Happy Easter from my little annoyed one to your family!!!
Katie’s been doing just awesome. She weaned off the vent completely by last September and had the trach removed on December 7th 2016. Sorry for not updating but a lot has been going on and it’s just now starting to get into a workable routine.
Katie starts outpatient therapy next week for OT and PT but we are on the wait list for Speech and assuming I like this center I will be placing her in their feeding clinic, seeing she still has that strong oral aversion. We have set up a scar revision procedure for her for June 21st, it basically closes the trach site completely if it isn’t closed already and makes the scar look prettier. It’s a simple procedure and she will only have to be overnight one night so that will be nice and it means we can actually take her swimming this summer for the first time.
We sincere hope is I keep this blog up with updates on Katie’s journey I haven’t been the best at it and I probably will end up posting up stuff from the past that I haven’t mentioned yet. I don’t know if this is being read or not but if it is I hope her journey makes your journey feel a little bit less lonely.
Happy Early Easter!!
Also I’ll be putting anything about Katie’s journey under the family or Nicu related categories but I will write about other things as well. Cheers!
December 7th 2016 Katie finally got the trach removed!!! She had it in for a year and 8 months so just short of the two year mark they originally told me. She did remarkably well with the whole thing, her 02’s never dropped below 96 all night while we were at U of M Children’s Hospital. We were supposed to originally stay over two nights but because Katie was rocking it out so hard we got to go home after only one night! Also slightly awesome is that they have a care dog at the Children’s Hospital and she actually petted it! We have a dog here at home she doesn’t give the time of day to but this pretty golden retriever she was all about petting him. Anyhow I received the best Christmas present possible!!! Since her trach has come out she’s like a whole new child. She talks more, she’s more active and she’s holding down her food better every day.
The other huge change is we are soon to lose nursing (THANK GOD) come the 23rd. On Christmas Eve it will be the first time since Katie was born that we haven’t had a nurse helping to take care of her. And as much as I appreciate having had them, I’m grateful to be over with nursing. For one I can walk around in no pants in the summer again and that is something I will admit I really missed. I’ll try to get better about writing on this blog but it probably won’t be until next year when I’ll have more time to dedicate to this.
Anyhow Happy Hanukkah, Happy Kwanzaa, Merry Christmas and a Happy New Year!!!
I normally don’t do this where I post up about something so serious but this is something that is very important to me. I’ve been a very lucky unlucky person and there are times were I get down about the life I lead but then I realize I am truly blessed because there is always someone that has it much worse than you. I think when you are a parent of a preemie it is very easy to have tunnel vision and that’s perfectly normal. Now I knew of Isaiah having brain cancer but I didn’t hear much about it because most people don’t want to burden you with their troubles when you’re in the NICU watching your little one fight for life every day.
Anyhow that is beside the point this post isn’t about Katie today, it’s about Isaiah. Isaiah is an amazing four year boy who has brain cancer. He previously had gone into remission but now it’s come back and I can tell you there are no words I can possibly say to his parents that are dear friends to my husband that will make this terrible situation better. However they did set up a donation site which I will be donating to after I post this. I hope the link that I left at the bottom works and I hope in some small way this gets spread around and maybe the internet could help this little man to hopefully beat cancer for good this time. On the site it gives the whole story and I know his parents wrote it and I don’t think I could do them justice by just copying it. If you are able to donate I’m sure they would greatly appreciate it and if you can’t if you could maybe share it around that would be awesome. I know I’m asking a lot here because you don’t know this little guy but maybe all of us together could help to save his life or at the very least give him a fighting chance. I hope your day goes well, I hope your little ones continue to thrive and above all I hope you wake up every single day and breathe in the air and know that every day is a gift. Bless you all!
It’s three days after the most volatile election in my lifetime. We all saw something that most of us haven’t seen in our lifetime. A election filled with hate and negativity. Now I know that in every election there is always mud throwing contests but this one was different on many fundamental levels. We finally have concrete proof on how divide a country we live in.
One half of the nation is against the other half and that makes me sad. Not because who was elected but what it means for us as a country. How did we get to this point where we cannot have a civil conversation about politics? What does it say about us as a nation where everyone wants to point their fingers at another and blame whomever does not agree with us? But mainly how do we fix this?
I don’t know the right answers and I’m sure many feel the same way. No matter what side of the argument you are on and I think we can all agree we need to start uniting instead of furthering the divide that is happening in our country. So how about starting today we start loving one another instead of fighting. Compromising with each other rather than blocking each other at every turn. I believe in us, I believe this is an attainable task and I believe in the future of this country, not only for me but for the next generations. What we do today will echo throughout history and lets leave the future a more beautiful place for our descendants. They deserve a better more united world and we should start today to make sure that is exactly what they get.
I hope you all have a lovely weekend and just remember love is always the answer.
So a lot has happened since last time I posted! Katie got her bronchoscopy done last month and everything was great. She didn’t even need to put her on a breathing machine or anything, she did the whole procedure breathing on her own while being knocked out. So a few weeks back we started capping her during her waking hours and she’s now at all waking hours capped off!!! The weaning at night is going great as well. She’s up to 6 out 9 hours off the vent overnight so in another couple weeks, she’ll be off the vent 24/7.
We have her sleep study coming up on the 9th of November which I’m hoping she passes, then we see the vent clinic and the ENT’s the following week. If everything goes well with the study, she stays healthy, and there is room in the ICU her tentative date for decannulation is the 30th of November. It’s a two night stay at the hospital but I’m hoping that it won’t have to be two nights. I’ll update when i know more. I hope all of you had a great summer and here’s to an even better fall!!!
It’s been awhile so here are some of the newer photos of her. The top left is her air-vo, the bottom right is her on her HME and the other three she’s capped off!
Maybe it’s just me or maybe it’s how I was raised, moving from place to place and being in 13 different schools before graduating, but I have a hard time making and keeping friends. They all have expiration dates. The only friend I don’t feel that way about is someone I’ve had the pleasure of knowing for over 20 years. Somehow through all the moves and distant we’ve been able to always be there for each other and I am thankful for that.
Being isolated as I am, with a toddler on a ventilator (which she’s really really close to being off of it full time), I have lost more friends and gained a few but no one I can really connect with yet. When she was in the NICU there were so many people that swore up and down they would be there for us but by the time she came home that quickly and distressingly changed. Since I’m a stay at home mom and Katie still have to be in germ free areas, I barely get out and see anyone. Yes I see all her doctors, therapists, and nurses but it’s not the same. I don’t see my friends very often unless I go to them and most of the time it’s damn near impossible to get a hold of them. It makes it really hard for me to cope sometimes because I’ll be honest I feel lonely. My husband can only amuse me so much and he’s wrapped up in his own stuff which I imagine will take him a long time to come back to himself, so even when we are in the same room I’m still alone. I know with time he will get better and we can actually be like a normal couple again but for the time being it’s just me and Katie.
I wish most of my friends didn’t live so far away or were able to answer their phones when I call because sometimes I feel like if I don’t talk to someone I’m going to lose my mind. I think that’s the main reason I started blogging. I could no longer stand just talking to myself in my head. At least I don’t answer back yet so that’s a plus. But to get to the point of this post is this: it kills me inside to know that I have little to no one to depend upon and that I have to do all the work to maintain any relationships I have and I’m sick and tired of it. I’m angry and frustrated because at one point I was positive I would have the mental support to get through this hellish ride I’ve been on for almost two years and to find out that I was wrong is just devastating. I’m not sure how to end this post so I’ll just say this, I’m not looking for pity or anything of the sort, I just needed to get this out before I just start screaming. Sorry to leave on an unhappy note but the good thing is the next one will be full of pictures of Katie playing with bubbles for the first time. So I may be disappointed with the people in my life but at least today for the most part has been a lovely day and what more could I possibly ask for.
When they lay me down to rest
I hope and pray
They know I’ve done my best
May my soul be clean and pure
With no regrets
May my daughter know me well
Know I am with her always
As long as time can tell
When they lay me down to rest
I hope they know I tried my best
May my heart be filled with joy
May my husband go on strong
And continue to carry on
When they lay me down to rest
I know that I have done my best
So I will leave this world
With scars on my body that show my tests
And with a loving life ready to rest