Tag Archive | Self Care

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

Roseanne

I was watching TV today and Roseanna was on, it was an episode I had not seen, Darleen went into labour at 28 weeks and ended up delivering two days later. I am looking at how they depicted the NICU and how the doctors handled the family. I was looking at how they were trying to stop labour and all the machines that they were using. I kept thinking is that how the NICU really looked at that time in the early 1990’s and how they would have handled a 28 weeker on ventilation, and telling the family that the baby was going to die and then tell them the best idea would be to take the baby off ventilation.
It brings me back to when my son was 6 days old and was dealing with pneumonia and was on Osolation ventilation, the Jet, and nitric oxide trying to help him breath along with the medications for the sickness. And one doctor told us to star thinking about how far we wanted to push this. And it made me feel for these fictional characters, and a mother in our NICU pod this morning. Having only just said hello to your child to make the call to say good bye.

 

 

I was in the NICU pod when they brought her little one in and I saw all the doctors dealing with the little one and hooking her up to the vent and jet to help her breath. Hooked her up to meds and all those fun things that preemies get to experience while us parents look on helplessly wanting to just hold thier child and make it all better like we are programmed to do. And it all looked like what my son went through when i left for home that night. I smiled and wished them the best as I left. I come in the next morning and the parents are still at the bed side, I smile again but didnt say a word and went to check on my son. After rounds, I curled up in my chair and read my book and soon fell asleep. I woke up to binging and banging people causing a rukus and people talking in panic voices. Then I heard that cry, one that made my heart just shatter for this poor mother and father, they hit the Code Blue button and after 30 minutes of trying, they could not revive the little girl. Just listening to that mother cry made me cry quietly and look at my little boy and wished I could do something or anything for them but i knew I couldnt.
The point of this entry my seem all over the place but thats how my thoughts are these days, I start in one place and end in another. I am just counting down the days when i can hold my son without having to aske permission.
Thanks for listening to my random thoughts
Ashton
Sleeping Angel

ANOTHER PREEMIE FAMILY

No one knows what a preemie parent goes through better than another preemie parent. But how do you connect with other parents in the NICU? Some places may have support groups, but no everyone goes to those. In the NICU that my family is staying in there is one support group, they meet once a week for 1 hour and only 2-7 people come to the group. There are no other support groups in the City of Edmonton for preemie parents. Its hard, and today i found myself getting more and more annoyed with our family support system because they kept telling me to go out and enjoy myself because my son was having a good few days. They don’t get that things can change on a dime and the system i have established with my husband works just fine and I do get time away from the hospital to spend time with my husband and my cats and clean my house and cook supper and do the grocery shopping. Its very hard to not snap as these people who really are there when you need that shoulder to cry on.

 

I think there should be access to peer to peer groups. The social workers that we are assigned have many families and some have been there longer than others and some are going through similar situations and they are always so busy and cannot be there as much as they would hope. And they work normal hours where as us preemie families don’t know normal hours. The moms are still up all hours of the night pumping and making sure that there is enough milk for their babies, or there was the dreaded phone call and they parents rush down to just sit and be there for their babies. And those are the times I feel another preemie parent would be helpful. I would in a heartbeat drive to the hospital and sit with a mom or dad just to be there to listen and be the shoulder to cry on because I have been through the 3 am phone calls and terrified at what is going to happen to my kid. Thats what the social workers are there for that support to be the shoulder to cry on and be there t to listen but most of the ones i have talked to have not gone through this. I know i am repeating myself but I am going to try and push for a peer to peer groups. Even one on one type of a thing, I did talk to my social worker about this and she was worried certain people would sign up that wouldn’t be a deal for the job. I explained that it would be up to the social workers decresion, talking to parents and asking if they would be ok to talking to other parents or being introduced into parents that have been just admitted into the NICU under similar circumstances. She liked that and asked if she could refer parents to me. And I am all for it!  I would love to help put into motion this plan, and even if my baby comes home I still would love to come in and meet parents and keep building this Preemie Family, because like everyone keeps saying, No one understands what a preemie parent goes through better than another preemie parent.No more pictures

ANOTHER WEEK BEGINS

The one thing I have been told and learned is to know when to take a break from the hospital. Because if you don’t it will become something that is harder to walk away from and find a stress free time. If I had my way I would never leave the hospital and I would sleep and make a point of snuggling with my little guy for 3 to 5 hours a day. But when i do go home I realize how exhausting being at the hospital is. I have only been doing this for 31 days, and I think I have found a good system that I will be able to spend the time with my husband and decompress as needed. I treat it like a job, as bad as that sounds. I get to the hospital at 7 to 7:30 Monday to Friday morning and leave at 3:30 to 4 in the afternoon. And then I have time to get groceries and cook supper and cuddle with our fur babies that are at home. On Saturday and Sunday My husband gets his time with our son and cuddle him and read to him and sing to him. We are there for no more than 4 hours a day on the week ends and that really allows us to spend time together and talk about how we feel and cry together and plan out what we hope for our son when he is done with this ordeal.

 

Its extremely stressful for any one who has a baby to see them sick, but this takes that stress and makes it, for lack of a better word, it makes it, its bitch. When you see your kid in pain or feeling uncomfortable your natural reaction is to pick them up and hold them and tell them everything is going to be OK. When you have a preemie you don’t always have that option, you can touch them lightly and talk to them, and that’s only if they are feeling up to that. When my son had a bad day, he does not handle being touched by anyone at all, that includes me his mommy. And when your touch stresses your kid out makes you feel even more helpless. But you have to look at it as he is getting the best possible care that you can provide for him and you have a support system both in and out of the hospital. The NICU is its own family and I have found some of the best support in there from families who have been there and been through some of the road blocks you are going through. And they will tell you the same thing, take a break from the hospital. Walk away and have a ‘Mommy sanity’ day and it will not make you a bad mom that you took a day to take care of yourself. Its like when you need a break on a regular day, you would drop the kid off with its grandparents or call a baby sitter, and take a break. It is the same thing, and you will feel better. Because being a mom is hard in these cases you are there making sure you know what is going on with your child and remembering what medications they are on, and what things they like and making milk and remembering to pump every 2 to 3 hours and making sure your Milk stays at 600 to 700 ml by the end of the day. Its a lot on your mind and a sanity day and breaks from the Hospital are a good thing. Make friends with other moms in the NICU, and plan a coffee or shopping day together and have sanity days with other NICU moms. Remember you being happy and healthy helps your child.