Update

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

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

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!

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!

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!!!!

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

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

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

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!!!

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

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5 Months Old!

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

New pictures of Mason are in his Photo Gallery!

Busy Week

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

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

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

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!

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....

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!

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

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

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

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

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!

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

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

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

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

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

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

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.

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

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!!!

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...

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

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

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

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

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

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

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 :)

Taking the Good With the Bad Again...

If there is such a thing as a degree in stress, I think Mason, Travis and I have all earned one! Mason was scheduled to have his belly closed today, but there was a surgery cancellation yesterday so they bumped him ahead. Mason went into surgery at 2:45 pm and did not come out until four nail-biting hours later. Needless to say we did not expect such a long surgery. The docs did not either. Long story short, they closed up Mason and then realized that he was not handling the closure well. Pulling all of that muscle together really put a lot of pressure on his little lungs. They had to "undo" a portion of it and insert a patch into his muscle to give him some relief. The skin was closed over this patch, making the closure complete.

Poor Mason did not breeze through this surgery like the last couple. He took a large step back on the vent. His pressures went from 19 to 28, oxygen from 21% to 40%, and rate from 15 to 52. His blood gases are looking good today so hopefully they can start the slow weaning process tomorrow. At this point, we don't think that Mason will be coming off the vent anytime soon. The process may take a couple of weeks. Mason also has a fever today and the docs are watching him closely. He is on drugs to keep him paralyzed for the next day or two to make sure he doesn't cause himself pain or irritate the incision site.

Thursday he is scheduled to get a feeding tube placed from his nose into his intestines to help his feeds. The docs are thinking he has some pretty severe reflux from his anatomy issues and that this will help him keep his feeds down. He is also going to have a study done on his kidneys, bladder and urinary tract because of some of his past issues.

On The Move

So far, Mason has had a good weekend. He continues to come down on his vent settings, morphine and sedation. He is having more awake time and is moving around more than ever. This is due in part to his physical therapy sessions with his buddy Dan every week. He even pulled out his NG tube yesterday. His nurse was convinced that he did it because he was mad at her. Mason also discovered his right nostril and stuck his finger in there. I have some cute pictures that I will post soon :)

The docs are tentatively planning his last belly closure procedure to be on Tuesday. They are saying that they should be able to fully close him up. As long as things go as planned, he should be coming off the vent shortly after his surgery (maybe within a week).

Mason has also started to poop more. He had a large poop this afternoon and we all celebrated. I think the other parents in the room thought we were crazy. The docs had stopped feedings until they could confirm that this part of his digestive tract is working properly. He has shown us that it is...at least for now. Next on the agenda will be to get his stomach to accept and digest feeds. Mason is taking baby steps in the right direction.

Please keep Mason's buddy Noah in you thoughts and prayers as he has been having some bad days. He was scheduled to go home yesterday but this was put on hold because he was not tolerating his feeds. His parents just found out that he has an infection in his blood and he will need more time to rest and recover. We hope that he gets better soon!

Update

Our little fighter never ceases to amaze us! This morning when I came to the hospital, his vent settings had not only returned to the same settings he was on before surgery, they had actually managed to wean his rate as well. His rate was weaned again this afternoon and his blood gases continue to look good. He is only on minimal support from the vent at this time. His morphine and sedation weaning also continued today.

I had a chance to speak with the surgeon who did his first surgery (his CDH repair). It was great to see her again. She said she was very proud and excited that Mason has come this far. She also reminded me how much he has surprised his team of doctors. Travis and I are so proud of Mason! His NICU nurses love him and he is becoming known as a very content boy who naps and looks around quietly when he is awake. However, he still lets them know when they are doing something he doesn't like.

When Travis and I arrived at the hospital this evening, Mason was laying on his side with his finger in his ear. It was cute. We all joked that this was Mason's way of getting his peace and quiet in the NICU. See the pictures above (they look a little yellow because of the dim naptime light).

Surgery Update

Mason had his 3rd procedure to close his belly today. The procedure went well and Mason did great. When he returned from the operating room, his vent settings had gone up slightly. They will most likely stay that way for a while and then they will wean him back down once he wakes up from the anesthesia and starts breathing on his own.. His pressure went up to 23, rate up to 45 and oxygen to 30%. The surgeon also mentioned that he thinks it will only take 1 more procedure to fully close his belly (probably next week). After this, they can start working to get him off the vent.

Updates

A few quick updates:

- Mason will go to surgery for his next belly closure tomorrow at 3:30pm.

- Mason has been put on a different vent setting which allows him to do more breathing on his own. On the previous setting the vent gave him a breath at a set time. This new program can sense when he is breathing and will not force in a breath in unless he slows down or stops breathing. They put him on it last night and he seems to be handling it fairly well. The docs are having to adjust his rate and pressure a bit to adapt to his behavior on the new setting. The good thing about this setting is that it is one step closer to coming off the vent.

- The docs have also stopped Mason's feeds. He continued to vomit when they tried to start them again over the weekend. Looks like they might wait a while before starting again.

Weekend Update

Mason continued to recover from his procedure over the weekend. His vent pressure dropped to 21 which is the level he needs to be at when he is extubated (taken off the vent). Now the docs will work to wean his rate. Since he is breathing quite a bit on his own, they should be able to wean him slowly. His oxygen support was bumped up to 25% because he was having some difficulties maintaining saturation levels in the 90's. When we left the hospital tonight he was saturating in the high 90's which means that number may go back down to 21 in a couple of days.

The docs also decided to start feeds again (through his NG tube that goes from his nose into his stomach). Saturday, he started at a continuous 1cc an hour again to prime his system. He vomited a couple of times and the feedings were temporarily halted. They started back up today and he seemed to be tolerating it a little better. He did vomit a couple of times early in the day when he was moved or when his mouth was suctioned out. The feedings were continuing when we left for the evening.

We were able to hold Mason again this evening and he tolerated it really well. We both got to hold him without the fuzzy pad underneath. It was so nice to hold just him without all of the extra padding.

Belly Closed Even More

Today Mason went through his second belly-closing procedure. Last time, the surgeons performed the procedure at his bed in the NICU, but this time they took him down to the operating room. Overall the procedure went well. The doctors were able to take off approximately 8mm of material from each side of his patch. It is hard to tell for sure how many more procedures will be required to fully close his belly, but it will be at least two more. His belly is now looking more and more normal, although it is quite obvious that things are packed in there pretty tight right now.


As of this evening, Mason is recovering quite well. His vent settings did not change much at all. When we left the hospital tonight, the only change from this morning was that his oxygen went up from 21% to 23%. With that said, it looks like they might increase it slightly more as he was having a hard time maintaining a reasonable oxygen saturation level this evening. Compared to the effects from the first belly closing procedure, these small vent changes are fantastic. The doctors expect to perform the third belly closing procedure sometime around the middle of next week as long as his vent settings continue at the levels they are at tonight.


There were two other significant events today for Mason. First, he pooped for the second time ever. Also, he was flinching when one of the nurses clapped her hands (she was laughing at a joke and the hand clapping was a result of her laughter). Although these may seem like insignificant items, these are both great signs for Mason as it shows that his digestive system is starting to "wake up" and that he is hearing things (a lot of CDH babies have some degree of hearing loss).

Day 41

Over the last couple of days the docs have continued to wean Mason's vent settings. His pressure is down to 24, rate down to 40 and oxygen down to 21%. Room air has 21% oxygen so this is a big step for Mason. Right now the vent is giving him the equivalent to what we are breathing, just with added pressure behind it. Unfortunately Mason will not be able to come off the vent until his belly is completely closed.

The docs have continued to wean the morphine and sedation, with good results. They have not decided yet when they will try to close his belly again. When they checked yesterday, the patch was still pretty tight. The attending surgeon will decided what the plan is tonight. We are hoping for something to happen tomorrow or this weekend. Of course, when this happens all of his vent settings will go up again (hopefully not as high) and the weaning process will start over. We are quickly learning that patience is key here.

The docs have decided not to try any feeds until his belly is completely closed. Mason will continue to receive his nutrition by IV for now.

Today we learned that Mason's ECMO buddy, Noah, came off the vent yesterday. Great news for Noah and his family!

Updated Pictures

"I'm awake, now what?"

Dad and Son.

Mom holding Mason.

Dad holding Mason.

Mason without the vent tape on his face.

Day 40

Mason is doing well today. The docs have weaned his vent pressure down to 25. They are also staring to wean his breathing rate (how many breaths the vent gives him) to get him to do more on his own. His current rate setting is 45 per minute with Mason contributing from 5 to 10 breaths above this on his own.

The docs have also weaned more of his morphine and sedation over the last two days. He does not seem to mind at all.

Travis and I got to hold him again last night. We were surprised they let us do this two nights in a row.

Mason may have his second belly closure procedure at the end of this week. If his vent settings continue to go down and he achieves a pressure of 23 or 24 again, then they will schedule him in.

Taking the Good With the Bad

Mason has taken some steps back on his vent, mainly due to a conjested right lung. He has some secretions in his lung that they are working to break up and get out. These showed up late last week. This is common for babies who have been on a ventilator for a while. Over the weekend his pressure went up from 26 to 27 and rate from 45 to 55. Today his blood gases look better and he is back down to a pressure of 26. They will take another gas this evening to see what it looks like. The docs want to get to 25 or below for the next belly closure.

On a good note, Mason is no longer vomiting and there is less intestinal bile coming out of his stomach. The docs are also starting to hear bowel sounds which means his intestines are starting to "wake up" and hopefully push things downstream instead of into his stomach. If things keep continuing to improve, they will start to feed him Pedialyte to see how he reacts.

The docs are continuing to go down on his sedation and morphine. He is tolerating all of this well. The nurses are trained to look at his facial expressions and body language as a signal that he needs more morphine or sedation. If they sense he needs more, then he gets a boost. So far, he is sleeping comfortably and when he is awake he looks around and occasionaly smiles.

The most exciting news is that his Mom and Dad got to hold him for the first time last night. We were able to sit in a rocking chair and hold him for a while. It was a wonderful feeling! I will try and post some pictures later.

Recovering

Mason continues to do well today. He seems to be resting comfortably and has not required any extra morphine or sedation (other than what he gets continuously through his iv). He has been sleeping all morning.

His vent pressure was weaned to 26 today. Mason is even starting to initiate breaths on his own. The doctors turned down his vent rate to 45 to see if he keeps breathing "above the vent". This is another good sign that after his bellly closure procedures, he will be ready to do some of the work on his own.

The docs also started to wean another one of his sedation drugs (he currently has 2). He has responded well which means that he his not addicted to this one. On Saturday this drug should be completely off.

The doctors had originally planned to do the 2nd belly closure procedure tomorrow. Since Mason had to take such a step back on the vent, they want to give him time to recover and not rush things. They say that the first couple of procedures are hard on the babies, but that the 3rd and 4th are not as bad. They are predicting his next procedure to be early next week or possibly over the weekend.

Update

The doc's decided to start closing Mason's belly yesterday afternoon. The OR schedule for today was filling up with emergencies and they didn't want Mason to be bumped to tomorrow so they pulled it ahead. The surgery went well and they were able to take out about 1cm on his patch. His vent settings (as predicted) went up to 28 pressure, 55 rate and 40% oxygen. Mason was resting comfortably when we left the hospital last night.

Today they are weaning him back down on his vent settings in preparation for his next belly closure procedure (estimated for Friday). His pressure is down to 27, rate at 50 and oxygen at 28%. So far his blood gases have come back good. They are thinking they may take the rate down to 26 today. The docs want his pressure back at 23 or 24 before his next procedure. They are estimating it may take another 2 or 3 procedures to close up his belly completely.

They will not wean Mason down any further on his morphine or sedation until his belly closures are complete and his is comfortable again. They have been giving him boosts of pain medication because he seems to be sore from the procedure today.

Today, the docs will decide what to do with his feedings. When they started the feeds over the weekend he had a NG tube that went from his nose to his stomach (because he can't swallow with the vent tube). They may need to advance this tube into his intestines and bypass his stomach completely for now. This is common for CDH babies. Today the attending surgeon will decide if this is the way they want to go, or if they want to wait another week or so to begin slow feedings into the stomach again.

Travis and I want to thank everyone for the continued support, prayers and warm wishes. You have provided such a great support network for us. It is wonderful to hear encouragement every day.

More Progress

Things have been very busy at the hospital over the weekend and today. I will try and recap the best I can.

Mason is still maintaining his blood pressure and has not needed any meds since they weaned him last week. The docs are continuing to wean his sedation and morphine. Since they have started this, Mason is having more awake time to open his eyes and look around. Sunday, Travis and I saw him sneeze, cough, yawn and smile. We loved every minute of it! The docs will continue to wean until they can get him off of the IV drips. After that, he will go to injections and will be weaned from those. Finally, he will get morphine or sedation only on an as needed basis.

Mason is continuing to make progress on the ventilator. His pressure is now at 24, rate at 50 and oxygen support at 30%. His blood gases are still coming back good so they may drop his pressure to 23 tomorrow. The doctors are very impressed by his progress. He is keeping up with any normal CDH baby which is great considering his severity and prematurity. He has even earned the nickname "rockstar" from 2 of his docs. Noah's parents have nicknamed him "scrapper" for his feisty attitude towards the nurses :)

Wednesday is the day for Mason's first belly patch closure. It will take them a couple of times (maybe even 3) to fit his intestines back into his abdomen. After each closure, Mason will most likely take a few steps back on the ventilator due to the added pressure on his lungs. We hope that they are able to do it in only 2 surgeries since he is so close to being "trialed off" the ventilator.

Mason was started on a very small amount of breast milk Saturday. This was increased very slightly on Sunday. Unfortunately he vomited Sunday night (and also tonight) so the feedings had to stop. This could mean that Mason's digestive system just isn't ready to handle food yet. It could also mean that he has acid reflux or a digestive tract issue both of which are common in CDH babies. These issues are usually correctable with medications or surgery. The doctors may try to wait a while longer and then try to introduce milk slowly again to see what happens.

Mason continues to do well today. He is still off the blood pressure meds and seems to be maintaining a good blood pressure.

The docs have started to slowly weaned his sedation and pain medication. The sedation is weaned in the AM and the pain medication is weaned in the PM.

His vent pressure settings are down to 27 with a rate of 50. His oxygen has been weaned down to 30%. He seems to be tolerating both changes well.

Mason is also ready for visitors. Travis and I welcome those who wish to visit Mason but respectfully request that he not have visitors that are sick or feeling like they are coming down with a cold, cough, etc. Many of the babies in the NICU are critically ill and something as simple as a cold could be dangerous to them. Also, the NICU will not allow children visitors unless they are immediate family (like a brother or sister). If you wish to visit, please get in touch with Travis or I and we can plan on a time. This is important since visitors are only allowed when Travis and I are present (except for Grandparents). Also, Mason is only allowed 2 visitors at his bedside at anytime.

Busy Day

Mason has had a very busy day so far. When I came in this morning, they notified me that Mason would be moving to the Holden NICU today. I helped the nurses prepare him for his trip downstairs and we moved him around 11:30am. He handled the move like a champ and he will get to stay in his crib, but all of his med lines and pumps need to be changed (because the PICU and NICU do things differently).

Mason's oxygen level on his vent came down to 40% today and he seems to be taking it well. His pressure has not been changed from 28 to 27 yet. I am assuming this is because of his big move. They may just decide to let him rest today.

The NICU is small and cramped when it comes to space, much different than the spacious PICU. They have some pretty strict rules when it comes to the number of visitors (no more than 2 at any time). The advantage is that the NICU has more experience dealing with CDH babies. Right now there are 4 other babies with the same condition in the NICU.

Some New Pictures