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! 

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.