6.4.2016

HAPPY 8 MONTHS HOLDEN!! 

Are you kidding me you guys? I have an 8 month old! Where does the time go? It has been flying by since we have been home! I realize I haven't updated in like 2 months, but things have been pretty quiet around here! We have just been enjoying every day life again as a family at home! Its been AMAZING!!

I want to share what I have learned in the last 8 months of being Holden's mom.

I have learned a lot being a mom to a special little man. From little things like the strength we have as a family to the big medical stuff. 

Let's start with medical.

 I know what a co2 is.I know what a blood gas is. I know what my sons normal heart rate is when he is awake and when he is asleep. I know what oxygen saturation is. I know what peep, respritory rate, and tital volume is.Just to name a few. All things that I never in a million years would think I would know or need to know. 

Enjoying the little things.

Since we have had Holden this saying has a whole new meaning! It is so true in this life. The little things like health, breathing, moving, and the ability to eat. All the things we don't think twice about but I watch Holden struggle with on a daily basis. I remember being in the NICU and saying I will never be that mom who is sad that my baby is getting older because what a blessing it would be! That's all that matters in this life is heath, happiness and family! We are just so beyond lucky to have him!! 

Jealousy

Now on the flip side there is jealousy. I mean, I am only human. I am jealous of other moms who's babies can breathe on their own, or walk, or sit, or hold their head up. Things that Holden works really hard for on a daily basis comes so easy to these little babies. It seriously blows my mind that we just are born and know how to breathe. Like, What? It's so amazing to see our bodies work for us. But, on the other side it is hard to see Holden's body not able to work for him like mine and yours. I mean, every time I hop on any social media it is filled with babies! Babies sitting, playing, not hooked up to machines, parents walking around with their babies. Just being able to do things Holden can't do yet and it's hard not to be jealous! 

Patience

This has NEVER been my strong point! But I am learning! I have learned to be patient with myself and with Holden. Yes, maybe Holden isn't able to hold his head up all of the time, or sit or stand. (YET!) But he may be able to one day. Just because he isn't doing everything on everyone else's schedule doesn't mean he won't ever do it! I remember when this all first happened we all would just say "he just needs a minute" "give him a minute" and I still believe that. I believe he just needs time. He has about 3-4 therapist come in the home a week. (2 physical therapist, 1 occupational therapist, 1 vision therapist, and 1 speech therapist) One week, about 2 weeks ago, every single therapist that came in that week said they could see a big difference in how much stronger he is getting and the things he is able to do. It was so exciting to hear that others were seeing a big difference in him! I can have patience and we can do everything on Holden's schedule. We always tease it's Holden's world and we are just living in it. He definitely is the boss in this family!

Our dreams for him have changed.

When you are talking about having kids you always have dreams and hopes for them.Our dreams for Holden have changed a bit. My hope for Holden is that he will be able to breathe on his own, that he will be able to eat, talk, sit, and walk on his own. But above all our dream for Holden is for him to be HAPPY and to have the best life possible!!

I feel like Holden has taught me so much in his 8 months of life! He has changed the way I look at life! He is an amazing little boy and I am so so lucky to be his mom!

A little bit more about Holden Gray

We are working on rolling and being able to hold his head up all the time, not just when he wants. He is able to roll from his sides to his back! 

He is a chatty cathy! He has been talking a lot lately and making noise with his mouth is his favorite! He loves to make the most noise when we are all trying to sleep at night!

He smiles a ton! He likes when we wiggle or shake him!

His favorite toy right now is his beads! He also likes his rings!

He used to love tummy time and now it's the worst!

He loves to watch shows on the IPad.

Trapper (our cat) loves Holden, Holden is still not so sure. 

He is so stubborn! If he does not want to do something he will throw a fit or fake asleep.

He went to his first Bee's game on Memorial Day and likes to go to his dad's softball games!

 

Happy 8 months baby boy!

3.8.2016

Monday February 29th

Normal day. A good day. I had Holden with me in the room on our bed. He had been on room air for the majority of the day and acting normal. I took him out of the bouncer to change his diaper so I laid him flat on the bed. I was on the phone with Jess telling him that the water that the humidifier uses was eating water like crazy. Usually only need to fill it up once a day and I had to do it multiple times that morning. While I was on the phone with Jess Holden dropped his oxygen to 89. (His normal range is from 90 to 100) so not a big deal. I turned up his oxygen on his concentrator, silenced his alarm and went to the restroom. Mind you this is so normal. When I came back to the room he was stating 77. This is not normal. I started running around to find the oxygen tank so I could crank him up to 15, the highest oxygen I could give him. Still no change. If anything he went down in the 50's He looked HORRIBLE!! I called Jess to come home then called 911 as I bagged him. (similar to mouth to mouth but for his trach.) 911 was trying to have be give him chest compression but I was trying to explain to them his heart rate was stable. Is heart rate never budged. It was normal to the whole time. 

Jess got home and noticed I had turned his oxygen to 1.5 instead of 15. Way to go me! Once he bumped him to 15 he shot up to 100 and the ambulance got there. Asked what happened and said that now he was stable they didn't find the need to take him. They went to put him back on his vent and Jess started to very slowly turn down his oxygen and he dropped again. They started bagging him again and said they needed to take him to Primary Children's. We agreed. Jess rode with and I followed in the car. At this point I had checked out. My brain shut off. And Jess stepped up. 

By the time I got there he was in the ER surrounded by doctors and nurses and Jess was right by the bed. Holden was zoned out but his vitals were stable. They had him on the vent but were having a hard time ventalating him. (Come to find out they were using the settings when he was in Primarys a solid 3 months ago.)  So first thought was sick or infection. They started running tests and we were transfered up to the ICU. He was put in a room with 2 other babies that both had RSV. We had just found out that all his test came back negative. So we knew we had to get the heck out of there. Since he was stable we were able to convince them to move us to the floor. Which was the biggest blessing. We had our own room and a bed! We never left his side. The first night was really rough! He would not sleep! We were working on getting his vent settings where they need to be because he had gained a fair amount of weight. So we spent the next day working on that. 

On the 2nd we were just sitting there. I kept asking what we were doing what the plan was because his numbers were good his vent was good and we needed to get him out of the hospital ASAP before we created a new problem. The doctor came in and informed us he had him on the completely wrong mode!! Are you kidding me!! That is a huge problem because we were ventilating him completely different then he was used to. But they thought that this was what was best for him and that we could go home. So let me recap. They are changing everything we had ever known on the vent and you are just sending us on our way? Cool! 

So we met our home respiratory therapist at home just to go over the settings and make sure everything was okay. When we got home and we were setting everything up and you just hear a huge air leak and we could not figure out where it was coming from. It was from his humidifier!! Remember how I told you I was on the phone with Jess trying to figure out why it was burning through water so fast. There was a huge crack going almost all the way around it. ARE YOU KIDDING ME? It could have been this. It had to be this! Nothing else was wrong! It made sense. It must have finally just broke! I felt horrible! Did I just put my baby through 3 days of hell for nothing? I could not believe it! We are very grateful that that was all it is. He just wasn't getting enough air.  

The next day we had to be right back up to Primary's for his eye doctor. Which sucked equally. He doesn't need glasses and because of his condition he will maybe sometimes have a wondering eye. All fine. But it was the question he asked that sucked horribly! He asked "what is his life expectancy?"  I have never been asked that before. But I answered it. We don't know. To all my fellow parents out there you ever go to a routine eye exam and get asked what your child's life expectancy is? No? That's not normal? 

We did get the good news that we qualified for the RSV shot! We had been waiting for that and we are so happy we got it. It's supposed to help fight off RSV so we ran right from the hospital to our pediatrician to get that done. Then we had to hurry home and meet our home nurse to get reevaluated. It was a busy day. It was also Jess' birthday. I felt bad. That wasn't how I wanted to spend his birthday. We also had found out some bad news about his grandpa. It was a tough couple days and an even tougher birthday. 

I have been having a crap attitude lately. Even before all this happened. Being home is nice but being home is also very challenging. Its hard. We are the odd man out. It's hard to be around and see families out with their babies and seeing them out and playing. It's hard because we don't know that. I cried the other day because I got to walk around with my baby. Yes. Cried because I walked from upstairs to downstairs with my kid. I had to carry machines too but I got to do it. That's not normal. 

I also have been doing the whole why him? Why us? Over the last 5 months I have seen a lot of really bad things happen to some really good people. To me it doesn't make sense. I have been told that God has a bigger plan and that God sent him to us for a reason. But I don't believe it. I believe in science. I believe that unfortunately me and Jess don't mesh well when it comes to having kids. I don't believe there is a bigger plan. I wish I did. Maybe it would make this all so much easier. But I just don't. I'm working on my attitude and trying to have a better outlook and I know there will be good days and bad. 

Holden is now 5 months old!! Holy crap I can't believe it! But here is the video of him just grinning his little heart out in the PICU!
Don't mind the IV in his head. 

2.18.16

If you haven't heard already (which I'm sure you have) WE ARE HOME!!!! 

That's right we are home! In our home with our baby! And let me just say... It's amazing! Even though its only been what a couple days? But being able to be in our own home and in our own bed has been so nice! 

I mostly wanted to go over our most frequently asked questions. We get asked a lot of questions and a lot of them are the same so I thought I would go over them! 

Is Holden home yet?

So glad I can finally say Yes! 

Did we come home with equipment?

YES! haha we have so much equipment we came home with. Holden is vent dependent meaning he is on the vent 24/7 so with that comes a lot of equipment. For his breathing we have his vent, his humidifier, his suction machine, his oxygen, and an oxygen concentrator. That's not counting all the MANY supplies that come with all of those and his emergency supplies he needs as well. He also has a feeding tube so he has a feeding pump and also a sat monitor. Again, there are countless things that go along with that as well. Then on top of all that you have all the regular baby stuff. So to say the least our whole house is FULL of Holden supplies! 

Are you scared to bring him home?

NO! We are beyond confident in our ability to take care of him. We also are able to give him 1 on 1 care at home where at South Davis that wasn't the case. Also we have nurse that comes in for 8 hours most nights so we are able to have some peace of mind. And our families have been trained and are very helpful! 

Will he always be vent dependent?

As you know Holden is very very rare. There are 2 other babies with his condition in medical literature and those two babies have different mutations then Holden. He is one of a kind! So the answer is we don't know. We are very hopeful that one day he will be able to go periods of time where he will not need it. When he was born he did not breathe at all and he has slowly been able to breathe more and more on his own. So we are hopeful. 

Does he move?

This is my personal favorite. Yes, Holden moves. As much as "regular" babies? No. But he moves in his own way and as he gets stronger he moves more and more. But it's always on his terms. He doesn't reach for toys and isn't able to hold his head up all the time on his own but he can go periods of time when he can hold it up every once in awhile. They compare him to a newborn to 2 month old baby to what he is able to do. (He is now 4 1/2 months old)

Doctor appointments?

I wish I could say for the most part that we are done with hospitals for awhile but having a son with special needs that just isn't the case. We are lucky though because we don't have very many doctors to see. We only have one we will see regularly at Primary Children's and the rest will be only every once in awhile. We also will have therapist that come into our house and work with Holden every week. That will be nice so we won't have to pack up and go anywhere. 

Other Kids?

Actually I lied, THIS is my favorite question. We get asked this one by almost all our doctors we have come across since Holden was born. While we were in the meeting finding out what Holden diagnosis was they asked if we had thought about having more kids. I almost lost it! That was the last thing on my mind! I'm not sure if I mentioned it before but we have a 1 in 4 chance that this will happen every time we get pregnant. Unfortunately me and Jess just aren't a good match when it comes to having kids and that's hard! At first it was hard for me to understand. I remember telling Jess that it didn't make sense to me. We did what we are supposed to. We were in love. We did everything right so why couldn't we have healthy kids together. Don't get me wrong I love Holden with all my being but if I had a choice I would not chose this for him. I would chose for him to be healthy! So our options for having kids in the future would be taking our chances, adopting (expensive) or in vetro. (even more expensive) So as of right now we haven't thought much at all about more kids. We are just enjoying Holden right now. 

Can we come visit?

We would love to have everyone come visit and meet Holden. But it's cold and flu season and Holden is VERY fragile and it is VERY important to keep him healthy. So if you haven't had your flu shot or whooping cough we will ask that you wait until spring to come visit. Also, if you have been sick or around someone who is sick we ask you to not visit. But no worries spring is right around the corner!! 

I think that pretty much sums up what is going on over here. We are just enjoying having him home and being in our home again. We are working on getting in a routine and like I said just trying to keep Holden healthy! Thank you guys so much for all your support through this journey! We appreciate each and every one of you more then you'll know! Now we are home our journey doesn't end, it's just beginning!! 

1.27.16

I know in some of these blog posts I post a lot of information and some that are very personal things that we are going through as a family. But I figure if there is someone somewhere going through something similar they can read this and feel like they aren't alone and can help in any way. Because this road we are on is a pretty lonely road. Not very many families go to the doctor and have their doctor remind them that their child could pass away. That is our reality and that is what happened recently. 

Last Friday we had our first neurology appointment since we left Primary's. It was definetly not my favorite. She mostly wanted an update on what is going on with him and to see him. There was really no new information. Here is the key points that we went over.

We are keeping his meds and dosing the same. 

He may be put on another medicine when he turns 1.

May need to go out to the Mayo Clinic at some point to get evaluated.  

Medically that was about it. No changes with a lot of maybes. But it was the unnessisary conversation that bummed me out. She reminded us that Holden could pass away from an infection or could not breathe and get brain damage. She also reminded us that his case is very severe and he will never be "normal." She also told us we need to have a plan in place for if he does get brain damage or an infection. She also told us that Jess and I could get divorced from the stress of raising a special needs child. 

Rant begins now:

I am not going to worry about him one day maybe getting an infection or one day maybe not breathing and have brain damage that seems so very dumb to me. I could get an infection or stop breathing at any point and get brain damage. I could have a heart attack, cancer, or get in a car accident and pass away. But you don't see me waking up every day worrying about that. I hope that doesn't happen but I don't let it effect my day to day life. Why should that be any different for Holden? Now I know Holden is more at risk for different illnesses and infections and something as simple as a cold for you and I could be life threatening for him. Trust me, I am aware. And we are taking precautions the best we can to make sure he doesn't get sick or an infection. But I can't let that consume me because as of today he is here, healthy and doing well. 

Also, I am aware that Holden probably won't be "normal." I think we realized that when he was born and over the last 3 and a half months of his life. But this is our normal. We don't know anything different. So yes, he may not be "normal" like other peoples children but to us, he is "normal." Jess said something that I loved the other day. He said that anyone can have a "normal" baby but not everyone will have a Holden. I love that. It's so true. We are so blessed to have Holden and he has taught us so much in the short time in his life.

Don't mind my half nakey wiggly boy!

Now what I didn't know is that our neurologist was also a marriage councilor. Don't get me wrong she is a brilliant lady and a very good neurologist but I don't think she is a marriage expert. You're telling me that having a baby with special needs is stressful and very stressful and hard on a marriage? Trust me we are living it so you don't need to tell us. BUT is it necessary to say that we could get divorced? Is it necessary to make a comment about anybodys marriage ever? It irritated me. The whole conversation irritated me. 

Don't get me wrong I spent the next day and a half crying. No one should ever have to have that conversation. Any part of it. I don't wish that upon anyone ever! But it took a day and a half of talking to family and Jess to get me back on track. (we have an amazing family and support system) I can't spend my life worrying about the what ifs. None of us can. What we can do is enjoy life as it is now. Back to a couple posts ago I posted a quote and it is by far my favorite! "Worrying wont stop the bad from happening it just keeps you from enjoying the good!"

Now done with the doom and gloom on to the fun stuff!
We have got to take Holden home for 3 home visits. Yes I said 3! They were amazing!! Words cannot describe how amazing they were! It feels so good to have him at home even if it was for a little bit! But I was about to keep him there. The worst part of taking him home is bringing him back! But I am very grateful to take him home at all! He is also already up to 14 hours on the home vent!!! and I am hopeful that they will bump him up again on Friday! They said that once we got to 14 hours they start talking to home health to get everything set up for when we go home! Ahhh so amazing! I'm telling you we are on our way! 

 

Let me just tell you a little bit about Holdy. He is the most stubborn serious baby I have ever met. If he does not want to do something he will let you know. He turns bright red and shakes his head and pulls away. Which is pretty impressive seeing as he doesn't move a ton, unless HE wants to. Everything is on Holden's terms. It's his world and we are just living in it. He is the best cuddler and loves to be held! He is a big boy! He wears almost all six month clothing! He has the biggest eyes! He is also very serious. He smiles but only every once in awhile and it is almost always when we look a way. He is a stink. He also moves a lot more recently. A lot more big movements which has been fun! They say that around 3 to 6 months his receptors change and I feel like we have seen a huge difference in his movement. We are still working on sitting and head control with him and sucking and taste. 

I think that is about it for now. 
I have also started a page for Holden on Facebook so if you want any updates on him or know when I make a blog post like the page!