched next to him. He had a little bit of a rough time with his O2 stats - not taking deep enough breaths and so they put him on oxygen. He kept coughing and wheezing, waking up and fussing and then turning purple/blue (really, not my favorite thing to witness). He kept this up in the pacu and he kept doing it in his room too.

sweet little hand!

pacu

made it to the room!

He mostly slept and when he did wake up he was upset and would stop breathing. We had to call the nurses in once and they suctioned him and upped his oxygen and the whole time I was grateful for how familiar I am with hospital settings. I know what should freak me out and what shouldn't and while I don't know how to fix the problem I at least can recgonize if a problem is there!

Still sleeping!

Our nurses were totally amazing. We stayed two nights and both times the nurses didn't care that I slept with Ben. The first nurse brought us a -grown-up-hospital-bed- for us to share. The second night we were moved off the "intermediate" care unit to a normal room and we just shared the pull out sleeper. I seriously feel like the hospital stay went as well as it possibly could have! 

Matt gets really bored when confined to a hospital room for any amount of time. 3 babies and 4 surgeries has taught me this!

CHUBBS!

We took a lot of walks because basically after the first 12-24 hours Ben was much more awake and hated being in the hospital room. The hospital has great courtyards and tons of art and fun things to look at so we just walked and walked and walked. The poor boy was on meds that made him itchy and he would rub his little face raw into our chests. Just like the lip repair it took him about 36 hours before he felt like eating again. I seriously don't blame him! I brought some stuff he really likes - since he could only have liquid/puree - and the evening of the second day he started actually eating some of it.

A nap before heading home!

Nap on the way home!

And so - we made it home to two weeks of arm resistraints and a liquid diet. On March 11 he got out of the "no-nos" and can have soft food - which means he can feed! himself! again. Which he loves a lot more. He knows not to put things in his mouth because when he starts to he stops and says "nuh-uh." Heart break - when he got to have soft food and feed himself again Matt put food on his tray and he started to eat it and then said, "nuh-uh. nuh-uh" But he was quickly convinced otherwise. 

The main issue after his surgery was that sleeping was impossible because he had to wear no-nos and he couldn't have his FROG. 

making it work

wee hours. like a newborn.

But as soon as we could take them off - the boy slept like a champ again. Poor little man! 

immediate frog reunion!

And really, the only other hard part was the fact that Matt and I both got really sick! Some sort of horrible stomach flu - we each spent a day where we couldn't get out of bed (thankfully not the same day!) and we each spent a few days not eating real food - which was pretty miserable overall. A rough two weeks but sort of nice that it happened all at once and then - ta-da - it all get better at once!

Ben at one: says mama, stands by himself, can throw a ball pretty well, crawls like crazy and loves his sisters, his frog and the dishwasher. Has a NEW palate and is so, so cute. 

Ben, words cannot describe how proud of you I am! You are a champion. An overcomer. A big fat chubby fighter. And I couldn't love you more. Thanks for teaching me so much, my baby son. I'm looking forward to getting to know the child you are more and more. While the cleft has defined so much of your first year, it doesn't define your character or your life. So much behind you little boy and - now - SO much to look forward to! You did it! May the goodness of God always be fresh in your mind and heart as you grow and grow. Mwah. Mwah! Mwah! Mwah!!!!