Tag Archive | PTSD

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

I Feel Alone

I FEEL ALONE

 

Hey There Everyone,

 

I have always thought I was a strong person, I always thought that I could tackle most things that have been placed in my way. But I am having issues being the strong one these days. I feel like there are very few people who really understand what I am going through and I am having a very hard time in figuring out, how to be that strong person I once was. The mom who walked into the NICU with a smile for 157 days, the mom who learned every last thing she could about having an O2 dependent baby and still get groceries and live life as best we could.

I was a strong mom every time we walked into the preemie follow up clinics, and knew they were going to tell me a long list of things we will need to work on. We did, and I was a strong person when we got pregnant again. After one miscarriage, and a severely premature baby, I was strong and held on as much hope and strength I could muster in those 41 weeks. We did it, we had our full term baby, there were some meltdowns, but really who wouldn’t expect them from a preemie mom, pregnant again chock full of hormones and PTSD.

I am a part time single mom these days, my husband’s job has taken him to work out of town, I have my parents close but they both work full time still as they are the young hip kind of grandparents, my best friends are 45 minute and 2.5 hours away. I talk to them all the time but it’s not that easy to just load my kids up and go to the park these days, my son is way too busy, he has no fear and is very friendly, and my daughter puts EVERTHING in her mouth. So going to the park I have Princess Tally in the stroller at all times, and trying to follow Spud as he climbs over EVERYTHING trying to jump off things and just running off because he thinks it’s funny.

I know this is all part and parcel of being a 3 year old, but it also has a lot to do with how his brain is wired due to his disorders.  He doesn’t fully understand what is going on, and my husband is amazing and tries so very hard to help me when he is home, but our routine is different than it is with me so the kids look for me, knock on the door. I am the one who runs the household, I make sure bills are paid, money is where it should be, groceries, attempting to clean the house, doctors, specialists, watching all the food intake of both kids, how much juice they are having over water. I am a mom, I know this is what stay at home moms do, and I know that there are moms who are worse off than I am. I get that I do, I am not saying my plight is worse than theirs,  I am saying in my situation I am unsure how much longer I can be the strong on. I am the mom of a special needs child, and his needs are not visible. I had a little boy ask me why my son talks funny, I never thought he talked funny, and I just said that he needs a little more help learning to talk, and what came out of his mouth just blew my mind…

“Did you not teach him right or is he just stupid?” and his dad just stood there looking at me, as if I am supposed to answer that…. The moms who deal with this daily, I am sorry, I feel for you and you ladies are strong, you fathers who deal with this daily, you are strong and brave parents and I will ALWAYS make sure my children know that is not right, you don’t stare you don’t point, you are kind and make friends with everyone. We are not the same but we are all amazing and equal.

I am alone, and I don’t feel like I can be strong very much longer, but I know also, that after this pity party, I will go kiss my sleeping babies on their heads, pick up the toys, load the dishwasher, go to bed and do what I need to do and make sure my kids are happy, healthy and always get what they need in life.

 

I know it’d my first blog post in a long while and it’s whiney and all over the place, but I needed to get this out. No matter the special need of your child you do feel alone at some point, and it may go away, it may stay a while but you never give up, even when you think you might.

 

It took me a week to write this, my son had had cabin fever and decided to not listen and always play rough with his baby sister. It’s been hard and I have called my mom friends and my mom in tears a few times because it was that hard, and my son would run as soon as the door was opened and I am alone so I would have to pick up the baby and boot after my son or worst leave her alone in the living room and get him, only for a minute but it’s still never safe. I was at a loss, I called the Doctors in the clinic and its all part of his disorders and he needs to be in school in the fall. I am hoping we can get this done and ready very soon.

I am sorry for the rambling post; I will have better ones out soon. I promise,

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

Mommy Groups

I am a part of a few mommy groups but there is one I post in quite a lot in one of them because the admins are great and keep a lot of people in check. There is a lot less negativity there and next to no mommy shamming, I have done a post about mommy shamming in person but the most common kind of mommy shamming is online. The power of the pen and anonymity makes people a lot braver and bolder with what they say to other people.

Mommy groups were made for all of us moms to talk to each other, get advice, vent about kids, husbands and life. We need that outside of our friends sometimes, sometimes we need the advice of people at a different part of life to help with what we are doing right now. You can get 2 to 100 comments on a post depending on the topic.

Even in the best of Mommy Facebook groups there are those moms who will bring you down when you are feeling your worst. There are moms who vent about their kids and how they are acting, how they can’t handle it and ask other moms how they dealt with it. They will get 100 comments that are nice and helpful about the situation at hand, but then that one comes in. That one that either has a snarky undertone, or just comes across as just plain mean. That is the one that is going to stick with you the entire time.

Mommy Facebook groups are not for the faint of heart, whether it be what people reply to your posts, what  people ask, or some of those pictures that get posted! Its a scary place where a lot of drama can take place if you let it. BUT, it is also a place rich with so many wonderful ladies who have either gone through the same thing or a similar situation, and are willing to help you out as much as you need.

You need to take your time and observe the Mommy Facebook groups you have joined for a bit and see the goings on in each group before you commit to the one you are going to post a lot into. All of the above is my opinion only, and I am here to present all that I can to you lovely people! SO, I posted 3 questions to the mamas in two of the Mommy Facebook Groups I am a part of, and one mom stated what keeps her coming back is she has a place to go to vent and not worry about people bashing her. Another mom put:

“I really want to be able to go to a place that is unbiased and non-judgmental. A place where even if I’ve never met them in real life, I know the moms have my back and I can say (just about) anything without being afraid to do so.”  -Mama Ronni

 The 3 Questions I posted were as follows:

  1. What are topics you really want to avoid in a Mommy Facebook group?
  2. What are the things that keep you coming back for more?
  3. What are the things you look for in a Mommy Facebook group?

What topics a lot if not all are saying they want to avoid in these groups are topics along the lines of, Circumcision, breast feeding vs formula feeding; they are OK with as asking for advice if you are doing one or the other but please don’t take poll before your baby is here, that can just get nasty. A few other topics that can get touchy are car seat rules and laws, as the box and instructions state one thing, each county, state, province and country does have its own rules and regulations that you should follow, if you are not sure police stations and pediatricians will be a good source of information for you. Politics and religion are 2 very big topics that also should be avoided in these groups.

What keeps these lovely mamas coming back for more is a mixture of having a place that you can just blow off steam about your kids, your husband, partner or any member of your family or extended family and not be met with judgment and negativity. There are a lot of tips being passed around as they work for certain moms, for potty training, snacks and meal for fussy and picky eaters, things along those lines. Name calling is only allowed towards Mother-In-Law’s (or any inlaw/family member) who deserve it, baby daddy’s who are as useful as tits on a bull, Baby Daddy’s Girl Friends who cant seem to stay on their side of the parenting line, and creepy men/coworkers that cant catch a hint.  Sanctimommies are welcome, but be warned you start any shit they will come after you with a verbal vengeance. There is also a lot of humor and honesty that it put out there to bring some lightness to some serious topics, despite a lot of the ugly that pops up these moms do support and care about one another, even if miles separate them, there is a closeness between a few of them.

“Some moms can really encourage and give you support especially when you are stressed or down.” – Mama Leslie

What is looked for in a successful group is the type of advice that is being given, making sure there is no shaming or making a mom feel worse than she already does. There is a HUGE difference between constructive criticism/advice that takes you in a different direction from a different point of view, and just flat out shaming this poor mama for something that is Nine times out of ten, out of her hands in the hands of the terrible one, I mean the kids….. You don’t always have to agree because lets face it, we never do on a lot of topics, but as long and you are respectful and see in some way what they are saying, that is a big thing they look for in a group. Being a mom is hard, and we all do it the best we can in different ways, so support is a very big thing that is needed in the groups, some people are so far from family and friends and need some sort of support system and these groups can be it, and we need to make sure they stay safe and supportive for that, and many other reasons.

“I am a first time mom..So seeing another mom mess up worst or just like me makes me feel like I am not so bad at this mom thing. We all try are hardest and a group is supposed to be there to raise people up.” – Mama Rebecca

This is the true story of what I think and feel as well as what other moms think and feel about Mommy Facebook Groups.

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

Love, Hearts, and 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

Mommy’s Saving Grace

The one thing that mommy’s love the most…. Well the one thing this mommy has learned to love the most is Grandma and Grandpa visits. Whether its us going to see them, them coming to visit our happy little home or the best the over night visit for the little one!

image

I love my son but I am still on Mat leave and home all day with him and would like more than a 2 hour break ( if you can call it that) when Hubby gets home. You see Hubby plays with him and tries to feed him, but once there is a mess, spit up or strong odor coming from DJ he is back on my lap till the problem is rectified. But that’s when grandparents come in, I can hand him off and not worry about getting called or interrupted while having a shower because DJ pooped or spit up.

I recommend grandparents or adopted grandparents to all first time mothers with Hubby’s who have weak stomachs. They allow you to have a shower that is longer than 5 minutes, you can pretend you are 15 again using all the hot water.

The only downside to grandparents and an infant on solids is now they can be sent home at 6 pm on a sugar rush, good thing I got all that rest the night before, its gonna be a long one tonight.

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.

Thumbs up