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Preemie Graduate

Scar Revision Success!

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Talk to the hand daddy!

Success! However it was one of the most frustrating, irritating and annoying days of this year so far. We got stuck in traffic on the way there, her surgery was scheduled for 11:30am yesterday we arrived and found a parking spot and got into the hospital 10 minutes late because of the huge traffic jam and we left an hour and half before the surgery!!! Waited in the waiting room forever, they finally come back and grab us three to go to pre-op at about 1:30pm and then I made mention that I think her trach site had closed, which then prompts them to have to change the surgery plan because they were expecting to close the hole. So an misunderstanding happens between me and the man getting his face shoved in in the photo above because now it’s more of a cosemetic surgery isn’t necessary but we come to an understanding and decide to have the scar revision go through so we won’t have to do it when she’s older and can remember the surgery.

So I spent about an hour not talking to my other half but we both ended up apologizing to each others because we are adults and both were in the wrong. Meanwhile Katie’s in the OR and rocking it out and 45 minutes after the start we go in for the consulatation with the doctor who by the way is just amazing. I hugged her…twice and I don’t hug anyone other than Katie! Anyhow like I said the hole was closed which meant we did not have to stay the night which I was super glad about and we have one follow up and then ENT will be releasing her from their care! I’ll address that in a moment. She wakes up from sedation super pissed off because she’s in a strange room with a stranger and she sees me and grabs for me. I pick her up and there is still some wet blood at the site and then I had blood on me but I didn’t care because she was in my arms and even though she was screaming her head off, she was okay and fine.

Get the IV out of her hand, get her dressed, pop her in the stroller and we are off for our long walk to P5 parking lol (there was like no parking at C.S. Mott’s). Get her in the car and off her and I go……right into another traffic jam. Now here’s the thing every few minutes Katie is crying and I can’t do shit about it because well I’m on the freeway and need to drive so what is normally a 40 minute drive was an hour and 40 minutes of her crying off and on and me telling her “Katie soon we will be home and these cars will get out of my way” which well they didn’t lol but we got home a little after 5pm and I put her in her high chair put on some “Sarah and Duck” and she was just as happy as a clam. Got to finally feed her for the first time that day and she just was so chill all night. She stayed up later than normal but once she fell asleep she was out for the night and I only had to give her Tyenol twice. Which while I write this the little miss is napping.

This morning I woke up to even louder babbling and I go into her room and she gives me this huge smile and we get our day started and she’s acting like nothing has happened. She hasn’t been messing with the site so far so thank god for that and she’s just so happy and it warms my heart.

On the follow up appointment I was talking about earlier I want to say something seperate for it. Since April 21st 2015 we have been dealing with her having a trach, being attached to a ventilator, having home nurses, no privacy, more than our fair share of doctors appointments, RSV shots, trach changes, suctioning, two emergency trach changes, one time having to use the ambubag to get the mucus plug out, the weaning off oxygen, weaning off the breathe rate, weaning off the pressure, weaned off the vent completely, her wearing a HME (humidity moisture exchange valve), capped off, decannulation, and finally the scar revision. The best part of the follow up appointment (July 20th) is this it will finally close the chapter on the whole trach saga. All the stress, all the worries, all the invasive tests and procedures and my god it’s been tiring but so damn worth every moment.

To anyone and everyone that ever reads this, thank you for taking the time out of your day to read about my little miss and if you are currently going through anything trach related or preemie related please don’t hestitate to send me a message or ask questions because I’d be more than happy to help anyone on this road. It’s rocky and unsteady but don’t worry everyone in the preemie community will catch you when you fall. I hope everyone has a great weekend!

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A week away

A week from now assuming Katie is healthy and everything she will go in for her scar revision procedure or surgery if you so prefer to call it that. It’s only supposed to take an hour and they will close the trach site if it’s still open (I can’t tell the little miss won’t let me see!) and make the scar look prettier. I’m not sure what all is going to happen but the little I do know is it isn’t a serious procedure because they will only be keeping her for 23 hours overnight so we won’t be fully admitted into the hospital.

I’m definitely nervous because well they are going to be putting her under even if it’s for a short time and the fact that the last week she’s been having allergy issues so I’m hoping those clear up like now so it doesn’t get delayed. C.S. Mott is super cautious about this kind of stuff with reason. I’m just super glad that she’s getting better. While I am still suffering from this bad ass sinus infection and luckily I’m not contagious.

On another note I play “Sid the Science Kid” for Katie when she’s getting a g-tube feed and every time they sing at the beginning she’ll look over at me like “hey you going to sing mommy or what?” I may have accidentally trained her with all the singing I do with her. Also I’m super excited because one of her former “podmates” at the NICU joined the naked neck club yesterday, so no more trach for her! So all in all very good things are happening even if I’m coughing up a damn lung!

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I’m watching you monkey mirror! 

A open letter to Katie

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Katie,

Today marks the 2nd anniversary of you coming home from your 225 day stay in NICU and I wanted to take a moment today to write a letter to you that I hope I expand on every year until you’re old enough to give them all to you.

I hope I have been a good mom to you and if I have messed up hopefully it was nothing major and just small things like making you mad because I wouldn’t let you go to a party or something like that. I really hope I do right by you and the reason I’m writing this letter is to tell you how much I love you and how proud I am of you. By now you’ve probably heard many stories about your NICU stay and the struggles during your baby/toddler years and maybe you have some memories of outpatient therapists or specialists or maybe you don’t. Right now I’m not sure where the road is leading us but I do know I am so proud of everything you do.

I’ve loved you and been proud of you since the day you were born and I know I definitely loved you from the moment I knew of your existence. I’m sure we won’t always see eye to eye but please know that every moment of your life I have cherished. You have always been wanted and always been loved. I will always be proud of you and love you no matter what. You have been through so much at such a young age and in such a short time and I can’t imagine loving anyone as much as I love you. Every new thing you do thrills me even if it’s something as simple as a smile or one step forward or one word spoken. We are incredibly lucky to have such an amazing daughter and I don’t know right now who you are going to turn out to be or where your road in life will take you but I do know no matter what, I will always love you for who you are. Your dad jokes he will disown you if you go to OSU but don’t worry he’s just joking because you’re amazing and you have both of us wrapped around your finger.

I’m really hoping that we don’t end up with a pony in the backyard and I hope we give you the space and room you need to grow and thrive and find yourself. I really hope I’m not too overprotective and let you be you and not wrap you up in bubble wrap to keep you safe and I really hope you are proud of me too. Because you are literally the best thing I have ever done in my entire life and I really really hope I haven’t let you down. I love you so much Katie and I’m sure I don’t show it enough but I hope I tell you how much I love you and how proud I am of who you have grown into. Katie, you have made my life such a joy and I hope I do the same for you in return.

I hope to keep this up writing you letters every year on this day and you already know about the many holiday cards I’ve written in by now and of course the hand written journals that talk about your childhood. You have your blanket over your head right now so I need to go take that off your head. I love you Katie and always will.

 

love,

Mom

The show must go on……again

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Katie loves her green ball!

Today was our first appointment with Katie’s new PMR doctor (Physical Medicine doctor) and it was definitely an interesting appointment for a few reasons. First off apparently my daughter has a bias against white haired men with a white beard so I’m not really sure how much she’s going to love meeting Santa for the first time this year. I imagine lots of screaming, because that’s what she did the entire appointment. She’d stop for a moment look to see if he was still there and start screaming again. So I may be slightly deaf today in my left ear but whatever. Wooo parenthood!

So the meat and potatoes of the appointment is this, he has no idea why Katie is so behind developmentally, meaning physical wise. She doesn’t crawl, she doesn’t walk however she scoots in circles when she wants to. Personally I feel it’s because she’s only really been able to do PT for the last almost 6 months but I’m not a doctor and that’s why we take her to a specialist. Anyhow he said she’s a mixed toned patient and that he wants to order x-rays of her spine and hips to rule out scoliosis which actually does run on my side of the family. He wants her to have a MRI done after her 3rd birthday, which I’ve agreed to. Lastly he starts talking about her face, how her ears are shaped, that she has a weak chin whereas I have a strong chin and finally her eye shape and set and says he would like her to have genetic testing done. Part of me is like “FUCK, I have to tell my crazy husband this” another part is like “wait she has my eye shape and set, do I have something genetically wrong with me?” a part of me is completely calm and the last part of me is internally screaming. We talked calmly about it and he mentioned how pleased he was with the progress she’s making in therapies and that he’ll see us back in September so obviously it’s not an emergency situation. I get the scripts and leave.

I get my sweet little girl into her car seat, I start driving and the freaked out part of me comes to a head. I have a disturbing ability to push that shit down and stay calm with the doctor. The entire time I’m thinking oh my god what if it’s genetic, is this my fault? Because as parents we sure do love to blame ourselves for anything and everything. Wooo parenthood. I’m thinking shit I have to call my husband and he’s going to flip his lid and go into a mental spiral where Katie will never be normal, living with us her entire life and our retirement savings will go to her care after we are dead. (He tends to freak the fuck out and jumps ahead to basically a dystopian future, it’s super annoying). So instead I turn on Queen’s “The show must go on” play it 3 times cry a little while I’m driving on the freeway. I dry my tears and pull myself together, take a deep breath and realize I am being silly.

When she gets the testing done only two things could possibly happen it shows up with something so now we have a diagnosis that hopefully we can work with or it comes up clean and rules out a whole slew of genetic issues which would be a good thing. Either way it’s a good thing, either we will know what’s up or we will know for sure that she doesn’t have a whole bunch of genetic stuff.

At this point, I just want answers and if there is something wrong, so what, we will deal just as we have been for the last two and a half years. Will it be harder? sure but isn’t that what life is all about a whole lot of sadness and hardship for a moment of happiness. Katie’s happy no matter what’s going on, whether its genetic or she’s building up strength physically, Katie is happy. She’s healthy, she’s thriving and she’s beautiful just the way she is.

So I’ll leave you with this on this cloudy, gloomy Friday, as Queen’s lyrics go “I’ll face it with a grin, I’m never giving in, the show must go on!”

 

I hope you all have a lovely Memorial Day weekend, I imagine I’ll probably post something about Memorial Day after I’ve gotten some sleep.

“You have to F-ing poop” TMI warning

Obviously from the title you know where this is going lol also that it is probably TMI!

So when you’re little one goes through an intestinal surgery whether it’s one or multiple ones you’ll come across a few bumps in the road especially when you add a G-tube into the mix. Depending on the child you’ll have to deal with either diarrhea or constipation. Well poor little Katie suffers for the later from time to time.

Normally she’s pretty regular but when she’s not it quickly becomes a nightmare because well what doesn’t come out that end comes up in another way….vomit! So the two days I’ve been giving her prune juice, nothing so today I upped the stakes and gave her pear juice so hopefully that does the trick. I’m kind of hoping it happens within the next hour because her dad will be home and we have a deal, he must change one diaper a day and I find it hilarious when the one diaper a day is the number 2 one. He gets so dramatic, I should video it one day and post it up because it’s honestly the funniest best thing ever and like the evil EVIL woman that I am I so enjoy his mental anguish when he is changing her diaper.

So moral of the story is I don’t need the book “Go the Fuck to sleep”, I need a book called “You need to fucking poop”. Happy weekend ❤

Sometimes this plain old sucks

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.

The day the world almost ended

    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.
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She’s definitely worth it

Happy Easter!

Happy Easter from my little annoyed one to your family!!!

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You can shove these bunny ears where the sun doesn’t shine woman! 

Long time No post

IMG_8734Katie’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!

 

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