We have quickly developed a deep understanding and respect for preemie parents. Its one thing that never crossed our minds. Never did we imagine having a baby at 27 weeks, maybe a week or 2 early, most likely a week later… but never ever even considered a baby before 37 weeks.

Having a baby is suppose to be an exciting time. Yes pain, yes its rough but in the end you sit their smiling holding you baby happily being wheeled back to your recovery room. This is how we all imagine having a baby. Instead with a preemie its not exciting. Its terrifying; will my baby be ok, what does our next weeks, months, even year look like? You don’t get to hold your baby. Instead you walk past those happy moms and dads coming out of labour and delivery while you leave your baby behind in the NICU. 5 days post delivery I walked to the NICU for the first time. We ran into one of these new happy families. I managed to smile and say congratulations. I then looked down at her precious little baby boy and the words just fell out of my mouth “wow he’s so big!” I immediately fell into tears as I said my boy is 27 weeks in the NICU, as George put his arm around me and walked me away.

We now look at every NICU parent who an ache in our hearts, knowing some of what they are going through. Others we can’t begin to understand with you as their baby is constantly fighting for their life. We cry for those parents, our heart ache for those parents. We are all in this room together, our babies each with their own struggles, us all with our own volatile emotions trying to keep it together. We are each on our own journey, but bond over our new parenting role.

We had amazing support and nurses and doctors in labour and delivery. After Aiden was born we went to postpartum. We learnt a lot there about the lack of support for NICU mothers. Usually you would have your baby with you, and the nurses would help you start breast feeding. When you have a NICU baby, there’s no baby to feed. I was told to not worry about pumping right away and just focus on recovery. I was in pretty rough shape and just getting to the bathroom was extremely painful. It wasn’t until 2 days later that I asked about colostrum expression. NICU moms have a hard to with milk production as your baby is not with you and on you. You know you have a baby but your brain doesn’t trigger the production properly. Unfortunately we learnt after connecting with a lactation consultant after leaving the hospital that I should have been showed how to express right away after Aiden was born. I kept asking the hospital for lactation support and pumping help and was told there wasn’t anyone! They also only had a couple pumps which meant you had to try and get one to pump every 3 hours… which just wasn’t possible. A huge thank you to my sisters friend that gave me her old pump so that i could actually pump regularly. Breast feeding is very important to me so this has been a stressful endevour. My lactation consultant is now working with my to help with milk production and it gives me a lot more hope that I will get there.

The hospital does not give you any recovery support. I was give a piece of paper that said to not drive for 4 weeks, not to get pregnant for a year and to not lift anything heavier than my baby. I just had major abdominal surgery and this is what you get. You are really left hanging to find your own resources, and do your own research. They usually discharge C-section patients 3-4 days after delivery. I managed to stay 6 days. I had a classical c section which is more invasive and means i can never had a natural delivery ever. The uterus is cut vertically making it dangerous to go through labour. It is also a more painful and slower recovery. I was discharged 1 day after i finally walked further than the bathroom. The doctor did not care that i couldn’t get out of bed on my own, that i could sit on the toilet without using the grab bars – i was medically stable so I was discharged. It really is sad the way mothers are treated. We have just been through so much and then just expected to be fine. If Aiden hadn’t been premature i would have been going home with a baby. I can see what you would really need a support network to help you out.

One of my most frustrating issues was the lack of metal health care. When i was at BC Womens a social worked came in and checked on me every day. I spent 10 days at VGH and saw a social worker once. In my opinion, this is where things were handled completely wrong. With a normal delivery, you go home with your baby. With a preemie, you are discharged and leave your baby in the hospital. There is no way to understand the trauma and pain that causes until you are put in that position. I was discharged on Dec 30th, 6 days after Aiden was born. George had gone home for the day to check on the farm. The doctor came in at noon and told me that I was medically stable and being discharged. I was shocked. I told him i wasn’t comfortable, that i couldn’t get out of bed. He didn’t care. I told him i was still taking milk to Aiden during the night because i just had enough for each feeding, and he told me the NICU could give him formula. I told him George wouldn’t be back until dinner time and he said that was fine. That doctor left me in the room by myself, balling my eyes out. I was hyperventilating, was dizzy and faint from panicking a crying. I was given zero support about leaving my baby at the hospital. There was no extra support given my husband was not there. I was left to panic alone. Poor George and my mom both got phone calls with a hysterical me and George had to race back to the hospital. We left the hospital that night with my crying through the entrance way and all the way home. A past NICU mom told me that leaving your baby at the hospital is the hardest thing to do and creates trauma, and I 100% agree. If this is the case, why is the hospital not providing emotional support to NICU moms being discharged? I am still shocked about how the situation was handled.

We have settled into our new lifestyle. George spends the week at the farm growing and harvesting microgreens, and keeping things going. He is also working on the baby room since we thought we had lots of time! Then George comes back and spends the weekends with me and Aiden. I spend my days between the hospital and our airbnb. It’s amazing how little time there is a day between pumping, eating, sleeping and going back and forth to the hospital. I am so grateful we were able to find somewhere close to the hospital. They have funded housing but its currently full. The airbnb is just a 4 min bus ride, or a 10 min walk. As i get better the walk feels so nice. Fresh air, moving, and just clearing the mind.

In the NICU parent involvement is encouraged. Every time we visit we take Aiden’s temperature, change his diaper, change his foot oxygen saturation monitor and give him little drop of breast milk in his mouth. Then we hold him while he has his feed. Every morning the doctor comes around and goes over how Aiden is doing and any changes that they will make to his care. If we have any questions we can ask them then as well. We were just given the beads to make Aiden’s milestone string. Every milestone he passes he gets a bead then goes on his string. The strings hang from each babies monitor to show all the things they have made it through.

Each day I walk in and out of the hospital I think of all the other parents doing the same thing, and all the parents who have done this journey. I think of the parents who have been going in and out of the hospital for over 100 days. Sometimes I feel as if i’m just walking through a scene with everyone doing their thing and Im just invisible walking through in my own world. Most days I would probably walk right past someone i know and not even know it. I find the surroundings provide too much stimulation and by staying internally focused I can cut out some of the chaos around me, or maybe its the only bit of my life right now that i can kind of control. Making the choice to ignore whats around me.

Think of raising your baby and all the decision that you make every day. Do I want to breast feed, or bottle feed? If bottle feeding what formula will I feed? If your baby is fussy, how will you sooth them? What song do i want to sing to my baby? We are always making decisions and choose what we feel is best for our baby. In the NICU you loose those choices. Yes i choose to breast feed, and pump around the clock to bring milk in for Aiden. I do get that choice. I can voice my opinion but ultimately its the nurses and doctors say. When Aiden was overfed one day, i didn’t get the choice to stop his feed. I instead had to sit there with him suffering and crying until he finally vomited everything up. (yes i have been thoroughly broken into parenthood in the being covered in puke department.) When the milk fortier makes him gassy and uncomfortable and gives him runny poops I just have to watch him suffer because weight gain is more important. I have to be ok with him getting the milk fortifier that has crappy ingredients and is something i don’t agree with because there is no other options. A nice nurse split up Aiden’s meds to make them easier on his stomach, only for me to find out one nurse changed it back to all at the same time to make it easier. But see those meds were split for a reason. The iron was hard on his stomach and he puked everything up, including his caffeine. The rest of the day was really rough with his vitals not being stable and his air support needing to be increased because he didn’t have the caffeine stimulant to breathe. I keep trying to advocate for him but also feel like some nurses hate me. I’m ok with that, because this is about whats best for Aiden, now have to make things easier on them. I feel like I have no choice in what happens with our baby. I’m really hoping were doing the right thing by trusting what the doctors are doing even when it goes against what we believe.

George and I have been through a lot of rough times in our lives but this past month has topped it all. My midwife asked me how I was doing mentally. I said some days Im doing good, other days all I want to do is cry, and if something triggers me, all Ill do is cry. Its like teetering on slack line. Trying to hold on, trying to get across but sometimes you just slip and fall. Each day is another day. You can’t plan ahead, or even think ahead, all you can do is take each day as it comes and be grateful for Aiden’s health and pray he keeps improving and keep hoping for that day when he can come home.