11.29.15

I miss Holden! I miss my little man every night when we have to come home but some nights are harder than others. Today is one of the harder ones. Holden turned 8 weeks today and he is getting so big. I am able to see him every day but sometimes I feel like I am missing out on so much. Tomorrow Holden is doing another trial on his home vent (thanks to one of our awesome nurses convincing them to give him another shot) and we are really hoping for the best! But between you and me we are pretty sure regardless we will be heading up to South Davis. Which is fine. I have heard we will get some more independence on taking care of Holden which will be awesome. But it's not home. 

 

I feel like the worst part of all of this is life goes on. There is still bills, work, chores, and all your usual adult responsibilities that have to be taken care of. Not to mention all the new medical/insurance stress that has been added to the mix. And I'm convinced my poor husband is wore thin. We both are. We are ready for our little man to come home. I see families that have their babies home and all together and I am jealous. It makes me miss Holden even more. He is our world and he is on the other side of the Valley. 

 

I am very grateful that I have my son and for there to be a place for him to be until he can come home but it doesn't make it any easier when I have to give him a hug and a kiss at the end of the day and tell him I will see him tomorrow. Hopefully not much longer and I won't have to tell him "see you tomorrow" and it can be "goodnight."

P.S. It has been 1 week since Holden's last "episode!" Yay Holden!

11.23.15

I feel like I'm due for an update but honestly I don't really have one. Which is a good and a bad thing because that means we are still at Primary's but on the other hand no news is good news right? Right now we are kind of at an awkward point. We are pretty much just waiting for Holden to stabilize and become stronger. As of right now the only thing that is stopping us from going home is he is not strong enough to be on the home vent and he has these "episodes."  Holden has been having these "episodes" for awhile and no one can really explain or pinpoint why they are happening. It's hard to explain what they are and what he does but mostly they aren't necessarily good. Me and Jess have an opinion on what we think it is but not sure everyone agrees with it. Today they think it's his medication causing it so they may be making some more adjustments to that to try and find his perfect dose. 

So what this means for us is we are just in another waiting game. Holden is almost to the point where he isn't really considered an intensive care patient anymore. Which is a good thing! But what does that mean for us? We will probably be going to another hospital called South Davis. It's more for kids who could go home but aren't strong or big enough yet to get there so this is where we will go as we work on getting him on the home vent and home!

But other then all that medical stuff Holden is still as cute as ever! He is such a good baby! I may be a little biased. His physical therapist wants him to start working on sitting up more to become stronger so she got him a bouncer the other day. Yesterday me and Jess decided we wanted to put him in it for the first time and see what he thought. When we turned it on at first he smiled then he made a funny face and wasn't really sure what to think. Eventually he just slept and all his numbers were the best they had been all day. 

He also has found his thumb!

With the Holidays coming up I would love nothing more then to have Holden home with us but I am thankful that I have him here. I am thankful for all the doctors and nurses that have taken such good care of him. I am thankful for modern medicine and technology and the many more holidays we will be able to have as a family because of it. I am thankful for all our friends and family that have supported us through all of this and have reached out to us. I cannot even put into words how much it means to us and how grateful we are for each and every one of you!

11.11.15

You guys!! Let me just brag about my son for a second! Today after our trach and vent class our respiratory therapist and nurse told us that Holden's vent was on a CPAP setting which only provided pressure support and he was breathing on his own and had been for 20 min! I seriously did not believe him! So I walked over to his vent and sure enough he was all on his own and doing very well! They let him breathe on his own for about another 40 min and then put him back on his vent but on very minimal settings. The doctors only wanted him to be on his own for about an hour because they didn't want to wear him out too much but are wanting to try again tomorrow if he is having another good day! Which is amazing because we were not expecting this until way down the road and we could not be more proud of him!

He has never been able to do this for this long before. They have done it once before they started the medicine and he made it for about 7 minutes and then gave him his medicine and was able to do it for 15 min.They were saying they were not exactly sure what changed or clicked for him today for him to be able to do that. They did start him on another medicine and they aren't sure if that had something to do with it or not. And we aren't sure if this will be something he will be able to do more consistently or again but we are thrilled that he showed us today that he is able to do it on his own! Today was an amazing day and I am so proud of my little man!

I also saw this quote today and I absolutely loved it!

11.9.15

On Thursday November 5th Holden went in for surgery to get a G-tube for feeding, to get his stomach wrapped around itself to prevent reflux, to get a trach, and a circumcision. It was a lot!

Holden right before surgery

It was about a 4-5 hour surgery but it felt much longer sitting in the waiting room! Both surgeons updated us after the surgery and told us that everything went well! We were so happy and so excited to see him because we had never seen his face without tubes and tape on it! When we walked back to his room his eyes were wide open and we could see his whole face! It was the cutest face I had ever seen! We were so shocked to walk in and have him be wide awake looking at us! His strength is so amazing and I am so proud to be his mom. 

Those cheeks!!

Sending your 1 month old into surgery is something I cannot explain. Actually, dealing with all of this in your child's first month of life is something I can't explain. You want to take the pain away from them, help them in anyway you can and there is literally nothing you can do. I can't even hold him to comfort him. But we do our best to let him know we are there for him and to comfort him.

Yesterday we were visiting and he had a rough day so he was heavily medicated and was asleep most of the time. Right before we left he started to make all these new and funny faces. It looked like he was trying to smile. It was so cute! He wasn't really able to make these faces before because of all his tubes and tape! It's the little things. Literally that make our hearts so full! 

Jess kind of got a picture of it! 

 Tomorrow the ENT doctor is going to come check on his trach to make sure it is healing correctly and if it is they are going to change it and we will get to hold him again! It has been 5 days since we've held and I can't wait to have that chunk in my arms! His feeding tube has been healing great and he has been tolerating his feeds and is up to full feeds! 

We are now working on getting him healed and stable so we can take him home. They are also trying to find a perfect dose of medicine for his Myasthenia. This is by far the hardest thing we have been through in our life but it is also the most rewarding. I am so grateful to have him and have the opportunity to see him grow and improve each day! 

We are hoping to have him home by Christmas! It would be the best gift we could ask for!