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eekk everyone has germs!

Month

July 2016

Working towards tomorrow

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Tupperware is still the shit

Today was Katie’s speech pathologist appointment and I would love to say it went well but unfortunately sometimes that isn’t the case. The speech pathologist spent an hour with her and determined that she is developmental wise 9 months when it comes to speech. It felt like a kick to the gut and I was really upset about it but my mother in law said something that is very true and I’m going to post what she said in an email to me and my husband. So to all the preemie parents out there, I think this will hold true for you as well.

Please don’t let the speech therapist’s assessment get you down about Katie. I know it was hard to hear. But for one thing, it is an educated guess. The therapist is basing this on what she observed in one hour of knowing Katie. But more importantly, if we assume Katie is at the 9 month level, it is just a statement of where she is at this time but not indicative of how far she will go. The therapist did not say Katie won’t improve. Yes, the general “rule” is that a preemie will catch up by age two to others her age but very very few have gone through what Katie has gone through. Maybe Katie won’t catch up until she is 5. If any doctor or therapist ever tries to give you a negative prognosis about how far she will progress, don’t listen.

I feel very positive about Katie. She shows an interest in things and watches us closely. Katie certainly watches me intently when I sing to her. I think she might be thinking “oh, please stop” but my point is that she is paying attention. As I told Sam, you should think of Katie as you would a stroke patient….she just needs more help to get to where she needs to go. A hard task but not impossible.

You are doing a great job…keep it up. She has improved so much in the last month. Keep talking, reading, playing, singing to her…all the things one does with every baby but a little more intense. At this time, she can’t do it on her own but needs to be shown.

So accept where she is right now but keep your focus on where she is going.

Much love, Mom

I hope these words comfort you as well as it comforted us because sometimes this just plain old sucks. 

Inside the mind of one Trach Mom

I think one of the hardest thing about having a baby or child on a ventilator is the jealously and envy we have when we see “normal” children. The kids that were full term and had no issues. In the trach parent community we all have friends with kids and we see them either on Facebook or in real life hitting all their milestones with no problem and I know I find that hard to watch. That doesn’t mean I hate their babies or have resentment towards them just that I’m envious of a life that I most likely will never get to live. Katie most likely will be my only child, so I most likely will never have the joy of carrying to full term. To be able to breast feed my child, watch them hit their milestones on time or before time. There is so much we have missed because she was born so damn early. We missed out on a normal babyhood and sometimes that breaks my heart. I got to see my nephew when he was a little under 9 months and this kid is crawling all over the place while I’m struggling to get her to just creep around to get to crawling. He pulls himself up into a standing position (which btw is 3 months ahead of time the little cute thing). He is currently taking his first steps at 10 months old which Katie isn’t doing yet. She’s so behind because of 7.5 months of being in NICU without being able to do anything because either she was sick or too little to do any development stuff. We didn’t even get to start doing any OT/PT until she was 6 months old 3 months corrected. I know she’ll get there but I have to say looking at everyone else’s children makes me feel jealous of their child and of their life.
Having said that I am extremely proud of Katie’s progress, she has come so far from where she was. She’s healthier, happier, and absolutely amazing. This little less than 20 pounder has gone through 5 surgeries, 6 different procedures and has come close to not making it a few times during the NICU stay but she’s still here. That’s why I believe she is my hero. The theme for her 2nd birthday party is Supergirl which I find fitting because she really is a super girl. She won’t have the trach removed by her birthday but she’ll be off the vent off 24/7 and that will be absolutely awesome. I can’t wait to just be able to hold her and be with her without worrying about having to carry all the machinery with us anymore. I want her to be like everyone else and just have a life that is full of joy and not so filled with doctor’s appointments.
This is the most difficult road I’ve ever traveled and I’m looking forward to getting to the end of the road and getting to just be normal for the first time in years. In the last four years we have lost a son that we badly wanted at 5 months pregnant and then the years of depression and then followed by the pregnancy with Katie and the cerclage placed, hoping an praying that she would stay inside only to have her be born at 26 weeks, the ensuing 225 days in the NICU, the trach and g-tube place, her coming home, the nurses and the privacy you lose with having nurses. The appointments, the stress, the trying to keep yourself together. Sometimes it’s just too much and there are times where I would love nothing better than to curl up in a ball and just cry. But then I pick myself up again and go about my day. Do the best I can possibly do for my little girl because this process definitely sucks but she’s what matters. One day we will get to have a normal life and that day is worth waiting for. She was worth waiting for.

 

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Tupperware is the shit.

Katie’s arch-nemesis

Katie is now 21 months actual, 18 months corrected and she already has an arch-nemesis….the vacuum. Anytime I take it out she losing her damn baby mind. Full on sobbing and her heart rate gets up to almost 200 bpm. It’s insane lol. So I get to slowly introduce her to the vacuum unlike what my sweet husband did today. He put the damn thing next to her and she freaked out and stayed that way until 10 minutes after he moved the vacuum out of the room. Actually she’s still on and off freaking out. So I’m going to go comfort her. I hope everyone has a lovely weekend!

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Not only do I clean your house, I will also terrorize your baby! Wahahahahhahahahhahahahahahahahahahahaha

 

Politics: The oil and vinegar of the nation

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I can’t believe he’s the Republican nominee but hey yay cool meme

 

I originally was going to post this on Facebook but it got too long so instead I’m posting it here.

This is going to be extremely long so I apologize in advance. Most of my family on my side are voting Trump (I am not a Trump supporter) and so far I’ve been threatened to have my ass beat if I vote Hillary and been told I’m an idiot. So here’s the deal my man Bernie is out so I’m not talking politics anymore (other than meme’s making fun of Trump’s hair because that’s funny) nor am I going to tell anyone who I’m voting or not voting for. This I will say I will vote in November and I will vote for who in my humble opinion is the best person for the job. Everyone that knows me knows I’m a bleeding heart liberal and lean far left except I’m conservative in the financial sense. Take this as you will, just know I’m not going to argue, fight, or be violent for your choice in who you are voting for. This country was fought over to have the ability to choose who you want to represent our country. Some of us didn’t get to vote until the early 1900’s others not until really the 1960’s. There is still issues in some states on voter suppression to this day.

So I ask everyone just to be kind to each other even if you don’t like their political choices. Love one another and accept that everyone does not think like you or believe in everything you believe in. With the current landscape in our country we are too busy fighting and in some cases killing each other to realize that we are all in this together. Whether it’s Republicans vs. Democrats, white people vs. people of color, Religious vs. non religious or anything else I haven’t named. We need to realize as a country that their are problems that need to be fixed and it’s not going to get fixed overnight and it will take all of us to make a change or at least a huge portion of us. No matter who you vote for in November remember that the President doesn’t have all the power and no matter what they promise things will not get better overnight or in the first four years or even eight of the presidency.

I know at this point most people are frustrated and angry about the constant violence that is happening almost every single week. I don’t think I’ve gone more than a few days in the last month and a half without seeing the black background on CNN. Meaning there has been another mass killing or tragedy. I know I feel sick to my stomach thinking this is the world that I’m trying to raise my little girl in. So what are the answers? How do we stop this from constantly happening? There is no clear answers but I know we need to stop the infighting between groups of people and band together to make a change and not in the future but right now.

I can say one thing for sure neither Trump or Clinton is a band-aid. They won’t get elected and everything is just fixed. It will take time and effort and a huge group of people trying to make the world a better, safe place. I hope one day this will happen and I hope I get to witness it and be a part of a change for a better world. I know I went somewhat on a rant but I will leave you with this. No matter who you vote for, no matter what color your skin is, no matter what your religious affiliation is just know that I love you.

Weaning takes forever!

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My foot is the shit!

I love love love the vent clinic Katie goes to. However I hate that I only get information piecemeal. So for the last few months I was under the impression her trach would come out by the end of the summer but apparently I didn’t have all the information and I was absolutely 100% WRONG. I’m only guessing but it sounds like it will be more like December or maybe not even until next spring at worse.

There is so much more to the weaning process then I was previously aware of. So we have started using a mist collar during her naps so we are still weaning at a decent clip but we also have to have a bronchoscopy done to make sure her bronchial tubes haven’t narrowed which can happen when a baby is on a trach. I’ve scheduled that for September 21st. So hopefully everything is okay because if it is then the ENT doctor can tell the vent clinic the okay to cap her trach which is the (I think) last step before the trach is actually removed. If it has narrowed she will have to have the tube widened with surgery which I really hope isn’t the case but from my understanding it’s not a major major surgery and honestly it’s better to know now then later right? Either way she’s doing great and by the time the 21st of September rolls around she’ll be off the vent full time but will still have the trach.

I’m currently looking at the silver linings of this all. She’s doing awesome. Now I can have her birthday party without worry about surgery being in the way. I’m just happy she’s doing so well with all of this. She’s such a trooper. I can’t wait to give her the baby drums I got her for her birthday. Yes drums because only I’m allowed to torture myself thank you very much!!!

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The drums in question

Listen and you will hear

First off I’d like to say I love my mother. She’s made her mistakes and she definitely tries her best and is trying to be a better person.

When I was 8 years old my bio dad walked back into my life after four years of not being there. (that is a very long story and this is long as is) This is where it all started. For the next 3 almost 4 years they fought for custody of me and it was ugly for everyone. They both were so busy bashing each other that they didn’t take a moment to realize what they were doing to their own child. When I was almost 12 the judge gave me the decision on who I wanted to go live with and I chose my dad over my mom. Which to this day I’m positive she hasn’t forgiven me for. Reason I think this is because she’ll occasionally over the years mention very bitterly how I chose him over her. She’s never given me the chance to tell her why.

Today I was on the phone with her and she brought up the custody battle and how angry she was that the court made us go to a psychotherapist. The reasoning from the courts was because I stopped talking and became very withdrawn and they wanted to get to the bottom over it or at least that’s what the shrink told me. I remember hating the sessions all the intrusive questions, questions of abuse etc etc.

Anyhow I digress, her bringing this up reminded me of all the times I was pitted in the middle between them. Somewhere I should have never been. I wanted to tell her why I chose him over her but she just talked over me and threatened to hang up on me. Which I find disrespectful and unfair. How can someone bring up a topic and the moment the other person wants to talk about it they just ignore them and threaten to hang up.

I spoke with my husband and he said something that I think might be right. That she didn’t want to hear what I had to say because it’s too painful for her because she doesn’t like the person she was and doesn’t want to be reminded of who she was and that maybe she still doesn’t like who she is. So instead of facing it she’s figuratively sticking her head in the sand while singing la la la la.

So instead I tell the internet what I wanted to tell her.

I didn’t choose him over you because he was the better parent. I chose him because I wanted to stop the fighting and wanted to be a normal kid without my parents tearing each other to pieces in front of me. I was sick and tired of being a chess piece on the board. I chose him because he didn’t have rules where you did and I was 11 and wanted to do what I wanted to do. Most of all I chose him because I knew I could have a normal life because he wasn’t interested in actually raising me and he would pawn me off on his parents which was my best chance at having a good normal life. 

"I don't care which parent I get as long as it's the same one that gets the Playstation."
Making light of a serious situation

Which just in case anyone was wondering I made the right choice. My grandparents raised me well and raised me to be compassionate, giving and loving. They taught me my love for reading and having an endless curiosity. They gave me all the love a young girl could ever hope for and most of all they gave me what I really really wanted and needed, a normal life.

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Schadenfreude

A little background so that this makes sense. I’ve been with my husband for a little over 10 years and the ex I’m going to talk about is from like 11 years ago. Okay now this will make sense…..I think.

My ex and I were together on and off for almost 5 years. We would break up and get back together again or more accurately he would break up with me and then come back as soon as some other girl wasn’t as good to him as I was. Anyhow he was kind of a douche, though I’ll admit he was a funny and handsome douche. We meet through my lovely cousin whom I am friends with on Facebook. Anyhow for some reason the other day I decided to look at his Facebook page and boy did I ever feel like the winner in the ex game.

I almost never think of this guy but I was delighted, absolutely delighted in how bad he looks now. He looks much older now and isn’t so handsome anymore and has gained some weight and I was just absolutely thrilled by this. Which btw is terrible. I am a terrible terrible woman. lol I told my husband about this and apparently I was experiencing a schadenfreude moment (deriving pleasure from someone else’s misfortune). It literally made my day and I’m slightly concerned that I may be more evil then I previously thought.

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Apparently this is my spirit animal

Mistakes

We all make mistakes. I’ve made plenty in my 32 years on this planet. Tiny mistakes, moderate mistakes and luckily only a few huge mistakes. I look back sometimes at the things I have done in my past and feel without those mistakes I wouldn’t be the person I am today. Do I regret the mistakes I’ve made? Sure, who doesn’t but it does no good to constantly dwell on the mistakes I’ve made. Instead I choose to occasionally look back and remind myself not to make the same mistakes again.

I don’t think of myself as a bad person but I’ve definitely have done bad things in my life. Nothing like murder or terrible like that but still I’m not perfect. Honestly I don’t want to be perfect. I don’t think it’s possible to be perfect and I’m not going to strive ever to be perfect. I just want to be the best person I can be.

She’s my hero

I count myself very lucky. Even through the last two years, I still feel lucky. From the two months of strict bed rest to the the 225 days in the NICU to the over a year journey of Katie being on a ventilator, still I feel lucky. There were so many times things could have gone wrong, where we could have lost this precious little ball of fists but she made it through. I consider that lucky. Now that we are about half way through weaning I’m getting a chance to do more things with her, such as walk around outside without her hooked to anything and getting to take her out to other people’s houses. It’s been awesome and frustrating at the same time. The weaning process is fast but at the same time slow because there is different stages you have to do before she’s off the trach permanently. Even through all this I still feel lucky. She’s doing better than I expected and kicking ass and taking names. 🙂 Part of the reason I haven’t been posting much is with her being off the vent all day now, we actually get a chance to be somewhat normal.

I started blogging because I thought it would help with my mental health and also so other NICU parents or parents of a preemie can see they aren’t alone but slowly it’s been morphing into more of my thoughts and a celebration of Katie’s life and progress.  I hope I can keep this up because one day I’d like her to see what I’ve written about her and know how much she’s loved and how much she’s changed me. She is my super hero. IMG_4692.JPG

 

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I love my cups lady!

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