An inspirational story of a Paediatric nurse becoming a mum and an insight into Ulnar aplasia by Emma Gilpin

 My Story

So, I’m not sure where to start. I’ve never written a blog so this is new to me and I’m dyslexic so please mind the clumsy writing as I’m not great with words!

I guess maybe I’ll start with who am and then move on to pregnancy and baby number one and the road travelled with the birth of our first boy, being different, being opened up to a whole new world and breastfeeding battles.

Then comes boy number two and what life is like being pregnant while already having a toddler, the birth and breastfeeding battles round two and what is like being a mum of two, how much harder it is than one and the isolation that comes with it. Don’t get me wrong, I love being a mum and I wouldn’t change my boys for the world. They’re incredible and they have taught me so much but it’s is so damn hard sometimes!

About me

Here’s where it starts. I am Emma and work as a Paediatric nurse, a job I love and have loved my whole life. I haven’t ever wanted to be anything else, but I know it has also distorted my view of pregnancy and birth and has supplied me with what I believe is a whole host of extra worries.
My now husband and I got engaged April 2016, got married in the following September, found out I was pregnant in the October as we returned from honeymoon and had our first son in the May of 2017. We got engaged, married and had a baby in 13 months. I think that’s pretty good going. It turns out I was just pregnant at our wedding (nice to think Miles was with us). I had been convinced it would take months to get pregnant but no, it does sometimes just take once. Surprise.

My pregnancy anxiety

We were so happy to be expecting our first child but with the excitement came the worry. I now know that this Mum worry and, oh lets not forget Mum guilt, will be for the rest of my life. I was instantly worried that our baby wouldn’t survive delivery, and I definitely wasn’t going to let my pregnancy go over term. This baby was coming out on or before 40 weeks.

I am sat here with tears in my eyes typing at the panic and fear I still feel. Rationally I know that thousands of babies are born healthy and happy every day. I have spent my career looking after poorly children and families of babies that haven’t survived or haven’t stayed with us long after being born. All I could think was that being pregnant didn’t mean I was going to come home with a baby.

I didn’t mention our pregnancy on social media and I didn’t want a baby shower because what If I didn’t have a baby at the end? However an amazing friend hosted me a pre baby afternoon tea and it was fab.

It sounds like I was a miserable wreck the whole time, I wasn’t, I loved being pregnant the first time, I was well, my hair was lovely (but not the post baby hair, no one warned me about how much hair you lose, who knew?). I was excited, I couldn’t wait to become a mum. 12 weeks came and went baby was growing healthily. Then came the 20 week anomaly scan. I was so anxious to hear babies heart beat. It felt like forever and then there it was … annnnd relax. The sonographer was great. We didn’t want to know the sex so she was careful when she went through all the bits. She then went a little quite and explained that ‘baby wouldn’t unfold their left arm’. Her wording was perfect. I keep meaning to find out who it was as they really should know what an amazing job they did. It didn’t create huge panic in me and I just thought ‘hmmm ok what does this mean?’ My husband on the other hand is a Doctor and he knew all the possibilities and the not so great things this could mean. I then realised this might not be great news. I can’t really recall what happened next. I just remember that we had to go to the foetal medical department the next day for more tests. The worry overnight was overwhelming. I worried that my worry about the baby not surviving was going to come true.

Our scan showed a complication …..Ulnar aplasia

The team in Foetal Med were fantastic, Our consultant was great, to the point and calming. We had an in-depth scan and it became clear the babies left arm hadn’t developed the way you expect it to. One of the bones in our baby’s forearm was missing and the other was small and they had a small hand. What did this mean for baby? We didn’t know if it was just baby’s arm, if there were other complications or even if our baby was going to be able to survive. My husband and I were devastated. We agreed to have an amniocentesis to look at babies genetics. Yes, there were risks with the procedure but we didn’t know if our baby could survive at all. We agreed this was the right decision for us. We decided at that point to find out the sex. I didn’t want to risk losing the baby without knowing. We were expecting a boy! I don’t know why I didn’t already know we were having a boy. At the time, my husband and I both had 5 nephews each so that made our boy number 11.
We didn’t lose our amazing baby boy and he had already taught us so much!

Fast forward several weeks and a bit more worry around CMV (a bug that could affect baby). Our baby boy arrived healthily. I had a planned induction at 39 weeks. He arrived 4 days later (yes 4 days!). When he finally decided to come, he came in a hurry. It felt like everyone and their mum had ‘examined’ me. I’ll never forget “we need someone with long thin fingers’. You all know what that means, urgh!

When our son arrived, he was perfect and we called him Miles. I was so excited to meet him after spending weeks trying to picture his arm and hand. We had many 3D scans but still, how would it look? We had been through the ringer and we had grieved the ‘perfect’ baby we thought we’d have. Why us? Why me? I had spend my life looking after everyone else’s perfect baby so why wasn’t I getting on?. But that had all passed and when he came he WAS perfect.

It turned out that our amazingly perfect little boy had Ulnar aplasia, an isolated difference with nothing else involved, just one of those things. His ulnar bone in his forearm is missing and he has a small left had with two fingers and a small thumb. He has a limb difference but not a disability. We have found a whole community and family that we are now part of and have made some great friends. Miles is now 2 and a half and I swear he is yet to find something he can’t do. All the worry about whether he would hit his milestones and how he would do it has gone because what ever it is, he will find his own way. The mum guilt still comes and I still worry if I did something to cause it. A part of me will always have moments where I wonder. But I KNOW I didn’t and I wouldn’t change him for the world. To anyone else who it going through a similar worry, it WILL pass and you WILL come out the other side.

Breastfeeding

Anyway, I was now in a world as a first time mum with a brand new baby, BREASTFEEDING and breastfeeding friendly fashion . What a battle that was. I hadn’t put any pressure on myself to do it and took bottles, formula and dummies to hospital with us, just in case, but I was going give it a try. Things seemed to start ok. He had a reasonable latch from the get go, needing a little work, but they were happy for us to go home the same day. He was born about 9.30am and we were home at 5pm. Now what? It was May 2017 and it was roasting! It was such a struggle not to be a nurse. It was 29 degrees in our bedroom and I must have checked his temperature 20 times over night. I continued with the feeding but it didn’t feel great, jees it hurt. Thankfully I had had warning I knew it was gonna hurt but really, was this normal?

Tongue Tie

Oh I nearly forgot, it was picked up in hospital he had a tongue tie, (actually I noticed it and the midwife agreed). He had it snipped at 9 days old, but up until then we had battled so much to improve the latch. My left nipple was bleeding and I had an open wound. Sorry for the over share but this is the reality isn’t it? It was like an open mouth! My nipple had an actual mouth and it was on his favourite side. However once his tie had been resolved, he latched on the right and I thought that was it home sailing. I was advised to rest the left a little, pump if it wasn’t too painful or hand express. My nipple healed but would he go back to the left? Nope, not one bit. I exclusively expressed from my left boob for the next 3 weeks! Whenever Miles fed, I had the pump on my left. I went to all the clinics and drop-ins I could but he just didn’t want the left boob again. Then, one day I went to a breastfeeding drop-in and I don’t know what it was that the lady said or did that day but it just happened. By this point my boobs had been poked and pulled and squeezed by so many different women, I didn’t think he’d ever feed from both boobs. It’s right when ‘they’ say you leave your dignity at the door once you have a baby.

Finally breastfeeding from both boobs and we’d got there, Breastfeeding we can do it. We did it. I never knew until I was doing it how much I wanted to do it. It wasn’t until about 8 weeks that I would say it started to become easier. I was feeding in public now and was getting to grips with one up one down. I had even invested in some nursing tops. I was beginning to feel confident and would even feed in front of my Dad.

My husband was able to support my breastfeeding

We started to introduce a bottle so my husband could feed him and because I had expressed so much from the left side that we had a freezer full. It took some work but he finally took the bottle and had a dummy to settle him off at night. It was lovely to see the bond develop more between my husband and Miles. My husband was, and is, an incredible support. He was so supportive of breastfeeding and I couldn’t have done it without him. He was right there with the EBM bag or the gel cooling pads to put on my boobs when I needed him. Who says romance is dead? And I 100% wouldn’t have got through our pregnancy stress with out him. He is who I was meant to be with, although I would never tell him all this. I do remember though, maybe on day two looking at him asleep on the sofa. There I was, topless in the middle on the lounge trying to get a stroppy baby to breast feed. It was hot, I was sweating, exhausted, milk was leaking out everywhere and all I could think was how dare you sleep. But he was also exhausted too. It didn’t stop me being a little annoyed at him for a few minutes. We’ve all been there, haven’t we?

I loved breastfeeding

I had been warned how hard breastfeeding was but you never know how hard until you do it. I wasn’t one of the lucky ones where baby just snuggles in and finds the milk like a piglet and feeds. However, we got there and what a breeze it was after that. Feeding became so easy and I can honestly say I felt like a took to mumming like a duck to water, I didn’t really have any down days, Miles slept reasonably well, he took a bottle so I could go out with friends and, his limb difference, what limb difference? I found I forgot about it or didn’t notice. He is just like everyone else. Life was good, tiring but good. Although when I heard the baby sensory mums talking about their zombie like lack of sleep I kept quiet, I felt good, I sometimes wonder if a previous life of night shifts has helped there.

Baby number two

So shall we try for by number two? Miles is still so small but it won’t happen straight away will it? I’m still breastfeeding. And then there we were on a rocking boat in the middle of the sea in Australia on holiday with 8 and a half month old Miles and a stick with two lines on it. Take two. I went back to work for 4 months (sorry) and then it was time to start maternity leave all over again, it all went so quickly.

Health-wise, the pregnancy all went well, although I was much bigger. It’s normal don’t worry I told myself. But everyone is so happy to have an opinion on how you look or how you’re carrying when you are pregnant. I am not saying its always a bad thing and I know I’ve done it. Oooh, baby looks low or don’t you look big today. Once I’d heard how big I was so many times, the panic set in again. I was going to have a huge baby and it was going get stuck it wouldn’t survive the delivery. It sounds crazy to the rational me now. I know this is a life-long worry. If I was ever pregnant again I would be just as worried about baby surviving delivery. We saw the consultant we had when I was pregnant with Miles, he scanned baby number two. It was healthy, no worries, not massive and no limb differences. All was well. It wouldn’t have made a difference to us if baby number two had got a limb difference but it would have pointed to a genetic problem rather than a one-off thing.
Oh, and we were having another boy! I couldn’t wait to expand our family. Pregnancy was so much harder the second time round. I couldn’t rest when I needed to as Miles was still so little and they don’t play by the rules at that age. I was bigger and more uncomfortable but I still managed to be a bridesmaid at 37 weeks pregnant. Again I was booked in at 39 weeks for an induction. Baby boy number two decided to worry us all in the delivery room but in the end he came out at super speed. He was so quick that he had blood shot eyes and fired my waters inside the shoes of my fantastic midwife! I must say I had amazing midwives for both our boys. They got our boys into to the the world safely and I will be forever in their debt. Our second baby was also perfect and we called him Seth.

Breastfeeding again….

I decided to breastfeed again. I had stopped feeding Miles at 10 months as I was already a couple of months pregnant and wanted a break before starting it all over again. Seth latched pretty much straight away. I felt cramps instantly when he fed. No one warns you about that either, I didn’t get them first time round. I noticed Seth had a bit of a tongue tie again and was always a bit awkward to get him on but he did latch pretty well from the start once you got him in the right position he would feed well. He got referred for assessment of his tongue tie. We got out the same day again with Seth given that he fed so well. We had had a bit of a delay in getting home ask it seems our boys like to worry us. It was found during Seth’s baby check that he has a coloboma of his left eye meaning the the iris is an irregular shape making his pupil appear the shape of an upside down pear and a heart murmur was heard. Again came worry and my husband knew that this could mean many other not so great things for our perfect boy. He was seen by some special eye doctors and his heart was reviewed and it all can back fine. We escaped home.

Taking baby home

Miles was at home and waiting for us after staying with my parents. He seemed to like his little brother but to be honest at 17 months old I am not convinced he had any idea what or who Seth was and the fact that he was going to be staying forever. Although it probably didn’t seem he was staying forever as after 9 lovely days at home Seth didn’t seem all that well. He was still feeding but it was hard work. He was full of cold, and I knew it he had bronchiolitis. We took him to A&E and luckily, Miles was having his first night at my parents since Seth had been born with the idea that we might get a lay in. Seth and I spent the next 10 days in hospital, it was awful! Having to be on the other side on the NHS was the hardest thing I have ever had to endure, being a Mummy and not a nurse. He was quite poorly, and I have looked after plenty of similar babies, but always as a nurse, and never as a Mum. I can honestly say that I lost my mind. I turned in to a crazy woman and I couldn’t tell if he was getting better or not. I didn’t know how to cope and I didn’t think I would be bringing him home. I couldn’t leave the hospital as I didn’t trust anyone other than myself or my husband to keep him alive. I was totally not being a Mummy. I was his Nurse and I was terrified. The only other person I could cope to look after him was my sister who also a children’s nurse and also intensive care trained. I was forced home by my husband after 6 days, and finally got some sleep. I woke up like a new woman feeling so much better. Sometimes you just have to listen to someone else. Seth improved after a rest, having having feeds down a tube in his nose and some support with his breathing. Not only was it hard seeing Seth so unwell but I had never spent so long away from Miles. I was so worried he’d think Seth had taken me away. I didn’t need to worry as he had been having a great time with Daddy and his Grandparents. We finally got home after the 10 days of hell and could restart our family life as a 4.

Sleeping or lack of it…

While we had all good intentions with bed time and Seth going off to sleep in his own bed, this had all been blown out of the water in hospital. When he was ill, he basically spent the whole time sleeping on me and I am sure that was the start of our bed time troubles. I had continued to breastfeed Seth with some struggles and he went straight back to the breast well after NG feeds. Unfortunately, we had now got in to a habit of being fed to sleep and sleeping on mummy, both things I never did with Miles and never intended to do with Seth. At the end of the day I swiftly learn you just do what you have to do to survive. Sleep, what was that? Neither Seth, I nor Daddy for that matter were getting very much. When I sounded smug about my sleeping, breastfeeding, bottle taking Miles, I was. But that bit me in the bum with Seth. He didn’t sleep or take a bottle or take a dummy. Miles had a dummy, but only for naps, and he never even noticed when we stopped giving it him. Seth just wanted Mummy, Mummy was his dummy. This led to far more sleepless and co-sleeping nights than I had ever planned but with Miles the endless energy toddler to care for at the crack of dawn we had to get some sleep, any way, anyhow. I knew having two was going to be difficult but it’s the logistics I hadn’t thought about. How do you put a baby down for a nap with a toddler whirling around? You don’t, he napped on me. All this was re-enforcing the mummy and bed time association.

Being a mum of two

Seth seemed to do everything at super speed. He crawled quickly and was climbing at 9 months and walking at 10. He just wanted to join in with his big brother. I found maternity leave harder second time round and baby groups just don’t really happen for baby and toddler. No baby sensory for Seth, no baby swim classes, no MummyFIT. I loved mummyFIT with Miles and while pregnant with Seth, I was doing something for me and meeting other like-minded mums. Miles was meeting other babies and being stimulated which was just great all round. But, unfortunately, you can’t take a toddler and baby to mummyFIT so there it ended. I don’t really feel like Seth missed out. He had, and still has, Miles. We see other mums and go to toddler groups but it isn’t quite the same. I missed meeting new mums with babies the same age and I felt quite isolated at times. Everyone else is at work and it just hard work leaving the house as there is just so much stuff. I soon learned that no matter what, you have to get out! Get out or go mad, even if it was just to the super market or 10 minutes in the park. Everything always feels better after getting out. Staying in all day can only be described at mind numbing and exhausting. There’s only so many times you can watch Ryder and his strange talking dogs rescue someone badly.

Breastfeeding and mastitis

Back to breastfeeding. Not long after our hospital admission I got mastitis, I never got it with Miles and I’m so glad I didn’t. It hot and agonising and you just have to keep feeding, There was actual pus coming out with my milk but you just have to keep feeding. I had antibiotics and it slowly improved. Luckily Seth had his tongue tie appointment. Seth was assessed and yes, he had a tongue tie but it didn’t need treating. For the next 45 minutes, the nurse spent what can only describe as pummelling my boob. We had Seth in all sorts of positions but nothing seemed to improve my rock solid boob. They were sad painful times! I was worried my milk would stop and again I would be feeding from one side. As it turned out the nurse was magic, the next morning my solid boob had softened and my mastitis had pretty much resolved…..until next time. Feeding seemed to carry on reasonably well but when Seth was 9 weeks I got mastitis again. At 2am on New Year’s Day, I woke up with those very recognisable shivers. I got an emergency appointment at 6am, got antibiotics and I caught it early. Following this, the advice was to have Seth’s tongue tie snipped and since having that done feeding was home sailing.

What I learnt as a breastfeeding mum

Seth had his last feed on his first birthday our breastfeeding journey was over. What I learned when I stopped this time was that I hadn’t need worry about a missed feed. My milk wouldn’t have dried up as 2 weeks after stopping feeding I was still getting milk.

I had never really planned to breastfeed I just thought I would give it a go. I became stubborn and I wasn’t going to let two tiny humans beat me. I am so glad I persevered, but I know it doesn’t work out for everyone that way and that is fine. You have to do what is right for you. What is right for you is right for your baby.

And to add to the breastfeeding achievements, as of the 1st of January this year at 14 months old, Seth has finally started sleeping at night. He is now just waking once rather than every 90 minutes. To be honest I am not sure what changed but what ever it was, I like it. I am finally getting some more sleep and beginning to figure out who I am again.

Having our boys had taught me you just have to do what gets you all through the day. Oh, and night! As long as you are doing that you a winning. Mums AND Dads are far far too judgmental of each other. I could have never imagined how two babies brought up in the same home could be so different, but they are both incredible in their own ways.

Becoming a mum changes you. You don’t mean it to but it does and it is NOT a bad thing. Mumming, actually parenting, is hard but it is all worth it when you feel those little arms wrap around you.

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