Katie has a g-tube and while it’s awesome because I can make sure she gets all the calories she needs and the proper amount of vitamins etc. I fucking hate it. She’s got an extremely strong oral aversion and if you try to feed her orally she fights you and starts sobbing which of course isn’t great when you’re trying to make her like feed time and trying to convince her it’s fun to eat. She has a feeding evaluation at the end of the month and I hope on all that is holy that they figure this child out because so far I’m failing at an epic level.
The other issue with the g-tube is she pukes….a lot but it goes in cycles she’ll keep all her food down for weeks then she’ll go into a week long cycle of puking normally there’s a cause, she’s teething, she’s congested, allergy season, she got moved too quickly after being fed, was too active while getting her feed etc. but other times like this week it’s none of that and I have to sit her and struggle to find the problem and fix it so we can get her to keep her food down and I just want to pull my hair out. My husband gets pissed off when she pukes so that doesn’t help (he never does anything bad to us he just storms out to the garage), I fully believe he is also suffering from PTSD but he won’t get on the medication to help him. Anyhow this just plain old sucks and the day she eats orally full time consistently I swear to God I’m going to down a bottle of wine in celebration and then pass out on the kitchen floor because I don’t drink. lol
In the end Katie is still getting the calories she needs, so she isn’t losing weight but my god this is beyond frustrating and I wish that she didn’t have to go through all this crap.
My god do I ever hate depression. I was doing so well for so long, I was off the depression meds for over a year then out of nowhere “hello darkness my old friend”. So now I’m waiting the 4-6 weeks for it to fully kick in and just having a hell of a day. It probably doesn’t help that I’ve forgotten to take my PTSD medication for the last few days. Nothing bad has happened. My daughter is being an absolute angel, the dog isn’t being annoying, and my husband is fine doing what he normally does playing video games. However I can just feel the anger and hate flow right out around me just coloring an otherwise beautiful spring day to just grey. If I had to sum up how I feel right at the moment it would be, I hate everything and everyone.
My husband tries to cheer me up and I just want to punch him in the face but then I also now if he didn’t try to cheer me up I’d still want to punch him in the face. By the way I have never punched anyone in the face, thought about it oh god yeah actually done it never. Currently the only person I don’t personally hate, is our daughter. Which I guess is progress but everyone else…..I want to give the middle finger salute. Whatever, fuck this day and fuck everything else too. Tomorrow will be another day and blah blah blah.
Two years ago today we were once again sitting in the surgery waiting room for the 5th time in 5 months. We waited with fear and with hope that everything would be alright. We waited for what seemed to be a lifetime when instead it was only 2 1/2 hours. We were both nervous about this surgery because it wasn’t like all the rest, all her previous surgeries were because it was an emergency or secondary surgeries to put her intestines back together. This surgery was a choice we made for the betterment of Katie’s life and we were both hoping we made the right decision not knowing how it would turn out. Making the decision to have Katie trached and having the g-tube put in was one of the hardest and easiest decisions we ever made for her in the NICU. It all happen so quickly, from noticing how much she was struggling to breath even doing the simplest of tasks to talking to the head nurse to talking to the doctor and saying yes we need to do this before this turns into an emergency. The whole decision making process happened within maybe 12 hours on a Sunday and the surgery was scheduled for the following Tuesday, April 21st 2015. So there we sat in the “kids section” of the waiting room with our two best friends in the world and waited and hoped for the best. The massive relief when her doctor came out and was smiling, I just can’t describe. He explained how the surgery went and how her vitals were and I think he’d understand that I don’t remember a word he said to us. All I knew was gratefulness and relief that she made it through yet another surgery intact.
The nurses brought her back to her room and got her all comfy, even though she was still out cold. I think we all sighed in relief that the surgery was over and her vitals looked great. We left for a bit to get lunch while she was recovering in her room being watched over by the nurses that we both love and trust, amazed we got through this day. We came back later in the night and just watched her sleep, if I remember right she was riding the ventilator (meaning she was letting the vent breath for her completely) but that was completely normal after surgery. So we went home for the night, I called a few times to check in on her, we got some sleep and the next day Mike went to work.
Now this is where my memory is a little bit fuzzy timeline wise. I went and saw Katie for a little bit the next day April 22nd 2015, I didn’t stay long because she was still heavily medicated and to be honest I was mentally and physically exhausted. Mike went to visit her after work and at about 7pm he came home and his face was white as a ghost. Something was wrong. He sat down next to me and we proceeded to have the worst talk possible.
Mike went in to see Katie and all her settings on her vent were topped out, same with her oxygen and she was not doing well at all, they put her on nitrogen because she was so swollen from the surgery and there was nothing more they could do for her, her sats were terrible and the doctor came in to have “the talk” with Mike, that we should prepare ourselves for the worse and that there was a possibility that Katie would not last the night. Mike stayed for as long as he could stand it and came home to tell me what the doctor told him. So I hugged my husband and told him it would be okay even though I had no idea if it would be or not but that’s what you do. I got dressed and put Mike to bed because he had been through enough that day without coming back up to the NICU with me, he asked me repeatedly if I would be okay without him there and I said repeatedly I would be just fine, I just wanted to be with Katie. (Stopping for the moment to say Mike was extremely brave during all this and everyone of us has a breaking point where they need a moment of rest and this was his, this in no way makes him weak this makes him human) Anyhow so I got him to rest and got up to the hospital as quickly as possible because if this was the end I needed and wanted to be with her.
I put all my stuff in the locker’s they provide you and washed my hands to the best of my abilities that way I wouldn’t be carrying in germs that could hurt her or the other babies in the pod worse. I went into her room and moved a chair to sit next to her crib and looked at this tiny person we created looking so fragile that I wanted to die but then the nurse who was on shift came in to talk to me and very shortly after the doctor as well. Almost as soon as Mike left, Katie started getting better. They were able to lower the settings on her oxygen and her vent and took her off the nitrogen and as I sat there for a few hours I got to witness my beautiful innocent daughter come back from the brink. I don’t put much stock in miracles but this was definitely a miracle in my eyes. I went into that room fully expecting to watch another one of our children die way before their time and instead I got to watch a miracle come to life. I stayed with her until 11pm when she was considered stable and came home and woke up Mike to tell him the news and the relief in our bedroom was almost visible. I barely slept that night and I don’t think Mike did either because we were afraid that we’d wake up to something terrible but by the next morning Katie had shocked us all by not only be stable but getting better and better through out the day. The first week or so was pretty scary with her being swollen and having a PICC line in her head but she kept fighting and getting better.
And she kept getting better every day until we were finally told she could come home which is roughly when we rejoined facebook, made our account a joint one so it would be easy for all the nurses, doctors, friends and family be able to find us and keep up with Katie’s progress. What a trip that has been, when you make the decision to pull the trigger to have the trach placed, you are so out of it with fear that you don’t retain half of what they are telling you. I know it was explained that this wouldn’t be a temporary thing or a lifetime thing but to be honest I didn’t properly grasp the road we were going to walk down. But that’s a story for another time but it’s also super long.
I decided to share this because of a few reasons. I feel like not enough of us parents share our stories and I understand why, it’s painful to relive these moments and there were definitely parts of this that I was tearing up through but still I want to spread the word because even though we know we aren’t alone it feels like we are. The only other people that understand are parents that have traveled the same road and we can try to make others understand but I think we all feel like they just don’t get it. My favorite thing I hear a lot is “I don’t know how you do it?” well I just do because I have to not because I’m some super strong person but because she needs me to be strong to keep it together to make sure she’s getting the best possible care, I have to advocate for Katie because if we don’t who will? Secondly maybe this insight into 24 hours of our lives will make you understand us better, why we are quiet, or angry, or jealous of other children or pregnant women, etc. Why one of us delves into video games and the other spends time reading history books just to escape for a moment. This is an event that not only scarred the both of us for life but also altered our personalities. Neither Mike and I are the same people we were before all of Katie’s surgeries and I think this one is the one that really changed us forever. Mostly for the good, some for the bad but as I look over at Katie watching “Sarah and Duck” chewing on her hand, I know in the end no matter how much therapy Mike and I both need, it was worth every single moment of sadness, doubt and fear.
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!