Freya’s Story – Born at 29 weeks

29 Weeks Pregnant

29 Weeks Pregnant

I’d like to start with an apology, for some people this may get a little bit boring, but the idea behind Freya’s story is to give some sort of support to other parents who have premature children. Even if it helps one person then i’ll be happy i wrote this. I spent a lot of time reading people’s blogs and forums to see what other people were or had gone through with their premature baby, the more detail the better. If you just want to skip to the part where Freya was born i’ll allow that, just scroll down to the RVI Keepsake Diary!

28 weeks pregnant today wahooo, one week closer to seeing our gorgeous little girl, it was the 21st February when i said this to myself. What was she going to look like, would she look like me and would she have her daddy’s ridiculously tidy traits? I had so many questions going around my head and i was so excited, so was Mark, Freya’s daddy. I became a little bit obsessive with the number of apps on my phone and tablet, what was she doing today, well at 28 weeks she weighs about 2 pound and can now blink too. This was a daily occurrence, as soon as i opened my eyes on a morning i would grab my phone to have a read.

I was enjoying pregnancy and seeing my bump grow, i loved having a bump and i loved it when she would start kicking around. My pregnancy had been pretty much straight forward at that point, i did however have my periods for the first 4 months. Apparently this was normal, my pregnancy hormones weren’t strong enough to take over my own, but they stopped eventually. I had no sickness or headaches, no cravings, i just liked to eat lots and now had the perfect excuse ‘this cream cake is for the baby’, yeah right!

On the Sunday that week Mark was out with his friends and i was just pottering around the house, having a lazy Sunday when i felt trickling down my leg like i had wet myself. I hadn’t felt that before and i had no idea what it could be. It wasn’t much, maybe a few tablespoons, so still quite significant. I had read about losing control of your bladder when pregnant, this was not a good thought, i still had 12 weeks left to go. It did cross my mind that it could be my waters but dismissed it and started googling what it could possibly be. Google was my best friend and biggest enemy during pregnancy, i know you shouldn’t google questions as it can bring up all sorts, but i just couldn’t help it. Someone somewhere had probably had exactly the same issue as me and stuck it on a forum on the world wide web. Google told me it was probably my bladder but i couldn’t stop thinking ‘what if it is my waters breaking at 28 weeks’. I decided it wasn’t worth taking the risk and contacted hospital who told me to go straight there.

I spoke to Mark who told me he would come straight home but i dismissed this and told him it was probably nothing but just incase i would get it checked out, really i was praying for everything to be ok.

When i arrived at the hospital the midwife checked me over and hooked me up to the monitors to check i wasn’t having any contractions. She explained that 6 women had been in with the same problem and only one was in labour so it was probably nothing to worry about. After a while being hooked up and after checking for leaking fluid she assured me i was fine and it was most likely my bladder and i went home.

Throughout that week i continued to have small leaks, i just felt that something was wrong and that it wasn’t my bladder, but then i’d talk myself round believing i was just a worrier and everything was fine. I did google some more, it was an addiction i couldn’t help it, the different forums i visited stated that usually the liquid would have an almost sweet smell. I decided to test that theory and a state of panic came over me, the liquid i was leaking had a sweet smell, it was definitely not the smell of urine. I decided to monitor it over the next couple of days before taking myself off to hospital again. I felt like one of those paranoid expectant mothers that are absolutely fit and healthy but believe something is wrong.

The next day i felt very poorly, sickly, tired and exhausted, it was unusual for me as i had been fighting fit the whole time. I also had some lower back pain but assumed it was because my bump was growing everyday. Walking around the supermarket i could feel myself leaking a whole lot more than normal, i left my shopping and went home. I even went to sleep as soon as i got home, i never nap during the day, i just didn’t feel right. Oh by the way, that was a Friday which meant one thing, i was now 29 weeks!!

The Actual Football Match

The Actual Football Match

I had a football match to attend that night, my son was playing. Now my first child, Liam, he’s now 14, he was born 6 days early at a healthy 8lb 7.5oz, no issues at all with him. I was only 17 when i had Liam, but again, i loved being pregnant. That night at the football match it was cold, freezing and little did i know, i was in early stages of labour.

I was awoken early hours to pains in my tummy, similar to period pains. Now i don’t know what i was waiting for but thought, just ignore them, they will go away. I think i knew something was wrong but didn’t want to believe it. The pains didn’t stop, if anything they were getting stronger so i decided to time them, they were coming every 7 minutes. My heart sunk, it cant be happening, i can’t be in labour, it’s too soon. I woke up Mark and said i was going to go downstairs as i had a tummy ache. I knew he would jump up and say he was coming down with me, i could tell he was worried too. We phoned University of Durham hospital who asked us to go straight up to be checked out. We left Liam asleep in bed thinking we’d be back in under an hour, that did’t happen.

We were welcomed by a very friendly midwife or do i say midperson as he was male? Again, i was hooked up to a machine but there were no signs of contractions, he explained it could be my pelvis, pelvic girdle pain i think he mentioned. I felt a huge sigh of relief, i could handle pain for the next 11 weeks as long as sausage was ok, this was the nickname given by daddy, i don’t know where it came from but it has stuck. The consultant then came into the room and they discussed my results as there had been changes whilst i was hooked up. The consultant was also friendly, she explained she just wanted to do a quick internal and make sure everything was ok, then those dreaded words came ‘your 5 centimetres dilated, your baby is coming today’. I couldn’t breath, i didn’t know what to think and poor Mark was stood beside me looking a little confused. I turned to him and just burst into tears ‘it’s too soon, it’s just too soon’. Mark held me trying to assure me everything will be ok and the midwife was trying to help explaining 29 weeks was ok and not to be too worried just yet. I pulled myself together, i had too, i was going to have a baby today, i didn’t know what the outcome was going to be but it was going to happen, i would deal with it one step at a time.

I was given a steroid injection to try and help the lungs with coping when she was born, they were hoping i would have time to get a second injection of steroids because at 29 weeks, her lungs would still be very underdeveloped. The size of the needle was huge and it was going right into my backside, i knew it was going to hurt, and i was right.

Myself and Mark were introduced to our midwife who would be with us the whole time and also a student midwife, both were very friendly. We were taken into a delivery room and told that a number of people would be visiting us to explain exactly what was going to happen and what to expect. Then we were left alone, Mark was great, my rock, kept his calm the whole time and was strong and positive, i knew this was for my benefit, we had no idea what to expect that day.

We contacted our parents, i knew my mam would be straight there, it was still early morning, we needed Mark’s parents to go and see Liam as he was still home alone sleeping. He was still asleep when they arrived and they asked him to contact Mark, Mark explained that his baby sister was coming early, luckily Liam had no idea this was a worrying thing, he just thought he was going to meet her a bit sooner, which was probably for the best. We contacted work, close friends, just people we thought should know. When my Mam arrived Mark popped home to put together a few bits, i was only 29 weeks, i didn’t have a hospital bag ready, i barely had anything ready, i still had 11 weeks to sort it.

Mark’s mam told me weeks later that when Mark arrived home to collect some bits, he checked Liam was in his room out of the way and then broke down in tears, he wanted to be strong for me but was terrified of what was going to happen. When he eventually told me he had broke down he explained that he didn’t realise having a baby at 29 weeks was anything to worry about until i turned round to him in the hospital room that morning and said those frightening 3 words ‘it’s too soon’. Mark was very aware of my obsession with pregnancy apps so knew i was aware of what was happening with our baby every single day. Mark liked knowing too, he would text me from work on a Thursday after receiving his weekly NHS email to say what our little girl was doing that week, he just didn’t go into as much detail as me.

Mark returned to hospital and the pain was starting to become noticeable but was nothing i could’t handle, our midwives kept us informed at every stage, the student midwife never left my side. They explained i needed some strong antibiotics through a drip, the reason for my feeling poorly on the Friday was due to a serious infection i had, she explained that my blood results had come back and CRP levels which should be 0 to 10 were over 200, there was a possibility i had passed it on to the baby too. She would also need antibiotics when she arrived. As if there wasn’t enough to worry about, would she be strong enough to fight off an infection?

Consultants, midwives and nurses had started to come in and speak to us and check my contractions. One Consultant in particular was very helpful and empathetic, he explained that when baby was born she would be around 2lb’s in weight, she would almost definitely need help breathing as her lungs would not be developed and there had only been time for one steroid injection. The hospital i was at did not usually deal with babies born before 30 weeks, this did scare me a little, ok a lot! Ideally i would have been transferred to the Royal Victoria Infirmary at Newcastle (RVI) to give birth there, but they feared i would give birth in the ambulance and that certainly was not worth thinking about. The consultant explained that they are equipped to look after premature babies but hospitals that specialise in this area may request that she is transferred to them as they have a special nutritional drip which is used to feed her via a longline. He later came back to explain he had contact the RVI and they requested that when she was born to be transferred straight to them.

The nurses from the neonatal unit at Durham hospital which is where i was giving birth, came to see me and explained that after the baby was delivered she would be placed into a plastic bag, almost like a carrier bag. This was to preserve her heat as she was too small to do it on her own. She would be placed straight onto me (in the carrier bag) but would have to be taken straight away for the consultants to see to her. She would then be taken straight to the neonatal unit and placed in an incubator. They asked Mark if he would like to cut the cord but he was too afraid he would do something wrong and felt more comfortable with the specialists cutting her cord.

There were different consultants that came and told us the same thing but one also explained that it was common for premature babies to have a bleed on the brain, this worried me and Mark even more. What information do we process first, a serious infection that i may have passed on, a possible bleed on the brain or the fact she most likely wont be able to breathe on her own. I just had to focus on giving birth and deal with everything else one step at a time.

Around 10.30am the pain started to increase, the midwife wasn’t happy giving me pain relief as she thought it may distress baby so gave me a lower dosage. It worked for around 10 minutes but then wore off completely. I just wanted to give birth, each time i would be examined i was a little further dilated but not fully. Then at around 12pm i was in real pain and just had the almighty urge to push, i needed to push. Checked out again i was fully dilated, it was time, she was coming now. Nervous, worried and excited all at the same time,we were going to see my little girl.

Now i didn’t count how many people were in my room when i was giving birth but i would estimate around 12 to 15 consultants, nurses, doctors and midwives, no time for modesty. My Mam and Mark were on either side of me holding my hand. They pulled in the machine and equipment needed for when she was born and her journey to the outside world to meet mammy and daddy began. I’m kind of glad i was in so much pain as it took my mind off the worry and possibilities. Now for some reason people think because she was so small that labour must have been a breeze with limited pain, no way is this true. If anything you have to push even harder to get the little bundle out, they have no weight behind them to help labour along. I will say that it was quicker than giving birth with Liam, at 12.55pm Freya Lillie was born. Delivered straight onto my tummy in the plastic bag she was here, there was no noise but i could see she was alive so i was happy. She was huge and had a head full of black hair, where was the barbie doll i was expecting, she was like a proper baby. Weighing in at 3lb 5 oz the doctors said she was a really good weight which would give her the best chance possible.

My Little Impatient Freya

My Little Impatient Freya

It was only a matter of seconds she was on me and she was taken to the machine with the consultants who had to resuscitate her, but then the best noise ever, i heard her cry. Mark broke down in tears, the student midwife broke down in tears, i was still giving birth to my placenta, no time for tears just yet. When my placenta came so did a wave of blood, it was everywhere, my placenta had abrupted and blood had been pooling inside of me, the midwife explained that it was probably a good thing that Freya was delivered that day as it could have turned out a lot worse. There is still no reason to why i had a premature baby and i know i will never know now.

Freya was taken away and i was cleaned up, couldn’t believe my little girl was here, i was so happy, but still very anxious. Mark went straight to the neonatal unit to see her and brought back a picture for me to see. It was a little bit frightening to look at, she had a black eye, swollen body, and wired up to tubes and wires. Mark was smiling when he showed me, he said when they tried to put the ventilator on her to breathe for her, she cried and they had to remove it. Apparently your not supposed to be able to cry when on a ventilator, so they put her on CPAP. If your baby needs a lot of help they will be placed on a ventilator, the next step down is called a CPAP and when they show signs of managing a bit better they go onto oxygen which can be increased and decreased.

When i had been cleaned up it was time for me to go and see my little girl, feeling very weak, i hobbled down the corridor with Mark and his mum and dad. She was tiny, lying still on her tummy, inside an incubator, hooked up to wires and tubes, with alarms sounding. The nurses were great, said she was a right little fighter, it made me smile just because they didn’t seem worried. They explained that she would be transferred to the RVI that day, a dedicated team of specialists would arrive to collect her and take her in an ambulance and she would go straight to intensive care.

The midwives weren’t very happy at discharging me as i was still a little poorly and weak but knew i needed to be wherever my baby was. When the team arrived to take Freya back to the RVI they explained fully what would happen, it felt like my whole tummy was in knots even though i knew i would see her in a couple of hours. She was going on her own without mammy or daddy, just someone that loved her.

It was quite late when we arrived at RVI straight from the hospital, she was in a tiny room with only a few other babies. Because it was intensive care each nurse had one baby to look after and there would always be someone in the room with the babies. We just sat and watched her, doctors and nurses came to speak with us and said she was a good weight, she would be having daily blood samples taken to test for infection and other important factors that could impact on her health. In her incubator we were told we could touch her, it was like touching a feather. Scared to touch, scared we would hurt her, scared she might be in pain but we had to touch her as thats all we had to show her mammy and daddy were there and they loved her very much.

The RVI have on site accommodation ran by a charity where parents and family can stay to be close to their babies should they need to get to them quick. Unfortunately there were no rooms available so that evening i had to leave her to go home, it was harder than i ever thought possible. I did want to go home and see my other baby too although i knew he would be ok.

The next day we were up bright and early and straight to the RVI, there she was, hadn’t moved a muscle and had a steady night. I rang before going to sleep just to make sure, i continued this nightly phone call along with a morning phone call every day til she came home.

I decided to keep a diary at the RVI, i knew i was going to be there a while and i thought a log of her progress might help. I only wrote a couple of sentences each day to say what was happening and just to remember. When i read it back now it just makes me remember how much of a little fighter she is.

My RVI Keepsake Diary

02/03/14 – Today i had my first cuddles with mammy, we love kangaroo care!

Kangaroo Care - Our First Cuddle

Kangaroo Care – Our First Cuddle

Kangaroo care involved me placing Freya down my top against my chest, it would make her feel secure and safe and help regulate heartbeat and breathing. It was the first time i got to hold my baby girl, i was scared because she weighed nothing and was so fragile but she seemed so content. They explained for kangaroo care to help you would need to do it for around 30 minutes each day. I couldn’t take Freya from her incubator too much because she would use too much heat and she couldn’t regulate her own body temperature, that was the reason she was in an incubator. As she was so small, she would also burn too many calories outside of her incubator, she needed to save her energy to get big and strong.

I think most mam’s take it for granted that they can pick up their baby whenever they want especially if they need some love. So it was hard that my baby needed me more than ever and i couldn’t just pick her up and give her a cuddle.

Freya’s blood results came back and showed that there was no sign of infection but she did have jaundice and was put under blue lamps in her incubator. It was nothing to worry about and her levels would be checked each day.

03/03/14 – I have come of my CPAP and have been moved to the Blue area

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This was music to our ears, she was well enough to be moved into the Blue area (the RVI call their wards for sick and premature babies colours, intensive care is Red area, the high dependency is Blue area and then you have Green which is pretty much going home soon). We knew she was a little fighter, she did lose some weight and went down to around 3 lb, but this was expected. She was now just on oxygen too, it was great progress.

Everyday doctors and consultants would update us on her progress and we would ask them our questions, we knew they couldn’t answer silly questions such as ‘How long will she be in hospital?’ but we gave it a shot. The nurses would spend time with us and explain everything they were doing and would sit with us when we were carrying out Freya’s cares.

Freya’s cares involved myself and her daddy getting to change her nappy and give her a wash, i loved it, i felt like i could look after my baby even if it was only once every 4 hours. She couldn’t come out of her incubator so we would have to use the little arm holes, but we soon got the hang of it.

Freshening up Freya's Mouth

Freshening up Freya’s Mouth

The nurses would start different conversations with us and try and keep things light hearted, they were very friendly.

A nurse who specialised in breast feeding came to see me when Freya was first admitted to the RVI, i said i wanted to breast feed and now that Freya needed my breast milk more than ever there was no other option, this was my way of helping her too. Now because Freya was so premature, expressing breast milk was not easy. I would sit and massage my breasts and try to express even just a small amount, but it was just a few drops here and there. I wasn’t going to give up though, we used the tiny drops as mouth care and used a cotton bud to moisten her mouth with it. She seemed to like it a lot! After around 5 days of trying it finally started to come in thick and fast, i was so proud of myself, Mark was so proud too, he knew it was important for me to do this. He would come with me and just comfort me, try to relax me by rubbing my shoulders, so he was happy when it finally worked, mainly because he could see the sense of satisfaction i had. Every 2 to 3 hours i would take myself off into the breast feeding room and express as much milk as i could, even during the night when i was at home my alarm would go off, it was tough going but i was determined. It actually got to the point when the hospital said Michelle we can’t take any more milk from you, our freezer is full, mainly from your milk, just start storing it at home.

Freya was still too young to try and take milk from the breast, she didn’t yet have the ability to suck, swallow and breathe all at the same time, it wouldn’t come until she was around 34 or 35 weeks and she was only 29 weeks. It would be a while before she could even attempt it, but i was happy knowing that she had enough milk to keep her going for a while.

At that point the doctors were waiting for my milk, Freya was still on her TPN nutritional drip but needed milk and they wanted to wait for my milk before introducing formula. Some of the consultants came to talk to us about a SIFT trial they were carrying out, it was some research Tiny Lives charity were involved with that looked at how milk was given to a premature baby. High volumes slowly or low volumes fast to see if they could handle their milk without being too sickly. Their digestive systems were still developing, both Mark and I thought it was a good idea and agreed to take part in the SIFT trial. They were very informative, put no pressure on us and explained what would happen. Now i may be wrong, but i think because of that trial, Freya has never been a sickly baby. She tolerated her milk excellent and never had any issues with her milk. Her milk would be fed to her through a drip from one of her many tubes.

On day 3 i was also offered a room at Crawford House so i wouldn’t have to leave my baby. I went to see the volunteers who ran it, it was literally a 2 minute walk from Freya. They were very friendly and showed me all of the amenities and then my room. I don’t know how many women have the day 3 baby blues but mine hit badly that day. I couldn’t stay in the little box with a bed on my own, it brought me to tears just thinking about it. I explained to Mark i couldn’t do it, i felt guilty that i had the chance to stay beside her but i couldn’t face the thought of being on my own away from Mark. He had been stitched to my side since going into labour, he wanted me to come home, i think he thought i wouldn’t be able to handle staying on my own and kept saying we could be back at the hospital in 20 minutes if needed. Plus someone else who lived further away would appreciate the room more as they were like hotcakes!

06/03/14 – Daddy’s gone back to work, double kangaroo care with mummy

Loved Skin on Skin

Loved Skin on Skin

So it was back to work for Mark, we agreed it would be better for him to take time off work when Freya finally got to come home. All the nurses would keep me company and i had visitors, my mam and Marks mam were regulars.

Blue Jaundice Lamps

Blue Jaundice Lamps

Freya was still on her jaundice lamps and still having her bloods taken every day, they would have to squeeze tiny drops of blood from her feet, by that point she wasn’t that bothered and she let them get on with it. One thing both Mark and I were waiting for was her first dirty nappy, the dreaded black tar! I kept questioning the nurses ‘why hasn’t it come yet’ ‘Is it normal that she hasn’t had a dirty nappy yet’, the poor nurses must have been sick of my non stop questions, but i could never tell, they answered them all and were always very friendly. Apparently it was fine that she was 6 days old and had no dirty nappy, they would start to look into it if she still hadn’t had one in a few days, but…

07/03/14 – It’s arrived!

Not usually what your waiting for from your newborn child but Freya’s first dirty nappy arrived, hallelujah! She had also been weighed and it was looking good, she wasn’t quite at her birth weight but it was slowly creeping up, now at 1478grams.

One thing that worried me every hour of every day were Freya’s alarms continuously going off. The nurse explained what the alarms meant so i had a better understanding. On the screen hooked up to Freya were her oxygen levels, if her oxygen levels were to fall below around 86 then an alarm would go off. It’s important to say that because Freya’s lungs weren’t fully developed, she would lie on her front which would help her with her breathing. As soon as she would be put on her back or taken out of her incubator, the alarm would sound. The doctors told me that they would have to keep moving her position as her lungs needed to get stronger and she needed to be able to breathe whilst lying on her back not just her front.

So Many Wires

So Many Wires

Also on her screen was her heart rate, this would also alarm if it went below or above a certain range that the doctors had set. Then lastly was the amount of breaths she was taking, again it would alarm if it went outside of the range set by the doctors.

It was mainly her oxygen levels that would drop, nurses and doctors called them desaturations but in short, desat’s, i would go home on a night and still hear the alarms. They assured me they would improve and explained even our own oxygen levels drop when we eat or when we make sudden movements. This did make me feel a little better, i just hated that an alarm was going off because it meant something wasn’t right.

08/03/14 – Sorry mammy, i forgot to breathe

Freya’s oxygen intake was down to the lowest it could be at 0.01 which was great, almost there being able to breathe without it. I couldn’t wait for the day she would stop desating and her alarms would stop beeping. That day on more than one occasion her alarms went and her oxygen levels dropped dramatically as did her heart rate, it was very frightening, i mentioned it to the consultant who explained that some premature babies have Apnea and Bradys which basically means they forget to breathe and their heart rate reduces dramatically. In some cases babies would turn blue and would need gentle stimulation to remind them to breathe. They started Freya on daily caffeine shots via her feeding tube which would help keep her stimulated so she wouldn’t forget to breathe. It was so worrying, it was like taking one step forward and two steps back. When could we get excited for our baby girl coming home and when could we just be a normal family with our baby girl. It was still breaking my heart every night leaving her, in her little box without mammy or daddy to watch over her. I just wanted her home more than anything and it was killing me not being able to do all of the mummy things, taking her out in her new super duper pram to show her off to everyone or just giving her a cuddle when i wanted. I couldn’t even dress her, she was only allowed a nappy on.

My Two Babies

My Two Babies

It took a while for big brother Liam to come and visit, he got a bit of a shock when he saw the photo of her in an incubator wired up to lots of machines. Mark had picked him up from school and brought him in to see me and Freya. He just kept staring at her, couldn’t believe how tiny she was and there was no way he ever wanted to hold her as he might break her. I got her out of her incubator for her afternoon kangaroo care and he just sat beside me. Her kangaroo care was in the morning and in the afternoon and i would spend around an hour each time, i loved it and she was so settled. Even daddy did kangaroo care and she was so settled for him too, you could feel her little chest working so quickly against your own chest, it was a little scary but we got used to it.

10/03/14 – My arms are free

Daddy Cuddles

Daddy Cuddles

Freya had so many wires and tubes it was hard to know which was what, but that day her TPN longline was coming out, her little arms which had been taped up to stop the tube coming out was now free. It was a step in the right direction, she was also tolerating her milk so well that they increased it, she was on 8.5ml per hour, i know, massive! The doctors and nurses were really happy with her progress and each day they would say there were no real concerns, we just want her to keep growing and putting on weight. And then the news came i was waiting for, we can transfer her back to Durham. This news meant that they were happy with her progress, i was on cloud nine. The hospital at Durham was literally round the corner from where we lived so knowing that i could be there in a matter of a few minutes made it so much easier.

Whilst in the RVI we realised that so many others were far worse off than us, over 100 days one of the babies had been in for. There were babies born at 23 weeks, some born with organs born on the outside of their bodies and some babies whose mum was in hospital many miles away so they were on their own. The wards had stories and pictures of the babies who they had helped, i couldn’t believe there were babies born at 23 weeks, the survival rate statistics i had read up on gave babies at 24 weeks a 50/50 chance of survival as they are so week. For babies born at 29 weeks statistics showed survival rates at around 80 percent, which was good but to me 20 percent was a big number.

11/03/14 – Off to Durham we go

My girl was already for the off, all her checks had been carried out, she had been put into an incubator dedicated for transportation with all of her monitors still attached. I was quite emotional leaving all of the staff, they had been so informative, friendly and i was spending full days with them every day. They all came to say goodbye to Freya and myself and she was taken away in the ambulance. There it was again, that horrible knot in my tummy, but i knew she would shortly be so close to home. That was one step closer to getting her home, so it was a step in the right direction.

When she got to Durham she was in a little room on her own, this was for infection control. Still in her incubator and alarms sounding more than usual. The nurses explained that sometimes babies don’t travel very well and it can cause desats but she would be fine the next day. I didn’t really like that she was in a room on her own or that she was desating so much so i stayed quite late that night. I just sat and watched her and played with my best friend, google! Mark went home to see to Liam, although 14 he still needed us too, sometimes Mark’s mam would pick him up and make his tea or Mark would meet him after school and bring him into hospital. A lot of my friends would text and offer to pick him up after school or take him home after school.

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The next day Freya had settled down and had a steady night, the nurses worked very differently to the RVI. This was the place where they made sure babies were ready to come home. As a result Freya came off her oxygen that day, her alarm didn’t really sound more than usual unless she was turned over. They had to turn her over during the day because if left on her front she could develop problems with her hips and may not be able to walk properly. She would pretty much sleep all day, the nurses said it was just like she was still inside me in her warm incubator. She very rarely opened her eyes so when she did it was like panic stations, ‘get a photo quick, her eyes are open’ she never ever cried either. It got to the point when we couldn’t wait for her to be like a normal baby, crying as she was hungry. She was still on continuous feeds through a drip so never became hungry.

13/03/14 – I’m wearing clothes!

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‘You can dress Freya if you like’, she had been naked up until now, well apart from her little tiny nappy. I didn’t even know they made nappies so small. I had no clothes, i didn’t even know where to buy premature clothes, why would i, i had never bought any before. The hospital had clothes that were donated, so Freya wore this to begin. Operation premature clothing began, i needed some clothes of her own, i had friends and family purchasing the tiniest clothes they could find, at the weight of 3lb it was quite hard. We had a few bits bought for us but they were still a little too big.

My best friend, Sarah, had gone out searching for tiny clothes and brought back some gorgeous items, Sarah had come to visit me and Freya at the RVI. Mark had been a bit worried about me, he’d heard of the term post natal depression and was a bit scared that maybe it was happening to me. I admit i did turn very zombie like, i woke up on a morning, went straight to hospital, sat and watched her all day, carried out her cares, expressed milk every few hours and went home to go to sleep. I just had to concentrate on Freya getting better, i couldn’t think of anything else, i didn’t feel depressed, i just couldn’t relax until someone told me she would be fine, unfortunately no one could tell me that. Mark and Sarah were in touch with each other, i think Sarah was a great help for Mark, he didn’t know what to do or think and Sarah knows me better than anyone. He arranged for Sarah to come in and see me, at the RVI visitors were limited so no friends and most family hadn’t yet met Freya. When Mark sneakily left the hospital one day, in came Sarah, i was really glad to see her. If anyone can make me laugh and smile it’s Sarah. She brought a bit of normality back to me, filling me in on all the gossip, it was needed and appreciated.

15/03/14 – Who needs oxygen anyway!

Freya was still without her oxygen, she still had her desats and sometimes when they would fall to their 60’s i would panic and grab a nurse, but she would pull herself round and be fine. Freya had almost reached her birth weight which was great news, the doctors and consultants did their usual daily round and gave me a thorough update. They had decided to take her off continuous feeds and change to 2 hourly feeds and they wanted me to start feeding her through her tube. I really didn’t feel comfortable with this but i knew there was a high chance she was coming home with her tube in so i would need to learn.

Before every feed i would check her feeding tube was in the correct place, if it had moved to her lungs it could be quite serious so it was important this check was done every time. Her tube was placed through her nose and down through to her stomach. Using a syringe and using a piece of special PH paper i would have to syringe some of the contents of Freya’s stomach through the tube and release it onto the PH paper. If it turned an orange colour that was fine, if it turned blue, this was a concern that the tube had moved to her lungs. Luckily that never happened, the problem i had with Freya is because i gave her breast milk it was quickly absorbed, which is excellent but it was hard trying to remove anything from her tummy. With formula milk it would take a lot longer to digest so it was easier to remove from the stomach and test using the paper.

I would then measure out her milk using a large syringe before attaching it to her tube and would slowly have to release the milk. Each time Freya put on weight the amount of milk she was given would increase. When it was daddy’s turn to give Freya milk through her tube and to do the little PH test, i could tell he was panicking but he kept his calm and did it with ease.

19/03/14 – Time for my brain scan

The consultants and doctors explained that a brain scan was necessary as it was quite common that premature babies born before 30 weeks could have a bleed on the brain. A lot of the time it would stop and sort itself out, sometimes it could lead to things such as cerebral palsy. We knew it was coming the brain scan, we were obviously very worried. It didn’t disturb Freya while they were doing it, they placed a little lubricant on her head and gently used a hand tool to scan her head, they couldn’t see any problems or issues, what a relief, i have no idea what would have come next if there had been a problem.

We decided today to give Freya a try on my breast to see if she would latch on and feed and she did, it was a little strange for me as i had never breast fed before. I was panicking that she couldn’t breathe properly but it was just to introduce her so we didn’t have to do it for long, the quicker i could get her feeding the quicker i could get her home!

Every day at doctors ward rounds, they would say the same, they were happy with Freya’s progress and she was just feeding and growing basically. She was still on caffeine for her Apnea and bradys but that was under control.

Our consultant was very informative, we wanted to know what kind of development problems we may face with Freya being so early. We just wanted to be prepared to make sure we could give her everything she needed. He explained that usually babies born at around 29 weeks have caught up with development milestones by the time they go to school. Although Freya was a few weeks old they would use her corrected age of 29 weeks. It still gets confusing, her actual age today is 8 months but her corrected age is only 5 and 1/2 months. That’s the age we use for her development, she is trying to sit up but not quite there and she can roll over but can’t roll herself back onto her back. Freya has to see consultants at both the RVI and Durham to monitor her development, so far she is doing great and we are really proud of her.

26/03/14 – I’ve broken free from the incubator

No More Incubator

No More Incubator

It brought tears to my eyes, my baby girl was finally in a cot, i could touch her whenever i wanted, i could pick her up with ease. An incubator was so restrictive, now she was free. She had just her tube through her nose for her milk and a monitor around her foot for the alarms. She now weighed 1720g, she loved her milk.

30/03/14 – My first bath

First Bath

First Bath

Full of panic, both myself and Mark gave Freya her first bath in the ward. It’s hard enough with a new baby, trying to handle them gently, but when they weigh approximately half the weight of a new baby, the panic is far greater. She quite liked having her hair washed but when she was actually put in the bath by daddy she screamed, he soon soothed her and her crying stopped.

Freya’s alarms had stopped beeping as much and she was now lying mainly on her back but still sometimes on her front. I made the decision to give Freya expressed milk in a bottle, she was struggling latching on and the nurses explained they use more muscles when feeding from the breast, so it will be harder for her. It was hard work giving her a bottle too, she would forget how to swallow and breathe and her sat’s would drop and alarms would go off, i would start to panic and the nurse would come and help me. I was so worried that i wouldn’t have the monitor to alarm when her sat’s would drop when i went home, so how would i know? The nurses kept assuring me that she would be fine and by the time she goes home she will be feeding with no problems. She was still having some tube feeds too, having too many bottles would tire her out. It was a gradual process and she was in control.

The nurses had become my best friends by that point, we discussed the TV, what we were having for tea, what clothes we liked, they made me forget i was in hospital. They used to tell me i didn’t have to sit in hospital all day, they wouldn’t think i was a bad mam if i popped home, but the alternative was to sit at home watching tv, why would i want to do that when my baby might open her eyes and want to see and hear her mammy.

By this point Freya was used to being examined, having blood taken, hearing checked, brain scanned and next was her Retinopathy of prematurity (ROP) test. It is a potentially blinding eye disorder that affects premature babies born before 30 weeks, it is one of the most common causes of visual loss in childhood. This test examines whether the blood vessels behind the retina have stopped growing. It is a very intrusive examination and parents are advised to not be there when it takes place. The babies eyes are pinned open and a tool is used to keep the eyeballs still so that they can be checked. This test is carried out up until the baby would be full term. Freya had to go through it 3 times, it was heart breaking but essential. Luckily Freya has no issues with her eyes and they are developing well.

06/04/14 – Look at how much i weigh?

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Weigh in day was 3 times per week, every parent on that ward lived for weigh in day. Freya was now 4lb 5oz and i was able to give her a full bottle quite confidently, even if the alarms went off. Her bottles were increased to 3 per day, i knew they were preparing her for home, it was coming and i was so excited.

11/04/14 – Bye bye caffeine

The consultants decided it was time to take Freya off her caffeine and to see how she responded. I was pretty much on the edge of my seat all day waiting for her alarms to go off but they were actually no different than normal, just the odd alarm here and there. The nurses asked me how i would feel if they turned off the monitors but i wasn’t ready for that, to me that was a huge step, even though she was fine. I wasn’t sure i would be ready for no more monitors!

12/04/14 – What have you done?

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When i walked into the ward that day Freya’s monitor had been turned off, the nurses came straight over and explained they knew i would never be ready and i had to learn to live without the monitors as Freya was absolutely fine. But that wasn’t the only news they gave me, ‘ If Freya is still ok with her bottles and you feel comfortable giving her tubes feed, she can go home on Tuesday and we will carry out an outreach service for you’. This news was what i had been waiting for weeks, i feel like bursting into tears now just reliving the moment when they told me i could take my baby girl home. Home to her her own bed and family and cuddle her all the time and just spoil her rotten. Mark couldn’t believe it either he was so excited, we could finally see the light at the end of the tunnel.

That weekend we made sure we had everything needed, clothes, bottles, breast pump, nappies, there was nothing we didn’t have. It was almost too good to be true, i was waiting for something to go wrong or a set back but it didn’t.

Brings Tears to My Eyes - We're Going home

Brings Tears to My Eyes – We’re Going home

On Tuesday 15th April 2014, after over 6 long weeks in hospital, we finally got to take our precious little girl home, it is a day we will never forget, filled with happiness and excitement. It was an emotional roller coaster that seemed to go on forever, but we got through it and Freya is now a happy healthy little girl.

If you have or are about to have a premature baby and would like to ask us anything, from mum or dad, please get in touch as we are happy to help.

michelle@freya-lillie.com or mark@freya-lillie.com

We now donate 5% profits to Tiny Lives Charity from our small online business named after Freya Lillie and are looking at fundraising for Durham neonatal.

www.facebook.com/freyalillie