Life’s a journey – part 3 – The NICU Bubble

The first time I held my daughter was everything. I wanted to sit there holding her and looking at the perfection in my arms forever. Take in every second of her little noises, the feel of her soft newborn hair and that intoxicating baby smell. The moment didn’t last forever it lasted only a few minutes before the nurse advised they had to get her back in the incubator as she cant regulate her temperature. My baby I had been waiting to meet was here, but life had changed from what I had planned, I thought I would have the perfect birth then take her home. She was now being taken off of me and put back into the incubator. As they took her off me and put her back I was sobbing. It was like a vital part of me was taken away, my arms still in the shape of holding her, I was simply told I needed to go back to my room and rest.

I didn’t want to rest I just wanted to be with her. It felt wrong so wrong to even be in a room down the corridor away from her. Being wheeled back to my room at the end of the corridor I could see into the other rooms of new mothers with their babies, happy family visiting. I was put in a room by myself, I think as the staff thought being around the other mothers and babies would upset me. It was a catch 22 I didn’t want to be alone but at the same time it was upsetting seeing them all when my daughter was in the neonatal unit behind closed doors. The unit only allowed parents and staff in no one else was allowed to protect the babies from being exposed to more people and risk of illness.

My daughters father left to go home and get me some things and I sat in my room and called my mum. The painkillers I had to be able to get into the wheelchair and see my daughter were wearing off already and I called my mum as reality was really sinking in. I poured my heart out to her about everything that had happened and my Mum booked her and my dad on the first flight they could get and organised with her work for time off earlier than planned. I told her my fears of how small my daughter was, that I had almost lost her and that she would not be aloud to leave until she hit 2kgs. With being 1.72kgs they were unsure how much she would drop before gaining again. My Mum said everything she could to reassure me but I blamed myself. I felt my body had failed my child. She was hours away from dying and if I hadn’t spoken up she wouldn’t have made it. My body wasn’t providing what she needed. Even though I had done everything I was suppose to, never ate anything I shouldn’t, never drank, had pregnancy vitamins. I had done everything by the book to give her the best start and yet my body had failed at its task and had put her in danger.

My cousin who was also my doula came to the hospital after work with a lovely home cooked meal knowing I would need some good food to comfort me. She sat with me for hours and we talked through everything that had happened and we discussed breast feeding. So we called the nurse to get what I needed and in walked the nurse that had done the birth classes my partner and I had attended and finished only weeks before hand. She recognized me straight away and smiled “you’re in a bit early aren’t you?” I explained what happened and she got some plastic syringes to collect the colostrum that my body was starting to produce. I was so glad to see a familiar face and being the funny person she was she said “lets teach you how to milk yourself” this made me laugh for the first time in hours. My nurse and doula showed me what to do and thus started my breast feeding journey that ended up lasting 2 years.

Days passed and I spent every moment I could up in the neonatal unit. Even after I had an allergic reaction to the drugs I was given and had to stop my painkillers. I still persevered through the surgical pain and kept walking up the corridor to my daughter. I sat with her through every blood test and heal prick, through every change of the nasal gastric tube. I even went through the night every 3-4 hours for her feeds. Even though she was getting fed through the tube every second feed I attempted to breast feed to work on her latch the alternate feed. When she was tube fed I pumped and pumped. My milk came in quick and fast and stayed golden yellow for a lot longer than normal which meant she was getting what the nurses called liquid gold. My nipples weren’t as great as my milk. My daughter being so tiny couldn’t latch properly and I was in toe curling pain every feed, every pump and my nipples began to crack. I was told how amazing breastfeeding would be but the pain lasted for almost 6 months and I just kept pushing through wanting to give my daughter the benefits from the breast milk no matter the cost to my body.

At day 3 we got to give her, her first bath. It was a team effort and the nurse showed us what to do. I was still in a lot of pain standing so her father took over and did her bath. I watched in awe as he cleaned her up and I helped as much as I could. He went to work not long after and I had to deal with the first poo explosion. Now for such a tiny adorable baby she had some power behind her. I seen her little face contort and stepped aside just on time as poo went across the small area we were in, not hitting the floor but the wall and chair across from us. I was grossed out but slightly impressed she managed that. It made me more careful when I changed her knowing she could projectile poo across the room.

It was a relief when my parents arrived from interstate and having that extra support. At day 4 the hospital said I would be discharged the next day as they needed my bed. This meant I would be going home without my baby. I thought it was hard being down the corridor from her never mind being 40 minutes away. That night and next day I didn’t leave her side held her as much as they would allow as she needed the steady temp from the incubator and had to go under the lights a few times as her jaundice levels went up and down. Her father visited intermittently as he was finishing his honors thesis and was still working so my parents came down every day and waited for me while I went in and spent time with Abigail.

On day 5 when I was discharged I silently cried all the way home. We had a late dinner together and my daughters father held me as I cried for hours telling him about how I felt I had failed our daughter.

I got up through the night to pump so I could take in the milk to the hospital every day. I never really slept properly. Everyone was up at the crack of dawn and my parents took me down every morning and afternoon and my daughters father took me when he could around work and finishing his thesis. Every day she was weighed sometimes she would have a small gain and the days she had dropped weight it felt like we were getting further away from ever getting her home. The days felt like an eternity. While she was there time was tortuously slow.

I was there for the morning and lunch time feed then would go home some days to try rest then be back for the evening feed. It worked out I could be there for 4 feeds a day my parents just waited patiently for me, always being there in case I needed to talk to them and lean on them for support.

I hated it when the staff changed her tubes and listening to her little screams. It was horrible to watch but knowing it had to be done as breastfeeding took a lot of energy from her and the tube feeds didn’t. I cried with her every time and held her tiny hand and stroked her little face to try reassure her mummy was with her through it all.

The days melted into one another the sleepless nights, the pumping, the trying to feed and wanting to never let go of her. The feeling of when I got to hold her skin to skin and then the pain all the way to my soul when I had to go home and leave her there. It got harder and harder. I watched other families come and go some for a few days some for almost a week. Seeing their happy faces when they got to take their little bundles home. While I was stuck in the NICU bubble as I pumped and fed and living cuddle to cuddle with the endless empty nights of missing her. The nurses were amazing they could see the affect it was having on me they were always supportive always listened.

At around 2 weeks they spoke to me about coming in and staying for a few days on the ward with Abigail. While there she had to have consistent gains for a few days then she could come home. That night I was so excited when I went home It was the first night at home I felt hopeful and happy. I packed some stuff so I could go stay and early the next morning I got a call saying she had a drop in weight so I would not be coming to stay. I was shattered, the hope that we were close to getting her home was gone and I felt we were back at square one. My mum also had to fly home for work and left my dad with me so he could drive me back and forth to the hospital and help out.

That day visiting was the worst I wouldn’t be staying and spending the night with her. Instead of going back and forth twice a day I couldn’t stand even that small gap so I was dropped off in the morning and would not go home until after the 8-9pm feed.  This was my new normal. I didn’t want to go home at all it was getting harder to leave the longer she was there. You would think it would get easier but It never did while she was in there.

After almost another week passed I got the call I had hoped for. I got a call early saying they had a bed and they were going to take her feeding tube out and take a chance on us and put us together on the ward. She was slow to put on weight but was maintaining her temperature now and was almost 2 kgs. The hope being she would hit 2kgs while I was there. It felt like all my christmas’s had come a once. I grabbed my bag still packed from before and my dad and daughters father took me upto the hospital to stay. I got settled in my room and went and got my daughter in the plastic bassinet and wheeled her down proudly to my room. We were so close to freedom from the NICU bubble we had been in for 3 weeks.

That first night was heaven being with her. I kept being told the first night with a newborn was the hardest but this was the first time I had ever had her with me constantly, no walking down the corridor leaving her in the neonatal unit, no going home and leaving a piece of me. We were together finally and I was not missing a second. The first night was bliss but the first weigh in the next morning she had not gained she had not lost anything either. It was crushing I kept thinking they will send me home and I will be away from her again. The nurses stayed positive and told me to keep doing what I was doing.

The second night felt like I was on borrowed time until I was sent away again. The second morning on the ward she had a very small gain but it was a gain. They said I could stay another night and depending on what the weight was the next day would be the deciding factor on whether we went home together or I would be sent home without her to try again another time. My dad had to fly home that night as his flight was booked around when they thought I would stay the first time thinking that Abigail and I would have already been home. That night I held on extra tight to every second I had with her. Took in her little face and smell of her as if to burn these moments into memory.

The next morning I was so anxious when they wheeled the scales in, I closed my eyes and hoped with every fiber of my soul she would get to come home. They placed her on the scales so gently and I looked at the nurse as her face lit up. “Shes gained and its a big gain” those words were everything. I knew we were getting home and we were going home together. It was over, it was finally over, this dark cloud of the unknown was shifting and we were going home. I cant even begin to describe the relief I felt. For the first time in weeks when I cried it was happy tears.

Those 3 weeks she was in neonate it was one of the hardest things I had to go through. The pregnancy was hard with all the pains and bleeds. The emergency C section was hard not knowing if she would make it. The hardest thing out of all of it was the 3 weeks Abigail was in the neonatal unit. The quiet, the constant of being stuck in my own head blaming myself even though it was something I had no control over what had happened, took its toll on me more than anything. While she was in there I had constant well wishes from friends but they always asked when is she coming home. Every txt message every phone call took a piece of me and made me ache with the not knowing when I was getting to take her home.

After going through the experience I want people to know It is so important to support friends and family going through the NICU bubble after having a prem baby or baby with complications. Be there and listen but never ask when baby is coming home, as they will shout it from the rooftops when they are getting to take their baby home. They don’t need the added stress and heartache that comes with constantly being asked. Bring them home cooked meals and things that will comfort them. As behind all those photos and smiles of new parents on social media are fears for their newborn and the not knowing when they will all be together. The lonely nights of being away from the little life they created they ache to be with. It is an extremely hard and lonely time. It is a time where both parents are at great risk of post natal depression. So support them. Even once babies home if they want visitors help them after such a traumatic time. Do some dishes for them, cook some food, help take some of the load off them.  Even when they get home it will still weigh on them after going through such an experience. Supporting your family or friends that go through this experience shouldn’t stop when they get out the hospital as its a long road of healing after and they need a good support system.

 

Life’s a journey – part 2 – Emergency C Section

……As the nurse stood there shaving the top of my lady jungle I was scared about what was to come. It was a laugh or cry moment. I normally revert back to humor when nervous so joked and asked her “are we going steady now?”. The nurse could see what I was doing and cracked a few jokes in retort to mine to lighten the mood. She helped me get in the gown and my hands began to tremble.

As we opened the door to the room I had been prepped in there was another nurse waiting for us in scrubs. He had a wheelchair and asked me to hop in. They put my stuff in a bag and we immediately headed to theater. We went down halls with no windows and so many lights. I remember one flickering, distracting me if only for a second of my impending fate.

I kept thinking this is not the birth I had planned. I had planned a water birth minimal drugs as I didn’t want the baby affected. With my partner and Doula there to support me. A Peaceful environment with my relaxing play list I had put together. I had only packed my baby bag days before hand still sitting in the unfinished nursery not realizing it would be needed so soon.  I realized we hadn’t even contacted my Doula in the rush of everything happening so quickly. On the grand scheme of things and how fast everything had gone that was the least of my problems. In a perfect world it would have went according to plan. Unfortunately we don’t live in a perfect world and it’s always throwing curve balls our way. All we can do is ride the wave and hope it all turns out ok.

Entering the surgical theater I wanted to run I wanted to pretend none of this was happening. It was all too real. I felt sick and I wanted to throw up. I smiled politely at the staff but inside I was freaking out. I thought to myself this shouldn’t be happening this was a nightmare. I had to concentrate on my breathing to try ground myself as I didn’t want to make anything worse for my baby, even if I was freaking out and scared for her. I asked the staff what happens now? They said they didn’t have time for an epidural that scared me even more, and I thought to myself how bad is this? Is my baby going to survive? is she already dead?they already lost her heartbeat once. If they don’t have time for an epidural this situation must be really bad. I asked if I could be knocked out as it was all too real, but they said it would be too dangerous as anything I have passes to her. They said they would do a straight spinal block. No numbing just a big needle straight in my back. If I thought I was freaking out before I was really freaking out now. The nurse could see I was obviously scared and started chatting to me to take my mind off it while they prepped the drugs for the spinal block. I wondered if it would hurt and the doctor told me not to worry as “he makes a great cocktail”.

They leaned me over a cushion while I held my partners hand. I felt the coolness of the liquid they used on the area tingling cold on my skin before inserting the needle. The cold of the liquid gave me goosebumps. It was the most unique pain I have ever felt when they put the needle in. Too scared to move but in pain I let out a small noise and squeezed my partners hand while tears rolled down my cheeks. After it was done they lay me back on the bed and got me in what I called my Jesus pose my arms were out and I could see them moving my legs but I could not feel them. It was bizarre to see part of my body moving but not feel it. Then the screen went up. The nurse next to me held one hand while my partner held the other. I thought to myself laugh or cry so we reverted back to humor quoting silly lines from tv shows like the mighty boosh, trying to distract myself from the fact my body was being cut open behind a screen.

I felt some tugging that brought me back to reality. I asked the nurse if that was normal and she said yes and made sure I wasn’t in any discomfort. Then came some immense pressure, I felt winded. When I caught my breath I yelled out what are you doing? I will never forget the face that popped up from behind the screen. He looked at me and in a calm voice explained they were pushing the baby out. Confused I said don’t you just pull it out? I seen his eyebrow raise and he said no we dont just pull it out. His head still looking at me went back down behind the screen. It was a rightio as you were moment. I felt more pushing but kept telling myself what they were doing was getting my daughter out. I had to grit and bear it and wait. Then I suddenly felt lighter and a tiny angry little squeal was heard. She was alive my baby was ALIVE. It was the most beautiful little noise I ever heard. Relief washed over me. I watched as they immediately moved her to check her over. I could see she was absolutely tiny. I had never seen such a small baby before. One minute she had been in me the next she was out naked and screaming. She was tiny perfection. They checked her over thoroughly and said they would be moving her immediately to the neonatal nursery and asked if her father wanted to go with her. He chose to stay with me as I still had to be stitched up.

Getting stitched up felt like forever. The stitches took longer than the surgery as they had to do 3 layers of stitches. The uterus, the muscle wall and then the skin. I was growing impatient but the nurse kept talking to us to distract us talking us through what was going on behind the curtain. By the end of it I was wondering with all the stitching if surgeon’s maybe moonlight as seamstress’s. When they finished the hundreds of stitches I was wheeled into recovery. I kept asking if I could go see my baby? was she ok? what was happening? They just kept distracting me with questions then every now and then asking if I could feel anything yet. Then to my surprise they pulled out a zooper dooper (icey pole) and they were testing my legs to see what I could feel it. I couldn’t yet but I sure wanted to eat the zooper dooper ( I ended up eating 3)  As the spinal block faded I started to shake violently and had a bit of a rash. I was kept in recovery until the block wore off and I stopped shaking.

I was not sure how much time had passed by but all I wanted was my baby. Part of me was missing and in another part of the hospital. I longed to be with her, with every fiber of my being. When they wheeled me to my room on the gurney I asked the nurse what can I do to be able to see my baby? I was told until I could get in the wheelchair I could not go up to the neonatal and see her. I was willing to do whatever it took. They wanted me to rest for a bit but all I wanted was my baby girl so they got me some strong painkillers and warned me it may be very uncomfortable to get in the chair as I had just had major surgery. I didn’t care, I took the medication and waited anxiously for it to kick in. I was so close to being able to get up and see her. Then my world went fluffy….. whatever the painkiller I had been given was , I was now floating on clouds. My daughters father looked at me and asked if I was ok? I was wonderful no pain not a care in the world. The nurse walked in and had a half smile on her face ” I see the medications working how you feeling” So I told her I was flufffyy. She laughed a little “you ready to go in this wheelchair and meet your baby?” to which I responded “BABIES all the BABIES” the nurse and my daughters father both burst into laughter at that. I got off the bed and onto the wheel chair with a bit of help. Even in the haze of the fluffyness I felt excited and scared I was finally going to see my baby.

Down the corridor and through the double set of locked doors we entered the neonatal nursery. There were incubators and plastic tilted bassinets. A small room filled with tiny babies and that sterile hospital smell. All I wanted was my baby. They wheeled me over to her incubator. The incubator had little windows I could open and put my hand through. I burst into tears as I held my daughters perfect little hand for the first time “hello Abigail I have been waiting to meet you”. Seeing her for the first time up close she was so tiny. Her skin looked thin and I could see little veins and the pulse on the soft spot of her head. The nurse told us she weighed only 1.72kgs (3.79lbs) I wanted to hold her and to my surprise and delight the nurse got my baby out and put her in my arms for the first time and helped me hold her. It was everything I imagined and more nothing ever prepares you for the moment, the euphoria, the overwhelming love that hits you. There aren’t words that truly cover the feeling you have when you hold the life which you grew and created for the first time bundled in your arms. Everything else melts away and its you and this little soul. In that moment I pledged myself to my daughter. To do everything I could so she grew up happy and healthy. Where she goes I go.

In that neonatal nursery we started the longest 3 weeks of our lives. We entered the NICU bubble………………