Getting in a groove

We are doing well and trying to get in a routine and figure out all of Mason's equipment. Mason came home on oxygen, a monitor, and with a feeding pump. I feel like we have cords coming out of everywhere! And the monitor is very loud and will go off for crazy reasons and then you have to frantically figure out what to do to make it be quiet! If Mason wasn't breathing or was dropping his heart rate, I am sure the loud noise would scare him into fixing his problem!
Corbin is enjoying his baby brother being at home. Mason got him a play John Deere gator and tractor as a gift. He was very excited. We are working on gentle touch and clean hands all the time. Oh, and please don't mess with Mason's equipment. We have worked on getting Mason to take a bottle during each feeding during the day and he is doing well. He averages between 20-30 ml with the bottle and prefers the Walmart parents choice nipple(recommended by the Slp). He is doing really well and has been a good boy for us. We are so thankful and so blessed. We have our well child appointment at our pediatrician tomorrow. Please pray that he doesn't get sick. I don't like having to take him but am geared up with tons of blankets to sit him on and purell and Lysol wipes. Hopefully I can update with more news tomorrow but so far so good!

Below is a pic of our first meal together ,Corbin and Mason at home for first time together, and of Mason chilling at the house taking it all in stride. We are so thankful!

Headed home

After a 169 day stay in the Nicu where we met wonderful people who have touched our lives forever, we are headed home. God is good.

Rooming in

Our view for the night. If all goes well we may go home tomorrow!

Surgery update

It has been a long day but Mason's surgery went well. Surgery did reveal that his shunt was not working properly so he changed it out. He also wasn't happy with the fit in his belly so he fixed that as well (so he has a little incision on his head and on his tummy). Mason was able to be extubated before he even came back up to the NICU. Atleast he has perfected that! He was still very upset after surgery because he was so hungry. You could hear his tummy rumbling. When we got the ok from the dr. he took 20 cc out of a bottle and then was exhausted. I really think he hasn't got any consistent sleep for several days. He has been more content and able to sleep better today after surgery, still needing some tylenol for the recovery from the surgery. 

Trying to get relaxed before surgery.

On the way down to surgery this morning. 

As long as he continues to do well and recovers well we are still on schedule for coming home this week. I will have to admit that I am a little, well, a lot nervous. I am sure we will be good once we get into a routine. We better get some rest tonight because I think we are going to be in for a busy week!

First thing in the morning

Last night Mason had 80 cc drawn off his head and was a new man. It was very short lived. During that time he took a bottle with almost his complete feeding and was calm and quiet. Today has been more of the same agitation and fussiness. He isn't happy at all and acts like he is hurting. His head is full again and he is going to have the shunt revision tomorrow morning. His neurosurgeon is concerned he might have the blockage in his belly that is causing it to clog but the plan is to just take out the shunt and then put in a new one. We should know more tomorrow but please pray that this surgery be a successful one and that this would relieve his pain. It is very hard to watch your little one suffer and to not be able to help relieve the pain in any way. This picture was taken last night when he was content.

Revision

So it is looking more and more like Mason is going to have to have a shunt revision. This morning his head was bulging again. His head is do uncomfortable and so is he. He is not happy. They programmed the shunt to drain more and really it looks about the same. His neurosurgeon said that if it wasn't better tomorrow they would tap to help him and to see if that might open up the drain and unclog. If not better by Monday then shunt revision surgery. Please pray that this would work itself out on its on. Thank you as always for your prayers.

What we've been up to

We have been busy trying to prepare everything for Mason coming home. We have also been trying to get Corbin potty trained (thank you to Stacey for helping us out)! Corbin has been doing pretty good and has only had a few accidents. Here is how we spend a lot of our time:

And of course we had Halloween. Corbin was a deer for Halloween. I know not your typical choice but that is what he wanted to be. I had been asking him what he wanted to be and we had looked at costume choices at Target and he just wouldn't say what he wanted to be. So one day I got the pottery barn kids catalog out (it has Halloween, Thanksgiving, and Christmas in it) and told him we needed to pick out a costume for him for Halloween. Still nothing. So later someone asked him what he was going to be for halloween and he said, "I'm going to be a deer." Of course I had no idea what he was talking about but when we got home he went and got the Pottery barn catalog and got it and flipped to a picture of a stuffed animal reindeer and said, "See Mommy, I'm going to be a deer." So a deer he was.

Mason has been doing pretty good. He had a great day yesterday picking up his head and looking around. He still hasn't been eating that great (thank goodness for the gtube) and has been irritable from the shots. He will take his hand and push the bottle away, crying. This morning though he was more irritable than normal and was not able to be consoled. That was when they noticed his head was pretty full and was bulging, pushing down on his eyes. They went ahead and did complete labs (which ended up looking great-platelets at a new all time high 460) so they were just thinking about his head. The initial thought was to hope that neurosurgey would come and change the setting on the shunt to drain more but the resident came up and said his body should hopefully reabsorb it and settle itself out. So we just gave him some tylenol in hopes that would relieve some pressure. After his tylenol, Mason took a super long nap and woke up in a better mood and thank the Lord his head looked better. We still need prayers that he will feel better and recover from his shots and start taking the bottle again but atleast his head isn't as full as it was! We are still looking to take him home next week and appreciate your continued prayers for continued healing, transitioning, and for us to be equipped with all the knowledge that we need. We will keep you posted!

Mason is starting to figure out how to use his neck.

He passed his car seat test!