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February 2016

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Katie and I in the NICU she’s about 4 months here.

We spent 7 1/2 months in the NICU. That’s 7 1/2 months of traveling back and forth to the hospital, over half a year eating crap food because we didn’t have time to cook. 7 1/2 months of no sense of normalcy, no alone time, no time to actually enjoy having a child. When they finally told us Katie could go home it was the best day ever. Not having her at home for over half a year almost killed my husband and me. Not to mention the obvious stresses it puts on your marriage. We are completely different people today from the experience and I’m really not sure I ever want to have another baby just because of the risk of going back to the NICU only this time with having a child at home and the hospital.

This is a rundown of our time in the NICU. Wake up, call the NICU to check on your baby, let the dog out, get dressed, go up to the hospital, spend as much time as you can at the hospital, hold them if they are healthy enough to be held, if they aren’t stare hopelessly at their incubator, think of why you are in this situation, bemoan your shitty body for not holding in the baby until term, cry inwardly, talk with the nurses, stare at the incubator some more or hopefully be able to hold your baby, talk with whomever is doing morning rounds, watch the baby sleep, hope today will be better, get hungry, get lunch, go home let the dog out again, eat lunch, talk with your spouse on the phone about the morning with the baby, go back to the hospital, repeat the morning routine, talk to the doctors on shift afternoon rounds, go home for a little bit, husband gets home, go back to the hospital watch them hold the baby or stare hopelessly at the incubator, night nurse shift change, listen to the day nurse give updates to the night nurse, go get extremely late dinner, go home, call the nurse a few times to check up on the baby, go to bed if you can, sleep, wake up, repeat.

Day after day, month after month, try not to lose your mind, lose your mind anyhow, start seeing a therapist, be put on a lot of medication, postpartum, anxiety disorder, depressive disorder, try to feel a bit normal, fail, go through all five steps of grief over and over again, try to be strong for your baby and husband, try not to be resentful of being the strong one, fail, fall apart, bring yourself back together, bring you and your husband back together, make decisions for your baby’s health, hope not to make the wrong choice, make the right choices, baby starts getting better, six different surgeries, trach and G-tube placed, baby gets deathly ill, try not to collapse, fail, baby gets better miraculously, she keeps getting better, hope, get told she gets to go home, cry, learn all the stuff you need to know so she can come home, wait, then the day come and you get to bring her home finally.  I know this rambles but as much as those 7 1/2 months sucked it all led to this. Home…

 

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One of her amazing NICU nurses Angie and Katie on the day she came home. 
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Katie today…literally

Dear Monday I’m so over you.

There are times when I really really really really hate Katie’s nursing company. The nurses are great but omg the office is the worst. How many times they haven’t called me to tell me I wouldn’t have a nurse is ridiculous. If it wasn’t for Katie’s wonderful nurses I’d have no idea when one of them is taking a day off or are sick or whatever.

It’s been one of those days that you really wish you could pull the covers back over your head and start the day over again because obviously this take is a mess. Had to change Katie’s trach twice because I put the wrong size in, woke up to a sick puking husband, the physical therapist accidentally broke a frame and glass was all over my entry way then to put the cherry on the top Katie pukes all over me. So I think I’m over Monday. It’s been horrid and I’m hoping it’s not a forecast of how the week is going to go because if it is I’m going back to sleep. Oh and I almost forgot at the moment we don’t have a nurse for tonight…..at least Katie is super happy.

 

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Another one bites the dust….

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And another one gone, 

and another one gone
Another one bites the dust
Hey, I’m gonna get you too
Another one bites the dust

 

Katie’s last and final helmet appointment today. She graduated from having to have a helmet. So Thank you to Nicole from Wrights & Filippis you were amazing even though I am not the easiest mom to handle because I really really like seeing her head. It’s a pretty cranium with lots of hair.

This month has been great so far when it comes to Katie’s medical stuff. Off the Sildenafil aka baby viagra for her heart. Fourth clean scan for pulmonary hypertension yay! and no sign of a heart murmur which is just fantastic. Today she finally got to not need a helmet anymore. Now I’m just waiting for Wednesday, her U of M pulmonologist to see what they are going to do next. I’m really hoping they lower her PEEP from 7 to 5 or switch her to CPAP setting or maybe even a trial period off the ventilator. We will see. And I will update.

She’s such an awesome little person I can’t wait until she can walk, run, crawl, break stuff. I just can’t wait. (Excuse me while I bolt down everything in my house)

I’m going to break all your stuff!

 

Happy Valentine’s Day

Katie was very generous today for Valentine’s Day and only puked on me twice today. .

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I like sharing my food then passing out afterwards

My sweet husband gave me the day off which was a lovely idea that the universe was not on board for. I went out shopping almost got smacked into by some lady at the 1-75 interchange, went to get a fountain pop they give me the wrong one, and then to top it off I’m in the store and a lady quite literally walks right into me. So taking the universe’s advice I went home and took a nap. All in all though with everything that has gone on this week it still was a great Valentine’s Day because I am truly blessed to have such an amazing kind of spaced out husband and an absolutely amazing silly daughter. She laughs like a crazy person whenever I stick my tongue out at her. She’s just such a happy baby. More people need to be like her. She’s gone through numerous surgeries, so many medications and enough x-rays I’m slightly surprised that she doesn’t glow and yet every day she wakes up with a smile and a laugh and then strangles the crap out of her monkey blanket.

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What the monkey had it coming!

Right now she’s happily asleep and I’m sitting here trying to figure out what to do with myself. There are things I could do but that sounds tedious and involves me moving from out under my really warm blanket. So Happy Valentine’s Day to you and yours and maybe I’ll actually find some direction for this blog because I feel like I’m definitely aimless at the moment.

 

The blackest shade of mourning have the most silver of linings

*Changing names to protect identities* 

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My dear friend and I were talking tonight about her dad who had a stroke last year. How much he’s changed, her mother’s reaction as well as her own feelings on the subject. This woman who we will call Hope is quite literally the best person I have ever know. Her life hasn’t been perfect and hasn’t always been easy but she is a survivor in more ways than she knows.

Early last year Hope’s father who we will call Rob had a pretty big stroke. I don’t know all the details but it has changed him quite a lot. Hope has done her best to help him when she can even while still taking care of herself, husband, dog, house and work. It hasn’t been easy on her and I wish I could do more to help. Anyhow we were talking about Rob tonight and I think we both realized something that hadn’t been said out loud. Hope is in mourning. 

The mourning of the man he used to be, the conversations they used to have, the independent and strong man he once was. I know Rob socially and he is definitely not the same person I met a few years ago and it has affected everyone around him in one way or another. His wife is going through the anger stage and that makes it difficult for Hope because she just wants the best for her dad. *Mary and Rob have always been very independent people that lived exciting lives and now Rob needs Mary to help him and it’s not something she’s used to and her reaction is anger. I wish she would talk to someone because it is definitely not an easy task to take care of anyone young or old that have special needs or that needs you that much. It’s a struggle to keep your head above water while pulling this person you love to safety with no life boat in sight. 

Anyhow this is really about Hope and I hope she reads this soon. You are an amazing person, woman, daughter, wife, and friend that would give the shirt off your back so someone else won’t feel cold. This is not easy and it will not get easier overnight but I’m glad we got to the point that you know you are mourning that means you are one step away from accepting the new Rob. I will be here for you every step of the way that I can. Right now everything seems dark but I promise you that there is a silver lining in all this hell. You get to re-know your dad in a way that most people don’t get to. Learn his new likes and dislikes and roll with it. You both get a second chance to get closer together which in the end will be the best thing for you both. It may take time and effort and frustrations but you will always have your dad even if he is a new version of him. 

Hope this is not the end……it’s a new beginning

Walk quietly and carry a big stick

Some weeks are fantastic and some weeks are just difficult to handle. This is one of those weeks. Katie is doing amazingly and has gotten so strong that her new hobby is to tug on her G-tube so she yanked it so hard this last weekend she bruised herself so I’ve been wrapping her up like a little mummy to keep her from pulling on it. It’s almost healed now so yay!!!! On to the next thing eh?

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Guess who is giving Mommy gray hair!

 

Why a blog you ask?????

Good question. It’s for my mental health. Katie is now 15 months old 12 months corrected and we are under quarantine hence the title that I just realized is misspelled in the URL. Oh well it wouldn’t be me if there wasn’t something missing or wrong. Anyhow because Katie is on a ventilator and immune suppressed we can pretty much go nowhere and only healthy people are allowed to visit. Which during the winter that’s not a lot of people. Outside of the people that come weekly for Katie’s therapy or nurses the only other time I see another adult during the week is when my husband comes home. So that means that my social skills have gone to shit because Katie can’t hold conversations and neither can the dog. If the dog starts talking to me I know I’ve gone around the bend.

I spend a lot of my time isolated from the world and you can definitely lose your mind when you have no one to talk to. It’s like solitary confinement only I have a baby that poops, pukes and pees on me and occasionally will bitch slap me across my face.

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Take that daddy!

It’s difficult to keep your sanity because most people have jobs and work during the day so it’s not exactly easy to have any adult conversation during the week. So this is why I started this blog to keep myself together even if I’m only talking to myself and no one ever reads this but me at least I’m not holing it up inside to develop into a brain tumor later in life.

Jenny Lawson I adore you

Quite by accident I found this lovely author and blogger Jenny Lawson. I wasn’t feeling practically good and depression was getting the best of me so I figured I’d buy a book and I ended up buying “Furiously Happy” by Jenny Lawson. To be honest I had never heard about her before then and the main reason I got it was because of the ridiculous looking raccoon on the front cover. It looked just so something that I wanted no needed to have this book in my collection.

So I waited impatiently for the book to arrive via Amazon and much to my delight I loved everything about it. She really describes depression and anxiety in such a way that even if you never suffered from it yourself you would totally understand it. Also she’s hilarious and makes being slightly off amusing and charming. I ended up also buying her other book “Let’s Pretend This Never Happened” which was equally a great book.

There is only one downside to these books it may make you develop the urge to buy ethically taxidermied animals to live in your Florida room. I almost got this perfectly awesome stuffed crocodile for my house but unfortunately someone bought George before I could. Yes I named him and you can judge me all you want but George is a good name.

She also has a lovely blog that I frequent which is thebloggess.com. Check her books or blog out I promise you won’t be disappointed.

P.S. This featured picture is for you Mrs. Lawson you are a gem of a woman

The worst day of the NICU

As I mentioned in a previous post Katie’s trach was placed in late April of 2015. The surgery went well and all seemed well. Then it didn’t for the next 24 hours we weren’t sure she was going to make it. She was on the highest settings and on so much medication that it could off a horse. I never in my entire 32 years on this planet felt so helpless looking at her in her crib unconscious and so sick. My husband couldn’t bare to be at the hospital because we got to have “the talk” with the doctor that maybe she might not make it through the night. I learned much later that a lot of the nurses, respiratory therapists and everyone else didn’t have much hope that she would make it through the night either. Which is still a kick in the gut months and months later.

I sat next to her crib for as long as I could just reading to her and praying to whoever or whatever would ensure her survival. Eventually I went home and wasn’t going to go back in that night because I was so exhausted but I kept thinking this might be it, this might be the last time I see my little girl and I need to be with her. I arrived back at the hospital and she started getting better. Her heart rate stabilized, her oxygen need went closer to normal and they were able to lower the settings on her ventilator. We literally went from this is it to oh my god she’s recovering. I’m not a religious woman but it was beyond a miracle and it still makes me tear up to think of it. Day by day she got better and better and before we knew it she was ready to come home. I’m so happy she’ll never remember any of this but I will and I will say I am not the person I used to be and it’s mostly for the better but you should see my medicine cabinet.

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