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!!
