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.