12.31.15

Happy New Years Eve! I have a feeling this is going to be a long post so grab a snack! Haha or if you just want the usual Holden updates come back on the next post because for some this may be a little too much information. But as the New Year is among us I am doing what most of us do, reflect on the past year. And lets be honest I have a lot to reflect on. 

2015 was an emotional and challenging year for Jess and I. We got the biggest blessing, Mr. Holden Gray but also our strength was tested over and over again. There are many things I will take to the New Year with me and many I wouldn't mind leaving in 2015.

Our 2015 started out with a lot of excitement. We decided we were ready to start a family and were able to do so right away. I ALWAYS wanted an October baby so imagine my excitement when we went in and our due date was October 4th. I was thrilled. I was even more thrilled when Holden was hitting all his mile stones as he should. I felt him move right when they said I would, things were happening right on track as they were supposed to. We were so excited! Jess was beyond thrilled to be having a boy to do all things boy with. It was an exciting time! 

I wanted to do everything in my power to make sure Holden was a happy and healthy baby. So I started taking prenatals 3 months before we started to try to get pregnant. I quit soda, was VERY careful about what I ate, I even wore a mask while painting his nursery. Unfortunately, I have blocked out the majority of my pregnancy. I think part of it is normal and part of it was the fact that when Holden was born, not moving or breathing everyone's question was "did he move a lot?" I had no idea how to answer and I hated that question. He moved. He moved everyday. I was never concerned if he was okay in there because I felt him everyday. Also, with this being my first pregnancy I had nothing to compare it to. So to my knowledge Holden moved. 

Our Doctor was going out of town for UEA on the 8th of October and if I didn't have him naturally by then I would have to wait until the following week. Which I was not about to do. I was over it and wanted him out! So he induced us on the 4th! (Which is a decision I will never regret. I was so happy to have our doctor there!) I was beyond nervous! The whole giving birth thing scared me! But I was ready to meet our little man! 

We got there bright and early! Everything was fine. Got my epidural. But nothing would have prepared us what would happen next. When they had the heart rate monitor hooked up to him there was no variability but his heart rate was strong so they weren't worried. But we were. I think we knew something was wrong. It was something they hadn't seen before. (a term we got very used to very quick) Our Doctor showed up around 5:00 and said it was time to start pushing. I started pushing around 5:20 and an hour later we had Holden.

Scariest moment of our lives. He came out an odd color, quiet, and limp. Dr. Barney told them to take him right away and Jess went with. I was in shock. What the hell just happened? They brought Holden by me so I could see him before they took him to the ICU. He was the most beautiful thing I had ever seen! and his skin was so so soft. Jess went with to see what was going on as I stayed in the room. 

The next bit was a blur. They told me I had to wait before I could go see him. Then Doctors, Family, everyone coming in. Said something was seriously wrong and thought he was having seizures (he wasn't) so he needed to be life flighted to Primary Childrens right away. I was moved to my room and both our families came in and it finally hit me. I couldn't get a grip. They brought him in before he was sent up. I went to touch him and he pulled away. My child who they say didn't move just pulled away from me? Typical Holden. I was then too scared to touch him so I went back to bed and signed the consent forms and he was off. 

Holdy a couple hours old right before he was life flighted. 

I tried to get Jess to go fly with him. I didn't want him to be alone. But he didn't he told me he wanted to stay with me. Which I will be forever grateful for because that was one of the hardest nights of my life. My doctor got there at 8 am to release me. He told us he spent the night before going over the chart and his ultra sounds to see if there was something he missed. There wasn't. He is a very good Doctor and an even better man. I got my prescriptions and we were on our way up to Primarys. 

To be honest the next month was a blur. We started with they thought he was brain dead. But the MRI came back normal. They would say horrible things to us like "Hold him while you can." They thought he had SMA. If you don't know what SMA is be glad. It is a horrible genetic disorder where he would have had a life expectancy of 2 months. We went a couple of days thinking that was what he had. Worst days of my life. I cried and cried and cried. I cried when I saw him, I cried when I was away. I was a wreck. But Jess wasn't. Jess kept telling me everything was fine and he didn't think that was what Holden had. He keeps me sane. 

Eventually we got the results back. We were sitting by the bed, I was crying, and our neonatologist came up to us and said asked "How are you?" a question I hated. Then said "So he doesn't have SMA." We were shocked! We kept asking are you sure? She then said she was pretty sure but she would double check. She was right! It was a huge relief! But we didn't have answers. They said they were then going to go ahead with the genetic testing. He was the first to have it in the NICU and we received it in 5 days. Which is unheard of! Most testing takes at least 6 months. I am so grateful we were able to get that test done. 

This was when he was a day old. He had frog legs, his feet were up to his shins, and he couldn't open his hands very well. 

When we had our meeting discussing the results, Congenital Myasthena Syndrome, they talked about that he would need a trach and a g-tube. At this point I could handle anything as long as we had him! We did have a doctor in the meeting that was being a huge negative nancy. Saying that if we didn't want that life for him or us we could just take him off support and they wouldn't judge us. I think Jess wanted to seriously punch him! But then they also told us there was medicine! What? They had a medicine that could help him move and breathe? This was amazing! They were going to give him a very small dose the very next day! They told us we could be there for it but there were also risks involved so they had all emergency staff there just in case. I would hard pass and hear about it later. 

They said it was amazing! They gave him the medicine and he woke up looked around and started moving. This was a very very small dose! We were stoked! Over time they kept increasing it until he maxed out. They also added medicine and took some away. It was amazing to see the change. He would wiggle and be awake more. He was breathing more on his own. How lucky were we. We had a diagnosis and a treatment! But the doctors have made it very clear they don't know what to expect. This is a very rare condition and hardly any other cases of it to compare to. So we are kind of on our own. 

Here is what I know about Holden and his condition. He makes improvements every day. He is becoming more interactive, stronger and can move more. Honestly? That's all I need to know. I don't care about their guesses about what his life will be like or any other nonsense. They haven't been right yet. Plus Holden is showing us he can do new things all the time and that's all I care about. We are taking this day by day and today I would like Holden to pass each and every home vent trial. The rest is just background noise.

So this is what I am leaving in 2015. The heart ache I felt. Literally the ache in your heart when you hear or feel something so terrible that it gives you physical pain in your heart. I am leaving any and all negativity related to my son and our experience thus far.There is no room for it in our future. But, here is what I will take with us, Mr. Holden Gray. The most important thing. The only thing that matters. I get to take Holden with us into 2016!! 

2016 will be our year I just know it! I don't have many goals or resolutions for the coming year. I want to be better about taking things as they come, day by day. So here are my current goals the obvious one, GET HOLDEN HOME! A goal that is very obtainable for 2016 I think. And most importantly, Keep him healthy! Our goals as a family is to stay strong together! Our schedules and lives this last year has been turned upside down and messed up me and jess' schedules. We don't have a lot of time together and when we do we are exhausted. But I am grateful that I have him through this and we can get through anything together. He is my strength. and I love him for it. 

This year we have learned a lot and met some amazing people!

People are good and so is modern medicine! 

I hope you all have a happy and most importantly a HEALTHY New Year! 

P.S. Holden is up to 2 hours twice a day on the home vent! We are on our way! 

12.18.15

My heart is so very full! First and foremost I have to say a big THANK YOU to everyone who has donated to the go fund me page! Like seriously how blessed are we and how did we get so lucky with all these amazing people in our lives? Especially during Christmas when we know funds are tight! THANK YOU THANK YOU THANK YOU!!

Holden has started his home vent trials and is handling it like a champ! He is only doing 30 minutes a day twice a day but if he keeps doing well they will bump him up to 1 hour a day twice a day on Monday! The RT was saying that its good to go slow and build him up because the lung is a muscle and you need to work to make that muscle strong right?  

After his trials he is pretty tired. Its hard work! But they made some big vent changes and I feel like that has helped a ton with his episodes and is making the transition easier on the vent. 

You guys, he makes the funniest faces!

He will have to be on the home vent for 2 weeks straight 24 hours a day to be able to come home which is pretty lame but when he is on the home vent for longer periods of time we can take him out on little field trips. I cannot wait for that! Even if it's just to the R.V. in the parking lot to watch a jazz game! When he is able to go out I still will be careful of where he goes with cold and flu season so we probably wont venture far but I will take what we can get! Even if its just to Primary's for Dr. appointments. 

Go Jazz!

oh and a side note his speech therapist has been working on taste with him and he LOVES suckers! He loves the red flavors but not blueberry so much! He also gets to taste formula but definitely would rather have suckers. Can you blame him?

Still a little bit of an adjustment being here. But we are trying to make the best of it! :) 

Not much of an update but that's what we got going on now and it probably won't change much for a bit but we will keep you updated as things happen!  

This face kills me! 

Thank you so much for all the support we have received. I don't think I could say ever say thank you enough! We love each and every one of you and see all the nice things and support you have given us! If I don't post again before the holidays we hope you all have a very Merry Christmas! 

12.9.15

We have made it to South Davis. We were transferred yesterday morning and it was very...emotional! As good as it is to leave Primary's I definitely wasn't ready. I loved our nurses and care he received there! That was our home for 2 months and we had to up and leave. I remember a mom was leaving with her baby about a month back and I remember asking her if she was so happy to be leaving and she said that it was actually really sad. I remember thinking that she was crazy but now I know exactly how she feels! 

He was transferred by ambulance and we followed them and met them here. He handled it well with a little help of ativan, which I'm not a huge fan of because it makes him drowsy for the rest of the day. Also, had a couple of episodes but that's okay because he had a tough day and was very sleepy. He didn't even wake up for Santa. 

It is very different from the NICU setting we had before. There isn't a nurse with him 24-7 and it is taking some getting used to. I'm a worrier and unfortunately I am unable to be there for him the whole time as much as I would like to. Also, we are working on getting the staff to get to know him and how he works and we are getting used to how they work. It takes patience and if I have learned one thing in this whole experience is patience is key. 

 

Our goal at South Davis is to keep him healthy and to get him on the home vent. Once they get to know him better we are able to start home vent trials. Which I am looking forward to. I think a lot of people count Holden out but I know he is strong and able to do this and just needs time to get used to it. The speech therapist said that it is really encouraging that he takes a bink. He loves his wubba nub! So the first thing she is going to work on with him is to improve his suck so he is able to maybe potentially take food and formula orally. 

 

We are able to do a lot for Holden here, almost everything which is nice because when we are able to go home we will be alone and doing everything ourselves anyways so its nice to have the help here if we need it. Unfortunately, it doesn't look like we will be getting our wish to be able to make it home for Christmas as a family. They want him to be able to be on the home vent for 2 weeks straight before we are able to go home. But we will just spend Christmas here at the hospital as a family which will be just fine. 

 

We met some amazing people at Primary's and I miss them already! They have been more than just caregivers to Holden and I am grateful for the friendships that we have made. Holden received amazing care while he was there and for that I am beyond grateful! Primary's was our home and all Holden knew so it is very hard to leave but in this life everything is temporary and we knew that. We know that being here is only temporary also and soon we will be home as a family. 

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!