Mason

3rd Birthday!

2010-10-06T07:14:00.006-04:00

I have a bit of catch-up to do since I have updated last....

I wanted to share some pictures from Mason's 3rd birthday!

Mason turned 3 in May and we were able to celebrate with family and friends. Mason loves trains and Travis and I decided to get him a train table for his birthday. We spent countless hours putting it together the night before (into the wee hours of the morning) so that he could wake up and see it the morning of his party. Boy was he surprised and excited!

Then it was party time! We had a small party with friends, family and Mason's favorite neighbor Joe and his wife Sue. One of the hit gifts of the party was a school bus book. Mason LOVES all things school bus! Even months later, Mason still totes around his school bus book.

He was sooooo excited to blow out the candles on his school bus birthday cake!

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Time Flies!

2010-07-22T12:25:00.002-04:00

Wow! Has it really been 6 months since my last post?! I can't believe how time flies! We are all still doing great and I have lots to update you on (Mason's 3rd birthday, DeVos Intensive Feeding Program, Pre-School Plans, etc.).

Look for some new posts and pictures very soon :) For now, I am going to go and enjoy this beautiful day with my loves!

Then & Now

2010-01-30T18:19:00.002-05:00

The other day, Mason wanted to get into Izzy's high chair. It was the same high chair that he used when he was little. We took some photos and I thought it would make an excellent "Then & Now" Post.

What a difference 2 years makes!!!!

Winter Update

2010-01-28T07:18:00.003-05:00

I have a free minute (those are pretty hard to come by these days!) so I thought I would update you all.

Mason is doing pretty well these days. He is no longer on winter lockdown and is catching his fair share of the bugs going around. So far he has handled them like a champ with the exception of one cold virus that went into his lungs. We were very much on the lookout and after a couple of days of a worsening cough, we took him in to see Pulmonary. After a long visit and a chest x-ray we were on our way home with antibiotics, steroids and extra breathing treatments (that we had already started when his cough first showed up). After a few days he was feeling much better!

This winter we have a pretty full schedule. Monday he attends a speech class through Early On. He is in it for the structure it provides. His speech has been pretty good considering that he doesn't have the same muscle structure in his mouth that other eating children have. We are hoping that the structure will help him transition easier into his intensive feeding program this summer. On Tuesday we see Heather, Mason's UofM OT. On Friday, he has a 2 year old playgroup followed more OT with Norma. On Wednesdays and Thursdays we try to relax, run some errands or get together with friends...oh and sometimes I make an attempt to clean :)

We recently had a follow-up with the DeVos Intensive Feeding Program. We are still trying to get the gag/retch cycle under control...it is so hard in these kiddos with g-tubes and Nissen wraps. Mason is currently switching tube formulas again...this time to a formula called Compleat. It is made from "real" food like chicken, rice, etc. I guess some kids have better luck with a food based formula. So far he is tolerating it pretty well. We are about 1/3 of the way switched over.

We did receive some great news, the feeding program is running about 3 months ahead of schedule. This means that Mason will probably be attending in the summer instead of the fall (we are doing the happy dance over here!).

He is doing pretty well developmentally too. He spends his days running, jumping, talking, singing, playing games, counting, etc. He still loves his cartoons and wants to watch Finding Nemo all the time! He is also showing signs that he is interested in potty training....look out Mom & Dad!

I wanted to leave you with a few pictures of two amazing little boys! Noah, Mason's CDH buddy came to visit a couple of weeks ago with his Mom and little brother. We had so much fun and wished they lived closer! Here are a few pictures of the big boys (Mason in blue, Noah in green)! Check out our family blog later for some pictures of the little ones playing together!

Today is a New Day

2009-11-07T13:02:00.003-05:00

I was having a tough CDH day yesterday, all of us CDH Moms have them sometimes. I found myself emotionally wrapped up in all of the negative aspects of CDH and I found myself posting an update that I fondly entitled "I Hate CDH". I have since decided to delete it....because today is a new day.

Thank you Carrie (Noah's Mom) for spending the better part of an hour on the phone with me last night. We comiserated, we talked, we laughed and came to the conclusion that one day our tube fed boys (including Ethan and Riley!) are all going to be eating pizza and discussing sports and other boy things! We will ALL get there. There will be a lot of blood, sweat and tears....but they will get there...and they will experience more love than most children while doing so!

Thank you for uplifting me, even though you are going through trials of your own. It means so much to talk with someone who is going through the same things and experiencing the same fears!

Today is a new day!

Fall Update

2009-10-18T15:14:00.002-04:00

Sorry to keep you all wondering...again. Time is seriously slipping away from me. We are still busy, busy, busy but doing great!

Mason is almost 2 and a half now! My how time flies!

Mason is still a really great big brother. His sister is now 6 months old and Mason gives her kisses and tries to tickle her. He also brings her toys to play with and it is great to see them really get to interact with each other!

His lungs continue to stay healthy since our last post. We are keeping our fingers crossed that they are able to stay that way this winter! Overall, he has been pretty healthy since our last post with only 1 cold and a short intestinal virus. He just recently had a visit with his Pulmonologist who was thrilled at his progress and won't need to see him for another 6 months. This will be Mason's first winter without full lock-down! We are excited to have a bit more freedom this winter!

This fall, Mason is continuing with the IPSEP (infant and preschool special education program) through our school system. This year he is done with PT! Yay! He has almost physically caught up to his peers. Right now the only gross motor things he struggles with are jumping and walking up/down stairs while holding the wall or railing. He has started to walk up and down the step from our kitchen to our family room this past week, so we hope that the stairs will be right around the corner. He has started OT with the school system and we LOVE his therapist Norma. She has really taken the time to understand his quirks and is devoted to helping him learn to eat and to diminish his behavorial issues that are associated with food. She understands how important it is to make his therapy sessions fun.

We have also enrolled Mason into a program called Stay and Play. It is also through the school system and is basically a playgroup of normal 2 year olds. It can be a struggle for me to see Mason next to all of the healthy 2 year olds, and see that he still has a long way to go, I just get so hearbroken when I see this. I thought it would be easier, but it's not, it is really hard to muster the motivation to take him there. I do it because I know that he LOVES it and it is good for him. He is such a social guy and just gets right in there and starts playing. He has come soooooooooo far, but still has quite long way to go in many areas. He has worked so hard to get where he is today! There are about 8 kids in the group and I have only talked to a couple of Moms about what Mason has been through, the rest have no idea. This program is really good for him however, and helps him get over some of his sensory fears by watching other kids do certain activities. He is also picking up speech from some of the other kids and has learned "NO! MINE!" and says it pretty well :) His teachers are great and know exactly what he has been through and they are completely supportive.

On to other news....Mason had his evaluation by the Intensive Feeding team at DeVos Hospital in Grand Rapids. It was a long and comprehensive vist with a team of doctors and therapists. He has been accepted into the program, but will not start until early fall of next year. They are the only feeding program in Michigan and the waiting list is pretty long! In the meantime, they are working with us to decrease his gagging and retching. They have added a couple of meds back to his schedule and are planning on switching his formula to see if that will make a difference. We are just waiting on insurance approval before we can start the new formula.

Next month, Mason will have his yearly CDH clinic appointment at UofM. He will see his Pediatric Surgeon, Pulmonologist, Cardiologist, Dietician, OT and PT. It will be a long appointment, but great to have everyone together to discuss his plan for the next year.

In other non-CDH related news, many of you know that we have been cloth diapering our kids. I have always dreamed of owning my own business and recently decided to open up a internet retail store for cloth diapers and accessories. Great Lakes Diaper Company opened for business last month! Stop on by and check us out! Mason is our "testing" department supervisor :)

Summer Update

2009-07-28T11:29:00.006-04:00

We have had a great summer so far! I know...it has been a while since I have updated. I have been busy, busy, busy enjoying summer with the kids, doing endless mountains of laundry and trying to clean a house that always seems to be messy, and cuddling with my little boy and baby girl, and spending quality family time. What more could a Mom ask for? It has been a terrific summer to say the least!

Mason is still doing great. He is having a blast this summer with water! You name it, we have done it! He loves his baby pool, sprinkler, water table, big pool, local spray/splash park or just a plain 'ol bucket of water with some toys to splash in.

Physically he is doing wonderful. His PT sessions at UofM did wonders for him! He is moving around like a typical 2 year old. Right now we are working on jumping and walking up/down the stairs. We are also doing some balance beam work. Mason just had a check-up with his Physical Medicine doctor and....drum roll please....there is no more concern for cerebral palsy! Looks like it is totally out of the picture. She will see him one more time in 6 months and then he will be discharged from her service.

Onto more good news...his lung function test in June came back with results consistent with his last test. He still falls within a low normal range for kids his size and weight. He has mild air trapping and low compliance which are signs of his chronic lung disease. I am so amazed at the progress he has made in this area! His Pulmonary doc decided it would be best to stick with the current breathing treatments for now.

The latest development in Mason's care is a new consultation with an intensive feeding clinic in Grand Rapids. We see them on September 10th to discuss Mason's feeding progress. Feeding for him is really an up/down roller coaster. Some days are good (for him this means some drinks of water and a taste of cracker) while others are bad (complete refusal of anything food/drink related). We haven't really been able to make much progress and it seems that we are having more bad than good days lately. I will post more later...

Mason has been a wonderful big brother to Isabel! He loves to bring her toys and try to give her a pacifier. He also loves to tickle her and pet her head. When he sees her every morning he says "Hi baby!". He looks for her when she is napping in another room and shows concern when she is crying. He also has the knack for making her laugh really hard! He is such a sweet boy!

The Many Faces of Mason

2009-06-14T14:55:00.006-04:00

Here are some cute photos of Mason from his trip to Grandma and Grandpa Sennett's house. He was using his battery operated squirt gun to get everyone and everything wet! He also had a blast playing with some of Grandpa's tools.

Mason is 2!

2009-06-11T20:54:00.009-04:00

I am so proud and happy to say that our little miracle turned 2 on May 25th. I can't believe how fast the time has gone by. The NICU memories are still so fresh in my mind that sometimes it seems like yesterday. Even though the memories are still so vivid, I get to watch my toddler walk, run, talk, "read" books, give hugs and kisses, tickle his little sister, etc. There are days when it still brings tears to my eyes. He is such a happy boy.

We celebrated his birthday on Sunday the 24th with friends and family. I made him a cake in the shape of a dump truck. The minute he saw it sitting on the counter he smiled and said "dump truck!". He had so much fun at his party playing with his toys. He is such a social boy and loves parties! He is really becoming independent and will dissapear into the party crowd and mingle with everyone instead of sticking next to us.

Here is a glimpse of Mason at age 2:

* Like most 2 year olds, his favorite word is "no" :)

* He is fascinated by his little sister and loves to tickle her and try to give her a pacifier.

* Like always, he loves his books. I think he could probably sit for hours looking at all of them.

* He loves trucks!

* He is very good at entertaining himself and is able to play independently when my time is consumed with the baby.

* He loves cartoons! His favorite is Wow Wow Wubbzy. When it is on, he loves to march around saying "Wow! Wow!".

* He continues to love music. His favorite song is Wheels on the Bus. When we are in the car, he will do all of the hand motions and giggle like crazy when I play it for him.

* He loves to give hugs and kisses and is still our "snuggle bug".

* He loves to go outside and play!

March For Babies Walk 4/25/09

2009-05-03T18:17:00.010-04:00

I want to start off by saying how proud I am of my husband. He really dedicates himself to the March for Babies each year. This year he raised $2,700 and exceeded his fundraising goal by $1,200! This year was the first year he organized a team to walk to walk in honor of Mason and CDH. 15 people came out to support him and even raised an additional $890 bringing the grand total to $3,590!

The weather turned out beautiful and we were thrilled that Mason was able to join the team in the walk. Everyone had a great time, despite sore feet after such a long walk.

Thank you to everyone who donated, participated and helped raise money for such a good cause!

Team Mason

Mason petting a horse with Daddy at one of the checkpoints

Behind....

2009-05-03T11:32:00.004-04:00

Today I decided to delete my list of other CDH blogs. Unfortunately I never had the extra moment to keep the list updated like I had originally planned. Now with adding a newborn to the mix, I think I will have even less time.

If you like to check in on some Mason's CDH buddies, please visit Sofie's blog, Nayeli's blog, or Carter's blog. All three Mom's do a wonderful job with keeping updated CDH lists.

Big Brother!

2009-05-02T11:18:00.003-04:00

Yikes....I have been a total blog slacker lately, but for good reason. We just recently welcomed Mason's baby sister into the world on April 17th at 11:30am. Mason is now a proud big brother!! He has adapted really well and is very curious about this new person in our house. So far he doesn't seem to mind us taking time to care for her and has even given her a couple of kisses. What a wonderful big brother!

Pictures can be found on our family update blog (see link at right).

Spring Cold

2009-03-22T18:28:00.004-04:00

Mason has been doing really well lately, with the exception of catching a bad cold yesterday. Actually all of us caught it. So far he seems to be handling it well, just extra tired with a runny and sneezy nose. He has a lung function test scheduled for Thursday, but we may have to reschedule due to his cold.

Over the past week he has become a full-time walker for the most part. He is still having some trouble standing up on his own without the use of a wall or object, so if he falls in the middle of a room, he will crawl to the closest thing to help him up. Mason is also going to receive some extra PT at UofM. A HUGE thanks to Jeannie and Dan for moving mountains to get us in! He had an evaluation on Thursday and since then we have been working on throwing and kicking balls, stepping over and around objects on the floor, carrying large objects while walking, core strength, balance, etc. Right now Mason's gross motor skills (according to the Peabody test) are at the 13 month old level. He is really interested in playing with the other neighborhood kids his age, but can't keep up with them yet. Six weeks of extra PT should really help him catch up to his adjusted age of 19 months.

Mason's occupational therapy has been going pretty well. He now has a few summer months off before we go back. We are at a stage where he just needs exposure to a variety of different foods and textures, something we can do at home rather than at the hospital. He is still drinking lots of water which is great. He is also starting to take some tasts of our lunch and dinner with a fork, as long as it is a sauce or gravy texture. Our next step is to get him comfortable with squishy and slimy solids like cooked veggies and fruits.

Update

2009-03-02T19:11:00.010-05:00

I thought I would post a little general update on how Mason is doing.

First, the mysterious skin bump is well....still a mystery. It did pop and drain about a week after I last posted about it, and now it looks much better. Since then, we visited the Pediatrician again, tried a stronger antibiotic, and were referred to a Dermatologist. The Dermatologist said it didn't look to be bacterial or infectious which was good news. She did say it could be a number of things and we would not know for sure until we took a biopsy. She did say it does not look to be dangerous or bad and is probably a harmless growth. The biopsy will leave a scar and since Mason doesn't need any more scars we made the mutual decision to wait an additional 6 - 8 weeks to see if it will heal up on its own. If it doesn't, then we will proceed with a biopsy. The good thing is that it appears to be healing on its own, ever so slowly. We are hoping that it will be gone by the time the 8 weeks is up.

Mason is also walking around a lot lately and we have noticed that his balance is improving each day. I still stare in disbelief when I see him walking. I can't believe how fast he is growing up! Here is a video we captured over weekend.

Mason has been working with puzzles quite a bit lately. He really likes his wood stacker and is getting pretty good at putting the pieces back on after he takes them off. We also just started with a shape puzzle that has colors on it. Mason has done really well with matching up the colors which helps him find where the shape belongs. He just has a little trouble getting the puzzle pieces to fit perfectly into the hole and will become pretty frusterated. Once his fine motor skills catch up, I think he will have an easier time. He has also become really interested in his Sesame Street alphabet cards, I think mostly because there are pictures of Elmo and Cookie Monster on them :)

Here are a couple of recent pictures taken over the past couple of days:

Playing....
Watching cartoons with his snuggly blanket.
Helping with the kitchen remodel.

I thought I would end this post with a video of Mason being goofy.

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Mason is...WALKING!

2009-02-25T16:40:00.002-05:00

Over the last few days, Mason has been standing for longer periods independently and taking multiple hands-free steps near objects that he could hold onto if he needed. Last night, Mason left a chair in the middle of the room and casually walked to the couch with probably 6 independent steps. Travis and I were both fortunate enough to see it happen. It was the very first time Mason stepped out into space with nothing to hold onto; no safety net. He did great and kept his balance the entire time! Hopefully we can capture it on film soon!

Mysterious Skin Bump

2009-02-12T16:28:00.003-05:00

Things have been going really well for Mason lately, with the exception of a mysterious skin bump on his forehead. For about a week a red spot came and went and we really thought nothing of it. A week later, it stuck and has been growing in size and getting more red for the past 4 weeks. We have visited the Pediatrician twice and have tried two treatments, but nothing seems to make it go away or get any smaller. If it doesn't improve by the end of this week, we will have to visit a Dermatologist to see if they can tell what it is.

It looks like an infected clogged pore and we have been using warm compresses to try and bring it to a head so that it can pop and drain. He is on topical and oral antibiotics right now, just in case it is a bacterial infection. The compresses are hard to do when he is awake, so the past few nights I have been doing them when he falls asleep. It looked like they might be working and it was close to being ready to pop last night. My fingers are crossed that tonight will be the night. The Pediatrician feels that once it pops and drains, it will heal up pretty fast. Since the location is right between his eyes, she did not feel comfortable lancing it at the office and was not able to manually "pop" it at our last visit.

March for Babies

2009-02-06T15:49:00.002-05:00

That time of year is coming up again! March for Babies is on 4/25/09 in our area. Last year Travis walked for Mason and was able to raise more than $1,000 in donations thanks to your generosity.

We have set up a bit of a different goal this year. There were many people that expressed interest in walking with Travis, so we decided to create a walking team. Our team will represent CDH and will hopefully help to raise some awareness. Our goal is to get 25 walkers this year to participate with Travis and Mason. If each walker raised $100, our team will generate $2,500 for the March of Dimes, a truly special organization.

I really wish I could walk this year, but the event is only 2 days away from my due date.

Please check out our Team Page and register to join us!

Playdate

2009-02-06T15:28:00.004-05:00

This past Sunday, we were able to get together with the Baker's. Noah is one of Mason's CDH buddies and was Mason's roomie when they were on ECMO at UofM. We have all become such great friends and have really gone through this CDH journey step by step with each other. It is great to have friends that can relate to everything that we have been through.

We visited the Baker's at their house and the boys all had a great time playing. It was the first time they were able to play together ouside of a hospital or doctor appointment.

Check out The Baker's blog, they got some great pictures!!

Pudding Therapy

2009-02-06T15:19:00.003-05:00

Who can resist a little chocolate pudding therapy? Not our little guy! A few nights ago I made some chocolate JELLO cook'n'serve pudding for dessert. We stripped Mason down and let him "have at it". He made a huge mess and even tasted it multiple times. He really had fun with it and made us laugh, and laugh. It was such a success that we decided to have pudding therapy as much as we can now. We can really start to tell that his sensory issues are now becoming far and few between. He didn't mind getting dirty and digging in the pudding. I served it warm so I am sure that helped a little.

Pictures

2009-01-29T11:56:00.004-05:00

I just realized that the last pictures that I posted of Mason were from Christmas! Here are some recent pics...

Posing for the camera....

Using his walker (you can see the hole in his pj's that we had to add to accomodate his feeding tube)....

Practice, practice, practice...

Another pose for the camera...

First Step

2009-01-29T11:41:00.002-05:00

This past Sunday I met up with some other UofM CDH Moms for lunch and coffee. It was wonderful to get together with all of them and catch up. We found a great central location for all of us and we hope to do it again sometime soon!

This is just a short post that I needed to write this down so that I can reference it when I am updating Mason's baby book later...

When I came home Travis gave me the news that Mason took one step by himself about 5 minutes before I came home. He was looking out the window and then turned around and wanted to get to one of his stand-up toys. Instead of getting down and crawling to it like usual, he let go of the window and stepped over to it himself. Travis said it happened so fast that by the time he realized it and started to cheer, Mason was looking at him like "what did I do?".

Yesterday at our Pulmonary appointment, Mason was cruising some of the furniture in the exam room while we were waiting for the doc. He was standing and holding onto my legs and decided to walk over to the stroller by himself. He took about 1 - 2 steps with his arms outstretched in front of him and had a huge grin on his face when he arrived safely.

Seems like the walker is helping Mason develop his core muscles and find his balance. It is so much fun to watch him take these first couple of steps!

Pulmonary Follow-Up

2009-01-28T21:39:00.002-05:00

Today Mason and I had to venture out in the snow to go to his Pulmonary follow-up appointment. Even though we left really early, we still managed to get stuck in a traffic back-up and were 30 minutes late to his appointment. Fortunately everyone else was late too and we were still able to get in right away.

Mason weighed in at 25 pounds, 1 ounce. He was up 5 ounces from his last appointment which is great. He is continuing to grow really well and his measurements were given to the nutritionist for follow-up. His weight, length and head circumference are around the 25-30th percentile on a standard scale (not correcting for his prematurity). This is great news!

His last chest x-ray looked good and the doc confirmed in the spring that we would most likely get rid of his Flovent to see how he does. They said he is on it now only as a precaution for the winter months in case he gets a respiratory virus. They will also do another PFT (lung function test) in the spring/summer to make sure he tolerated the change.

We couldn't be happier with the news and we will have a return vist sometime in April/May.

Walking the Halls

2009-01-15T10:52:00.005-05:00

Mason took a huge step forward yesterday at his PT session. We have been working with a walker to help him learn to walk. So far he has not really been too interested in using it. His PT was very persistent yesterday and we were able to get Mason interested in using it. He seemed to really enjoy walking upright and was even walking the halls of the school! We didn't expect him to do this for another couple of weeks, but he surprised us and did it yesterday! Way to go Mason! We have a walker at home and he was using it to walk across the family room last night. I am working on trying to capture a photo or video to post.

Surprise Chest X-Ray

2009-01-13T16:27:00.002-05:00

Yesterday Mason went in for a "surprise" chest x-ray. He has one scheduled with his Pulmonary follow-up on the 28th of January; however, over the past couple of days he has been really gaggy on and off of his feeds. He was even gagging and retching during his nap, which is really unusual for him. Travis and I were pretty concerned seeing how his last chest x-ray was questionable for possible reherniation. A reherniation would mean that Mason's gortex patch (over the hole in his diaphram) would have separated from his tissue and allowed abdominal contents back into the chest cavity. Common signs of reherniation included respiratory distress, bowel obstruction, and vomiting. Since Mason has a Nissen wrap, he cannot vomit, so it is really difficult to tell with him.

Travis and I decided to take Mason in for an x-ray early this week. I found out one of the surgeons that knows him really well was in clinic yesterday. We went in and Jeannie was gracious enough to stay with him during his x-ray (I have to step out because I am pregnant).

We spoke with Mason's surgeon and there is no sign of reherniation. It was confirmed by the official radiology report this morning. This really put our minds at ease for the time being. We were almost expecting to see some sort of bowel in his chest after the questionable x-ray in November.

Now we just need to figure out the source of the extra gagging. Last night he did great and today he did not gag when he napped. He has learned how to make himself gag which is pretty common in kids with feeding difficulties. This makes it harder to determine if the retching is being caused by a real gag or a fake gag. It he has a full tummy, both will make him retch. We will keep an eye on it and consult with his surgeon in a couple of weeks if it does not improve or gets worse.

Christmas Update

2009-01-07T20:53:00.005-05:00

We enjoyed a really fun Christmas Holiday with Mason this year. Now that he is older, he was able to notice and enjoy the festivities going on.

He loved the Christmas tree and loved to turn it on and off (it was tied into a light switch). He also loved to touch the ornaments. We had some pretty bad weather in the weeks leading up to Christmas and not many people in the area had a chance to put up outdoor lights. Travis was a trooper and got out there in sleet/rain to put up some outdoor lights so Mason could enjoy them. What a wonderful Dad! We also took Mason to see the county light show. It is miles of scenic road that you can drive through at night and it is filled with lights, many of them move to create various holiday scenes. He loved the trip and was pointing and smiling at all of the lights.

Mason was spoiled by all of the gifts from his Grandparents and Aunts. He now has lots of new toys to play with. Santa brought him a playhouse that will stay in our dining room until we can move it outside in the spring. We had lots of fun putting it together on Christmas Eve after Mason went to bed. When he woke up and saw it, he nearly jumped right out of Travis's arms from excitement.

Here are a few photos from our celebrations:

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Developmental Progress

2009-01-07T15:21:00.002-05:00

Over the past couple of months, Mason has made some pretty big strides in the developmental department. He seems to be learning so fast right now!

For a while, we were all worried about his speech progress. Over the past couple of months he has picked up and is using lots of different words. I will try my best to give you a sample of his vocabulary: ma-ma, da-da, ba-ba, boo-boo, uh-oh, bye-bye, up, off, on, there, row, Dora (he loves the cartoon), knee, ball, dog, yeah, no-no, oh, school, turtle, and fishy. He loves to try and repeat what we are saying and it seems to be how he is picking up so many words so quickly. He latest attempts are with the words clock and truck.

Over Thanksgiving, Mason's Grandma and Grandpa gave him some animal magnets. He absolutely loves them and is able to identify almost all of them when asked to find them. He has also learned how to make the animal sounds for cow, dog, cat, monkey, sheep, and lion. We can't believe how quickly he was able to learn all of this. The magnets have made all the difference for him. I think we will be trying to find magnets for colors, numbers and letters in the future.

We have also been working on identifying body parts with him. When asked, he will point to his head, nose (he even sticks his finger up his nose for smiles), ears, mouth, belly, knee, and foot. We are also working on him becoming more aware of his g-button and he will occasionally point to it.

Physically Mason is progressing, and we are hoping that he will be walking within a couple of months. He is still cruising everywhere and crawling really well. Over the past few days we have seen him take more risks and let go so that he is standing on his own for 5 to 10 seconds. He prefers to do this only when we are not looking :) Mentally he is ready to walk, but his core strength is not quite there yet. He had 6 abdominal surgeries, his chest was opened for heart surgery, and there is a large patch that is holding his abdominal muscles together. It will take some time for him to develop that muscle strength. He also had brain bleeds when on ECMO that bled directly into his brain tissue in the motor function area and for the next while will still be "on the bubble" when it comes to a mild cerebral palsy diagnosis. We are still so proud of all of the physical obstacles he has overcome to even get where he is now. It has been no small feat for sure!

Mason is learning to walk now with the help of a walker, both at home and at PT. I will post some pictures soon. He is having trouble learning to walk with regular push toys because he "folds" over pretty easily and ends up leaning really far forward. We think he feels pretty unstable and will usually walk the toy on his knees instead. With the walker, he is able to use his arms to hold his trunk upright and keep his feet underneath him. He is not a huge fan of the walker right now, but hopefully in a couple of weeks he will be using it to walk the halls of his school. Once he gains enough core strength to balance, the hope is that he will be able to start walking unassisted.

Way Past Due - Early On News

2009-01-07T15:09:00.002-05:00

Sorry to keep everyone waiting for an update lately. This past month has been a whirlwind of activity. We had a very busy December and have also embarked on a kitchen remodel (you can read more about this in our family update blog).

I have decided to post a bunch of smaller updates instead of a novel that will cover everything. This way, you can pick and choose which ones you want to read.

I will start with the great news we received from Mason's Early On program. In early December, they did his yearly review which includes testing in various areas. Mason did great. His speech, social and cognitive skills are either testing within range or slightly ahead of his adjusted age. His fine motor skills still need some work, but are not too far out of normal range. His gross motor skills are still a struggle for him, but he seems to be slowly catching up. Overall the review was very positive. His therapists stated that once Mason starts walking, he will finish out the school year and then will most likely be discharged from Early On. WOW! They also suggested that he join a playgroup next year for normal 2 year olds at one of the local elementary schools.

Mason has made a ton of progress and we are really excited for him!

Thanksgiving Adventures

2008-11-28T16:52:00.002-05:00

I hope everyone had a wonderful Thanksgiving Holiday. Travis and I feel so fortunate and are so very thankful for many reasons. Going through what we have in the past couple of years have made us realize what is really important in life. We are so thankful for Mason and his health. We are also thankful we have such a supportive network of friends and family. We have formed some wonderful friendships along the way.

This week, we took a trip up to Northern Michigan to visit Grandma and Grandpa Ellinger for Thanksgiving. We had a great time and Mason seemed to really enjoy the trip! They even had snow for us to play in!

Mason has really been cruising the furniture moving from object to object without a second thought. He can let go momentarily and balance for a few seconds. He has also been trying to repeat what we say. He even learned to say wow this weekend. He is also saying "turtle", although I am not sure most people would understand what he is saying :)

Here is a montage of pictures from this week. Enjoy!

Make photo slide shows at www.OneTrueMedia.com

New Feeding Plan

2008-11-23T17:18:00.003-05:00

We are trying a new feeding plan with Mason. As many of you know, we seem to be constantly revising and tweaking his feeding plan in hopes that his oral intake will increase. Our newest big revisions have come from the CDH clinic and our latest meeting with his Occupational Therapist.

I haven't posted much about this lately because I was afraid I would jinx Mason's progress. Mason has started drinking water, a really big step for him. Each day is different and sometimes he will take only a little, while other days he will drink 2 1/2 ounces. He has also overcome a HUGE hurdle recently. Until recently, Mason would gag and retch if he managed to get any crumbs or food into his mouth. Even pureed food would make him gag. Now Mason is willing to put food into his mouth and take small licks or bites of pudding. He has started to bite into crackers and goldfish and will even swallow the small crumbs left over, while removing the larger pieces from his mouth. Mason still has fear when larger pieces make it into his mouth and he will rake them out. We feel he is getting close to wanting to chew the larger pieces, and overcome this next big hurdle.

Now for the newest feeding plan. I must warn you that this goes into detail and probably won't mean very much to those who don't have tube fed kiddos...

Mason gets 30 ounces of 30 calorie formula per day, or 900cc's. His daytime feeding plan is split into boluses (or large bursts formula). He gets 4 boluses a day with 6 ounces (180cc's) and right now is taking them at a rate of 290 cc's/hr. Each bolus takes about 45 minutes to deliver. At night Mason gets 170cc's of formula delivered at a continuous rate of 45cc's/hr. His continuous feeds take less than 3 and 1/2 hours (since our pump is a little fast at lower feed rates).

This is a pretty big jump from where we were at before. Just two weeks ago, Mason was only getting 5 ounces of formula at a rate of 250cc's/hr. He received 250 cc's of formula at night for 5 hours (at the same 45cc/hr rate).

Our goal this week is to slowly increase the rate so that his bolus takes closer to 30 minutes. Once we get closer to 30 minutes, our next goal is to get him to take 7 ounces of formula (or 210 cc's). Every time we increase his bolus amount, we are removing a portion of his continuous night feed. The reason for this is that the night feeds pretty much zap any hunger he may have during the day.

We still have yet to determine if Mason is having any hunger cycles. We try and space out his boluses by 3 and 1/2 to 4 hours to allow him some time to get hungry. Before each bolus, I offer a sippy and snacks for him to take in orally. He also actively participates in lunch with me and dinner with Travis and I. At these times, we aim to give him experience with the food that we are eating, along with his usual crackers. This helps him to overcome his texture aversion.

Another goal just given to us by his OT is to try and get Mason to drink a little bit of whole milk. He is very willing to take sips of what we are drinking, such as water, gatorade, or milk. We hope to have him start taking whole milk in some measurable quantity. Once he can consume a few ounces per day, our OT will propose a 2-3 week trial of eliminating his dinnertime bolus. The goal here is to allow Mason to develop the connection between hunger and orally satisfying that hunger. Since Mason has been tube fed pretty much his whole life, he was never able to develop the connection that tells him to eat if he is hungry. As long as he is 100% tube fed, his tummy magically fills with formula when he is hungry. The hardest part will be convincing Mason's team of docs to buy into this 2-3 week trial, especially during the winter months. Since he is in the 80% for weight, I feel we might have a good shot at it. The milk he drinks will offset the calories lost by eliminating the bolus (and hopefully help convince his docs to allow us to try).

The biggest challenge for us when it comes to Mason's feeding seems to be his internal anatomy. Normally, we would try and have Mason receive a bolus while playing with food so that he can make the connection that food satifies hunger. However, Mason has some interesting anatomy and cannot tolerate a bolus while sitting upright. Somehow, his stomach does not empty well while his is sitting. He has his docs stumped. We give all boluses in a reclined position and he handles them really well. When he gets his bolus, we try and have him suck a pacifier (although his drive to do this is naturally fading with age) or give him a cracker and sippy cup.

I will post another feeding update in a couple of weeks.

New Blog

2008-11-21T17:02:00.002-05:00

We originally created Mason blog to keep our family and friends up to date on his fetal surgery, birth and progress with battling CDH. Since then, his site has grown to help provide information and hope to other families faced with a CDH diagnosis.

Now that we have lots going on in our family and are expecting baby #2, we have decided to create a new blog to keep our family and friends updated on all of us. You can find our new site at http://familyfour-rosie.blogspot.com.

We plan to keep Mason's blog up to date as well, but more specifically related to his progress with CDH. We really don't want to lose site of the information and hope that his page can provide others.

CDH Clinic - Long Update

2008-11-14T21:43:00.004-05:00

Thursday was Mason's big day at the UofM CDH Clinic. Even though he had to wake up early for his appointment, he seemed to be in a good mood for the day.

First, Mason saw the same Physical Therapist that treated him while he was in the NICU. He did an evaluation to see where Mason falls on the charts for his gross motor skills. Right now, Mason is at a level equal to 10 months and 3 weeks. This was not really unexpected news for us, as we are currently working with Early On to try and get him caught up. The therapist thought that if we really challenge Mason physically at home, he may be able to catch up at a faster rate. We will share this info with his Early On therapist to try and develop a more structured program for him.

Mason saw a dietitian next. Overall they are happy with his weight gain and size. He is in the 80% for weight and 75% for height (on a scale corrected for his prematurity). We have a plan to modify his feeding schedule slightly so that he will only get 3 boluses during the day and 4 to 5 hours of continuous feeds at night. It will take us about 4 weeks to get to this goal if all goes well. The plan is the modify it slightly every week until we reach his new goal. The reason behind this new plan is to space out his feeds by at least 4 hours to allow more time for hunger to develop.

Next we saw an Occupational Therapist. It was nice that this therapist has some prior experience with Mason (from last week's appointment). He is showing some very positive signs that he is ready to venture into eating. Lately he has been drinking more and more water and even drank 2 and 1/2 ounces one day last week. He is also willing to explore and taste and variety of foods now. Tonight he even ate 4 to 5 small bites of vanilla pudding, a huge step for him!

Next we saw the Pulmonologist. They are very pleased with his progress so far. His lung function falls within normal range, but on the low side. Given Mason's history, they were not expecting results this good. We are all amazed at how well he has done in this area! The plan is to continue with his breathing treatments until winter is over. In the spring, they feel that we might be able to discontinue them since he does not show any obstructions when breathing.

Next we saw the Pediatric Surgeon. He was very impressed with Mason's progress so far. We reviewed his latest chest x-ray from last month and there seems to be some areas of concern. Mason's CDH was on the right side, so it is difficult to tell what is really going on. We did see some bowel above his liver, but it looks to be beneath his diaphragm. We are hoping that he did not reherniate, but we know this is very common in kids with a patch. Right now, the plan is to take another x-ray in 3 months. We will be watching him closely for any signs that might indicate a need for quicker action.

Lastly, we saw the Cardiologist. Mason had a heart echo on Monday and the results were good. He does not have any pulmonary hypertension at this time. This is pretty much what we expected since he did not have to struggle with this at birth. They had a hard time seeing all of the pulmonary veins and how they returned to his heart. There were many factors that played into this: his age, the fact that he was sedated and he has some strange anatomy in that region (one of the reasons ECMO was difficult for him). The plan is to see the Cardiologist yearly and then get another heart echo when Mason will tolerate it while awake, usually around age 3 or 4. The great news is that he shows no ill effects of having ECMO cannulation through the heart. His heart murmur has also seemed to disappear.

Mason will return to the CDH clinic in 1 year. Until then, he will continue to have individual follow-up appointments in each area. His PT and OT schedule will remain the same.

I have to say how proud we are of Mason. He was one of the sickest CDH kiddos that UofM had and now he is doing great! We were reminded of how much a miracle he really is!! We have received such great medical care from UofM and have such a wonderful network of friends and family that have prayed for and supported us. We have so much to be thankful for.

Watching Outside....

2008-11-09T11:05:00.006-05:00

Things have been going pretty well here. We are now officially in "lock-down". This winter we will not take Mason to any public places, besides Dr. appointments. He has approval to attend playgroup once per week and attend family functions this winter (if all attendees are healthy of course).

Tomorrow Mason will be going in for a sedated heart echo. This is just a follow-up before our big CDH clinic appointment at UofM. It is especially critical for Mason since he had ECMO cannulation directly into his heart (a procedure often used for infants with congenital heart defects), resulting in 3 heart surgeries. Mason was not born with any heart defects, however his anatomy did not allow him to sustain on ECMO the traditional way. Hopefully they don't see anything alarming.

Thursday is our CDH clinic appointment at UofM. They just developed a multi-disciplinary clinic for CDH patients. When we go, Mason will see Pediatric Surgery, Pulmonary, Cardiology, PT, OT and Dietary. We are very excited to see everyone all in one appointment. We are so thankful that UofM has developed this program.

Friday we have our 16 week ultrasound for baby-to-be Ellinger. We have still not decided if we are going to try and find out the sex. Right now we are leaning towards having it be a surprise. I am thinking that curiosity might get the best of us, and we may change our minds later.

We spent most of the weekend at home cleaning up leaves and branches in the yard. Travis and I had a chance to get out to see a Lions game this afternoon. It started out as an exciting game but unfortunately the Lions lost again. Grandma and Grandpa Sennett looked after Mason for us, and wore him out :)

I captured a few good pictures of Mason watching his Dad work outside on Saturday. He loves to stand and look out the front windows.

Halloween Fun

2008-11-03T19:03:00.003-05:00

We hope everyone had a great weekend. Our Halloween weekend was filled with excitement. On Friday, Mason visited his CDH buddy Riley for a playdate. They had lots of fun. Riley's mom and I dressed them up in their costumes and took a few pictures. I don't think either boys really enjoyed this part, but we sure did :)

Mason's Grandma and Grandpa Ellinger came down for a weekend visit as well. We dressed up Mason and decided to take him to trick-or-treat at a couple of neighbors houses. We didn't take him out any further since it is cold and flu season. We managed to get him out before many other kids were out to avoid germs. We spent the rest of the evening roasting pumpkin seeds and handing out candy.

Now for the pictures you have all been waiting for :)

Pumpkin Patch & Cider Mill

2008-10-23T09:11:00.005-04:00

Last weekend we took Mason to our favorite local Pumpkin Patch and then to our favorite Cider Mill. He really enjoys getting out, especially when we are outdoors exploring things. He loved the pumpkin patch and was even willing to touch the pumpkins. At the Cider Mill he loved touching the corn stalks and hay and even had a chance to sit on the tractor with his Dad.

I love this picture because he was looking back and smiling at his Dad :)

Exploring the pumpkins....

Cider & donuts with Mom (can you tell who inherited my super fair skin?)

With Dad by the cornstalks

Sitting on the tractor with Dad

Big Brother

2008-10-12T20:52:00.002-04:00

We have a very special announcement. As you can tell from the title, Mason is going to be a big brother! We are all very excited to add another member to our family!

We discovered in August that we were pregnant and I am now 12 weeks along. Our official due date is April 27th. We just had our first early ultrasound on Friday and the baby looks great so far with a strong heartbeat. We have some detailed testing coming up next week and again in 6 weeks.

The recurrance rate for isolated CDH (which is what Mason was born with) is only about 2%. It is usually referred to as a sporatic event, having no known cause as of yet. Even though the risk is low, it will always be in the back of our minds until the baby is born.

When we tell Mason he is going to be a big brother, he smiles :)

Update & Pic's

2008-10-09T20:27:00.005-04:00

I don't really have any good excuses for why I haven't posted in a while. I guess I decided to take a little break to get some much needed house cleaning and organizing done.

In the last few weeks, we have been enjoying whats left of our nice weather before the real cold stuff comes. Mason has really developed a love for being outdoors and I try and make it a point to take him out everyday. When it is colder, sometimes we just sit on the porch for a while and watch for Dad to come home. Today the weather was nice so we pushed him around in his wagon and let him play in his Cozy Coupe.

We have had some routine doctor appointments and follow-ups. Mason had his well baby check a few weeks ago and received some vaccines. To our surprise, he only cried a couple of times and once I picked him up, he stopped. Yesterday we had a follow-up with his Pulmonary team. They were very happy with his progress. He was even recovering from a cold and his lungs sounded clear and equal. Since he is doing well with growing and lung function, he will not need the shots to prevent RSV this winter. This was great news. We received a referral to a Pediatric Dentist since some of Mason's upper teeth are coming in discolored. This is most likely due to all of the antiobiotics he received during his NICU stay. The good news is that adult teeth start to form around 4 months, and by that time Mason was home and off of all antibiotics.

A couple of weeks ago we took Mason on this first trip to the zoo. We met up with my sister and Mason's buddy Austin and his parents. It was a pretty chilly day, but we had a lot of fun. We saw lots of animals and I think Mason enjoyed himself. We waited until the end to take the boys on the train, but they both fell asleep before we could ride. We decided to let them sleep :)

Mason and his partner in crime.

Pick me up please...

It's only a matter of days before I can pull this open....

Can I please have that camera?

Back to School

2008-09-15T20:22:00.006-04:00

The big news last week is that Mason is back to school. He attends the Early On program through the school system. This year he is attending playgroup on Tuesday mornings and he has Physical Therapy on Wednesday morning. Last year, PT was at home, and this year it will be at the school. Mason has also been allowed to attend playgroup for the whole school year. Our Pulmonologist is very happy with his lung function and sees no issue with one hour of exposure per week. This is great news. However, we will still be on lockdown this winter and will need to avoid public places and contact with other children (besides the 1 hour of playgroup).

Our little guy is crawling everywhere and has even developed a "turbo" speed for chasing after the dog. He is doing great with pulling up and cruising the furniture. Stairs have been his latest milestone. He is now able to go up our entire flight of stairs (about 12 steps)! We have been right behind him making sure he doesn't fall. We have already installed a baby gate at the top of the stairs and now we will be heading out to get one for the bottom too.

Mason is also starting to develop a vocabulary. Besides his usual ma-ma, da-da, ba-ba, and boo-boo, he has added ball and dog. We have been working hard to "label" objects for him and have been asking him to repeat words that we say. He does a good job with ball and dog.

Here are some pictures of Mason enjoying the outdoors a couple weeks ago. His Grandma and Grandpa Ellinger were over for the weekend helping us clean up the jungle that came with our house :)

1 Year Home - Aug 20th

2008-08-26T10:54:00.009-04:00

I know...I haven't posted in a while. It has been a busy couple of weeks again. Now that Mason is crawling around, it is next to impossible sit down at the computer for more than a couple of minutes. Our mobile little guy doesn't spend more than a few seconds in each spot and then he is off to the next. He usually crawls right past his toys in search of some trouble spots like the dog dishes, electrical outlets, curtains, stairs, etc. I guess they look more exciting :) He has also learned how to pull himself up on the couch and chair and is starting to cruise around. I can't believe how fast he is developing physically.

We had the chance to celebrate Mason's homecoming anniversary on August 20th. I can't believe he has been home for 1 year already! Time has gone by so fast! Mason has far exceeded everyone's expectations and has healed and progressed so quickly. The only piece of medical equipment we have left is his feeding pump. I look at him today crawling around and it is hard to believe that just over a year ago he was fighting for his life. We want to thank everyone for their prayers and warm wishes over the last year. We also want to thank everyone involved at UCSF and UofM for giving us hope that one day we would be able to bring our little boy home. It has been such a wonderful and rewarding year!

Mason on his first day home, 8/20/07

Mason 1 year later!

Since our last update, we had the privilege to participate in a CDH dinner at the UofM Ronald McDonald House.on Aug 12th. There were about 6 CDH families that joined together to cook a summer dinner for the RMD House guests. We volunteered to grill the hamburgers and hot dogs at our house since we lived close. Travis was such a trooper and he grilled 60 burgers and 30 hot dogs when he got home from work. It was wonderful to have a chance to help out the residents at the RMD house. Although we didn't stay at the house (since we live so close to UofM) when Mason was in the hospital, most of the families that we met had stayed there. UofM is a major center for CDH and heart defects, so many families come from great distances to receive care. The RMD House provides them a home away from home so that they can concentrate on their loved ones.

Travis hard at work grilling

In other news, Mason has started to take a few steps forward with oral eating. He is now drinking some water, about 1/2 ounce per day. For most I am sure this won't sound like much, but for Mason it is HUGE!! Just the fact that he is willing to drink is a big step forward for him. He is also willing to put some things in his mouth to lick. The most popular items are animal crackers, puffs, and goldfish. This is also a very big step for Mason. It shows that he is now willing to experiment and taste a little. Hopefully he can continue this upward trend :)

Test Results & Crawling!

2008-08-11T10:12:00.002-04:00

We had a very busy week last week. Mason had 5 appointments at UofM for various follow ups and tests. We received some pretty good news from the tests.

Mason started out the week visiting his Physical Medicine doc who is keeping track of his physical development. She usually sees him every 3 months just to make sure everything is on track. Initially when she first met Mason, she was very concerned that he might have Cerebral Palsy. The last two visits went great and she sees no evidence of CP! Mason is just starting to crawl (more on that later...) and he is also good at standing and is even starting to try and cruise. She said that Mason is within the range of "normal" for his age! After all he has been through, we didn't think we would hear that term until he was 2 or older. Mason continues to amaze us with his strength and growth.

After this appointment we visited his OT for some feeding therapy. This appointment was business as usual, although Mason has learned to give the stink eye to his therapist. He tells us loud and clear that he does not appreciate these appointments. The OT and I agreed that we need to get Mason off of night feeds. The stomach and digestive system was just not made to get a continuous drip overnight. After much debate with the rest of his care team, the decision was made to remove Mason from night feeds for about 7 hours. This reduced his overall calorie intake, so we will watch his weight closely to make sure he is still growing appropriately.

Wednesday was our biggest day. He had a Pulmonology follow-up and then a PFT (lung function test). Mason weighed in at 23 pounds, 3 oz. The Pulmonary team was impressed at his new size and thought that he should be able to handle the winter months pretty well (with lock-down of course). Next was the big test. He was sedated and the lung function test was performed. Are you ready for this? Mason's lungs are almost normal for his size and age! He falls just below normal and is categorized as having only "mild restriction". After winter, the docs feel that he might be able to shed some of his breathing meds! This is absolutely amazing to us. For those of you who don't know his whole history, Mason was born with severe right sided CDH. He was born with almost no right lung and a severely compromised left lung. It is truly amazing how the human body can recover from something like this.

We ended the week with a hearing test. Mason passed this without any concerns to follow up with. He will continue to be tested every 6 months until he is 4 years old. CDH and ECMO have a strong correlation to progressive hearing loss. It can happen at any time and progress to be moderate to severe in many kids. Before these tests, we always prepare ourselves for the possibility. We will see what happens next time...

This week, Mason started to crawl! It was so exciting to watch and he is so proud of himself! He started by getting onto all fours by himself and a couple of days later he was propelling himself forward. Last night he was trying to crawl everywhere! He has also figured out how to get himself into a sitting position. I left him on the family room floor (lying down) so I could put a pot of water on the stove and when I turned around he was across the room sitting down with a huge grin on his face.

Summer Fun

2008-07-29T22:14:00.010-04:00

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

2008-07-23T18:49:00.006-04:00

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

2008-07-09T22:35:00.008-04:00

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

2008-06-27T11:33:00.004-04:00

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

2008-06-22T19:42:00.006-04:00

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

2008-06-17T16:28:00.002-04:00

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!!!

2008-06-07T09:05:00.005-04:00

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!

Happy Birthday Mason!

2008-06-03T16:22:00.010-04:00

I can't believe our little boy is 1! My how time flies!

Last weekend was a whirlwind weekend with Mason's first birthday and our 6th wedding anniversary on the same day! Travis and I managed to get out for dinner the week before so that we could focus the whole day on Mason. We had family over for dinner, gifts and cake and ice cream. As you can imagine we all totally spoiled Mason and he got lots of new big boy toys. His favorites include a plastic puppy rocking horse (or I guess I should call it a rocking dog). He also loves the alphabet wheel, tool set and gears.

Our Birthday Boy at the start of all the action

Rocking on his new doggie!

Opening gifts was fun!

Birthday cake mess!

Another view, here you can see Buster was also caught on camera!

After the post-birthday cake bath

Everything else is going really well. Mason is almost ready to crawl. He can now get himself into the crawling position from lying down and then he will spend some time rocking back and forth and trying to figure out how he can get to his toy without falling. His upper body strength is now enough for him to fully support himself. Mason is also getting great at standing against furniture without any help from us for longer amounts of time. It looks like he might start cruising the furniture soon. Our physical therapist is extremely happy and says that Mason is getting close to being "age appropriate" for his adjusted age which is about 10 and 1/2 months (since he was born 7 weeks early). This is great news, but the one downside is that he may not qualify for Early On therapy and support after this school year.

Mason has his 12 month well baby check-up tomorrow. I will post another update after that appointment.

May Update

2008-05-18T12:42:00.007-04:00

Sorry it has been so long since we last posted. Now that the weather is nice, we have been busy going for walks and working out in our yard. The house we bought was vacant for over a year and the yard was showing some major signs of neglect! We have been trying to whip it into shape over the past couple of weeks.

Things have been going pretty well since our last post. We have been able to condense Mason's feeds down to 40 minutes. We are thinking that we may be able to condense them even more sometime next week. Mason has decided that he is done with pureed baby foods and refuses to eat them anymore. He has been working with them for 6 months now and he has decided it is time to move on to something more exciting. We are now working with puffs and wagon wheels and items with more texture. He is still in the playing and getting comfortable phase. Right now his favorite thing to do is chuck them off the highchair so that the dog eats them. We are just happy that he is getting comfortable touching them! Buster is now seeing the advantages of having a baby around :)

Our little chatterbox is starting to build a vocabulary! He can now say mama, dada, and boo-boo (our pet name for Buser). He has also added in barking and growling, proof that kiddos really do absorb everything around them! He enjoys waving bye-bye and giving high fives.

Mason's PT is also going pretty well. He can stand for brief periods now supporting himself on a toy or the couch. He is also starting to walk a little when his hands are held. We have been trying to get a video of this, but he gets so excited when he sees the camera he starts bunny hopping instead! Mason is also getting close to being able to crawl. He is able to go from sitting to all fours with just a little help and will initiate crawling to an object if we provide him with some support under his chest. He has the arm motion down and is starting to learn what to do with his legs. He has also learned how to pull up to his knees and then standing from the crawling position, all with just some support under his chest. He seems to be learning everything all at once so we are trying to make sure he gets some practice with everything each day. He is very determined to move, so we are sure it won't be long before he is completely mobile!

Last but not least, Mason will turn 1 on Sunday! We can't believe it is only a week away. I took some time to revist some of our first posts and he has come so far! I am sure Sunday will be a very emotional time for us. We would have loved to have a giant party to celebrate with everyone, however we decided to play it safe (as his lungs are still growing) and just keep the party to immediate family.

Below are some recent pictures and a short video of Mason playing with the light on our ceiling fan.

Going for a walk

Story time (about Michigan of course!)

First shopping trip in a cart!

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Successful Walk!

2008-05-01T22:26:00.004-04:00

First, we wanted to thank everyone who donated to the March for Babies walk. The initial goal was 500 dollars, but Travis was able to triple that and raise $1,500 thanks to all of you! Saturday was pretty windy and chilly, but Travis battled the elements and walked in honor of Mason. Mason and I joined him at the end and were very proud! Next year, we are hoping to create a CDH team and our goal is to have 50 people join us in the walk. If you are interested, please let us know and we will add you to an e-mail list so that you can be notified of date, time and location of the walk next year. We hope that you will be willing to join us in such a great cause! I added a picture of Mason hugging his Dad after the walk.

So far Mason has adapted well to the changes made by the Pulmonary team. He started using his new big boy inhaler tonight. It just takes two puffs, so much easier than a 20 minute nebulizer treatment! We are so happy that another piece of medical equipment can now leave our home.

Tuesday we started going to the Early On playgroup. Mason was pretty shocked to see all of the kids in a circle singing and clapping, but he held it together and had a great time. There is also an Occupation Therapist there along with his usual Physical Therapist. The kids play, sing and have snack time. We are so excited because next week Riley and his Mom will be at playgroup. Riley was born with CDH as well and had a very similar hospital stay and recovery. We are so lucky to have someone who has gone through the same experience as us living so close!

I also included a couple of pictures from Mason's OT appointment at UofM Wednesday. The first one is during therapy and the second one is after therapy and a visit with his girlfriends.

Lots of News

2008-04-23T21:30:00.003-04:00

We have had a really busy week so far. On Monday, Mason received his last RSV shot until November! We are happy not to take him in for monthly shots now! He was beginning to associate the Pediatrician's office with shots and would start to cry when I put him on the table. Unfortunately his gets a round of 12 month shots next month so we really won't get a break until June.

On Tuesday we went to visit his Physical Medicine doctor. She has been following him closely because he was on ECMO. Many of the kiddos on ECMO end up with some development and neurological issues. Mason is no exception as he had some small brain bleeds. At the last appointment, the doc mentioned that she thought that Mason had a mild case of Cerebral Palsy. The good news is that this time she thinks that he might be in the clear for now. She was very impressed with his physical progress. However, there is still a chance that we may see mild CP when he really starts to move with running, jumping, etc. She will continue to follow him closely every three months.

Today we went to visit the Pulmonologist. It was an exciting visit. They were so happy to see him gaining weight and progressing physically. His lungs sounded perfect, even though he didn't have his breathing treatment this morning. They discontinued his diuretics! We are still waiting for the new software to come in so that we can discontinue his oxygen. Hopefully we can do our last trial in a couple of weeks. They also discontinued one of his breathing treatment med's (he was taking two). We are also going to stop using the nebulizer and are going to use a new "big boy" inhaler with the lowest does possible of his other med! We are hoping that he does well with all of these big changes. We also got the go ahead to end our winter "lockdown". This means that Mason can go to public places and can also be around other kids if they are not sick. We still have to exercise extreme caution until he is about 2 years old. This means that when we go out we have to go at "off peak" times. No grocery shopping on Saturday or going out to dinner at 6pm, etc. When we are out, strangers are not allowed to touch him and we need to carry a bottle of Purel around with us. As always, we need to be very careful about being around cigarette smoke and people who smoke. Also when we go to a large family gathering, we need to limit the number of people who hold him, etc.

Mason will start attending a special playgroup at the beginning of May through the school system. It is a special playgroup for kiddos with special needs that have been receiving therapy through Early On. We also have the go ahead to attend Physical Therapy at the school instead of at home!

Enjoying Tummy Time!

2008-04-11T23:16:00.006-04:00

It has been a while since we have posted an update, mainly because the last few weeks have been going pretty well. We are continuing to work on unpacking , which at this point seems to be a never ending job. We are also working on some small projects such as trim work and replacing the old electrical outlets.

Last Friday, Mason had his stomach wrap dilated to help with the gagging. The procedure went really well and took only about 45 minutes. About an hour and a half after the procedure he was acting like himself (despite having just undergone general anesthesia) and we were able to visit many of his girlfriends. We even got to visit with some of his ECMO nurses who we don't have a chance to see too often. I wished that they could have held Mason, but by that point he was getting pretty fussy and was heading for nap time. We also had the chance to meet and visit with some wonderful parents whose daughter Faith had CDH and was in the NICU. It was nice to be able to help provide support to such a wonderful family. Sadly, Faith lost her battle to CDH early the next morning. Our prayers are with both Faith and her family.

It was just last weekend when I was talking to Noah's Mom about how our boys disliked tummy time. This week they both started rolling from back to belly and also started pushing up! I think they must secretly call each other when we are not looking. Hopefully crawling will be right around the corner for both of them. Mason has also discovered a love for dancing. I downloaded some songs for him a couple of weeks ago and he absolutely loves them. He will recognize the song and start dancing. He will dance on his feet, sitting down and kneeling. Any music will do, including music from toys and occasional tv commercials.

Feeding continues to be our biggest hurdle. We have learned that Mason needs to be in complete control when it comes to his mouth. I don't blame him after all that he has been through. He is continuing to learn to self-feed. He is able to put the spoon in his mouth himself and has also learned to "dip" the spoon in the food. We saw his Occupation Therapist today and she is happy with his progress. He now seems comfortable with the pureed food texture, so she suggested moving on to some mashed soft table foods for him to taste and play with.

Travis has two more weeks before his March of Dimes walk on April 26th. We received so many generous donations, Travis increased his goal to $1,000! Thank you to all who have donated to such a wonderful cause! Next year, we will be creating a team in Mason's name so that others who have expressed interest can walk with us.

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10 Months Old!

2008-03-25T23:32:00.007-04:00

I hope everyone had a Happy Easter! We had some family over and had a great time. Mason did really well with everyone and even let his Mom out of his sight for a while with no complaints! The Easter Bunny brought him some toys which he loved!

Overall, Mason is doing pretty well. Last week he weighed in a few ounces shy of 16 pounds. It has been a few days, so we are guessing he is 16 pounds now. UofM just called today and increased his total daily calories to match his new weight. Mason is also going to get another trail off of his nighttime oxygen. We need to straighten out some software issues with his Pulmonary team and we will be ready for trail. Not sure how long the software issue is going to take.

Mason's occupational therapy is going pretty well. He is now totally comfortable making a mess in his baby food. Instead of just getting himself messy he now includes the walls, the floor and the dog :) Our goal is to get Mason to feed himself. Instead of playing with toys in his food, he is playing with spoons and will feed himself a little. So far he is enjoying all of the baby food flavors, but only if he feeds himself. We are also working with a sippy cup.

Unfortunately Mason is still having some gagging issues. We think this is caused by a combination of his small stomach and his weak esophagus. After some discussion with his surgeon, we both agreed that it is time to take a look and possibly dialate his stomach wrap, which could possibly be a little tight. His esophagus has always been pretty weak because of how his anatomy had formed before he was born. We depend on gravity to help him digest after he eats something by mouth. This will hopefully improve and normalize as he grows and gets stronger. The procedure is scheduled for April 4th and will last about an hour. Mason is undergo general anesthesia and the surgeon will use a small camera to look at everything. The procedure is scheduled as outpatient, so he should be able to come home afterwards.

You may have noticed an addition to the page in the last couple of days. Travis will be walking in the March for Babies on April 26th. His goal is to raise at least $500 for the walk. Thank you to everyone who has donated or committed to donate so far!! The March of Dimes is a very important organization to us because Mason was affected by both a birth defect and prematurity. We are hoping that starting next year, Mason and I will be able to join Travis in the annual walk.

Family Easter Picture

Playing with toys.

Feeding myself.

New Surroundings

2008-03-13T23:55:00.007-04:00

Where do I start? Things have been pretty crazy lately and I have a lot to update.

We have moved! Our house sold and we moved into our new house on Sunday. Selling our house turned out to be a very complicated procedure, but we are almost through it and will probably close by the end of March. While we were in this process, we found a new house and spent a little time fixing it up before we moved in. I am happy to say that we are now in a more comfortable situation and I can remain a stay at home Mom. Bear with us for a while as we are living out of boxes and can't seem to find anything that we need!

The other big news is that Mason has tripled his birth weight. He was weighed last week and is over 15 pounds! He is starting to fill out more and we are seeing some baby chunk! Mason is also ready to come off of his diuretics! He has been outgrowing them and is now at a weight where they are not effective anymore. The other good news is that we are going to attempt to get him off his nighttime oxygen in the next week or two. They will probably wait to see if he does ok with the oxygen removed before they discontinue his diuretics. Slow and steady is the key!

Mason has also made some pretty good physical progress. He is now sitting on his own unsupported. He looks so cute sitting there! He still topples over a bit and is starting to put out his arms to try and break his fall. Mason is also working on serial rolling. He has figured out how to consistently roll from tummy to back and can roll from back to tummy with a little help. He rolled from his back to tummy once this week when I wasn't looking. He is also starting to imitate us by waving bye-bye (hit or miss) and raising his arms in the air.

Our little guy has become such a talker! He is always talking or practicing his scream. He can even scream like a girl! For the last few weeks he has been jabbering different sounds together. Last week is was b sounds like ba-ba-boo, etc. This week is d sounds. He is saying da da, but just not by itself yet. He just started this today and put a huge smile on his dad's face. We have also heard ma ma in his jabbering a couple of times this week. He talks so much during the day that I wouldn't be surprised if sentences started coming out :)

Oral feeding is still pretty difficult for us. We switched from a speech therapist to an Occupational Therapist in hopes that some sensory work might do the trick. Right now our goal is to get Mason's gag reflex further back in his mouth. Our second goal is to get Mason to make a mess. This is the fun part. Instead of feeding him we dump baby food, jello, pudding, whipped cream, etc. onto his tray and let him make a mess of it. However, we have found that this is easier said than done. Mason does not like to get his hands, or any other part of his body dirty and we had a tough time at first. He seems to be doing better now and I am doing a TON of laundry. I have to say that Buster seems to be enjoying the mess too!

Playing and Talking

Wearing My Shades!

Petting Buster Before Bedtime

9 Months Old!

2008-02-27T15:27:00.004-05:00

Monday was another special milestone, Mason is 9 months old!

It was during February of last year when we recognized that this wasn't going to be a normal pregnancy. At our 18 week ultrasound, we were told the baby was a boy. We left excited, but with an uneasy feeling since the technician spent a lot of time leaving the room to consult with the radiologist and coming back to take more pictures. Since this was our first, we assumed that this was normal for the 18 week ultrasound and that nothing was wrong. We received a call later in the day telling us that there seemed to be something going on with the location and orientation of his heart. We were scheduled to get a fetal echo done in two weeks. After a nervous wait, we had the fetal echo which showed his heart to be structurally fine, however it was pushed to the left side of his chest. Two weeks later, we had a level 3 ultrasound and the diagnosis was severe right sided CDH. From that moment on, our lives were changed forever.

I can't believe everything we have been through in the past year. I can't even believe it has been a whole year already! I think we have experienced every emotion there is, multiple times over. We continue to be in awe of Mason's strength every day. He is a truly happy baby, even after all that he has gone through. He brings such joy to our lives every day, and to those around him! We are so proud of all that he has accomplished!! We have made so many friends along the way and received so much support from everyone. Thank you! We have learned some great lessons: miracles do happen, life should never be taken for granted, faith and prayer are an important part of life.

Our lives have been changed forever, in the greatest of ways!

Happy 9 months Mason!

6 Months Home!

2008-02-21T09:12:00.003-05:00

Yes, Mason has been home 6 months! Yesterday was the 6 month mark. I can't believe how fast the time has gone and how much progress he has made! I just look at him in amazement. He has accomplished so much in such a short time.

Not much has happened in this past week as far as appointments go. Yesterday Mason had his monthly RSV shot. When he was weighed, he was just 4 ounces away from 15 pounds! I think the weight may have been a little deceiving though. Mason hadn't "gone" in a couple of days (if you know what I mean) and when he got home he "went". I was at the dentist, so Dad got the honors of changing that diaper. Lets just say that we don't think he weighs as much after that :)
Last Friday Mason had a hearing test. Everything is within normal range which is good news. His doc will continue to check him every 6 months until he is 4 years old.

Physical Therapy has been going pretty well. Our therapist was extremely happy when she came out on Monday. She hadn't seen him for two weeks and was really happy with his progress. Mason is starting to get to know her better so he spends less time crying because of his stranger fear. He doesn't mind playing with her, but still does not like to be touched or moved by her. Mason is now fighting when he is on his belly. This is great because he is showing that he is motivated to move and flip over. Prior to this, Mason would just lay and cry when he was put on his belly. He is also doing great with sitting. He can balance pretty good when I give him a little bit of help. His legs have made wonderful improvement. He can now grab them and play with his feet completely on his own. It is now one of his favorite things to do when he is having his diaper changed. The last thing to work on is to get him to spread his legs out which he is starting to do. Every day we have him straddle a bouncy ball and we bounce to "3 little monkeys". We are also concentrating on his arms. They are still pretty stiff and he is not yet able to use them to help himself balance when he starts to fall over when sitting. The bouncy ball is also helping him to learn balance and loosen his arms.

Feeding is still a bit of an issue. Mason doesn't seem very motivated to eat lately. We have been trying to give him different tastes of more flavorful food. We think that he may be tired of baby food flavors. We have started to give him some Stage 2 foods that combine flavors and our Early On therapist is going to bring us a baby food grinder so that he can taste what we are eating. Last week he ate some avacado and some ranch dressing and seemed to enjoy both. We also found him a sippy cup that he does not have to suck, but is still spillproof. All he has to do is "munch" on the spout and liquid comes out. He does pretty well with picking it up and tipping it himself, but is still not fond of liquid in his mouth. We will use it every day in hopes that he will get more and more used to it.

Mason has become quite the dinnertime personality. Here is a clip of him having some fun!

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Rough Week

2008-02-13T16:50:00.002-05:00

Mason had a pretty rough week last week. When he received his g-button, he began gagging and retching multiple times a day. He also began coughing frequently. On Friday we visited ped. surgery and they fitted him with a smaller and shorter button in hopes that it would take up less room in his tummy (which is already pretty small). He also visited the Pulmonologist who looked him over and ordered a chest x-ray to rule out any respiratory illness. His lungs sounded clear and his chest x-ray looked good. Unfortunately we discovered that Mason had not gained any weight since he was weighed on January 23rd. Whatever was bugging him was enough to throw him off his growth curve.

After those visits on Friday, we had the opportunity to visit Mason's buddy Noah in the PICU. Unfortunately Noah had to have an additional repair surgery due to reherniation and was struggling to recover from his procedure. We wished we could have visited under better circumstances. It was great to see Noah and his Mom and Dad again. They are wonderful parents and great friends! Noah began to feel better over the weekend and was able to come home on Sunday.

For the weekend, we had planned a trip up north, but had to cancel that because of Mason's gagging and coughing. We didn't want to be very far from UofM in case things went downhill. Grandma and Grandpa Ellinger came to see us for the weekend instead.

The button change has improved the gagging and his coughing is pretty much gone. Our best guess is that the gagging was causing him to cough. He still struggles with his morning feeds but seems to be fine in the afternoon and evening.

Mason is trying his best to turn into a roly-poly. He still needs a little assistance, but is now realizing that rolling will get him to out of reach toys. He is also very close to being able to sit by himself. I am thinking in the next few weeks, he will be rolling and sitting pretty well. His physical therapist seems pleased, but we still need to work on tummy time. Some days are good, some are not. She really wants him to start crawling before walking. I think as soon as Mason builds a little more upper body strengh, he will start. He can get his legs underneath him, but his arms don't cooperate yet.

Feeding is not going as well because of the gagging, etc. Seems that Mason has gone on baby food strike! He is refusing pretty much all of his favorite foods. He did a little better at dinner tonight so hopefully we can get back on track soon.

Update

2008-02-01T18:24:00.000-05:00

I can't believe how much time has passed since our last post. I hope that you enjoyed the video.

Lots of things have happened since our last update.

Mason is continuing to do really well. At our last appointment, he weighed a little over 14 pounds! Still not on the growth chart, but he is starting to gain some ground and will be catching up soon. A few weeks back, Mason's formula was changed a bit to contain 26 calories/ounce. We will see the results of this new change when he is weighed at his next Pediatrician appointment in a couple of weeks.

Mason also joined the g-button club with his other CDH buddies. He received his button about a week ago but seems to be having a little diffuculty tolerating the switch. The button takes up a little more room in his stomach and some of his bolus feeds are causing him to retch. So far, we have been able to control it with some extra venting before and after each bolus.

We are still plugging along on oral feeds. It is slow progress, but still progress! He now eats at least twice a day and can take up to 1/2 a jar of baby food in each sitting (if he is having a really good day). Most days it is about 1/4 jar of food each sitting. He is also experimenting with a sippy cup. He grabs it by the handles and puts the spout in his mouth, but just chews on the spout. A little liquid comes out when he munches, and he is still trying to get used to this. Mason certainly has a fear of liquid in his mouth. He most likely associates it with the pain of reflux that he experienced prior to his last surgery.

Teething has been the way of life for him the last couple of weeks. He has two teeth on the bottom that have broken the surface of his gums. Now we are just waiting for them to come out a little more so that we can take a picture of his new pearly whites!

Physcial Therapy for his neck is now scheduled for once per month. He is still tipping his head to the right, but seems to have a greater range of motion. We are still stretching it out every day, multiple times. He is also receiving therapy through the school system at home once per week. Mason is able to do a little more on his belly, so tummy time is getting a little easier. He is now able to reach out for toys in front of him and he can even do brief push-ups. He can still stand really well and has even started to initiate steps on his own. His legs are now more limber and he is very close to being able to hold his foot in his hands for brief periods of time. Pretty soon he will be sucking on his toes!

At our last Pulmonary appointment, Mason was taken off of his Sodium supplements and was given a 2 night trial without oxygen. The docs were able to record these nights with a machine that tracks his pulse and oxygen levels. They are currently looking that the data, but preliminary feedback is that Mason might not be quite ready to come off at night yet. We may need to keep him on oxygen at night until April. We did recieve some great news that if Mason keeps up the weight gain, at his next weight in, we will be able to eliminate his diuretics. The docs were also really pleased with his latest chest x-ray. Given the severity of his CDH (he really didn't have any right lung and a small left lung), his lungs are growing really well. The doc said that by looking at his x-ray, you would never know how severe his condtion was at birth. We were really excited by the news!

Unfortunately both Travis and I came down with a cold last week. We fought off sickness as long as week could, but it found one of us and spread. Mason is showing signs of catching the cold as well. He doesn't have a runny nose, but seems to be coughing more than usual and was running a low grade fever this morning. The Pulmonary docs have us giving him some extra breathing treatments and that seems to have helped quiet his cough. So far his sat's are great and he does not seem to be in any respiratory distress. Hopefully he can fend it off!

Check out Mason's photo gallery, I have added lots of pictures!

Mason's Video Montage

2008-01-13T12:00:00.000-05:00

Hi everyone! I just wanted to take a minute to share the video montage of Mason that I made Travis for Christmas. Enjoy....

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Happy New Year!

2008-01-03T12:17:00.000-05:00

Happy New Year! We hope that everyone is getting a healthy and happy start to 2008!

We had a really busy holiday break! Since Mason is still on lock-down, we hosted Christmas at our house. Having a holiday is one thing, but doing it with a baby who has special needs makes things very hectic. We survived and had a great Christmas day. Our family was very supportive and a HUGE help! Everyone brought dishes to pass and we had a very nice Christmas! Thanks for all of your help! I have added some of the photos to the Photo Gallery.

Mason is still doing very well. Just before Christmas he weighed about 12 and 1/2 pounds. This was about a 1 lb gain in 2 weeks! If he keeps gaining like this, he will catch up to the growth curve in no time!

We have been playing lots on the floor and he has shown a lot of physical improvement. He can roll himself over just by grabbing onto a finger and pulling. He is close to being able to do it himself! He is also tasting more baby foods. I will just call it tasting, because he does not yet eat any sizeable amount. So far we have learned that he does not like applesauce and is not very fond of pears either. He seems to like bananas and sweet potatoes. I think he has my sweet tooth! Next week we will be starting with a sippy cup. Mason is still not taking any bottles and is just "munching" them. Given his age, his therapist thinks that it might be a lost cause at this point. Hopefully the sippy cup is more successful!

Update

2007-12-21T23:46:00.000-05:00

This week was busy with many appointments for Mason.

On Tuesday, he had an upper GI, neck x-rays and a follow-up with his Pediatric Surgeon. He absolutely hated the neck x-rays, I can't even explain in words how uncomfortable it looked. We had a little episode of bleeding around his g-tube after the x-rays. He was restrained and trying to squirm so much that the tissue around the tube got extremely irritated and started to bleed. When that stopped, he had his upper GI. He didn't enjoy that either. Food taken by mouth will go into his stomach only if he is held upright. Mason's esophagus does not work very well at pushing the food down by itself. The docs may need to scope his esophagus in a few months to make sure everything is structurally ok. Until then, he is allowed to eat by mouth if we hold him upright for 30 minutes afterwards.

We tried to feed him a little bit of banana baby food and he actually liked it. We just gave him little bits on our finger and he licked it off. He actually ate 1/2 a teaspoon of it last night. This is a HUGE step for Mason! We will continue feeding him little amounts and we plan on giving applesauce a try next week.

Mason also had his Early On evaluation on Thursday. Since Mason has a qualifying health issue, he is eligible for special education until age 3 through our school district. The evaluation went pretty well. Mason is on target and actually advanced with his social skills. His gross and fine motor skills are behind. Even though he can sit without support and can stand and balance grabbing onto our hands, he has skipped the normal baby floor milestones. Mason will rock from side to side, but with not roll over from his back to tummy or tummy to back. He has just started to try and roll over from his back to his tummy. He is close, but not quite there yet. We have lots of homework with his neck muscles and tummy time (wish us luck). The therapists are discouraging his standing and sitting until he can become more proficient on the floor. We return for another session on January 10th.

We also had to "reverse" his crib so that he is looking to the right to see us enter the room and also to see his crib toys. It doesn't seem to work as well with his g-tube and nighttime chimney feeds. We may have to create a compromise somehow. We will see how tonight goes.

We hope that everyone has a Merry Christmas and a Happy New Year!

Four Generations

2007-12-16T23:18:00.000-05:00

This weekend was very busy for all of us! Thursday night, Mason had a visit from his Great Grandma! We had 4 generations in the house that night. It was a great visit, except for Mason is starting to get nervous around anyone but his parents. Friday night, Mason had some trouble falling asleep and staying that way. He would fall asleep only to wake up moments later and we would work on getting him to sleep all over again. We also spent Friday night preparing for two house showings on Saturday. No bites yet....we were pretty surprised to even have some showings this close to Christmas.

Today was spent clearing the snow! Travis went outside with the snow blower only to return inside 1/2 hour later with a broken belt :( The closest part was in Flint, not a drive that we could have made today. He spend the rest of the day shoveling, and shoveling and shoveling.... I was surprised that none of our neighbors (all of whom have running snow blowers) did not offer to help. Tis the season....hopefully when we move, our new neighborhood will be more neighbor friendy!

This week will be very busy as well. Tuesday Mason has his upper GI and follow-up with his Pediatric Surgeon. Thursday, he goes for his EarlyOn evaluation and then his next RSV shot.

Update

2007-12-12T23:38:00.001-05:00

Sorry it has been so long since our last update. Things have been really busy here with Mason and the upcoming holidays. We have had a lot of showings on our house lately and the cleaning and preparing consumed much of our time last week.

Mason is tolerating his g-tube feeds very well. We have gone up on his feeds slightly to allow him a couple of hours "off" during the day. This is a huge help for me and allows me to carry him around the house without a pump or an iv pole. He is enjoying his freedom! After Mason had his g-tube put in, he started to refuse any bottle we tried to give him. He really protested and was having a meltdown every time we tried. The surgeons think that maybe he is having a hard time swallowing past his wrap and he will go in for an upper GI on the 18th to see. We are hoping that Mason will get his g-button in January. The button will take the place of his long g-tube and will be almost flush with his skin.

Mason will be starting physical therapy at UofM in the next couple of weeks. We will be going once or twice a week. At our last surgery appointment, our favorite therapist Dan came to visit (he took care of Mason while in the NICU). He did a quick evaluation and thought that some outpatient therapy would really help Mason. He is not too far behind, however he has mild torticollis of his neck. The basically means that the muscles on one side of his neck are tighter (on the ECMO side) and he does not have full range of motion. He spends lots of time looking to the left while slightly tilting his head to the right. Therapy will help him stretch out those muscles before it becomes a big problem.

6 Months Old!

2007-12-02T22:19:00.000-05:00

Mason is still doing really well with his G-tube. So far he is tolerating his feeds and has moved to continuous feeds that are plugged directly into his tube. We will continue these feeds for another week and a half and then move on to bolus feeds. We keep him on chimney feeds at night so that he can "burp" through his tube and stay comfortable.

Mason is still talking up a storm. He especially likes to be a commentator on football games. There is something about football on tv that really catches his attention. He is now able to have tummy time again but has decided he likes it even less than before. He would rather stand up. He has hit another couple of milestones this past week. He can pass a toy from one hand to another and when he is in my lap he can pull himself up from sitting to standing by holding onto my hands. I think Mason wants to skip all of the rolling over stuff and go right to standing upright!! Now that his incision has healed and he seems comfortable we are working on sitting without support again.

Last week we visited the Pediatrician for some more immunization shots and also saw the Pulmonologist. Mason's feeds were increased because he was not gaining weight as fast as they had wanted. Most of it had to do with losing weight after his surgery and then taking a couple of weeks to gain it back. If he hasn't gained enough in 3 weeks, we will have to change his formula from 24 to 26 calories. At our next visit, Mason will probably be removed from oxygen all together. They were actually planning on taking him off last week but saw that his throat looked red and were worried that he might be coming down with a cold. If so, it will be nice to have some supplemental oxygen at home in case he needs it. They also thought that the extra oxygen at night will help him retain some calories and hopefully gain weight a little faster. At our next appointment they will also reduce the amount of breathing treatments he is getting every day. We are also hoping that next time he will be completely "grown out" of his diuretics. He was almost there last week.

Tomorrow we will visit one of his Pediatric Surgeons to check on his g-tube and incision and hopefully get the ok to start letting him taste some cereal and baby foods.

Happy Thanksgiving!

2007-11-22T23:35:00.000-05:00

We sure do have a lot to be thankful for this year!!! I hope everyone had a great Thanksgiving! We just had a small Thanksgiving dinner here for the three of us. We decided to keep things low-key to let Mason have some extra time to recover from his surgery. Mason sat at the table with us and enjoyed talking to us through the entire meal. He talked so much there was a point where we couldn't eat anymore because he had us laughing so much.

Here is a photo of him at dinner (notice, no NJ tube!!!)...

Home Sweet Home!!!!

2007-11-19T20:09:00.000-05:00

Mason came home today!! It is such a relief to be home, for all of us, including Buster (who was pretty lonely the last 5 days). Sorry it took us so long to post! Travis and I have been taking turns spending the night with Mason, only returning home to shower and feed Buster, etc. The computer in Mason's room was broken so we were unable to use it to post.

Mason hit his goal feeds on Saturday night and was doing great. Sunday morning the docs were getting the discharge paperwork ready we had a complication. It started on Saturday evening when Mason had still not moved his bowels yet so he was given a suppository. It literally only took about 2 minutes before his bowels moved, and moved, and moved, and moved.... By Sunday morning, Mason was moving his bowels once an hour which is far from normal from him. By Sunday night, Mason had lost about 12 ounces but was showing some positive signs of slowing down. They kept him overnight for observation and to make sure he did not dehydrate. He did great and was sent home this morning.

His lungs did great throughout his stay and remained clear. He never had any major desat's and was able to go without oxygen during the day. He stayed on oxygen at night as usual.

Tomorrow he will get his first synergis shot to help protect him from RSV. Next week we will follow up with his Pediatrician, Pulmonologist, and Pediatric Surgeon to make sure he is still doing well and gaining back the weight he lost.

Recovery Update

2007-11-16T23:26:00.000-05:00

Mason is still doing well recovering from his surgery. His biggest issue is still pain management. He is not as sore but is still requiring some morphine doses a couple of times a day to help him relax. He actually slept through the whole night last night and was comfortable with only Tylenol. Every day seems to be getting better. He was awake more today and even wanted to play a few times. He was also giving us a couple of smiles and talked to the RT that was giving him his breathing treatment tonight.

The docs started to feed Mason through his g-tube today. They started him slow at 5cc's per hour and will increase by another 5 every 6 hours. He is now up to 15cc's per hour. His goal is 33. If all goes well, he will achieve his goal tomorrow evening. It will be a little tough on him since he has never been fed into his stomach and it is still pretty small. So far so good, we are praying it stays that way. If not, the alternative is yet another surgery (for a GJ tube) and we don't want to go there!

Yesterday Mason was moved to the "floor" which is a normal patient room. Travis and I have been taking turns staying with him through the night to make sure he is doing ok.

Surgery Update

2007-11-14T21:49:00.000-05:00

Today's surgery was successful! Mason was taken back to the OR at 7:30am and they made the first incision at 8am. His surgery was finished by 11:30am. There was only one minor complication with his liver. His liver is much larger than normal, most likely because it grew and developed in his chest instead of his abdomen where it belonged. The left lobe of his liver actually covers his stomach which slowed things down a little bit. The surgical team was able to deal with this complication and complete the surgery successfully. The even better news was that Mason came right off the vent with no problems and did not even need supplemental oxygen. He will sleep with some on tonight like normal. He is such a strong little boy and is exceeding the doc's expectations again!

Mason's biggest issue now is pain management. He is currently on continuous Tylonol with Morphine doses as needed for comfort. Needless to say, he has been making good use of the morphine. It does seem to relax him enough to rest a little for a couple of hours before needing another dose. Mason is trying not to move too much because I am sure his belly is sore. He has been sucking away at his pacifier since he woke up from surgery. I don't think it has ever left his mouth so far! You can tell he needs it for comfort and to destress! His is crying a little when he moves or needs more pains meds and his voice is very weak and hoarse from the breathing tube.

Mason will remain in the PICU (for precautionary reasons only) tonight and will most likely be moved to the floor tomorrow. Unfortunately his stay in the PICU means that we will not be able to stay with him through the night. We will try to get some rest knowing that he is in good hands.

Mason will be without food for 24 hours post-op. Tomorrow, we can start to feed him some Pedialyte and the docs will hopefully be able to start his feeds.

Surgery Time

2007-11-13T23:27:00.000-05:00

We heard from the hospital today and Mason's surgery is scheduled for 7:30am, the first one of the day. We have to have him checked in by 6:30am. We are expecting the surgery to last 4 to 5 hours since it is an open procedure and requires a partial new incision. Most of the time they can use the old CDH repair incision, but since Mason's repair was on the right side and his stomach on the left, he will require a new incision. We will update the blog as soon as we have a chance tomorrow. It may not be until later tomorrow night. We appreciate all of your prayers for Mason! We are praying that his surgery goes well with little or no complications!

Mason has been doing well for the last couple of weeks. He loves to stand up in our laps with our hands under his arms for support. He can bear all of his body weight for long periods of time now. Mason has also started to sit up by himself for short periods of time in the last couple of days. He sits leaning forward with his hands holding himself from falling forward. It is so cute to watch him because after 20 or 30 seconds, he topples over. He sure looks like he is proud of himself though! Once we can capture this on film (it will be a challenge) I will post it in his photo gallery.

Mason has also become quite the talker. He loves to babble! See below.....

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Moooo!!!

2007-11-05T23:00:00.000-05:00

Mason has had a good couple of weeks. Aside from another clogged tube today, everything has been going well.

On Halloween we dressed him up as a cow. He hated it at first, but then I think he enjoyed it later. We stayed home and took some pictures of him outside before the trick-or-treaters came. We only had 8 kids this year, go figure after I bought enough candy to feed an army!

He has developed so much over the last couple of weeks. He will now hold in his own pacifier when he sits or lays on his back. He will also grab toys with both hands and hold them for a while and try to bring them to his mouth. Sucking his hands and fingers keeps him busy for long periods of time. He also likes to stand up with support underneath his arms. He loves to talk and he is starting to making laughing sounds. We checked a development book and he is hitting almost all of the 4-month old milestones. We think that this is absolutely amazing given that he was born 7 weeks premature and spent his first 3 months of life in a hospital (most of the time on drugs for sedation and pain). He is truly amazing!

We also have a Noah update! We are happy to report that he had his g-tube and Nissen wrap surgery today and everything went well. Aside from being sore, Noah is doing great and resting up!

Video Clip #1

2007-10-31T01:14:00.001-04:00

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5 Months Old!

2007-10-26T23:48:00.000-04:00

Our little guy turned 5 months old yesterday! I can't believe how fast time has flown by!

Mason is still doing great. He weighed in at 10 lbs, 9 oz on Wednesday. We are hoping that this means he will be over 11 pounds for his surgery. His tube feeds were increased again to help keep his momentum going.

Our visit to the Pulmonologist on Wednesday went great. They were really pleased with how clear his lungs were sounding and thought that his lungs would not give us any trouble during his surgery. He will probably be left on the ventilator after the surgery (most kids come right off) for about 24 hours just to be safe. Given his history, they don't want to take any chances. At this point Travis and I are still trying to mentally prepare ourselves to see him on the vent again.

Wednesday was exciting in other ways as well. Mason ended up getting an x-ray in the morning to check the placement of his feeding tube. He was getting a clog before we left for the hospital and I flushed his line out with warm Coke. Minutes later he threw up Coke which seemed strange since he is feed into his intestines. The tube placement ended up fine and the nurse said that maybe he just prefers Pepsi. When we got home, I was giving some meds and his tube clogged up for good. We had to pack right back up and head back to the hospital for a new tube (his 7th one). Long story short, the receptionist at radiology gave us a hard time mainly because she was confused since we had been there already and didn't believe that we needed more x-rays. She had me so frustrated that I ended up having to give her a piece of my mind. I refused to leave until Mason got the films we needed and I was confident his new tube was placed correctly.

I have taken some video on our digital camera that I would like to post, but have not figured out how yet. I will work on it this weekend.

Updated Pictures

2007-10-23T00:58:00.000-04:00

New pictures of Mason are in his Photo Gallery!

Busy Week

2007-10-20T00:02:00.001-04:00

We are having some technical difficulties getting the pictures from last weekend onto the photo gallery. Hoping to get them up early next week.

Well, this week started with a bang! Monday at about 4pm, Mason's feeding tube became clogged. This usually happens on a daily basis and we are able to free up the clog with some warm water and a little pressure from a syringe. Unfortunately this clog would not budge! We tried water and coke to no avail. We had to make a trip to the ER, which happened to be on one of the most busy evenings, to try and get the tube unclogged. The ER docs tried orange juice, cranberry juice, sodium bicarbonate, and some other special remedies. Nothing worked! It was then we got the disappointing news that they would need to start an IV (so that Mason would not dehydrate) and admit him overnight so that he could have a new tube placed on Tuesday. I stayed with Mason while Travis went home to sleep and work the next day. Mason was finally admitted to a room at 3am. The next day he received a new tube at 2pm. The tube went in fairly easily compared to some of the other placements he has experienced. I was impressed and the docs discharged us right away so that we could take him home and start his feeds and give him his meds.

We did discover something positive with this experience. Since Mason had not been fed for a few hours, we tried to feed him a bottle in the ER. He sucked down an ounce and wanted more. He is only allowed an ounce every 3 hours to prevent lung damage if he aspirates so we had to take the bottle away and replace it with his pacifier. This shows us that Mason is capable of feeding orally but is just not hungry or interested when he is continuously fed. We have some high hopes when he gets his g-tube and moves to bolus feeds. Once he can feel hunger, I think he will surprise us all!

The next morning, Mason started to gag on his new tube and vomited. When he did this the tube came out of his nose pretty far (enough for me to be concerned). We then made a trip to his pediatricians office for an x-ray to confirm tube placement. We were lucky and the tube stayed in his intestines (I have no idea how).

The rest of the week was pretty uneventful. Mason started Previcid to help with his reflux. He was previously on Prilosec that he had to take orally. I think he only kept it down a couple of times. The Previcid can go into his NJ tube and so far seems to really be helping!

Exciting Weekend

2007-10-14T23:43:00.001-04:00

I can't believe it has already been a week since I last posted! My how time flies!

Mason had a good week. His week started with a physical therapy evaluation on Monday. His eval went great and the doctor was really impressed with how well he moves considering his history. There are only two concerns that she will keep an eye on. The first is that he favors his left hand when grabbing toys. Babies his age should show no preference from side to side. This could easily be because his right hand almost always has a glove or sock on it to prevent him from pulling out his feeding tube. It could also be the result of his brain bleed or other ECMO complication. Only time will tell. The other concern is that she will need to keep an eye on his leg flexibility. His knees seems sort of stiff to her. This is also common in most babies, so after he is a year old she will re-evaluate his leg flexibility. The good news is that she feels he does not need any outpatient physical therapy! This will save us a few trips to the hospital :) Mason will have Early On come to the house (through Plymouth-Canton schools) to work with him on a regular basis.

The week ended with a big trip up north to see his Grandma and Grandpa Ellinger. It was his Grandpa's retirement party and we wanted to be there for the big event (although Mason could not attend the party since it is RSV/cold/flu season). We went left Saturday morning and returned this evening. The drive up was a little rocky. Mason napped a little and things seemed to be going smoothly, then Mason had a pretty major diaper malfunction! It was the kind that needed a complete change of clothes (in the car at a rest stop). It wouldn't have been too bad if it wasn't for Buster barking at all the other dogs taking a "break". Lets just say our car was complete and utter chaos for about 10 minutes and we even managed to lose one of his socks. We still can't find it! After that Mason was so worn out that he slept almost the rest of the way. Saturday night was the party, so Travis and I went while my parents (Grandma and Grandpa Sennett) babysat at the Ellinger house. It was our first time away from Mason. We were nervous parents but we knew he was in great hands! I left after the dinner, toasts and speeches to watch Mason so that my parents could catch the second half of the party. Mason was such a good boy over the weekend and had lots of fun with his Grandmas and Grandpas. He was tuckered out and slept the whole way home (about 3 and a half hours).

Everyone from Alcona County has been so supportive! We had many people congratulate us and ask about Mason's progress. We appreciate the warm wishes and all of the prayers!

Look for some updated pictures on his Photo Gallery later this week!

Good News, Bad News

2007-10-07T23:18:00.000-04:00

I will start with the good news. Mason has had a pretty good week. His battle with gas pain seems to be letting up a little. Our pediatrician said he would most likely outgrow some of it. Mason also gained 9oz over the last couple of weeks. He now weighs in at 9lbs 12oz! 8 more ounces and he will have doubled his birth weight. He is continuing to play, grab and talk to his toys. He even tried to make a laughing sound with his Dad tonight. It was the cutest thing!

On to the bad news. We had an appointment on Friday to discuss Mason's upper GI with his surgeon. His upper GI was not good and he is not even close to being ready to get fed into his stomach with an NG tube. His reflux is very bad and the docs are concerned that he will aspirate into his lungs which could be fatal in his case. Now that he is getting older he will be starting to pull out his NJ tube more often. It is just not feasible to have it in for much longer as he needs to have it placed by x-ray every time he pulls it out. It is not just one x-ray, but rather a "motion picture" made by taking numerous x-rays. I am sure he gets a pretty good dose of radiation every time it is placed and he has had 5 placements so far. The surgeon feels the best course of action would be placing a g-tube (directly through the belly into the stomach) and a Nissen wrap (to try and prevent reflux). This is necessary to protect Mason's airway.

Mason will be admitted to UofM for surgery on 11/14/07. He will stay for about 5 days, maybe longer. It will be a major surgery for him, with some risks. He will need to go back on the vent for the surgery and right now we are unsure how long it will take him to come back off. He will be given lots of fluid for the surgery and this will put a burden on his lungs, making it difficult for him to breathe on his own. He will also be fed into his stomach for the first time and will need to be watched closely for reflux, etc. Hopefully, with a successful surgery, Mason can begin to use his stomach and learn to eat more by mouth.

On to the next bit of bad news. Travis and I have made the tough decision to sell the house we just had built last fall. My new role as a stay at home Mom coupled with some unexpected career changes for Travis, has unfortunately put us in a financial bind. Our family is what is most important to us and we do not want to take on any additional jobs at this point just to support a mortgage and sacrifice important time together. We are planning to downsize so that we can live comfortably on our new family income, and still spend lots of family time together.

Update

2007-09-30T23:10:00.000-04:00

This week was going great until Thursday. We put Mason down for a nap and he was "out", or at least we thought so. A few minutes later, I went to check on him and he was laying there with his feeding tube (yes, the one that is supposed to be in his intestines) in his hand looking up at me. In a matter of minutes, he managed to wake himself up and pull out his tube! Travis and I freaked out because it was already 3pm and we would need to make a trip to the hospital to have another one placed (it has to be done by x-ray). So, after a few frantic phone calls (thanks Jeannie!!!) Mason and I were on our way to UofM for a 4pm appointment. We managed to get another tube in (a smaller one, which is much nicer than his old garden hose). Every single time (this was our 5th) the radiologist has difficulty getting the tube in because Mason's anatomy is so difficult. Each time they say that they will only try one more time (usually after a few unsuccessful attempts). We have been very fortunate that the last attempt has been successful in each case.

I must say that Mason was extremely proud of himself and had a smile on his face that afternoon. He was even smiling when we arrived at the hospital and while we were waiting to get called into radiology. I can't even imagine how good that felt for him, even if it was only for a couple of hours. Travis and I snapped a couple of quick pictures before I left since this is the first time we have ever seen Mason without any tubes on his face!

Mason has also reached another developmental milestone this week. Instead of just batting at his toys, he is now opening his hand and grabbing them. Sometimes he will even pull them toward him. I am sure that these new "grabby hands" are the ones that pulled the tube out!

4 Months Old!

2007-09-25T22:55:00.000-04:00

Our little guy is 4 months old today! I can't believe how fast time has flown by...he has been home for 5 weeks already!

Mason is still doing well with his oxygen during the day. His sat's continue to stay above 96 and his breathing pattern does not seem to be affected or more labored. Mason started his Prilosec today which has to be given orally and will help with his reflux. This proved to be quite the adventure this morning. After about 10 minutes of squirting a little in his mouth and letting him suck his pacifier to help him swallow, he promptly threw it up all over himself and his mom.

The upper GI that Mason had on Friday turned up some interesting results. He has reflux which we expected to see. In addition to his reflux, not everything he swallows even makes it into his stomach. About half of it puddles in his esaphagus. This is something new we did not expect to see. We have an appointment with his surgeon on October 5th to discuss the test and next steps.

Mason has also developed a funny new habit. He wants to lick everything in sight. This includes toys, shirts, burp cloths, arms, etc. It is quite entertaining especially when we give him a breathing treatment. We have a hard time keeping the mask on his face because he moves his head around to try and lick it.

I took some pictures of Mason without the oxygen cannula. There are more in his photo gallery.

Losing accessories....

2007-09-20T21:38:00.001-04:00

Great news...Mason's pulmonary appointment went well yesterday. He weighed in at 9lbs 3oz. This was an increase of 6 oz in 5 days! He also had a 1 hour trial off of oxygen and did great. His average oxygen sat was 98%. Since he did so well, he is now allowed to spend his awake time off of oxygen (as long as we check him periodically). He will sleep, nap and feed with his oxygen on until the next visit. The docs also said his chest x-ray was an improvement over the one he had 4 weeks ago. His lungs are growing and making steady progress! He is still breathing faster than normal and was taking about 60 breaths per minute at our visit. A normal baby consistently breathes under 60 breaths per minute. We are still over the normal range, but a huge improvement over status when we left the NICU (he used to breathe around 80 per minutes). Keeping the oxygen on for a month really made a difference!

The pulmonary docs also made some medication modifications. He is going to go up slightly on his diuretics to make sure his lungs don't get "wet". This will hopefully be the last time we go up and he will eventually grow out of this dose. He is also going to get Prilosec to try and treat his reflux and hopefully make him more comfortable. Prilosec and Zantac will work together for 1 month and then we will stop the Zantac. We are now up to 10 medications. Hopefully this number will start to go the other way soon :)

We were able to remove his nasal cannula and for the very first time, we could see half of his entire face with no tubes. I must say that he is a very handsome boy :) His only tube now is his NJ feeding tube.

Tomorrow we will have an upper GI to evaluate his reflux and to see if we can move forward to an NG tube and eventually bolus feeds.

More Gain!

2007-09-17T23:36:00.000-04:00

Funny how much free time there is late at night when you have to stay up to give a med at 12am! We are hoping that he gets weaned from this med soon so one of us won't have to stay up so late every night.

Mason is still steadily gaining weight. He was at 8lbs 13oz on Friday's visit to the Pediatrician. His tube feeds were increased from 23cc's/hr to 27cc's/hr. This was a pretty big jump for him but he handled it well. We are expecting to see a big gain at Wednesday's appointment (hopefully over 9lbs).

Mason is still having some reflux issues and seems to be in some pain when he is refluxing. Sometimes it is hard to tell if he is really upset because of gas or reflux. We are going to talk to our Pulmonologist on Wednesday to see if they can give him a medication to decrease stomach acid production. Since Mason is not fed into his stomach, he is just refluxing stomach acid and saliva. He is currently taking a med to neutralize the acid, but it seems to still leave him uncomfortable.

His lungs have been clear for the last few weeks and he has stopped coughing like he did when he was in the NICU. The only time he coughs now is when he is about to reflux. He has been on neubulizer breathing treatments 2 times per day to help him open up his lungs and breathe easier. Now that his lungs are more "dry" thanks to his diuretics and he is not coughing, we are wondering if we will be able to decrease the frequency of these treatments.

Mason is now rolling from his tummy to his back more often. He seems to have it figured out. He is also trying to laugh. He doesn't have this one down yet, but you can tell he is trying. He is also batting at some of his toys and he even batted at the dog today :)

Here is a picture of him on Sunday afternoon cheering on the lions!

Interesting Fact

2007-09-13T21:19:00.000-04:00

When you read this you will probably think that only two crazy engineers would calculate how much Mason has been "drinking" so far through his feeding tube since he has been home (about 3 and 1/2 weeks). Tonight we calculated (with the help of our feeding pump) that Mason has had 11, 241 mL, equivalent to 11.24 L. This roughly works out to be 5.6 two liter bottles! Can you imagine? Mason is around the size of a 2L bottle (see the photo below). For those 20 oz bottle fans, Mason has polished off the equivalent of 18.4 them! I would have to say that he is a well hydrated boy!

Another bit of news. Mason rolled over for the first time tonight, from his tummy to his back. I think it surprised him as much as it surprised us. He sort of threw his head back and it took his whole body with him. Even though it looked like an accident, we are still so proud of him!

Updated pictures are in the photo gallery...

ER Visit

2007-09-10T20:54:00.001-04:00

Unfortunately Mason spent a good part of the weekend not feeling like himself. He had been especially fussy, feverish and gassy on Saturday. On Sunday he had a fever of 100.4. We called the UofM docs and they agreed that we should bring him into the ER. He was constipated and vomiting as well and they were concerned that maybe something surgical was going on. When we arrived at the ER, Mason's temp was totally normal and he pooped 3 times! 5 hours later, after good urine and blood tests we were discharged and ready to head home. I guess he just wanted to visit his friends again.

On his trip to the ER, Mason made 2 more girlfriends :) He is such a ladies man!

Mason is also making some great physical and developmental strides. He is able to hold his head up without any help, even when he is on his tummy. He looks like he just wants to get up and crawl. He is also smiling all the time now. Before it was just an occasional smile, but now he is developing his sense of humor and smiling and cooing at our silly games. Mason and Buster must have already developed a special relationship because when Buster walks close by, Mason beams ear to ear. He also sometimes smiles when Buster barks, oddly enough...

This week Mason has OT/Speech and an appointment with his Pediatrician. We will try and post some more pictures and update everyone later this week.

Doc Appt. Update

2007-09-07T20:52:00.000-04:00

Such a busy week this week. Today Mason had an appointment with his Ped. Surgeon and it went really well. She was pleased to see how much progress he has made. Mason not only met his goal of 8lbs, but exceeded it as well. He weighed in at a whopping 8lbs 7oz. That was a 11.5oz gain in 8 days! I didn't think that was possible, but I guess Mason made it happen. We discussed his upcoming oxygen wean and also the possibility of an NG tube. The docs are still really concerned that his reflux might compromise his respiratory status and stall some of the progress he has made so far. We will be going for an upper GI in two weeks to "see whats happening in there" and determine next steps. If there is any reflux then we will keep our current NJ tube set-up.

Mason also had a chest x-ray today. We will get the results at our next visit, in about 2 weeks. If they see anything major they will give us a call. In our non-expert medical opinion it looked pretty good. To us it looks like Mason's right lung has caught up in size with his left lung, but we could be wrong. His heart also looks like it is more in the center of his chest rather than compressed to the left side.

We also got to visit Mason's PICU, NICU, Fetal Treatment and ECMO friends :)

Update

2007-09-05T16:44:00.001-04:00

Mason's Pediatrician called this week and she and the Pulmonary docs agree that Mason needs more calories to grow a bit faster. He has a lot of catching up to do :) They increased his tube feeds to 23 cc's / hr. He is continuing to take a bottle every few hours, but has some good and bad days. Some days he consistently sucks down 15 - 20 cc's, other days he wants nothing to do with the bottle. With continuous feeds, his gut probably feels full and he is not experiencing hunger like a normal baby. What he feels is really anyone's guess. We do know that everything seems to be making its way out :)

Mason had his eyes checked today to make sure his prematurity and oxygen support did not cause any issues. I am happy to report that his doc said he had gorgeous eyes! Everything looks good. We will have a follow up in January. Unfortunately he had to have his eyes dilated for the appointment and is very cranky and sensitive to light today.

We have an appointment with his Pediatric Surgeon on Friday. He will be weighed and have a chest x-ray taken to monitor his lung growth and make sure there are no issues with his previous surgeries. We are hoping that Mason will weigh in over 8lbs and we are also hoping to find out what the plan is for his feeds. We are hoping to have an NG tube now, but we know that he has reflux issues and that this may cause problems with his lungs. His NJ tube seems to be clogging/kinking more and more often (usually right in the middle of the night with alarms waking all of us up). It sure would be nice not to be tied to continuous feeds.

Weight Gain!

2007-08-31T17:24:00.000-04:00

Mason is continuing to gain some weight! He is now up to 7 lbs 11oz. He seems to be steadily gaining about 5 t0 6 oz per week. Next week, he is expected to be up to 8lbs.

We saw Mason's Pulmonologist this week and we really liked the clinic and the doc's. We saw 3 doctors and a nurse during this appointment and they spent more than an hour with us catching up on his progress and making recommendations. First, they increased his Zantac for reflux since he has gained some weight and now requires a higher dose. This med makes sure the acid in his stomach is neutralized so that it does less damage coming up. Second, they discussed some possible testing that they might want such as a profusion study to see how his pulmonary arteries are doing. This test will help determine his long term prognosis. Third, we discussed his oxygen at home. Once we get Mason's feeding issues straightened out they will wean off his oxygen so that he is only using it at night and during bottle feeding. They would also like to see Mason switched to special formula that will account for his prematurity. We discussed this with his Pediatrician yesterday and she agrees. We are going to use up what we currently have and then make the switch (probably next week).

Mason has make some great strides as far as feeding goes. He seems to have gotten the hang bottle feeding and now does so with only a few complaints instead of constant screaming. His allowable bottle amounts have increased from 10cc's to 30cc's. Right now he is taking between 10 to 20cc's each time he feeds. Most of the times he keeps everything down, but a couple of times he has refluxed back up. We are hoping to get closer to 30cc's (and keeping it down) by the end of next week when he will be seeing his surgeon and speech therapist. We are also hoping to hear some sort of plan for his feeding tube which is currently in his intestines.

Home For a Week

2007-08-27T17:49:00.000-04:00

Has it already been 1 week? Time has flown by.

Mason is continuing to do well. At our pediatrician appointment last week he had gained some weight and weighed in at 7lbs 5oz. We will have another weigh-in this coming Thursday. We also have an appointment with the visiting nurse on Tuesday and our appointment with his Pulmonologist on Wednesday.

We are starting to get into a schedule that works for everyone. With Mason's rigorous feeding and medication schedule, it was tough at the beginning but now it is getting easier. His schedule looks a little bit like this.

12am - reflux med and feeding
4am - feeding
6am - reflux med
8am - vitamins, feeding
9am - digestive med and diuretics
10am - breathing treatment
12pm - reflux med and feeding
3pm - feeding
6pm - reflux med and feeding
8pm - breathing treatment
9pm - vitamins, feeding

Travis and I have worked it out so that I stay up to give the 12am med and feeding while he sleeps. Then he takes care of the 4am feeding and 6am reflux med so that I can sleep.

Mason is also working on bottle feeding. Although he is not allowed to take much by mouth, we are still using the opportunity to work with him on his suck, swallow and breathe coordination. He has made some significant improvement over that last couple of days. He has a rhythm down but still struggles with gagging and choking.

I have posted some updated pictures in the photo gallery.

Home Update

2007-08-21T23:30:00.000-04:00

Mason's first 24 hours home has gone pretty well. He even had his first bath here at home tonight. He smiled a few times and we think he really enjoyed it. After the bath we had to re-tape his tubes on his face since the old tape was starting to fall off. Needless to say he did not enjoy that part.

We had a visiting nurse come to the house today to check up on him. His vitals were good and he has not lost any weight. In fact, it looks like he is still gaining. Tomorrow we have our first visit with his pediatrician. Thursday the visiting nurse comes back in the morning and in the afternoon he has occupational therapy at UofM. Next week we have a visit to the Pulmonologist to check up and decide what to do with his oxygen. The following week we have a visit with his Pediatric Surgeon for a check up and chest x-ray.

So far the hardest part has been trying to find time for everything. Just the meds (he has 9 them) and his feeding (continuous 20 cc's per hour) take up a lot of our time. We are trying to make enough time for normal baby things and I have to say it has been tough. Our goal has been to get him to bed around 8 or 9pm to stay with his schedule in the NICU and we have missed our mark by about 2 hours each night. I am sure once we get organized and get our routine down it will get easier.

I will try and post some pictures soon....

Home Sweet Home

2007-08-20T23:39:00.000-04:00

Mason has made it home! We arrived home at 6:00pm Monday evening. So far Mason is doing great. More details to come later.....

Updates

2007-08-14T18:10:00.000-04:00

We have a few things to update...

Mason is no longer on his heavy duty antibiotics. His white cell count is returning to normal and he is almost back to himself. The docs figured that the infection came from his broviac IV line in his left leg. Once they removed the line, things improved.

Mason has once again surprised us all and decided that he doesn't need any oxygen support or flow support. He spent so much time with his cannula's out of his nose and one night they even ended up in his mouth! He sat's were still fine so we decided to trial him without oxygen. He has been without it for almost 24 hours and is still doing great. In order to come home without oxygen he must go for 2 or 3 days without any major desat's when he gets upset.

Mason also passed his swallow study. This means he is allowed to feed by bottle up to 10cc's every 3 hours. He seems interested in the bottle, but just not able to coordinate everything yet. It is great to see him try and he seems to get better every day. Once he becomes proficient in bottle feeding, the docs may consider pulling back the NJ tube into his stomach and feeding him that way.

He has also passed his initial hearing test. This means he can't ignore his parents :) I am sure this also means he and Buster will have contests to see who is louder. At first I would have said Buster, but after what we heard today I would say that Mason could give him a run for his money!

The countdown to discharge is on. The docs are informing us that if all goes well it will be somewhere between Friday and Monday.

Feeling Better

2007-08-11T23:19:00.000-04:00

Today it seems that Mason is feeling a little better. He is still very fussy but can be consoled much easier than the last couple of days. His white cell count is lower today which is a sign that he and his antibiotics are fighting the infection.

Mason has reached his goal of 20 cc's per hour tonight! This means no more TPN or IV fluids! Mason has been doing a great job of shedding his tubes and pumps. We are not sure what is going to happen with his feeds in the future. We found out tonight that they cannot do bolus feeds into an NJ tube because the intestines cannot handle it. Bolus feeds must be done with an NG (stomach) tube and we are not sure the docs are ready to start him on that. There is a good chance that Mason will come home with an NJ tube on continuous feeds. This means we will have a feeding pump that will run continuously, all day, every day. This should make life interesting, especially when we have to leave the house for doctor appointments ....

Mason now has pulmonary docs following him and advising the pediatric surgeons. He is on a couple of breathing treatments that help to open up his lungs and make it easier to breathe. They have increased his diuretics to help rid his lungs of extra fluid. They are also trying to evaluate how well his diaphragm is working on the right side. He doesn't really have a diaphragm on the right side, just some tissue and a small gortex patch, so it is not expected to be working right now. Mason is compensating for this by using some of his belly muscles to breathe.

He has also learned that the pacifier is not all that bad. He can even hold it in his mouth himself. I have added some pictures to the photo gallery....

Two steps forward, One Step Backward

2007-08-10T17:12:00.000-04:00

Mason was doing great in all areas this week. He continued to breathe well on his own and was even starting to take some feeds by bottle. Unfortunately he now has an infection somewhere in his body. The doctors are not sure where yet. He is on a "big gun" antibiotic, but is currently not responding to it. They are hoping another day on this antibiotic will help rid him of this infection. Infection possibilities can include a blood infection (from IV lines), urinary tract infection or an infection in his lungs. The docs initially thought the infection source was one of his broviac IV lines. They removed this one yesterday but his white cell count continued to climb today. We are praying that it is not an infection in his lungs. Something like this could be devastating to Mason and all of his progress.

On a good note, Mason's feeds have been going well. He is at 15cc's per hour and is continuing towards his goal of 20cc's. Tonight, his TPN (IV nutrition) will be turned off since he is getting all of his nutrition and fat from his feeds. He is also taking some feeds by bottle (when he was feeling better) and is doing quite well. He will have a swallow test in the next few days to make sure he is swallowing properly and not "dumping" anything into his lungs.

We are just hoping that the docs can get his infection cleared up quickly. If so, the latest word is that he will only be in the hospital for a couple more weeks.

2007-08-06T18:35:00.000-04:00

Mason is continuing to do well off the vent. His oxygen support through his nasal cannula is 21% (equal to room air) and his pressure support remains at 2 L flow. This flow helps him to breathe without too much effort. We are unsure if he will come home with his nasal cannula. It all depends on how much weight he is able to gain with his feeds. Without the extra flow he may have trouble gaining weight since he will be using lots of calories to breathe.

Feeds are a totally different story. The first NJ tube Mason had worked great and then he pulled it out. The second tube was placed and ended up clogged with contrast used during the x-ray procedure. A third tube was placed and this one ended up kinked. Today Mason went down for another tube, yes his fourth one. This time they put a large one in...I'm talking garden hose large. I think they use this size for 6 month old. I guess they didn't want this one to kink or clog. At this point we will take whatever will allow him to come home. His feeds have started again today at 5cc's per hour and will continue to go up every 12 hours as tolerated. His new goal is 20cc's.

Mason loves to be held. We are able to hold him all the time now. Both sets of Grandparents have been able to hold him and I think he fell asleep for all 4 of them. He is very awake now since he is almost completely weaned off of his methadone and sedation meds. He enjoys looking around and checking everything out. His latest nickname is "Professor Ellinger".

Photo Gallery Added

2007-08-02T18:00:00.000-04:00

We added a photo gallery on the list of links to the right. Right now it has some pictures of Mason off the vent. We will continue to work on adding more pictures.

Off the Vent!!!

2007-08-01T22:54:00.000-04:00

Sorry for keeping everyone in suspense, the last couple of days have been a whirlwind of activity. Mason stayed on the vent Monday so that he could be started on steroids for extubation on Tuesday. The steroids help keep his throat from swelling which can be common when the vent tube is pulled out. Monday afternoon Mason went on his road trip downstairs to get his NJ feeding tube placed. The tube was placed successfully however when he returned upstairs it did not work. Somehow the tube was clogged or kinked. That tube was removed and a NG tube was placed into the stomach. He started feeds into the stomach and is currently receiving 4cc's per hour. Sounds like Mason will be going back downstairs tomorrow for another NJ tube placement.

Tuesday morning Mason was extubated. What a great moment! The extubation procedure went smooth and after his airway was suctioned he was easily breathing on his own. He now has nasal cannula's for oxygen support and a small amount of pressure support. He did great the rest of the day and has had excellent blood gases since. Travis and I can hold him whenever we want now.

I will try to add some pictures of all of the excitement sometime tomorrow.

Taking Matters Into His Own Hands...

2007-07-29T21:16:00.000-04:00

Today Mason decided that he didn't need his NJ feeding tube anymore. He took matters into his own hands and yanked it out this morning. Unfortunately the doctors, nurses and his parents didn't agree. Mason has earned himself another road trip to the 3rd floor radiology lab to have another one placed tomorrow. Until he receives a new tube he cannot be fed. His IV fluids and nutrition were increased to make up for the difference.

Mason continues to do well with his vent sprints. He is up to 4 hours 2 times per day. We are still hoping that he gets extubated tomorrow, but are now wondering if the NJ tube will take priority and push that back a day or two. I guess we will find out tomorrow.

He also seems to be handling the methadone and sedation weans pretty well.

No More Drips

2007-07-28T20:47:00.001-04:00

I have lots to update tonight. Mason no longer has IV drips for Morphine and Sedation! He is now on injections (into his iv) of Methadone and his Sedation meds every 6 hours. He was switched from Morphine to Methadone to help this transition period. It still does the same for pain, but is much easier to wean when it comes to withdrawals. Mason is currently showing mild signs of withdrawals which is expected since he has been on morphine and sedation meds since birth. The docs hope to have him weaned from both completely in mid-August.

Mason has continued to sprint on his vent. He is now sprinting for 4 hours at a time with good results. He will have another sprint tonight and 2 tomorrow. The docs (and us too!) are hoping to get him off of the vent sometime on Monday. He seems to be letting us know he is ready by grabbing and hitting his breathing tube. He has also started to move his head back and forth to try and free himself from the tube.

Feeding is going well now. Mason is up to 11 cc's per hour which is more than halfway to his goal of 18. He is now having his feeds increased by 1cc 3 times per day. At this new rate (if all goes well) he will be at his goal by Tuesday morning. When this happens they can take away his TPN which is his IV nutrition. They have been reducing it while they are increasing the milk and his color is starting to look more normal. The TPN is yellow in color and had given him the "Holden NICU tan". He is also starting to gain weight and is up to 7lbs.

Here are the latest pics....

Steady Progress

2007-07-25T23:19:00.000-04:00

Today Mason "sprinted" on his vent. This is a term the docs use for a trial where Mason does all of the work himself. He initiates each breath and only recieves minimal pressure support from the vent (to overcome the tubing, etc.). He sprinted for 1 hour in the morning and 1 hour this evening. He did great both times. The docs took a blood gas after each sprint and they both looked good. The docs will continue to sprint Mason on his vent multiple times over the next couple of days to help him build stamina to breathe on his own. When they feel he is ready, he will be extubated (tube and vent removed). When this happens Mason will receive nasal cannulas to give him a little extra boost of oxygen and pressure.

Mason's feeds are not going quite as well as his vent progress. He vomited a couple of times in the last 24 hours so the docs slowed down his feeds and will only increase them by 1cc per hour until he reaches his goal of 18cc's per hour. Tonight Mason is at 6cc's per hour. He will sometimes gag on his vent tube and we think this might be causing him to vomit. Hopefully once he is off the vent the feeding situation will improve. The NJ feeding tube he received has really helped him. Mason is also starting to poop multiple times a day :) Travis and I learned firsthand what tar poop was!

Here are a couple pictures of Mason during his sprint this morning.....

Progress

2007-07-23T16:40:00.000-04:00

We are so proud of Mason's progress so far! The docs are continuing to wean his vent pressures. Today he is at 22. Last night they put him back on the vent program that allows him to do most of the work. He seems to be tolerating all of this very well. The docs are thinking that Mason might be off the vent early next week. We have our fingers crossed!

Mason is off of his antibiotic treatment from the closure of his chest. His diuretics have also been weaned to twice daily doses. The docs are also weaning his morphine and sedation and within 1 week he should be off his IV drips for both. When this happens, he will get bolus injections until those are weaned.

Feeding has also been going well so far. He is being given continuous 3 cc's per hour and will go up to 4 cc's at 11pm tonight. His goal is to get up to 18 cc's per hour before they start bolus feeds (large amounts in shorter time periods).

Mason is also continuing his physical therapy and was even sleeping on his belly when I came in this morning. The physical therapist put him there thinking he would only like it for a few minutes but he fell asleep and stayed on his belly for almost 3 hours!

Busy Day

2007-07-20T22:16:00.000-04:00

Another busy day at UofM today. To start, the docs weaned Mason's vent pressure and rate today and he tolerated both very well. The docs also began the weaning process again for his morphine and sedation and he seems to be doing well with that too.

Mason also took a road trip down to the 3rd floor for his urology tests and feeding tube placement. The urology tests came back fine. This is of course great news and means no further major surgeries for Mason. It was a hard test to watch as it took place in one of the large radiology labs. Picture a huge x-ray machine and a small 6 pound baby right in the middle. I wasn't prepared to see him in such large equipment and it broke my heart to see just how small and fragile he looked. As for Mason, the tests didn't seem to phase him at all. He was a little upset at first and then he slept through the rest. In the process Mason also received his NJ tube. This is a feeding tube that passes through his nose and into his intestines. The docs are hoping that this will help with his reflux. They are already discussing the possibility of starting his feeds tomorrow.

The biggest news of the day is that Noah's parents got to take him home this afternoon! Noah did great tolerating his feeds and the docs let him go home. We are excited for Noah and his family and we are sure they will do great!

Update

2007-07-19T18:43:00.000-04:00

It is hard to believe that Mason will be 8 weeks old tomorrow. Time has flown by. We knew this would be a long road, but it certainly does not seem like 8 weeks have already passed. We want to say thanks again to everyone for all of the positive comments and encouragement!

Mason looks like he is feeling better today. The docs went up on his morphine this morning because he looked fussy when they did their morning rounds. He seemed to be comfortable when I came in this morning. He spent a good half hour awake and looking around. Before I left, I read him a story and he fell asleep :)

Mason has come down some on his vent pressure. It was weaned down to 26 (from 29 on Monday). His blood gases continue to look good so we are expecting to see another wean tomorrow.

Recovering

2007-07-18T17:52:00.001-04:00

Mason is no longer on a drug to keep him paralyzed, as the docs allowed him to wake up and move around today. His fever has also subsided, but they are still watching him closely. Mason's belly still looks pretty tight and his whole body is very puffy from all of the extra fluid and blood he received after the surgery. The docs have not weaned his vent settings yet, but his blood gases have consistently looked good so we are expecting that they will soon (maybe tonight?). The docs have also put his morphine and sedation weaning on hold until they are sure that he is comfortable after his surgery.

Mason's feeding tube and other tests have been rescheduled to Friday to give him another day to rest and recover. He deserves it!

Here are some pictures (taken last week) of Mason finding his nostril :)