Cameron's Craniosynostosis Surgery

Hi all! Cameron's surgery went perfectly! He was such a little trooper and is now recovering nicely in the PICU. Here's the overview (scroll all the way down for pics)-

We arrived at Phoenix Children's Hospital at 7:15am for a scheduled surgery at 9:30. Poor Cameron hadn't eaten since 3am, so he was a little cranky. We sat in the admitting waiting room until around 7:45, then it was off to the surgery waiting room. Fortunately, we had our own little room to wait in, with a TV and a new bear waiting for Cameron! Well, they actually let Mike pick out Cam's bear from the 'brave little patient' toy bin. We found out our doc was stuck in traffic, due to a huge crash on the 10. A robbery suspect, who was fleeing the police, got on the freeway going the wrong direction and hit a semi head on. So Mike grabbed some coffees, Cameron got into his cool Koala Rocketship hospital gown (he wasn't too excited about the purple color), and we waited. And waited, and waited. Ugh, waiting with a hungry baby in a hospital gown is no fun! We kept him entertained though. Mike played rocketship and we had adventures with the new bear. Then the Chaplin stopped by, chatted with us for a few, and said a prayer with us for Cameron. It was very calming and relaxed us a little. Finally, just before 11, the doc arrived. He came in and chatted with us, then the anesthesiologist came in, then we were finally off!

First update came at about 12:15. Lines were in, they were officially getting started. Next update will be in an hour. So we head down to the cafe and get some lunch. Scallop salad for Mike (really, at a hospital cafe?), and I had, of course, the pizza. Can't ever pass up pizza.

Next update comes at 1:15. They were really amazing about actually updating us when they said they would. The nurse is smiling a big smile, phew. That's always reassuring. Cutting is done, everything is going well, next they will start molding and piecing it back together. In the meantime we watch some hilarious Chappelle Show season 2 clips to keep our minds occupied. "I'm Rick James!" Thank God for comedy and portable dvd players. :)

2:15. Our friendly nurse is back again. This time I am in the NICU pumping, ugh. Mike chats with her. They are almost done piecing back together, then they'll sew him back up and the surgeon should be out to talk to us in an hour or so. Now we're really getting nervous with anticipation. How will he look? Will his expressions be different now? Will his eyes look smaller with his new brow bone? Will his cute chubby cheeks appear smaller? Most importantly, how will he feel?

3:30ish. Finally, we see the surgeon! Everything went well, Cameron is on his way to recovery, we should be able to see him in exactly 10 minutes and can talk about the surgery more then. We set our timers on our phones for exactly 10 minutes then go to the frantic task of calling, texting, emailing, packing our stuff up, going to the restroom, etc. Just as the timers were about to go off, the surgeon cruised back by and offered to walk with us to the room. He warned there would be swelling. Lots of swelling. But for at least this first hour or so, he should look somewhat 'normal'. Take a mental picture of that, he said. Otherwise you will focus too much on the swelling and forget how great he really looks!

We get to the room and an xray tech had beaten us by about 5 seconds. So we have to wait in the hall, peeking in the window, while they take an xray of his lungs. Just to make sure they look ok after the anesthesia. Hurry up, I want to see my baby!!

Cameron looks great! Definitely gives me unwanted flashbacks to the NICU with all the cords and how out of it he seems. He is opening his eyes a little, but is still very sleepy. The swelling is already beginning, although we get a good idea of his new 'look'. Still cute as can be!

The next few days will be the real test. Although we got through the scariness of surgery, we now have to deal with trying to comfort our confused little angel, who we can't pick up. The surgeon tells us that compared to his 'fundo' (the surgery he had when they wrapped his stomach, and put in his g-tube), this is nothing. As far as pain goes that is. He said the main frustration comes from not being able to see. *Most* kids who have Mytopic synostosis will have both of their eyes swell shut for 24-48 hours after the surgery. He said that is what causes the most 'pain' because the poor little guys have no idea what's going on, they just suddenly can't see anything. Think of how scary that would be for you or me!

So for now, we are all doing great! And a few days from now, we'll be doing great again. In the interim though, we may have a little rough patch. Cameron is one tough cookie though, and at this point, I think his parents are too. It doesn't make it any easier though.

We greatly appreciate everyone's prayers, support, kind words, and gestures! And a special thank you to Scott and Caroline for the temporary home base!! They live blocks from the hospital, while we are about 45 minutes away (without traffic). Mike is crashed out there as we speak, since only one parent can stay overnight in the room. Speaking of which, this parent probably needs to get some shut eye while she can. I have a feeling tomorrow is going to be a looooong day.

Check out today's pics, and make sure to read the captions. They really tell the story. :)

Before-

After-

Prayers for Cameron

Hi all! Cameron's big craniosynostosis surgery is this Wednesday. Please keep him in your prayers. We truly feel that he has done so well due in part to everyone's prayers.

We'll post an update late Wednesday afternoon or Thursday. Also, we have posted a couple fun new videos on youtube. Cameron vs the Claw, Cameron talking, Cameron in the pool with dad, and Cameron in the pool with mom.

Thanks!!

Our Happy Baby and Another Surgery!

Greetings all! I know it' been a long time since we've updated this blog with any news. We have been busy busy busy. I don't think we ever realized how many specialists existed! It seems every week there is at least one (if not two or three) doctor appointments and/or procedures/tests. Add to that the therapists that come to the house 2-3 times a week and it makes for a full calendar. Fortunately, *almost* everything has been positive so far, with just a lot of follow up appointments to make sure he is on track.

Just a few of Cameron's exciting medical updates:

• He is off his oxygen during the day, and we hope he will be off it soon at night.
• No more wedge/sling positioner in his crib! He's sleeping on his back with NO apnea!
• He is down to only one med a day. When he came home, he was on 4.
• He is still gaining weight like a champ, and almost gaining too fast. :) We found out his pump was calibrated wrong and has been giving him a little extra food at each feeding.
• We are slowly weaning the nighttime continuous feeds...finally!
  

And some exciting developmental updates too:

• He was finally approved for state funded services, so he now gets physical, developmental, and speech/feeding therapy every week.
• He really loves playing with his toys, moving them hand to hand, bringing them to his mouth, and throwing them.
• He has amazing head control and loves to sit up in his bumbo, or in our laps and look around at stuff.
• We get huge smiles all the time now, they were few and far between for while. Still working on that laugh, but you can tell he's trying to laugh and he'll make little sounds.
• He talks almost as much as daddy. :) He is just a little chatterbox and loves to tell us what's on his mind.
• We're thinking that rolling from back to tummy will be coming any day now. He has really been getting some momentum rolling side to side.

Overall, Cameron is a very happy baby. He loves to play and smile and talk. He doesn't seem to notice or care that he has any medical issues. Needless to say, that makes all of this a lot easier for Mike and I to handle. It's hard to be upset about the hand you've been dealt when you have such a happy little guy to play with and cuddle.

Our biggest challenge now is Cameron's upcoming surgery. He has recently been diagnosed with a condition called metopic craniosynostosis (also known as trigonocephaly). Mike and I noticed the ridge on his forehead from the time he was in the NICU and everyone always seemed to think it was 'normal'. We had asked about it at several doctor appointments and the answer was always something like, "yeah, babies can have weird shaped heads, it's not abnormal." Well, fortunately Mike was very persistant about it and finally at a pediatrician appt she referred us to a neurosurgeon. It took the neurosurgeon about 1 second to look at Cameron, and say, "oh yeah, he definitely has craniosynotosis. We'll need to operate to correct it." His surgery is scheduled for May 20th and it is a pretty gnarly surgery. He should be in the hospital recovering for at least 4-5 days. Fortunately, this should be the only surgery he needs and we have one of the top surgeons in the valley doing the surgery. He is actually the director of Neurosurgery at Phoenix Children's hospital and on the Phoenix Top 100 Docs list. We are confident the surgery will go well, but I think this scares us more than anything else so far.

Please keep saying prayers for Cameron! Hope you enjoyed the recent pics on picasa.

New Pictures up on Picasa!

We posted a lot of new pics on Picasa! I will also update everyone on all of Cameron's exciting developments shortly. Trying to find the time! :) http://picasaweb.google.com/hughesfamilyaz

Welcome Home Cameron!

Well, it's been almost a month since I last posted. A ton has happened since then and I just haven't been able to find the time to update the blog. Cameron's surgery was a success, but his recovery was a little rough. He was back on the ventilator for quite a few days and then pulled the g-tube out after about a week! He finally has his 'button' now and it seems to be healing nicely. His scary death spells have stopped, but as a result of the surgery he isn't able to burp as easily and has become very gassy (read- fussy).

The most exciting news of all though is that our little Cameron is finally home! He was discharged Tuesday of last week, after an excruciating 115 days in the hospital.

**Note- the above was started on 1/28. Today is now 2/13. I have been trying VERY HARD to update this thing, but for some strange reason all my free time seems to have disappeared. :) Continued....

So Cam came home on 1/20, the same day our new president was inaugurated. Who knows, maybe Cameron will be president one day and tell the story about the day he came home. It has been a whirlwind three and a half weeks with an average of 3 doctor appointments and/or nurse visits and/or AZ case workers coming by the house. Every outing is an adventure to say the least.

Cameron is doing great so far at home. He seems to be adjusting to home life well, although he does not like to sleep during the day for more than 15 minutes at a time. Complicating matters, he still has some 'positional' apnea whenever he starts to doze off and happens to be laying flat (or in a swing). At night he sleeps pretty well and we have this nifty wedge and sling positioner so he can sleep elevated and on his side. He'll sleep for 2-3 hours straight at night, mostly just get up for diaper changes which is nice. He is still on his oxygen, gets his food through his 'g-tube', and is monitored for apnea by a pulse oximeter. Thankfully, his pulmonologist let us ditch the apnea monitor. That thing never seemed to work right and was just one more set of cords to get tangled with everything else.

As for Mike and I, we are so thankful to have him home finally, although admittedly are feeling a bit overwhelmed. I am still pumping 6 times a day to keep getting Cameron all the great nutrients and antibodies that come from breastmilk, so that's enough of a time drain in itself. Fortunately for me, and unfortunately for him, Mike continues to work from home so he's been able to watch Mr Cameron during my hours of pumping. Somehow he is still able to get some work done and has even brought on a couple new clients! We are newly appreciative of all the parents in the world, and are even more impressed with parents of special needs kids. Although Cameron is lumped into that category, fortunately his doctors are confident he will outgrow most of his 'special needs'.

Some quick medical updates on him-
He is finally out of the woods for ROP (that means his eyes are clear and no surgery).
He needs to be retested in his left ear for hearing, but was screaming during the intital exam, so that's pretty normal.
He'll probably have his cleft palate surgery in December (they like to wait until they are about a year adjusted).
His 'button', or g-tube, has healed very nicely and doesn't seem to bother him at all or discourage him from laying on his tummy. It still gives me the heebie jeebies though.
He gaining weight like a champ, up to 10 and a half pounds already!!

As far as his development, they judge everything based on his 'adjusted age'. Which means his age if he had been born on his due date. So right now he is approximately a month and a half adjusted. Some awesome developmental milestones he has achieved since coming home-
He rolls from his tummy to back pretty easily.
He likes to bat at his toys hanging from his play gym.
His neck is getting really strong and he will turn towards our voices.
He's just starting cooing, making the most adorable noises when he's falling asleep.

I'm working on uploading our piles of pictures to a picasa web album, but who knows when I'll complete that. :) For now, here are some cute pics from the past month or so.

Also, thank you all for your continued support and prayers. I owe many of you thank you cards for your wonderful gifts (I'm getting about two written a week at this point). I also owe ALL of you a birth/welcome home announcement for Cameron as well. Working on that one as we speak. Hope you enjoy the pics!

Final days in the hospital and most of Cameron's friends (I'm bummed we weren't able to get pics of his docs and we missed a couple of his nurses too!)-

Get me out of here guys!

Lori (one of Cameron's primary nurses) kept us entertained on nights and I swear we'll get her to give Sauce one more chance.

Kathy Forbis (it's weird I know the RTs last names but not Cameron's primary nurses). Must be because they are all named Kathleen or Kathy. :) Kathy and Lori helped me hold Cameron the first time while he was still on the dreaded oscillator.

Speaking of RTs named Kathleen...Here's Kathleen Mittendorf (left) and Jessica (one of Cameron's primary nurses). Kathleen's aunt in law runs the Jack Russell rescue we adopted Max from. Small world! Jessica loved holding Cameron while she charted.

And of course Miss Carrie (one of his primary nurses). She swears she only work 3 days a week but I don't believe her. Seems like she was always there! I think she just couldn't stand to be away from our Cam bear.

Discharge day! A different Lori (left) helped send Cam off. Thankfully she was a familiar face and she was very gracious as we monopolized her time. Tracie (our social worker) was also there to make sure everything went smoothly. Tracie was a godsend and helped us save our sanity on several occasions. One of these days I'll have to meet up with all my girls for happy hour. :)

Here we are ready to run for the door.

Cameron and daddy have *almost* matching outfits!

Finally home!

"Oh no, did someone say hospital? Don't take me back there!!"

Our future Sun Devil loves to blow bubbles. Don't worry, we cleaned him up right after the pic.

First bath at home! You can see his 'button' in this pic too.

Just hanging out with daddy in our well used glider.

I love those big eyes!

Our first walk up to Fresh and Easy. Although he is quarantined from visitors with icky cold and flu germs, we can take him on walks to break our cabin fever. Fortunately for us, it's warm enough in AZ in the winter to do this.

Waking up daddy. He loves to lay on his tummy (Cameron I mean, not Mike).

Laying on his play mat. He just loves to look at all the toys and grab for them.

Here's our most recent shot of him at the pulmonologist appt on Tuesday. Can you believe those chubby cheeks?

Thanks for reading!!

Merry Christmas!

Hope everyone had a wonderful Christmas! I'll apologize in advance for the length of this blog, but lots to say and I haven't written in two weeks!

It's been a roller coaster two weeks, with highs and lows. As Cameron's doctor has explained several times, sometimes babies tend to do worse right before they go home because we are asking them to do a lot (eat more food, on their own, with less oxygen). It seems everything has been in fast foward the past couple weeks with lots of specialists coming and going to assess Cameron. Mike wrote his folks a nice email explaining Cameron's recent hurdles, so I'll paste below to save myself some time. If you don't feel like reading all the medical mumbo jumbo, make sure to at least scroll down and read about Cameron's Christmas and see the latest pics.

Right now Cameron is doing pretty good, but there are still a lot of things going on. The biggest thing right now are these "episodes" (unfortunately called “death spells”) he's having in which he "clamps down" and stops breathing. When this happens his blood oxygen drops down to anywhere from 0 to 50 (should be 88-92) and his heart rate goes as low as 30 and below sometimes. Unfortunately, Cameron can't just snap out of it and start breathing again. Obviously he won't be leaving the hospital while he is still experiencing those.

The next big issue is his whole mouth, throat, palette, suck/swallow/breathe mechanism. He's had several issues and they decided to take him off of bottle feeding and just do feeding via feeding tube for the time being. This could last anywhere from a few months to a few years.

Although his oxygen needs have been reduced significantly, he still requires oxygen. He’s on a very minimal amount of help at this point (1 liter @ 80% oxygen today if you’re keeping records). This does NOT mean he’s on 80% pure oxygen, when you’re on nasal prongs a lot of that oxygen is released into the air so it comes down to about 21-3x%.

He had an appointment with the ENT dr today and he said aside from some irritation with the vocal chords, all looks good. The pulmonologist came by as well and said he wanted to hold off on any further digging beyond the vocal cords (to test for things like tracheomalacia - http://en.wikipedia.org/wiki/Tracheomalacia, which he may have). Some of these things he will just grow out of in 18-24 months so they aren’t worth having to put him through more stress to do the test unless his episodes don’t subside.

To remedy the episodes, he’s having surgery on Tuesday (we just found this out today) for two procedures:

A) a Nissan Fundoplication (http://en.wikipedia.org/wiki/Nissen_fundoplication), sounds crazy and it kind of is. They feel that severe reflux could be causing his episodes so this procedure will possibly reduce that. They are going to take the top part of his stomach and wrap it around the esophagus and stitch it to itself to reduce the amount of reflux that can occur. Wikipedia has a good picture if you’re interested. With any surgery there is a risk of infection and he will, unfortunately, have to be intubated again for awhile while he is healing. You can read about all of the other complications, etc. on Wikipedia (or any other site). Yes, he can still throw up after the procedure, in case you’re wondering (like we were).

B) Insertion of a gastronomy feeding tube (http://surgery.med.umich.edu/pediatric/clinical/physician_content/procedures/gastronomy_tube.shtml) which is a permanent feeding tube that will come out of his side. This will hopefully help with the reflux as well and supposedly it makes it easier to feed him since it will just release his food to him via the tube throughout the night. It literally looks like the little buttons you see on the side of an inner tube, only it is for his stomach.

So, the long and short of it is that he’s having another surgery on Tuesday, still needs to get his cleft palette surgery at 1 year as well as kidney surgery sometime as well. When he comes home (probably mid January to early February), he’ll be on oxygen and a feeding tube. We don’t have any idea what to expect from any of it but I think we’ve done really well with everything that’s been thrown at us over the past 100 days. Aside from the episodes, we’re pretty used to all of the tubes and machines and feel comfortable being an active part of his care. Like the pulmonologist said today, you really can’t describe what it’s like going through a NICU experience unless you’ve been there (one of his kids was born at 27 weeks like Cameron and they lost their other child born at 35 weeks due to some syndrome that wasn’t compatible with life). Some days are good, some are bad, life is life… we are thankful for Cameron regardless of any of this.

Now onto the more upbeat stuff! Our Christmas Eve started off a little rocky with all the doctor's visits and news of the surgery, but the day ended wonderfully with me reading Cameron 'Twas the Night Before Christmas. We also took a family Christmas photo-

Cameron was being particularly fussy on Christmas Eve because that's the day the ENT doc did his larengscopy (I'm positive that's spelled wrong). Darlene, one of the Nurse Practitioners, put Cameron in the sleeper hold to calm him down. She said it works wonders on her grandson, and Cameron seemed to like it as well.

Christmas day was wonderful. We brought Cameron's gifts up to the hospital and spent all afternoon just hanging out and playing with him. We even got treated to a free lunch in the hospital cafeteria. Mike had some yummy pesto salmon, and I tried the pot roast. Should have gone with the salmon. Here's a pic of Cameron's room on Christmas day-

Mike helped Cameron 'open' his presents while I shot pics and video. I may post clips up to youtube at some point if I can figure out how to download them off my video camera (it's an old fashioned tape model). Here's one of Mike showing Cameron the Animal Train. Sara and Pablo gave Cameron this outfit for Christmas. Super cute, but I think the legs are just a bit too long. Almost looks like his feet are bent backwards (they aren't).

The day after Christmas (or Boxing Day for our Canadian and British friends) we got to take Cameron out on a walk (just in the NICU halls) using a sling. It was our first time talking him on a walk! Cameron really seemed comfortable even though I thought he looked smashed in there. I loved the sling, but it's a hospital loaner, so I need to get one of my own. Mike's got a friend in Canada that makes them and if I can get my act together to send her some fabric, she'll make me a nice custom one. Here's a link if you want to check out her stuff, it's so cute! http://www.small-potatoes.ca/

Sunday was Cameron's 3 month birthday and ironically his 3 day birthday if you are using his adjusted age. Since he was due on Christmas, they adjust all his developmental goals, etc to that date. At 3 months Cameron is already up to 7 pounds, 15 ounces. Just one more ounce to go to 8 pounds!

Here's a fun shot of Mike on diaper duty. I swear, he is the fastest changer in the West. He gets Cameron out of those diapers and into his outfits so quick it's amazing. Notice the blur on his hands in the pic below. :) And speaking of outfits, Cameron has officially outgrown all his premie outfits! He is quickly filling out the newborn outfits too. I'm thinking by the end of the week he'll be in 0-3 month.

We've discovered that one of Cameron's new favorite things to do is to sit up on Daddy's knee and look around. He says, "Mom, why are you staring at me?"

And if you actually made it that far into this blog, then you're probably as tired as Cameron and will enjoy this pic-
Have a safe a happy New Year!

He's nearly 7 pounds!!

Hi all. Our little porker continues to gain weight like crazy. His little arms are getting so chubby, it's adorable! He's up to 6 pounds, 14.4 ounces! Cameron continued to make progress this week, he moved from the high pressure oxygen (which was it's own special machine) to just the regular old wall oxygen. They were also able to take him off of his last sedative type medicine (phenobarb or something). So the only meds he's on now are an antibiotic, and some vitamins.

We're still not sure exactly when he's coming home yet. The ear/nose/throat specialist came to look at his cleft palate and although it's small, they think it's definitely impacting his ability to eat on his own without his feeding tube. Another specialist that will do the actual surgery to repair the cleft down the road is going to see him this week to determine when they should operate on it. It should be a pretty easy operation, but they usually like the babies to be a certain size when they do it so the recovery is quicker.

He also had his visit from Santa! This Santa was so amazing. He's a flight nurse and he's been playing Santa in the NICU for years. He starts growing out his beard in the summer so it will be long enough come December. I would post the photo, but we decided to use it for this year's Christmas card, so you'll just have to wait to get your card in the mail to see it!

Enjoy these pics and look for your card in the mail this week!

He loves to sit up and look around.

I just love all his expressions!

All cuddled up with Daddy.