Home, and happy!
Today is Sunday, October 28 and G-man must have had a lot of prayers today because it is such a great day. He's been so active - he tells me when he's awake by standing up in the crib and jumping up and down. The neurosurgery team came in at 9am and said his JP (drain tube) could finally come out! That was not a pleasant experience for Grayson, but they said he shouldn't have really felt pain just discomfort. We are SO happy to have that out!
The big news is that Grayson is going home early! He was doing so well that they said they could discharge him today. We were shocked but very happy. It's hard for these kiddos to really get good sleep when they share rooms. Inevitably, babies are babies, and they're not going to get cranky, have medicine, and the all-dreaded vitals at the same time. So they're constantly waking each other up! Seattle Children's is building a new wing, and one of the features is that kids will have their own rooms, which would be awesome for them. Aside from that, though, Gray's experience at Seattle Children's has been so great. Everyone took such good care of him. It's a great hospital for parents too. The cafeteria is so cheap, there are nice calm outdoor areas everywhere, there are 2 Starbucks stores, and also a big resource area for parents where you can do laundry, shower, get coffee, read, get on the computer, or even sign up for a massage (I didn't get to do this, but it sounds awesome).
Time to pack up and get on the road!
The big news is that Grayson is going home early! He was doing so well that they said they could discharge him today. We were shocked but very happy. It's hard for these kiddos to really get good sleep when they share rooms. Inevitably, babies are babies, and they're not going to get cranky, have medicine, and the all-dreaded vitals at the same time. So they're constantly waking each other up! Seattle Children's is building a new wing, and one of the features is that kids will have their own rooms, which would be awesome for them. Aside from that, though, Gray's experience at Seattle Children's has been so great. Everyone took such good care of him. It's a great hospital for parents too. The cafeteria is so cheap, there are nice calm outdoor areas everywhere, there are 2 Starbucks stores, and also a big resource area for parents where you can do laundry, shower, get coffee, read, get on the computer, or even sign up for a massage (I didn't get to do this, but it sounds awesome).
Time to pack up and get on the road!
Saturday night, Grayson got his last lead taken out. No more wires! I'll admit, it had been kind of fun to see his heart rate change depending on his activities. I could tell when he was truly asleep or about to wake up. And when he watched Baby Einstein on the iPad, he nearly flatlined. It was hilarious. It's his zen place. We suspected as much. He still has his JP in, but we safety pinned the bulb to his gown. We finally got to take him down the hall for a walk, which he loved. He traveled with his favorite music (Iz) on the phone. I can also comfort him and put him back to sleep at night without being tethered to the wall! We let him play on a blanket for awhile, and he seemed to be so happy finally being able to crawl around.
Today is Saturday, October 27. Grayson woke up a much happier kid today, and we even got our first smile and laugh. Grayson stole the glasses off my face, which he thinks is sooo funny. We even got to hear the classic Grayson cackle... "ah-ah-ah-ah". The plastics team and the neurosurgery team both think he looks great, and is doing awesome. They were able to take out almost all his leads, and so he only has one lead left attached to his toe and of course the dreaded drain tube coming out of his head. It was great timing, since he has decided he's done with laying down and he finds all these wires and tubes really fascinating. Except the one in his head because I'm pretty sure that one hurts.I think Grayson's head already looks so much better than it did yesterday. They're keeping the drain tube in for now, because it seems to still be pulling quite a bit of fluid. But once that's out, his forehead will look a lot more normal, even with its increased size. He received a present today from his Aunt Meow (Kitty). He snuggled right into his new dragon and we put the Eeyore balloon on his crib. I think between the stuffed animals, prayer chain, pictures, and the quilt made by a Cranio Care Bears donor, we have the most cheerful colorful crib on the floor!
I'm so proud of my little man. He's recovering so well, and trying so hard to be happy even when he's hurting. He had a pretty tough morning after he received his meds late. It took a really long time to get him back on track, but because he was having a hard time he got to see a therapy dog! A volunteer brought in his 10-year old Golden Retriever named Pie (short for American Pie because he was born on the 4th of July). Grayson stopped crying, stared at Pie, and started talking to him. Which in Grayson language is (uhh. Uh. Uh. Uh.) I almost cried, it was so cute. Grayson played with Pie's ears a little bit, and we were able to give him a bottle after they left.
Today is October 26. At 7am this morning (about 12 hours after surgery), Grayson got to leave the ICU/PACU and come up to the general surgery floor. He had his own room for awhile, but now he's sharing with another baby who looks to be about his age. The other baby is just waking up from anesthesia at the same time that Grayson had just fallen asleep. Well, I suppose they can have conversations with each other in baby language (otherwise known as "Wail") for the next couple of days.
The doctors say Grayson is doing really great, and being out of the ICU so fast is a good sign. He's trying to be active already - when his morphine was running out last night, about midnight, he flipped himself to his tummy, crawled up the bed and over to me where he stood up for me to hold him. Crazy baby. We let him sleep on his tummy for the rest of the night, which he seemed to like despite the fact that his head wasn't elevated. Today he's been cuddly and grumpy. It could be that he's more alert since we've moved him from the morphine to oxycodone and tylenol. He's also had about 8 ounces of formula today, which is great. He wants to be held a lot. I am having flashbacks to when he was a newborn, and he only had three stages - eating, crying, and sleeping. Holding him is awesome, but also a logistical feat - not only does he have stitches from ear to ear, but he also has cords coming out of every limb (2 foot IVs, monitors on both hands) and also the drain coming out of his head. That will probably come out tomorrow. Well, who can blame him for being grumpy right?
I prepared myself for a whole different baby, and I'm glad I did, but Josh and I agree that he still looks like Grayson. Well, a big, bumpy, lumpy-headed version of Grayson :) If I had any doubts, they were gone the minute he started getting all feisty with us ("Oh that one trying to put me in a choke hold? Yep, he's ours"). God Bless all those cranio moms who shared pictures with us of their babies post-op so we knew what to expect. I'll share pictures too, but I'll probably wait a couple of days. The drain tube under his forehead is kind making him look kind of like Frankenstein, and he still has a lot of blood around/in his mouth (great for Halloween... or nightmares). His CT scan looks completely surreal - there's a lot of bone missing and rearranged, which explains all the swelling. But to us, he's still perfect.
The doctors say Grayson is doing really great, and being out of the ICU so fast is a good sign. He's trying to be active already - when his morphine was running out last night, about midnight, he flipped himself to his tummy, crawled up the bed and over to me where he stood up for me to hold him. Crazy baby. We let him sleep on his tummy for the rest of the night, which he seemed to like despite the fact that his head wasn't elevated. Today he's been cuddly and grumpy. It could be that he's more alert since we've moved him from the morphine to oxycodone and tylenol. He's also had about 8 ounces of formula today, which is great. He wants to be held a lot. I am having flashbacks to when he was a newborn, and he only had three stages - eating, crying, and sleeping. Holding him is awesome, but also a logistical feat - not only does he have stitches from ear to ear, but he also has cords coming out of every limb (2 foot IVs, monitors on both hands) and also the drain coming out of his head. That will probably come out tomorrow. Well, who can blame him for being grumpy right?
We got a page at about 7:00pm that Grayson was out of surgery. The surgeons sat down with us to tell us that everything went really well, and to tell us what to expect next. The craniofacial plastic surgeon said Grayson's face was really small! The smallest he had ever seen. So, he had to widen both the forehead and the orbital bones quite a bit. There didn't appear to be any pressure on his brain, but it was really really tight right between his eyes sort of where the bridge of his nose is. Grayson's brain should start filling up his new head pretty quickly.
We're in the recovery room now, because the ICU is full. There isn't anyone else in here though, so it's kind of like having our own private gigantic room. Grayson also has an ICU nurse here with him 24-7. We got to see him for the first time around 8:30pm. He looks pretty strange. Not only is his head extremely wide, and swollen, but he has a drainage tube running across his forehead under the skin, and coming out below his left ear. Even when he sleeps, one eye is open, while the other is mostly shut. Hard to describe, but I'll just say he looks really strange, and you probably don't want to see a picture. Not until some of these tubes come out anyway. He still looks cute to me, though. I can see the inside corners of his eyes for the first time! He'll look a bit overcorrected for about a year, they say, but I can already tell that his new head is going to look awesome eventually.
He whimpers and cries out a lot, but they're keeping him pretty comfortable with morphine until he can take Tylenol. I got to hold him for a bit too, which was really great. He's back in his crib/bed now and hopefully he'll get some good sleep for a couple of hours. I taped his prayer chain from Cranio Care Bears at the end of his crib, which is so cool. Shelby from CCB came by to deliver the most wonderful awesome care package, and to provide some company and comfort while we waited this evening. Thanks to all for the support and prayers today.
We're in the recovery room now, because the ICU is full. There isn't anyone else in here though, so it's kind of like having our own private gigantic room. Grayson also has an ICU nurse here with him 24-7. We got to see him for the first time around 8:30pm. He looks pretty strange. Not only is his head extremely wide, and swollen, but he has a drainage tube running across his forehead under the skin, and coming out below his left ear. Even when he sleeps, one eye is open, while the other is mostly shut. Hard to describe, but I'll just say he looks really strange, and you probably don't want to see a picture. Not until some of these tubes come out anyway. He still looks cute to me, though. I can see the inside corners of his eyes for the first time! He'll look a bit overcorrected for about a year, they say, but I can already tell that his new head is going to look awesome eventually.
He whimpers and cries out a lot, but they're keeping him pretty comfortable with morphine until he can take Tylenol. I got to hold him for a bit too, which was really great. He's back in his crib/bed now and hopefully he'll get some good sleep for a couple of hours. I taped his prayer chain from Cranio Care Bears at the end of his crib, which is so cool. Shelby from CCB came by to deliver the most wonderful awesome care package, and to provide some company and comfort while we waited this evening. Thanks to all for the support and prayers today.
We were given this strange historical artifact to give us updates throughout the day....
I think I remember how to use one. If not, I'm sure there are instructions in my DeLorean. We already got one page to tell us that the surgery started at 2:30, and everything was going well. I'm happy that we have a link to our little man.
We stayed at the Hyatt Place downtown, which is an awesome hotel not only because the rooms are huge and there's free (hot!) breakfast, but also because they have a shuttle that runs within a 1-mile radius of the hotel. We took advantage of that, and took the shuttle down to Pier 57 to ride the "Great Wheel" - Seattle's new tourist attraction, a giant ferris wheel that sits on the edge of the pier and extends 40 feet over the water. We all thought it was pretty cool.
We went to Red Robin for dinner next, where I took the liberty of ordering the biggest dessert they had after dinner - Mountain High Mudd Pie. It's kind of like Paradise Pie for you Hawaii folks. I'm pretty sure they just filled a mixing bowl with ice cream, put more ice cream and crust on top, flipped it over and cut it into fours. Amazing. Grayson really liked the car game at Red Robin - I wish we had one of those for our house!
For you cranio moms, I took one last picture of Grayson's head this morning. You can see his trigonocephaly really well. For those of you saying "trigono-what?", trig means that his head is triangular shaped because his forehead was unable to grow any wider from birth. So as his brain grew it just grew toward the back and sides where the sutures were open and able to expand. Despite the fact that I don't want Grayson's face to change AT ALL, and I love him just the way he is, pictures like this remind me that he does need this surgery, and we're doing the right thing. Sometimes I forget that he has trig because he has so much hair!We got to the hospital around 9am. Grayson had pre-ops and labs scheduled in the morning and then surgery check-in at 11am. He didn't cry when they drew his blood. Didn't even flinch. I was super impressed (both with my son, and with the person who drew his blood!) I sure hope they don't need extra anesthesia to put down our tough little rhino... "we're gonna need a bigger boat".
For the second time, we checked in at the surgery center, and began the waiting process. And... it turns out once again that they have an ICU bed problem. But we weren't turned away. He just won't be spending the night in the ICU after all, but in a recovery room, until a bed opens up. So instead of being checked in at 11:00, they weren't able to take him back until 1:10pm until they got it all sorted out. We got more cuddle time though, so I was okay with that. He should be done sometime around 7:10 tonight (one hour to put him to sleep, another 5 for the surgery). I can't say enough wonderful things about the Seattle Children's staff. Everyone that interacted with us was so great with Grayson, and so thoughtful and considerate of us. They even brought us lots of toys to play with while we waited in the room, although after 7 hours without food or water, only Baby Einstein on the iPad was going to cut it for G-man! We changed him into his hospital gown, and they apparently only have big kid socks, but I put them on him anyway. They were like big red legwarmers :)
The last 10 months have been wonderful and amazing, but there have also been times (emotionally) that have not been easy. But by far - the hardest thing we have ever had to do is to hand him over to the anesthesiologist today. Grayson was just about to fall asleep. We were standing and rocking, and he was listening to Iz on Josh's phone. He was super cuddly, and resting his cheek on my cheek. I had to give him up, and of course he starts bawling. The nurse (awesome like the rest) told me (now in tears) that he would go to sleep really fast because he was breathing so deeply. I thought that was nice. Nothing painful happens while he's awake - no IV lines, no poking or prodding. And once he's asleep, he won't feel a thing. He won't miss us, and he won't be hungry or sad. But we sure miss him already.
We went to the zoo (which apparently Grayson found boring despite the awesome Grizzly Bear), toured Seattle's infamous underground city, and took a ferry to Bainbridge Island for a wonderful lunch at the water's edge. Most importantly, we spent time together laughing and exploring as a family. We didn't expect to have happy memories that weekend, and we soaked up every minute of it.
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