Summer Fun

Mason & Great Grandma snuggling on the 4th of July

Bath time in the kitchen sink!

Mason & his buddy Noah at the ECMO picnic in June. I love this picture because it looks like Noah is devising a plan to get his toy back!

Mason listens intently as Noah explains how eating really isn't as bad as it seems...

Surgery & Recovery

Sorry it has been so long since we last posted. It has been a busy couple of weeks with some new happenings.

I have been talking extensively with Mason's OT regarding the suggested feeding programs. At this time she is very against it and advised that it should be our last option if nothing else works. Especially in Mason's case since he seems receptive to food, but his gag reflex is preventing him from eating. We both agreed that we really need to give him some time to resolve it with home and weekly hospital therapy. Right now we are working with toothbrushes to try and help desensitize his mouth. We also agreed that we needed to know how is esophagus functioning and if this is contributing to his oral aversion. We agreed to schedule a swallow study to check it out.

The swallow study took place Thursday of last week. It is basically a test done with x-ray fluoroscopy where Mason sits in a special seat and drinks a barium liquid. It is usually done to see if babies aspirate any into their airway while swallowing. Since we already know that Mason does not do this, we were just concentrating on the motility of his esophagus (or how well it pushes food into the stomach). Getting Mason to drink was near impossible, so we ended up squirting some into his mouth for him to swallow. We were presently surprised when we saw the food traveling down into his stomach. The one issue we did find was that not all of the liquid traveled into his stomach. There was a little that sort of "sat" on top of his Nissen wrap. After reviewing the test, our surgeon decided it was worth while to dialate his wrap one more time.

Mason has had an outpatient surgery scheduled for some time to do some maintenance work that was not an emergency before leaving the hospital last year. The surgery was scheduled for July 21st when Mason was over 1 year old and over 20 pounds. Mason's team of docs agreed that we should do the wrap dilatation at the same time so that he would only be under general anesthesia once.

Mason had both procedures on Monday and they went well. He actually weighed over 22 pounds when they took his pre-surgery vitals! He came home a couple of hours later and did great that night. Yesterday he had a tough day coping with the pain from his originally scheduled surgery and was breathing pretty shallow. This is common after a surgery and it was his way of trying to protect himself from more pain. Since he was also running a fever, we called the pulmonologist and she suggested to take him to the ER to get a chest x-ray and to make sure his sat's were ok. By the time we reached the UofM ER, we had managed to get his pain under control and he was taking a nap. His sat's were 97-100% and his x-ray looked good (they wanted to rule out pneumonia). Today he has been back to his normal self.

A couple of weeks ago we purchased a front facing car seat and he has been using it this past week. He found the first one we bought to be uncomfortable so we ended up exchanging it for a different one and he loves it! Mason is also getting a little closer to crawling. He does really well when we give him a little support under the chest. When we take the support away, he has a hard time keeping his knees under him. He has the motion down and hopefully with a little more strength and stretching, he will be crawling after Buster! We are also working a lot with trunk rotation and getting him to transition from laying down to sitting. This one is proving to be a bit more difficult than we anticipated. Mason is also doing better standing against furniture and has learned to fall onto his butt, where all of the padding is :) He is also starting to cruise a little when he sees an object he wants, like the remote or the phone. We have given him a bit of a break this summer with his PT and are hoping to start back up at UofM in August and then with Early On when school is in session.

I will post some more updated pictures in a few days...

As some of the other CDH mom's have mentioned, there has been a CDH full moon this past week. Some of the kiddos that were home doing well have ended up in the hospital for unplanned surgeries and illnesses. Please say an extra prayer for Ethan, Sofia, Cadenne and Zach.

Big Boy

I have lots to update, but I have to start with Mason's ped. surgery appointment yesterday. He weighed in at 21 pounds 2 ounces! I was just hoping for anything over 20 and he blew right by that. It was a gain of 2 pounds in just under 4 weeks. We are hoping that it was a true gain and not fluid retention. He also had a chest x-ray and it looked good, everything is where it is supposed to be. Our surgeon was comfortable telling us to come back in 11 months! WOW! She also suggested the possibility of looking into an intense feeding program for Mason since he is still struggling with oral feeds. We are just starting to research what is out there but are not sure if Mason is really old enough to handle such an intense program. Thank you to all of the other CDH moms for your input and advice so far!

Last weekend was the UofM ECMO picnic. We went and had a blast. Mason was reunited with his ECMO buddy Noah and they even had a chance to play. It was great seeing everyone that took care of our little guy when he was so sick. We even had a chance to see Ethan, another CDH buddy that was discharged on the same day! It was great to see how many lives ECMO has touched.

We started our fourth of July by giving Mason his first haircut! It was getting pretty long and he was growing a mullet. He handled it well and now looks very handsome :) We spent the 4th of July at Grandma and Grandpa's house. It was a chance to celebrate Mason's birthday and summer freedom with everyone (since we decided to keep his 1st birthday party small). Mason even had a chance to hang out with his Great Aunt and Uncle from New Mexico.

Pre-Haircut - "Do we have to?"

Post Haircut - What a handsome boy!

On Sunday, Travis and I took Mason to a petting zoo. He has shown a complete love for animals, especially dogs. He loved it! When we were paying our admission, there was a donkey that was just wondering around freely and Mason thought it was so funny. He got a chance to see some pigs, cows, goats, etc. He even tried to pet a few. Of course I was standing by with my antibacterial wipes :) I was worried that the smell would get to him since he has some sensory issues, but it didn't seem to bother him at all. Before we went to the petting zoo, Mason had his first out to eat experience at Jimmy John's. He didn't want to eat anything, but seemed to enjoy flirting with the staff.

My First Eating Out Experience

Check Out Those Horns!

Good News

Wednesday we received great news. Mason no longer needs to sleep with oxygen! His oxygen trial looked good to his Pulmonologist. We are hoping to have the equipment picked up soon.

Mason received a new feeding pump last Friday. It is a smaller and more modern version of what he previously had. This new pump does not depend on gravity so hopefully the the messy part of his tube feeds will be greatly reduced. It also comes with a small backpack so that when he begins to walk, he can wear it on his back. Getting adjusted to the new pump has been a bit of a struggle as it seems to pump the food in faster than the old one. We are still in the process of readjusting the settings to see what works best for him.

Mason is also switching over to a big boy formula. He will get a new formula called Nutren Jr. (the Nestle version of Pediasure). We should be receiving a two week supply sometime today. The formula comes pre-mixed so it should save us some extra time.

Physically Mason is making some progress, slow and steady. He has a huge drive to become mobile but his body has not caught up yet. This proves to be very frustrating for him. He has become very good at staying up on all fours and rocking back and forth, but is still working on the balance and coordination necessary to begin crawling. As always, he loves to stand and jump so it is pretty hard to get him to want to crawl. He is getting pretty good at climbing. We will build him some "stairs" out of the couch cushions and he has lots of fun trying to climb them.

I can't believe how fast babies learn at this age. Mason has learned to wave hi and bye-bye. I actually think his next word might be hi. He even waves to the dog every day :) He is also trying to mimic sounds from some of his toys. Yesterday he was trying to meow like a kitty (wish I could have gotten that on video). Just last weekend, he learned how to smack his lips and does it all the time now.

Looking for his partner in crime

Attemping to scale Mt. Stairway

New Pics

There is not too much new in the way of an update. The only thing is that Mason's oxygen trial was moved up to this weekend due to the availability of an extra MedEquip box (our Pulmonologist has the software for this box on hand). Mason spent Friday night and Saturday night without oxygen and seemed to do ok. He had a couple of small desat's on Saturday night so we are not sure if those will end up keeping him on oxygen. We will take the box to UofM on Monday to see what the downloaded data looks like.

Cashed out after a day of playing

Pushing the numbers down

New Look

Today Mason's page received a new look! We have been using the same format for over a year and decided it needed some freshening up. Look for some new items to be added soon. A live site feed was added today which shows the geographical location of the blog visitors (city, state). I saw it today on another CDH blog and thought it was a really neat idea. We will try it for a few days to see how it works. We are also going to get rid of the photo gallery link and will just try and use the blog to post our updated photos.

Mason has pretty much recovered from his cold. He still has a small post-cold cough but that seems to be disappearing more and more each day.

We did receive some good news from his pulmonologist last week. The oxygen trial software is in! Sometime in the next month, Mason will have a two night trial to come off of his oxygen at night. We are pretty confident it will be successful and will be thrilled to see all of the associated equipment leave our house.

We have some more good news regarding Mason's medications. He is no longer taking an iron supplement as his blood work looked good at his 12 month check-up. We are also instructed to try taking him off of his last reflux medication. The medication also aids in digestion so we are not sure if he will tolerate his bolus feeds without it. He has been off for two days and seems to be ok for now. For the next couple of weeks we will be watching him closely for an increase in gagging, etc. Mason is now down to one full-time medication! He is taking flo-vent for his chronic lung disease and he has an albuteral inhaler to take only if needed.

On The Growth Chart!!!

We have some great news! As you can tell from the title above, Mason has made it onto the growth chart in all 3 areas (weight, height and head circumference) for the very first time! We were all super excited at his office visit. Two nurses weighed and measured him because they couldn't believe he grew so much since his last visit. Mason is now 19 pounds, putting him at the 4th percentile for weight and the 10th percentile if you adjust for prematurity. He is also 29 inches long! He has grown almost a foot since birth!

The office visit went pretty well. Unfortunately Mason had to get some shots which upset him, after a few moments of crying he started "yelling" at the nurses in baby babble, still with tears coming down his cheeks. I felt bad that he was so upset, but he was sooo cute at the same time that I had to smile! The nurses thought it was pretty cute too!

Unfortunately Mason has caught a cold this past week. He has been a little stuffed up, but has been handling it well. He has only required a couple of extra breathing treatments and his oxygen sat's are still 97 -100%. He has now developed a bit of a cough due to the stuffiness breaking up. Hopefully in a few days he will feel much better.

Stayed tuned for some pictures of Mason trying to crawl and standing.

It's hard to see it in the picture, but there is water, water everywhere!