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.

It's the most wonderful time of the year

It's my favorite time of year! Christmas lights are up, Christmas music is playing everywhere and the holiday spirit is in the air.

Little Cam Bear is in the mood too. We've decorated his crib with our Avon Mouse advent calendar. You'd be surprised how many nurses have that calendar considering it's probably 20+ years old. Grandma Karla sent him the cutest little stocking that says, "Cameron's First Christmas" which we hung up on his unused IV pole. We also have a couple cute Christmas outfits that Aunt Lisa sent. And the most exciting news is that Santa visits the NICU tomorrow! We'll have some pictures of that up hopefully soon.

This week was another good week with more steps in the right direction. They moved Cameron to a different pod with a 'window' seat. It's a lot more quiet and he seems to really enjoy it. He spends a lot of time either in his bouncy chair or gazing at his mobile. Daddy and I take turns holding him and Uncle Marc also visited this week (on a brief business trip stopover) and held him as well. Cameron continues to do well with his feedings and he is even up to 6lbs, 7 ounces as of tonight. Can you believe it? They also did a kidney function test this week (I can't remember the name, VCOG or something like that). He is still having some minor issues that they may have to correct with surgery down the road, but for now, just antibiotics seem to be working fine. The urologist should be by this week to go over the results with his regular docs and decide how they want to proceed.

Enjoy the pics! Tis the season.... :)

Hi Uncle Marc! Nice to meet you.

Big stretch or 'Up up and Away'? Cousin Colleen picked out this cute outfit for Cameron. It is so soft!

One of the volunteers knitted these hats for all the babies in the NICU. Isn't it cute?

Look at how little his bottom is!

Believe it or not, he LOVED sitting like this.

He loves his bouncy chair. I think he's a little suspicious of the giraffe though.

What we're thankful for

This past week, we have reflected and given thanks for many things. We are thankful-

• that our sweet Cameron hit his two month milestone on the 28th and is continuing his great progress.
• that our neighbors Freddy and Megan welcomed their healthy baby girl Lola on Thanksgiving day.
• for all of our wonderful family and friends that have kept Cameron in their prayers.
• for the caring nurses and doctors that watch over Cameron every day.
• that God has blessed us with such a beautiful baby boy and continues to show us miracles every day.

Now, for our recap and of course this week's pics!

On Sunday night and Monday morning they gave Cameron two series of blood transfusions. These really helped him and by Tuesday he was off the CPAP already. Tuesday and Wednesday we took turns holding him and spent a lot of quality time together. Thursday we went to visit our neighbors Freddy and Megan down in labor and delivery. They were in the same room that we were in when we had Cameron! They had their little girl in the afternoon and we got to meet her that night. She is so cute!

Friday was Cameron's two month birthday and what a big day it was. He was able to try eating out of a bottle for the first time and did great with it. They started him off really slow though, he can only do the bottle once a day and a couple CCs at a time. Otherwise he still gets the majority of his food from the feeding tube. On Saturday we brought in his bouncy chair and he loved it. Mike took his turn feeding Cameron with the bottle and had a great time with it. We also brought in his Christmas decorations on Saturday.

This was his last day on the CPAP. He's just staring at his mobile.

This is Cameron saying "oh thank goodness, no more CPAP!"

He loves his bouncy chair!

Thanks dad!

Just staring at daddy with his cute little baby foot poking out.

Cameron's Fashion Show

Hard to believe it’s already been 8 weeks. Cameron continues to make progress, although it’s been a lot of ‘two steps forward, one step back’ this week. His hernia surgery on Monday went really well, although they did have to intibate him for the surgery. Afterwards he went back onto the CPAP, no problem. They also put him in a big boy crib after his surgery! So, no more ‘incubator’. Monday night his IV went bad and as a result they stopped his Fentanyl (pain killer), which they had been trying to taper down. Good news is no more IV! Bad news is Cameron had some nasty withdrawal symptoms on Tuesday so he is now on Morphine. By Thursday he was ready to come off of the CPAP and try a nasal cannula. He did great Thursday night and most of Friday, but by Friday night he started to have some ‘episodes’ of dropping his heart rate and breathing. They thought this could have been partially due to having some acid reflux from the increased feedings. So they started him on some meds for that on Sat, but by Sat night, they had to put him back onto the CPAP and they also pulled some blood work. Today he was still having some issues, and his blood work came back with a low platelet count, so they are giving him a transfusion this afternoon.

Now for the fun stuff! We got to give Cameron his first bath on Wednesday night (first bath that we gave him, not his first since he was born of course). He loved it! He was so good and seemed to like the water. Afterwards, I wrapped him up in a warm towel and he just dozed right off. We also got to start putting him in outfits this week since his IV was out. For now, he can only wear outfits that button in the front, nothing that has to be pulled over his head (like onesies). We found a couple cute premie outfits for him, and also tried out a couple of the smaller ‘newborn’ outfits we have. As you can tell from the pics below, they are still a bit big on him. Now that he’s not under that heat lamp anymore, and doesn’t have any IVs stuck in his arms, he loves to be clothed and swaddled. We also got to put up his mobile this week! I didn’t think they would let you bring in stuff like that, but the nurses actually suggested it and Cameron loves it. It plays 4 different music pieces and has little hanging animals and leaves that spin around. No pics of that yet, but we’ll have some soon. Thanks to Bill and Mary Hughes and family for sending the mobile!

Hope you enjoy the below pics. Have a wonderful Thanksgiving week! We will definitely be giving thanks this week for our little angel and all of our wonderful and supportive family and friends (and of course our new NICU family).

This little Winnie the Pooh outfit is adorable!

Doesn't he look comfy?

So nice to be able to finally see his face!

I know, this pic looks a little weird. That's the CPAP on his head and the outfit is a bit too large, so he looks kind of silly. Don't worry, we swaddled him up after this pic and made him all comfy.

Look Ma, no ventilator!

Hooray for no more ventilator! At least for now, Cameron is off of that thing. He made AMAZING progress last week, thanks to some new docs and the wonder drug that is Decadron (a steroid). Here's the run down-

Monday- Cameron starts on Decadron, but has a positive culture for group B strep (a nasty infection that can cause meningitis).

Tuesday- Cameron is off the oscillator already and onto a conventional ventilator that allows him to take his own breaths. He's up to full feeds and has lots of poopies. :)

Wednesday- Daddy gets to hold Cameron for the first time! He is also doing so well with his feeds they take him off of all his IV fluids.


Thursday- They did a spinal tap to check for meningitis. It was negative! Yay! So now he just gets some extra antibiotics to kill the Strep.

Friday morning- I got to hold Cameron for a whole hour skin to skin (kangaroo care). Cameron's doc said he was doing so well, that she was ready to take him off the ventilator already! She wanted to wait though because he's going to have a minor surgery on Monday to repair a hernia.


So what does Cameron decide to do Friday night when we show up to visit? He PULLS THE TUBE OUT! Silly goose. I peek in to look at him and he's just kicking his little legs around and I see the tape sticking straight up from his mouth. So they decided just to leave the tube out and put him on a CPAP machine.


He hung out on the CPAP all day yesterday and daddy got to hold him again last night. This morning he was doing so good on the CPAP, they decided to try him on just a nasal cannula. He did pretty well on it for about an hour, but he was being pretty fussy, so they put him back on the CPAP for now. Surgery for his hernia is tomorrow morning, and they expect it to be a quick and easy procedure.

We are so happy and relieved that Cameron is doing so much better this week. All of the nurses and techs are amazed at how well he is doing now.

We'll post more pics to the Picasa web album hopefully by the end of the day Monday.

What a great week

What a great week this has been!

On Wednesday I got to hold Cameron for a whole hour! It was the first time I was able to hold him since he was born. It was so wonderful, but quite an ordeal getting set up since he's still on the oscillator. Not something we can do all the time. View lots of pics here. We had a cloth on his head to protect his eyes from the bright lights.

On Friday we switched to a new group of doctors and Cameron is already making great progress. They think they can get him off that oscillator soon. They have already made great progress with his care in just a day and a half. He's moved way up on his feedings, and they are taking some of his meds away. This is how we felt after changing doctors-

On Saturday we had our baby shower. It was so much fun! Leslie Miller went all out with the planning and decorations. It was all AMAZING. Thanks to Lesli Evans for hosting and being Martha Stewart with all the fabulous food! Thanks also to John for his photog skills and baking skills?!?! And of course, thanks to all our wonderful friends for showing up and making it such a great time. I posted all the great pics John took here. Check out the captions. Haha.

Cameron's First Halloween!

Check out our little Jedi! Cameron's buddy Parker sent him a light saber to protect him and help him feel better. So we thought that Cameron should be a Jedi for Halloween. We made him this cute little brown robe (like Obi Wan's) and hood. The light saber is about the same size as him, but he'll grow into it. The nurses loved his costume and we were joking that he'd play Jedi mind tricks on them. "This is not the baby you are looking for."

The force is with him.

We made the costume out of soft fleece, Cameron loved it and was holding onto it.

These are all the Halloween gifts Cameron received. Thanks to Aunt Lisa and family for the book, the Millers for the pumpkin pail, Grandma Hughes for the bear and the wonderful volunteers at the NICU for making the cute knit cap.

This is our first family portrait!

Happy Birthday Cameron!

Cameron is one month old today! Poor little guy is still on the ventilator, but he is stable with his oxygen and they have been slowly reducing his settings. The PDA valve seems to have finally closed for good, as it hasn't given him any trouble in about a week. He had a bit of swelling this past week, but he is looking much better today.

Cameron is becoming increasingly active every time we visit him, opening his eyes a lot and looking around. Grandma Hughes was out to visit this past weekend and Cameron was excited to meet her. Hope you enjoy these pics!

This is my favorite pic so far! We took this today. I think he's saying, "my birthday wish is to get this tube out!"

It's so cute watching him falling asleep, but trying so hard to keep his eyes open.

Cute little bear hat for the little bear. As you can probably tell, Cameron had quite a bit of swelling last week, but it's better now.

Cameron loves sleeping on his tummy just like mommy.

His diaper is so big it goes almost halfway up his back.

Goodnight....So cute!

That's my boy!

All of our prayers must have worked. Cameron decided he didn't need to have surgery after all. The docs did one last Echo this morning to make sure the PDA was still there, which is standard practice before a surgery. They wouldn't want to go in and try to close something that closed on it's own, after all.

So despite it being a 'moderate' size on Wednesday, as of this morning, it was closed! We are very thankful that he does not have to undergo surgery, at least for now. There is a small chance that the valve could re-open and surgery would be necessary down the road, but for now he doesn't need it.

He is doing really good today, and we're hopeful they will be able to start coming down on his ventilator settings soon. Thanks for all your positive thoughts!

Life in the NICU- Surgery Tomorrow

It's hard to believe that Cameron is already 19 days old today. I have to say, everything we have heard about life in the NICU is right on. Every day is a challenge and it's like being on a roller coaster. He will be doing awesome when we are there in the morning, and when we go back later in the day, he will be having some issues. Or not so great in the morning, but awesome at night.

Mike and I have been spending as much time as possible by his bedside, but he needs a LOT of quiet time and rest, so we try not to bother him too much. They do his 'cares' every 4 hours, and they let us change his diaper, check his temp, etc, while they do any needed blood draws, suction his lungs, etc. We are there at least twice a day for several hours, and he really responds to our voices when we talk to him. He especially seems to respond to Mike and still loves gripping daddy's finger.

Overall, Cameron is doing as well as any other premie his age. He still relies heavily on his ventilator and needs oxygen adjustments frequently. He also has what is called a "PDA" or Patent Ductus Arteriosus. That basically means that a valve in his heart that should have closed at birth is still open. They were hoping it would close on it's own, and at first it seemed like it was going to. It went from small to tiny to possibly closed. Unfortunately, it seemed to re-open to a moderate size on Sunday, and despite treating it with medication to help it close, it still appears to be open. One of the side effects of this PDA, is that it can make his breathing worse. So the big news today is that they are going to do surgery tomorrow to try and clamp the valve closed. The hope is that by correcting the PDA, his breathing will improve and his ventilator needs will go down. Despite this being a fairly 'routine' surgery for premies, we are still nervous about it. PLEASE SAY SOME PRAYERS FOR CAMERON!

On a positive note, he is gaining weight and was able to start getting milk through a feeding tube, although they have temporarily stopped his feedings because of his PDA. He is up to 4 pounds, 2 ounces already!

Hope you enjoy these pics!

One week old. He is still in the 'tiny' diapers.

2 weeks old. Already graduated to the next diaper size!

Grandpa Hughes was in town over the weekend and helped us celebrate Cameron's 2 week birthday.

18 days old. He loves to have his hands up by his face. It's a self-comforting measure.

Next to daddy he looks so tiny!