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My Struggle With PTSD

There has been many articles recently about mental health for parents and family members that have experienced NICU life, and all the bumps, drop, loop de loops that roller coaster has in store for everyone incolved. I would like to share my battle with PTSD post NICU, 3 and half years later.

My son was born 16 weeks early, and I was a worrier before this, but this experience has amplified my paranoia about anything and everything that was not in my control. My little Spud was born at 24 weeks and 2 days gestation, 11 inches 1 pound 12 oz, and loud. He annouced his presence with a meek but powerful squeak, almost like a newborn kitten, I learned later that it was rare for little ones that early to have a powerful entrance, so much so that the nurses held him unsure of what to do for a moment or two. 

Now, this part is mainly to explain where I came from to have you understand where I am now. We were in the NICU for 157 days total and 33 days in a childrens hospital, with 2 attempts at coming home before the third one stuck. We were sent home the first time just before his due date, and his Respiratory therapist came tonthe house the following morning and as she hooked him up to the pulse ox monitor he stopped breathing, turned grey and she preformed CPR on him while i was on the phone with 911 amd rounded up cats. She got him breathing and crying and back to the NICU we went, they kept us for 4 days, ran tests and came up with nothing, so they wrote it off as a one off situation and sent us home. As I drove him home I make sure he was mad and would cry the whole 15 minute drive home. You might see that as cruel, I saw that as a way to keep calm. That was the beginning of my spiral down, we got home. My husband and I gave our son his first bath at home, I swaddled him up, put a bum on him and fed him. I handed him to my husband to burp while I went to clean the bottles. Two minutes later my husband is yelling, I run and spring into action, I start CPR, got my husband to wrangle cats and call 911. I got him to burp, fart and whine but no gasp or full cry. The paramedics, who were the same group that were at our house 4 days prior, lifted me off my child and into the hall to start CPR with machines and oxygen masks. 

We were admitted for 34 days in the NICU and 33 in the children’s Hospital after this incident. I refused social work while in the NICU and hospital with my son. I did not want to focus on me, I wanted my son to come home and stay home and stay alive this time. I spent hours writing everything down, filling my sons medical binder with everything and anything. He was my focus 110%.

The third time he came home on oxygen, on a tank I had to bring around with me, so I became a hermit and only left if I had a helper, or to the doctors office alone. He was home before Christmas, and off oxygen by March, my husbands birthday, and I went to a happy routine with him until June. I had to put my son in daycare for 2 hours a day while I worked nights, and my husband worked days. 

Thats when my husband and family started noticing a slight problem, at work I would be overcome with a sence of panic and call my husband repeatedly until he would answer anc check on Spud, make sure he was breathing, make him put the phone up to his mouth so I could hear it. It wasn’t just once and a while, it was 1 to 3 times a night 5 nights in a row. My family doctor put my ativan while at work, but to use as needed, he also put me in touch with a family councillor who was the first person to tell me I may have NICU PTSD and put me in touch with a psychologist. 

I saw her once a week, we worked on talking and medications therapies that helped calm me down. This was from July till October, I was down to once a month visits. The end of October I found out we were pregnant with baby number 2. And I had to stop my medications, and up my therapy visits to try and remain normal. But in January, I lost my job and my coverage for therapy and my husbands coverage couldn’t cover it anymore. I panicked for most of my pregnancy, I had a full meltdown at 22 weeks and again at 24 weeks. I had it in my brain that something was going to go worng. I didn’t enjoy my pregnancy with my daughter, I didn’t feel the joy of finding out it was a girl, I didn’t feel happy shopping for clothes because it felt like something was going to go wrong. But nothing did, Princess Tally came into the world 6 days overdue at 8 lbs 14oz 22 inches long via c section because she had a big head like her dad. 

I didn’t enjoy my 4 day hospital stay, I refused to put her down, I made nurses watch her while I went to the bathroom if family wasn’t there. They made me meet with a social worker to help me get back on medications, which ment I could not breast feed. I had to do it, I had to make this sacrifice for my daughter, so I would have all my mental faculties for her, Spud and my husband. 

I manage my PTSD with medications to this day, and I still have good days and bad days where I pop an Ativan to get through the day, I struggle daily with it, there are nights I wake up 4 to 6 times a night and check both kids, I do not work. I stay at home and try to find some normalcy for my family, for me, I start back to counseling in 3 weeks. Its a battle, but I am willing to fight this, because I have something worth fighting for. 

– Ashton <3

Terrorism Hit Too Close To Home


This is Constable Mike Chernyk, and he is an amazing 11 year veteran of the Edmonton Police Service. You see on Sunday around 8 pm, he was doing a patrol walk around the football stadium, that was filled with people when a white Malibu blew through the sidewalk hitting him, launching him 15 feet in the air to land hard on the cement. The person who hit him, on purpose, gets out of the car flashing a knife scaring away people who were making sure the officer was ok, in some capacity, then proceeded to stab, cut, and slash the already wounded man. All this to get his gun, to get this police officers gun, to continue his plan for the evening. But, Constable Mike Chernyk fought him off, kept his gun safe radioed for help as the suspect ran off, the contable was taken to the hospital. The man hunt started.
Around 11 pm, a Uhaul was pulled over at a check point, they asked to see his licence and he matched the description of the suspect wanted in the constables assault. So the police officer called for back up, as he did so the Uhaul fled. Four police cars persued and pedestrians were struck by the Uhaul before it hit the curb and flipped on it side and the suspect was taken into custody. He has been charged with several different offences, but what the media points out several times in many different ways he was a Syrian Refugee. While I am angry at him for what he did, and how he ruined my safe bubble, I am angry at the people blaming all the people here who have actually come to be safe, to escape what is happening here, and Las Vegas. 

I am not belittling what happened in Las Vegas by any means, but this attack happened in my home. Where I grew up, where I am raising my 2 small children. This hurts my heart, and this man, Constable Mike Chernyk, is my hero. He is someone I wan my 3 year old son to meet, and this man is the reason why I know the old saying “Don’t let a few bad Apples spoil the whole batch.” With all the negativity around police, this is why I hold onto hope and let my son adore them and have them be something to strive for as he grows up. And this is also why, I will not allow this one man, who ruined my home and broke my heart, make me believe all refugees are like him. 

Constable Mike Chernyk, is home now, resting with bumps bruises and stitches. Two of the four pedestrians hit are home, the other two are in serious condition in hospital. No fatalities, my thoughts, and warm positivity goes to all the families effected here and in Las Vegas. 
Remember to Love everyone equally. 
-Ashton <3

Music Is My Fairy Tale

MUSIC IS MY FAIRY TALEI grew up in a house hold that always had music buzzing around. There was either someone playing a record ( you know those big black disk things around since the stone age?), someone (attempting to) play and instrument, or just someone singing a song they had stuck in their head. My brother could watch a Disney movie once and have every single song memorized by the end of it. My dad worked out of town and all my memories of him revolve around music in some manner, when he was home, whether it be dish cloth dew rags, pots and pan band practice to queen albums, or playing guess the song in 10 bars or less. My mom was a painter and at night I remember being all tucked into my bed and hear her classical music playing down the hall while she painted, and my brother and I drifted off to sleep.usic helped me become who I am in some manner of speaking, because when you are a kid you listen to everything your parents listen to, In my case that was a lot of old school country like Merle Haggard, George Jones and Patsy Cline, which I still listen to, to this day. But when I started school my friends introduced me to what their parents listened to and I loved that just as much as what my parents listened to, and I would ask my mom to buy me albums and CDs until I could get them myself with my baby sitting money. Then came the boy band faze of my life, but I was never ever picky when it came to bands and I bought it all and listened to it all. by 13 I had over 200 cassette tapes and 52 CDs, I still listened to what my parents had as well with A tracks, records and their CDs and Cassettes. There was never anything I didn’t like, and when I went through my rebelling faze I just started listening to Marilyn Manson, Eminem, and other “controversial” artists at the time (Can I hope my kids will do the same?).

To me there was a song to help me through everything, when my first friend committed suicide a country song came out at the same time called “How Do You Get That Lonely” by Blaine Larsen, and that helped me in a way, when my grandpa passed away I found comfort in his favorite song, “Long Black Train” by Josh Turner.

This is my last point on the songs, but I went through a time at 16/17 years old where I fell into a bad crowd forgot who I was and just wanted me accepted by everyone instead of enjoying being who I was as an individual, I got into some drugs and while I was getting myself out of that deep hole a friend from Vancouver gave me an EP, by a band Called Marianas Trench and they helped me find me again, and I thank those guys every time I see them. I have had the honor of meeting them and getting to know them. I see them as my friends in a way because of how they had helped me, and I wanted to help them, I learned what I could about street teams and the music industry (the bare bones of it anyways) and tried to help them make a mark in the Canadian music front, along the way I gained great friends and lost some friends, but it all shaped who I am today and who I want to me for my son.

When I was pregnant with both my kids, I played music to my belly and sang songs to my babies all the time. I wanted music to be a profound part of my children’s lives like it had been for me. Then a scary thing happened and I went into labor 16 weeks early with my first, my son. I didn’t know how to handle anything with my son by that point. I didn’t know how to make him comfortable or myself for that matter, because my normal means of comfort couldn’t help a preemie baby…. Or could it?

I did some massive digging and found music therapy was found to be very beneficial to pre-term babies. But all the studies I had read were done with classical music, I do like classical music but we were not going to be listening to that all the time at home, when he did come home. So I bought an i pod mini loaded it with music I loved, music Hubby loved and music that our parents loved, which is what I had been playing for him since I found out he was growing in my tummy. I told the nurses to play it when he was really stressed out and see what happens when Hubby and I would go home for the night. (Who am I kidding Hubby Dragged me out of there to try and get some sleep.) We would come back to find that the music had calmed him down and he was showing signs of major improvement over the course of our stay. At one point in the middle of the night there were 3 nurses attending to a baby across from my son and all of sudden they heard this music being played and they could not figure out where it was coming from, they walk closer to DJs isolette and it is his ipod that he somehow turned all the way up. I remember the nurse telling me it was “Shake Tramp” by Marianas Trench, because she was a fan of them as well and we had bonded over that early on.

Now that we are out of the NICU and at home, music is still a big part of his day, whether it be our dance parties in the living room, that our old mail man loved to laugh and wave at every time he saw us, or the singing and band time he has with my dad who is passing more memories of music down to my children like he did with myself and my brother, as well as my daughter now.

I once read a quote that describes who I am in a very big way:

I Believe In Music, The Way Some People Believe In Fairy Tales.

I am now passing on that love to my kids and passing along they music therapy ideas to other moms I have met in the NICU, I hope it is as useful and up lifting for them as it was for me.

Thanks, now here are a bunch of pictures of me and band member I have met, as well I will add I have kept all my ticket stubs and have gone to over 380 concerts (including bar ones) since I turned 18, that is 11 years….. I should also note that I have been to 5 concerts in the past 7 years.

 

Andrew TSE Me and Daniel Of Ten Second Epic at a music video shoot for them, they were a local band that has since disbanded, but I would recommend looking up their older stuff if you like pop punk type stuff.

Benny Social Code Ben From Social Code, another local band that has disbanded but again, Please look up their stuff online and on Spotify and iTunes.

Cam SOS Cam from State of Shock! Sweet guy, they haven’t put anything new out lately but their stuff is really good.

Chris Hedley  Chris Former drummer for Hedley! They just put out some new stuff that I love with all me heart and would love for you to check out Hedley if you haven’t already.

Dan Tupelo Honey Dan from his Tupelo Honey days, He went from backing vocals and guitar to lead singer, now they are all doing solo stuff, Dan has moved from pop and pop punk/rock, to country! So please look up Tupelo Honey the band, they have a few albums out with Matty as the lead singer, then Dan, and also please look up Dan Davidson and his music. I have known and supported Tupelo and these guys for 11 to 12 years.

 

First Mike PIcture Me and my very first picture with Micheal Ayley of Marianas Trench!! I miss the curl.

Greg Tupelo Honey Greg from Tupelo Honey! Sweet heart in spades!

Kadoo (Simon) SOS Kadoo (Simon) from State of Shock, I am not gonna lie this is one of my favorite pictures every, because I look damn fine! lol

Me and trench Me and the whole of Marianas Trench after stalking, I mean following them on all their Alberta dates. This was the last show and I am bagged!

Morgan Social Code Me and Morgan From Social Code, please look up their stuff.

Patrick TSE Patrick From Ten Second Epic and I from the same music video as before.

Pee-Nuts Pee-Nutz! sweetest merch/ sound guy ever! he helped a few of the local bands out and we knew from the countless shows we went to.

Sandy TSE Sandy and I from the same TSE shoot. He is a huge teddy bear and hugged everyone that came out.

Steve Tupelo Honey Steve From Tupelo Honey, I got along so good with him in the many shows I saw as well as proving to him I could hold my liquor.

Tommy Hedley Tommy Mac and I from Hedley, I think I was trying to mimic his face, or I was a bit tipsy, unsure at this point lol.

Guitar Sammich Of Awesome I would like to call this the Guitarist Glam-mich! We have Dave from Hedley, Matty from Trench and Dan from Tupelo, and luck ol me in the middle!

And this last one of Ian and I….. Lets say alcohol may or may not have been involved….

Ya.....

 

Thank you all for reading,

I am sending you all hearts Love and other pretty things.

-Ashton <3

I Thought We Beat The Odds

I Thought We Beat The Odds

When my water broke at 22 weeks my son was given 0% of survival, when he was born at 24 weeks and 2 days he was given a 55% chance of survial with 65% chance of long term health issued. We beat those odds.

When he was 4 days old they started scanning him for brain bleeds, they are extremely common in micro preemies, we beat those odds too and had not a single brain bleed. At 3.5 months old they told us he had ROP and needed laser eye surgery, he didn’t need glasses till 2 and it was just for near sightedness. 

We started crawling, talking and walking and to everyone around him is a normal happy healthy almost 3 year old boy. We had beaten all the odds stacked against micro preemie, I have had many doctors look at him and how my sweet little Spud acts and then look at his medical history and they have a hard time believing that is the same little boy they see in front of them. We had beaten all the odds!

Or ,so I thought….

On April 20th of this year, we met with the Preemie Follow Up Clinic, these awesome groups of doctors and specialists track the progress of many many different Preemies that have gone through Stollery Hospital doors.  Our appointment was from 9 am till noon, we were to meet with a psychologist, a speech and language specialist, an occupational therapist, as well as a doctor and nurse to address any long term concerns we may have, and to also chart his growth, as well as any nutritional and dietary needs he may need. 

Now, I wont go into to much detail, because it is private medical information. The long short if it is, we have delays, significant delays that now require him to attend a special pre-school, at 3 years old. We fell pray to being a mom and dad, seeing all the awesome things our kid was doing but not asking questions about it. 

So now, we as a family have to make a new plan, a plan to fix the delays, to give my son the best possible chance at a normal school experience when he is older. To show him how hard work and determination beat every obstacle in our paths.

We not have beat all the Preemies odds, but we can beat this. We can do this! 

Thank you for reading, if you like what I do here please Like, Comment, and follow me on my Social Media.

Love, Hearts, and Other Pretty Things.

-Ashton <3

NICU Advice For Moms of Micro Preemies

This is what I have learned and what I would like to pass on to moms about to embark on the same journey we did almost 3 years ago now. I have 10 points of advice that I wish another mom would have told me right from the start, as the first week is just the Doctors, nurses and NICU staff shoving paperwork at you, telling you what you can’t do with your baby, statistics, medical terms and the odds of your precious little miracle are. It is so much thrown at you, and it’s over whelming for a very hormonal mom, who may not be 100% sure, what the events of the past 24 hours were. You are over whelmed and don’t know where to start, here is my advice.

  1. SET UP YOUR SUPPORT SYSTEM ASAP

If you can, set up a strong and reliable support system, of friends, family, and surprisingly Social Workers. You are going to need to have people to lean on, because your chances for PPD skyrockets when you are in this situation, and you are going to blame yourself, even though you know, nothing you did caused this, and no matter what you thought you could have done, would have prevented this chain of events. While you focus, all that you can into the care and wellbeing of your child, you need to have people that will be there for you, and watch out for your wellbeing just as much.

2) TALK TO YOUR NURSES AND DOCTORS, GET THEM TO RE EXPLAIN ANYTHING AND EVERYTHING THAT WENT ON, ON THE FIRST FEW DAYS

You just had a baby, a preterm baby, a tiny preterm baby, and then they throw all this extra information at you that you have to retain for the whole of your stay. That just isn’t going to happen, nor is it a reasonable request of any mother in that situation. So, ask questions, ask the same question to 2 or 3 different people until you are 100% sure you are ok with what is going on. They make a game plan for your child, but plans change and ask the questions. Go over all the paperwork they give you with a nurse, or your NICU Social worker, make sure you are aware of everything in there. Please, do not just put it aside and forget about it. There is a lot in there that can help you get some funding, free parking and how to get money for meals while you are in the NICU with your child(ren).

3) SET UP A SCHEDULE FOR YOU!

You need to look out for your mental wellbeing. So make a daily or weekly schedule and stick to it as best as you can.  You need to go home or to your room and decompress from the day, even if nothing happened that day, it’s still a scary and stressful place. You need to be able to relax for a bit.  My schedule while my son was in the NICU was I would take my hubby to work, then be at the NICU for 7/730 am, sit and get the run down from the nurses about how the night went, get myself situated, waited for rounds to start and listened and put in my 2 cents when I could. Stay by his bedside for tests, procedures and anything else that was going on, I did break for a 30 minute lunch, and then I would leave at 330 pm to pick up my husband and we would go home cook dinner tidy the house relax, go to bed and start all over again the next day. That was our Monday to Friday, on the Saturday and Sunday, we would sleep in till 8 am be at the hospital for 9/930 am sit and visit and relax with our baby, listen and contribute to later afternoon rounds and leave at 2 pm. We did not do this because we wanted to; we did this, because I needed to do this. We didn’t get to this schedule until we were in the NICU for 2 almost 3 months; my mental health needed this because it was too much. It is too much in the NICU.

4) WRITE DOWN ANY AND EVERY QUESTION

Nothing you want to ask is irrelevant or unnecessary, but I don’t know about you, I never thought about anything I wanted to ask until I was at home. So instead of turning to DR. Google (NEVER Do that By the way.) I would have a note book with me and write down anything and everything I wanted to ask the next day. You can ask the nurse or the Dr. during rounds; whom ever you think could answer the question the very best.

5) TALK TO YOU NICU ABOUT BEDSIDE RULE (AKA CAN YOU MAKE THE BEDSIDE MORE HOMEY, CALMING AND WELCOMING)

Each hospital has different rules and regulations on what can be put at the bedside. Ours allowed up to have a drawer of clothes, baby blankets, hats and sock. They also allowed us to put books and some stuffed animals at the bedside so it, in a strange way, felt like it would at home in his nursery. My grandmother made an isolette cover that made the room feel brighter; we were allowed to tape small black and white pictures to the isolette of family members, as long as they can still see the baby and they do not block anything they need. We read our son books and showed him his stuffed animals during Kangaroo care. I mean if this was going to be our home for a while I was going to make it feel like home as best I could.

6) MAKE SURE YOU HAVE YOUR MENTAL HEALTH TAKEN CARE OF

You need to talk to a Social Worker on the regular, even if you are feeling ok, get someone on the outside to talk to you and make sure you aren’t suppressing any emotions. Because PTSD leaving the NICU is very real, we may not think we are suppressing our feelings but we are, and once we get home all those feelings come rushing to the surface and we aren’t sure what to do. We may not have the outlet right then and there, so you need to make sure you have your mental health taken care of, sign up for counseling before you leave the NICU, so you have that person should you have a PTSD episode after you leave. Those episodes may not happen right away; they may go away and come back many years later. So, please try and get that in order before you leave the hospital with your baby.

7) WHEN PEOPLE OFFER TO HELP… TAKE IT.

Put your pride aside, and take what people are offering, casseroles, house cleaning, inviting you over for dinner, doing your laundry. Take it all, after a long stressful day at the hospital, are you really looking forward to doing the same mundane chores, or do you want to just eat and decompress? Take all the help you can get from you support system. Some people don’t know what to say to you during this terrible and trying time, so they want to show support by helping in this way. Take it.

8) PVR ALL YOUR SHOWS

There is going to be a day where, you are sick or are feeling ill and the hospital will not allow you come in, or your stress has caused insomnia. Your PVR will be your best friend, to give you mindless entertainment. Enjoy that time.

9) CELEBRATE EVERY MILESTONE, NO MATTER HOW MINUT

The first time they open their eyes, the first cry you hear, extubated, first good x-ray, and many other good things are things that should be celebrated to the fullest extent that you can. Find a fun way to celebrate; we bought a new book every time he did something great. We also bought stuffed animals for him once he was more aware of his surroundings. Find your own way to make sure every Preemie milestone is celebrated to its fullest extent.

10) DON’T BE AFRAID TO TRY AGAIN, AND ENJOY THAT PREGNANCY

It is hard to have a baby, even more so with your first baby, in the NICU, and makes it hard to think about another baby. But don’t fear that, and enjoy the next pregnancy. When I got pregnant with my daughter just under 2 years after my son, I didn’t enjoy it. And it was my full term pregnancy, and it was hard to enjoy it all when I was terrified something bad was going to happen. Find a way to be aware of your body and your baby, but enjoy it. Don’t be scared!

I hope this will help a few ladies.

Thank you for reading, please Like, Comment, and follow me on social media.

Love, Hearts, and Pretty Things

Ashton <3

Day Care Dilemma

When your baby is born 4 months early like mine, means he may be 11 months old actually but developmentally he is only 7 months old. Even then some preemies are more behind than that, it all depends on the type of issues and complications surrounding their stay in the hospital and NICU, anyways going on to my dilemma.

I have to go back to work very shortly and even though my husband works days and I will be working mid-nights our son will still have to go to daycare so mommy can sleep for a few hours. My husband will be working 7:00 am till 3:30 pm and I work 11:30 pm till 7:30 am, DJ will have to go to daycare, and I am feeling very torn about this whole thing. I will need sleep and there is an overlap that my husband and I will not be there, but we are trusting out technically 8 month old by then with a stranger in a day home. I went and talked to her and saw her home and it all seemed great and wonderful but I had this odd feeling in the pit of my stomach about the whole thing. I am not sure if it was just anxiety about having my son go to a day home, or if I just felt something off about the whole thing. There were kids there and they seemed great and happy, but again, she said he will be the youngest she has there and the next youngest is 2 and I don’t want him to be left behind or have another kid get jealous and hurt him.

Don’t get me wrong I am a pretty laid back mom considering the circumstances , but the thought of a kid over a year older than my kid hurting him bothers me. There is also the fact that my child has a deficient immune system from being born so early so colds or a flu could land us back in the hospital for an undetermined amount of time, or even back on oxygen in a worst case scenario.

I know that seems like a huge jump, but I have left him with sitters before that were not family and he has spent weekends away from us since he has been home and even a few times while he was on oxygen. I am not a helicopter parent, and I can be away from my child but there is something about that, that bothered me. I am wondering about a few other options, as well as the cost of daycare these days are ridiculous. My son would only be there from 6 am till noon Tuesday till Friday and that will cost  $800.00 a month, and that’s a cheap place. One Lady was going to charge me $2000.00 a month just because he is a Preemie baby.

I wish there were more options for a working mom with a Preemie baby. There doesn’t seem to be many these days.

MOTHERS DAY IN THE NICU

In my family when I was little I remember waking up and helping my mom make breakfast and helping to take care of my baby brother because my dad worked out of town and peek season always was the spring, summer and fall. Or in Canada we call it second winter, summer and winter test, so it was just the three of us, and that just proved how strong my mom is as a person. And I had always thought my mothers days would be similar, making breakfast with my kids or my husband surprising me with breakfast in bed with the kids, just something like the movies and what I did as a child.

I never had to be in the NICU for my first mothers day, but if I had, I would have treated as it was, My very first mothers day with my baby. I would have gone to get my nails and my toes done and then cuddled with my little baby. I wouldn’t expect my friends and family to walk on egg shells around me just because of our circumstances, I am still a mom now and want to enjoy my first mothers day with my family. So here are a few things you can do to help the mom in your life who is spending it in the NICU with their little miracle.

  1. GIVE HER FLOWERS. All moms get flowers on mothers day, and why should this be any different just because she is spending it in an unconventional way doesn’t me she should be treated in an unconventional way. Most NICUs will not allow flowers in the hospital itself so a surprise delivery in person at home would be the best option.
  2. OFFER TO HELP. I know most days you want to help but this would be the best day to help this mom out, offer to vacuum or clean her kitchen so she has one less thing to do at home and she can spent even more time at the hospital and enjoy her time with her little one on her first of many Mothers Day as a family.
  3. COOK/BUY HER DINNER. When I was in the NICU the last thing on my mind was cooking, I did it but one can survive on pizza and take out for so long. So offer to cook her dinner or take her out somewhere pretty for dinner so she has a reason to get all dressed up and enjoy a relaxing evening to focus on herself for a few hours.
  4. MAKE A PRETTY GIFT.  Depending on the situation in the NICU many mothers cannot even hold their babies, which makes for a very hard day to day life in the NICU let alone a mothers day. So a fun way to brighten their days is make something for their little home away from home feel like just that, a home. It could be a nice blanket to put on top of the isolette, it could be a small collage of pictures from her pregnancy and first few pictures of the little one(s). The options are endless.

I know there are so many things you can do for moms in the NICU but these are the ones I have seen and thought of. I did read an article on Huffington Post and got some ideas from there.

Thanks for reading, I will see you all next week.

 

Ashton Taylor

JUST REMEMBER TO SMILE

 

 

I never thought my first pregnancy would be like this, I never thought prematurity was an option in my world. That it was something that never would happen to me, it happened to other people, as cold as that sounds its how most people are with bad things, that we are never going to experience the bad things in life only good because we are good people. I never had a complicated pregnancy, I am a bigger girl so I started eating better and walking more. I lost weight during my pregnancy which my doctors monitored as healthy because of my starting weight, at month 4 my family doctor referred me to my OBG-YN and he was so awesome, so nice and made me feel so comfortable during the whole thing. He did my first pelvic and told me that my cervix looked funny. I remember those words because I made the joke that it matched me perfectly, then I asked what that meant. He told me not to worry and to just abstain from sex until after the baby was born. In the mean time I had 2 ultra sounds and no one saw anything wrong. My baby was growing perfectly and they saw nothing wrong, he was active and happy.

At 5 and half months I got up at 1 am to go pee and there was a bit of blood, call me paranoid but I woke my husband up and we went to the hospital to get it checked out. We went from emergency to labour and delivery observation, we sat there for 15 hours. They had me on a monitor and my baby was fine and active and happy as they could tell. Then when I got my ultrasound they told me there was no fluid. My water had broke but I was not in active labour. They gave me steroid shots and antibiotics and I was put on hospital bed rest for as long as they could keep baby in my belly.

That lasted 7 days, my son was born at 9:51pm June 20th, 2014 at 24 weeks and 2 days. He weighed 1 lbs 12 oz, he was 11 inches long. He cried the second me was born and breathed on his own for the first  4 days. He was on CPAP for 4 days, intubated for 66 days, back on CPAP for 21 days, on high flow for High flow Oxygen for another 21 days then on Low flow oxygen for 8 days then he got to come home after 120 days in the NICU. We got to know all the people there and made friends and went through good things and bad things. I can tell you all the ventilators that they use all the test the run daily on preemie babies and what they are looking for with each one.  I can tell you what it feels like to watch your child cry without making a sound and all you can do is watch and try and figure out what you can do. Because as a parent you are programmed to fix their pain. You are programmed to scoop them up and do everything you can to make them not hurt any more.

As a preemie parent you find ways to help your child in non conventional ways to parent, and it is different with every parent. Some mothers pump and come for a cuddle and then go home. That’s ok, the NICU is a scary place and you know that your little one is in good hands and they are involved in their own way. That is how my husband handled the NICU minus the pumping. There are parents that are there every day for their child but don’t want to know about the procedures, they are only there for their child and that again is ok because its how your are coping. Then there are parents like me, who are there every single day, know what machines he was on, every medications he was on, every procedure he had done and how long he was on each medication.

 

When we were told that he passed all his requirements to go home and we could take him home, we were ecstatic. He was Finally coming home!! He was coming home on oxygen and they pictured him on it for 6 months and we had booked an RT, repertory therapist, to come to our house and set up equipment and we also had booked one to come once a week for assessments to see if we could turn down the amount of oxygen he was needing, And his RT saved his life. after only being home for less than 24 hours he went limp pale and stopped breathing. She calmly told me to call 911 and she started trying to stimulate him and she started CPR on him. She got him to cough and start crying and he pinked right up. I was crying and trying to not panic while on the phone with 911, I did everything 911 told me to do except CPR because his RT was doing that. The fire department and the ambulance arrived, he was awake and scared by that point. They handed him to me and I calmed him down, I carried him down to ambulance and they hooked him up to their monitors and he was stating awesome.

It was 24 hours from the time we walked out of the NICU with our baby, till we walked back into the same NICU with him. There was some rule that said if there was an issue within 72 hours of discharge he is to go back to the NICU he was discharged from. They hooked him up to every machine and they did a full work up on him and there was nothing wrong. They did a chest X-ray to see if there was an issue there and there was nothing. They could not find a reason for what happened, now I am scared to bring him home. I am scared that this could happen in the middle of the night and I wont get to see it. That I wont be able help him and make him cry and breath. They told me that it was because he probably aspirated some food or vomit in his lungs and that I shouldn’t worry.

 

 

He will be in the NICU for another 24 hours and let us know if they want him to stay or if we can take him home.  I am not writing this to scare anyone. Because being a parent is scary but being a preemie parent is scarier. We know what almost feels like when you in the hospital and when we get home we shouldn’t have to feel almost. But take the infant CPR class if you can, and just watch your little one closely. He is alive because we watched closely and there I can rest easy because even if this happened I know I as a parent did everything I know how to do. Yes I am scared to bring him home, but who isn’t scared to bring a baby home for the first time, in our case a second time. But we will power through and I know he will continue to thrive and grow.

As a preemie parent you grow and learn to handle the fear and channel it into something useful. I always found a reason to smile while in the NICU with him and I will keep finding a reason to smile through all of this because preemies in a happy home will grow up happy. He is a mellow happy baby and I would like the think that’s why, He only fusses when he is hungry and dirty, other than that he is all wonder and all about the cuddles with my husband and I. He loves his bouncy chair and watching our cats around the living house. You find ways to smile in the scary parts. Smile.

ASKING PERMISSION TO BE A MOM

The one thing I never thought of when my husband and I decided to have kids was asking permission to do the most basic parenting things. And with your first child in the NICU you have to ask to do the most basic of parenting tasks. I had to wait until my son was 25 days old before I could even change his diaper. Changing a diaper is a task most other parents bicker and try and pass off to the other or a visiting grandparent and its something I had to wait 25 days to do. That’s about 192 diapers I had to let someone else change. And with the medicine he is on for this virus he has I may have to wait up to six weeks to change a diaper unless they show me a new way to do it. I never got to talk about the possibility of him having a diaper rash, I was told one day when I came to see him he had diaper rash because my son is an awesome peer. This is something a mother should experience with her child and not be told by a nurse. And its heartbreaking to me because I have seen my friends and people I have known for years take for granted a simple privilege like taking care of your child’s basic needs. I am in no way saying that everyone is like that, this is just me saying a few people I have seen and this is over my 26 years in this world too.

 

I have to ask permission to hold my son, I have to have a nurse and respiratory therapist come and help me take my son out of his bed and show me how to hold him because of all his tubes wires and cords. And I have been told no I am not allowed to hold him because of the type of ventilation he is on, because he is so stressed and moving him like this could stress him out too much and hes better left alone or because there are not enough people around to help in case of emergency. And I have seen the emergency first hand, he was 4 days old and it was the second time I ever got to hold him. We were just sitting and relaxing and I was quietly humming him a song and then the alarms started, his oxygen in his blood had dipped below 81% which is bad, since his happy numbers are between 88% and 95%, and it was still dropping. And because his oxygen was So low his heart rate dropped below What was acceptable. His heart rate should be between 100 BPM and 200 BPM and his had dropped to 80 BPM. It was still dropping fast and the Nonmedical Routes of calming him down were not working. They did not have time to Move him of my chest to Basically revive him on me, l had one nurse holding my head in her hands making me look at her while I cried. I was not to look at what they were doing but I could feel the movement of whatever they were doing. After what felt like hours’ but was only 8 minutes they moved David from me and put David into his bed to take him from his CPap machine and put a breathing tube down his throat. After that it takes a lot of energy and talking myself into holding my Son. I am scared to hold him because flash Back to that day and scared i may have to go through that again. l have held him since then. But it takes a lot me talking myself into it and telling Myself that won’t happen again. And After all that preparation Mentally and emotionally, to be told NO You can’t told your son just crushes me and Brings me back to what if they had said yes and it happened again.

 

As a parent all you want to do is hold Your child give the ma kiss and make it all go away. the pain, the poking and Prodding, That’s our job as mom and dad is to kiss the booboos away. what do we do here, When your child looks up at YOU as if to Say help me, Mommy it hurts-Mommy 1 can’t breathe. How do you handle that? You can 7 Just pick them up and make it better . But you can hold their hands and smile and talk Soft to them let them Know even though this is scary you are there and you are on their side no matter what. even if can’t change a diaper or hold him as much as I want, Which is always and never Put him down, l am still the one who knows he hates facing the window because he is scared he’s gonna miss something in the Pod. I know that he loves tummy time because its the best time to try and pull out his breathing tube because it’s uncomfortable. I Know that he is calmer when people are talking to me during procedures Because he knows they are there because I Know they are helping him.

I know he loves books and having his dad read to him every weekend for 2 hours. And he loves to Rock out music When he is stressed and angry. l may not get to do the basic stuff but I know my son. And When I am feeling sad about the basic stuff I tell Myself about his little quirks. And that the basic stuff will come, I mean right now he should still be in my tummy SO I wouldn’t get to do this anyways. It’s a long road being a preemie Mom or dad But the ride is What makes it sweeter in the end. The story is like this post, sad and full of self pity and it ends with self acceptance and a small smile.

 

Cuddles

HUMAN DAIRY COW

Some days I feel like a human dairy cow, just so I can make sure my son gets all the proper nutrition he deserves since he working so hard. I am OK with fact that I had to do it, its what us moms are suppose to do for our babies. We birth them and take care of them by protecting them and changing the poopy diapers and feeding them the milk from your body. I am just feeling so tired and worse for wear on the whole thing, my little guy is only 3 pounds and he cannot breast feed. He has a tube that goes down his throat into his stomach That is hooked to a pump that puts the milk directly into his tummy. No tasting or anything he gets 16 ml over 50 minutes every two hours, sometimes they will allow us to out 2 ml in his mouth, but he is not coordinated enough to suck swallow and breathing yet. I know some adults who are not coordinated enough for that. But when your kid is eating good and not spitting up or getting upset tummy’s or not pooping blood, you find that strength and that energy to keep pumping every 2 hours or a minimum 8 pumps a day. By the time your child is 3 weeks old you should be producing 600 to 800 ml of milk a day as per my lactation consultant.

Yes I know moms of non preemies get to meet with these lovely ladies as well, but you don’t have them calling you at home to book an appointment to see them, or see them once a week to talk about your boobs or milk supply. And when you have your supply drop off so bad for no reason, making you feel like you are a bad mother because while these nurses and doctors are doing most the work caring for your child you can’t do the one job you can do for them, these ladies are your best friends, they have magic tricks to make the milk come. From simply holding your child or using a warm towel around your breast, to a magic pill taken 4 times a day while you pump 10 times a day. They will listen to you cry because you are only producing 290ml instead of 600 ml a day, but they will tell you everyone is different and some women can make to much milk some women make too little, that doesn’t make them good or bad mothers. It makes them human.

 

Another problem I have noticed with myself and a few preemie moms is finding that drive to pump while your child is sick and taken off feeds. This happens too often in the NICU and it could take weeks for a little one to get back up to what is considered a full feed. Now the doctors and nurses are not barbaric and stop feeding the babies for shits and giggles , no what you need to remember is that they are early and their little bodies aren’t designed to eat real food, or milk, yet. So there are things that can arise that will render them NPO, which means no food. But they do get the vitamins proteins and fats through an IV so even if they aren’t eating they are still getting the nutrition they need to grow up big and strong. I have mentioned certain things that can render the babies NPO above, and when your baby is NPO you as a mom find it hard to make yourself pump because that food isnt going to your baby its going in your freezer or the hospitals freezer. To sit and wait for your baby to get better which could be hours, days or even weeks. When your child is that sick you literally can do nothing to physically care for your child. You sit and watch the nurses and doctors work while you may get to hold their little hand or do kangaroo care if they are not that sick. I know its hard because I have gone through it, I am going through it but you just have to think ahead for that milk.

Soon your little one will be better and soon after that eating 16 mils every 2 hours, thats 192 ml a day. Plus if you pump less than 8 times a day to many days in a row, your supply will drop drastically, it takes weeks to pick your supply up and by then your kid could up to full feeds. I know its hard but you should try and power through for the bigger picture. You are not alone in this fight. Remember “two steps forward one step back” the NICU motto. It shows you are going somewhere just at a slower pace.

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