Enjoying Tummy Time!

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!

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

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!

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!

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

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

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!