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.