Happy Heart day!

Happy Valentine's Day
Love Mason!

Quick update

Today I spent 13 hours at the hospital. 11.5 of those hours at your bedside. You were awake for most of the 11.5 hours. I have no idea why.

The good news is you were mostly happy and so alert. You rolled over on your side, wiggled, blew lots of bubbles (OK so the high flow helped with that) and kicked and kicked and kicked.

I sang every kid song I could think of till I ran out then I just sang whatever came to mind. You really enjoyed The Time Warp from the Rocky Horror Picture show but that might have been because I helped you do the dance while I was singing to you.

"It's just a step to the left...then a jump to the right."

I have enjoyed the last two days with you so much. Already you have so much personality and charm. You hardly ever cry and the nurses are always saying what an easy and happy baby you are.

Your Granny is coming tomorrow to see you. I know you so excited to see her. You also get to meet your cousins Maureen, Kelly, and Caitlin!

Then Daddy and Pierce will be here. All my boys in one place!

Gonna be another great day.

Just for the record...

As I write this it's 20 hours since the resident wanted to hold your tube feeding. You haven't spit up, or thrown up once.

Not even once.

Roaaaaarrrrrrrr!!

I am Momma...

hear me roar! :)

Long day today.

First meeting was with the surgery Dr's. They don't want your feeding tube on Monday. They want to wait till we have the results from the ear nose and throat (ENT) Dr's scope of your throat.

So here's how it's going to go.

Monday the ENT will make you sleepy and look with a camera at your upper airway in action to see if they can visualize your obstruction. After that they will sedate you completely and look deeper down into the opening of your lungs.

The ENT will be looking for two things. One to see if there are any signs of acid reflux that might be causing the inflammation that is blocking your air way. If the do see any signs of acid reflux than the surgeons will do the Nissen surgery along with your feeding tube surgery.

The other thing the ENT is looking for is to see if there is any changes with the Laryngomalacia (extra floppy skin around the vocal cords) and subglottic stenosis (narrowing of airway) that might warrant doing the Supraglottoplasty and dilation.

So depending on what they find you may have 1 to 4 different surgeries coming up. Holy moley!

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So this afternoon two times you had a tiny bit of spit up. The amount was so small it can only be described as scant. So the nurse we to report it to the resident and came back saying the resident had given the order to stop your feeding for 24 hrs because he was concerned that you might aspirate (inhale into your lungs) the feeding.

I was shocked by the order. Having see the tiny amount of spit up you had, and being very experience with aspiration I felt the order was excessive and unwarranted. I explained to the nurse that I didn't agree with the order and I would like to see the resident before she implemented it.

So an hour and a half later the resident finally came to talk to me about it. He explained to me that he was concerned with you being on the high flow oxygen that you were a risk for aspiration and so he felt your feeding should be held. He felt with your history of acid reflux this increased you chances of aspiration.

I explained to him that you had been on the ventilator through the nasal cannula and had been actually vomiting your tube feeding they had not held your tube feeding then so I didn't understand why he felt it had to be held now. I didn't see any reason for you to go without food for 24 hrs or longer when you were only spitting up scant amounts.

Also that the Dr's have seen no evidence of acid reflux (that's why they don't think you need the Nissen surgery) so that again wasn't a valid reason to hold your feedings.

And since nothing is planned till Monday, and that's just a scope, not an intervention then what he was purposing was to hold your feeding for up to a week and a half.

You have finally started to gain weight (you weigh 6.5 lbs by the way) and without your tube feedings you would start to lose weight again. You would not have the energy to maintain your breathing and would end up back on the breathing machine guaranteed.

Not to mention that going without food would make you absolutely miserable and I wasn't going to let that happen to you without a good reason.

After going back and forth about the order the resident decided to bring in the neonatologist to discuss it with me. The Dr and I discussed the order and my reasons for refusing it and....

the Dr. agreed with me.

So enjoy your dinner baby. Mamma's got your back.

Of course if I see any signs that you are at a risk of aspirating then we will be holding your tube feeding immediately.

I have a feeling you will do just fine.

A few times today you were wide awake for quite a while. We played, sang songs, and snuggled. I love you so much my beautiful baby boy.

Wonderful, amazing, happy

Sorry it has taken me so long to update the blog. It has been another edge of your seat kind of day and I needed some time to unwind. I bet you can guess from the title that Mason is doing great. :)

My sister/friend Tiff came up for another visit and she took me out so I could decompress after the long day. I swear she's better than a therapist.

So this afternoon I had many Dr's all come to me to tell me that you were going to be intubated today. It was inevitable. Your weren't blowing off your carbon dioxide (which is a poison) enough and your levels were getting to dangerously high levels.

I agreed with the Dr's that if you were in failure then intubation was the next step but that you had done well in the CTICU on the vent through the nasal cannula and I thought we should give that a try.

The Dr's didn't feel that would improve the situation but agreed to at least give the high flow a try. So we deiced to put you on high flow at 4 liters nasal cannula and do an ABG (oxygen level by blood test) in an hour.


Before the high flow your CO2 level was 62 and after an hour on the flowby your CO2 level was 48!!


All the Dr's were amazed that you were able to lower you CO2 level by 14 points in only an hour.

I just knew, even though they kept telling me otherwise, that you just needed that "push" of air to help keep your airway open.

An of course I knew how many of wonderful people were out there on team Mason were sending prayers and good thoughts for you and with that kind of support you just had to pull through.


I like being right.


So now if your respiratory status stays stable we will wait till Monday for the Dr. to take another look at your trachea and for your feeding tube surgery.


Keeping our fingers crossed for a few uneventful days.

As stressful as the afternoon was the morning was so much fun. I had the pleasure of meeting Ruben and his dad Jason who were at CHLA for a CT scan. Ruben is also an amazing CHARGE'er like Mason. His Mom Cathrine has a great blog here. Her photography is just beautiful.

Ruben is such an inspiration. So intelligent and sweet it's impossible not to fall in love with him instantly.

Ruben's dad was so nice to answer my 100's of questions. I'm hoping we get to see Ruben and his family again soon and I just can't wait to meet his little brother Callum. I heard tons about him.

How adorable is he?

Mason and Ruben meeting for the first time

So thank you all again for all the good thoughts and prayers. Your love and support mean the world to us.

Mason isn't doing so well

the pulmonologist is concerned he is going into respiratory failure again. We are only two steps away from getting re-intubated.

I'm pushing the ENT Dr to get in to see you sooner than Monday now that you are in failure again. We will see what happens.

So once again I'm asking. Send out thoughts and prayers that Mason is able to breath well enough to stay off the breathing machine please. Your support, good thoughts, and prayers have carried us through some dark days.

We were hoping we wouldn't need it again but we are so blessed to have you all on Mason's team.

I had a wonderful time this morning getting to meet Ruben and his Dad Jason. Will blog, and post pictures, about it later tonight.

Hurry up and wait

So it's been a while since I've posted. It's been a combination of being homeless for a few days and just not feeling like it. But I'm back now and going to try and catch up for the last few days.

Thursday you had your first physical therapy session. You didn't full on hate it but you didn't exactly love it either. You physical therapist is super nice and really patient and gentle with you so that helped. While your in the hospital you will be getting PT sessions on Mondays and Thursdays.

Baby jazzercise!

Thursday afternoon uncle Sean came and met you. Uncle Sean is good for your Dad and I'm so grateful your Dad got some guy time.




So Friday we spent the day with you then left around 11 pm to drive back home. It was nice to see the place (and to sleep in my our own bed so soft!) but the house felt like a corpse to me. You know like when someone dies and they say whats left is just the body. The the soul and the spirit had gone and now it's just the corpse. Without our family there that's exactly what it felt like.

Then on Saturday while Granny spent the day looking after you we spent the day with your brother. It was so great to see him. He kept giving me hugs and calling out Mommy. We didn't do anything fancy but we got to spent some real time together and it was wonderful.

Leaving was hard of course. I don't really want to think about it.

We got back to the hospital in the evening after figuring out where we were going to stay and you did not look good. In fact you looked awful. At one point they were even thinking they might have to re-intubate you but instead they gave you some steroids and increased you oxygen and you made it through the night.

Dad and I never left your side. We got a parent's room at the hospital and Dad and I just traded off shifts. It was a long scary night and we both felt so helpless.

Sunday not a lot happened. You spent the day getting better while Dad watched the Superbowl.


Monday Dad and I got back into the the LA Ronald McDonald house. We are in room #44 this time and it's twice as large as the room we had the first time.

You'd think we were moving in for a month or something!

After we got settled in we spent as much time with you as possible before he had to leave to go back to work.

I managed not to cry when he left. Well mostly anyway. I can promise you it's way harder on your Dad to leave than it is for me to stay.

Tuesday you looked amazing! At one point you were awake for almost an hour. We talked, we played, you cooed. We had a wonderful time.

Sleeping on Mommy's lap

Hey Mickey what's up?

I wanna put on... my my my my boogie shoes and boggie with you.

I had a meeting with the ear nose and throat Dr about your increasing stridor and respiratory distress. It was a long discussion that kinda went back and forth but in the end what we deiced is too go in and take another look and see if your laryngomalacia and mild subglottic stenosis have gotten worse.


Depending on what we find it will give us more information on what the next step is. The Dr said that in only 5% of cases is surgery warranted and he is thinking you may fall into that 5%.


The surgery sounds pretty invasive and only has a 50% chance of improving your breathing issues so I'm hoping it doesn't become necessary. For now you are back at 2 liters of O2 at 40% and are comfortable and happy.


I have asked the Dr's to coordinate the L&D and your tube feeding surgery so we only put you under anesthesia once and that's what they are working on now.


So again hurry up and wait. We're getting pretty good at that.

On the Road Jack Mason

This weekend we have been on the road. Since we had to move out of the RMH we spent Friday night at our house. It was nice but we were both a little lost.

Granny was good enough to come by and spend Saturday with you. So we could see your brother. I was at Amy's Sister house before Pierce woke up. I was looking over his bed and greeted him when he finally woke up. He just smiled and said "Hi Daddy".

We took him to lunch and then to get a hair cut. The hair cut did not go as well as your Mom and I would have liked but that is another story. We played and then napped.

We left Pierce at 6 PM and went to go check into a hotel for two days before we could return to the RMH. When we got there we had some issues with our reservations so we scrambled to find new accommodations. The Pasadena RMH was nice enough to take us in for the two nights so we set up our stuff and by 9 PM were headed out to the hospital to see how you were doing.

When we arrived you did not look good. Your breathing was labored, your color was off, and you had gas pain that keep you from sleeping. Your CO2 levels were hitting the 76 percent mark so the doctors and nurses were looking for solutions right away. Your Mom and I were very worried so we decided to spend the night by your bedside. The hospital was nice enough to give us a parent room. So we took turns and spent the night waiting by you. Some steroids and increased oxygen seamed to help. By 6:30 on Sunday morning you were doing better.

We returned to the RMH and tried to get some sleep but we were worried that we were too far away from the hospital so we found a hotel near the hospital and were moved in by 3:30 PM on Sunday. Your Mom took your one month from when you were born day present to you (picture to follow)

I watched the Super Bowl in the hotel room and then went to take over from your Mom. You looked comfortable and slept. At 5 AM the will do a whole new blood work up to see what happened on Saturday night. '

Sunday you weigh in at 6.5 pounds a good move forward my son. So Happy One Month Birthday!

Monday will Check out of the Hotel and we will check back into the RMH in LA.


- Dad