Our daughter at 5 weeks old, who never left the hospital, contracted sepsis. A sepsis (which we were told is similar to Meningitis) swamped her tiny premature body.
Rewind 5 weeks.
Due to contracting HELLP syndrome in pregnancy, I was minutes from seizing so the the decision was made to have an emergency c-section at 26+6 weeks.
We had been told she had great odds of survival, 80% actually; even more so because she was a girl.
She was expected to be on a ventilator for at least 10 days.
Less than 24 hours later she no longer needed the ventilator, she switched to the Cpap machine. This, we were told she’d be on for a few weeks too. The next day she came off that too, switched to a Vaportherm machine, which gently gives oxygen, to ensure her lungs wouldn’t stick together.
She surprised everyone.
A Little Diva
She sailed through everything she was meant to.
Feisty little diva – knew exactly what she wanted; including pulling up to 8 feeding tubes out a day.
We even had a discharge date, a date to make plans as a family if five.
Five days before she died, she was out for a cuddle, we loved our cuddles, all her requirements would settle her, she’d be so relaxed. This particular day she had an apnoea whilst on me. She was whisked back into her incubator, feet were rubbed she came around.
We were told that babies often forget to breathe, and she was at that point due for another transfusion.
It was scary.
We visited again I mentioned she had slight odema in her arms, we were told this was normal, not to worry.
I was able to have a cuddle, only this time I was terrified of hurting her.
She was in need of some relaxation, time to recover from her transfusion. Premature babies need lots of rest, even after nappy changes and feeds.
3 days before she died we visited with a milk run, where we discovered she’d had a test – an eye test, we’d only heard about it through other parents on the ward, we didn’t know she’d be having one too.
They don’t like parents being present due to how invasive and distressing it is for the babies (although in hindsight, maybe a cuddle would help the distress), can often make babies unwell.
I only saw her in the incubator on that visit, she had really found it distressing she really needed rest. Her oxygen requirements were raised.
The following day she was still recovering, but she was able to have a feed. We were hoping for a better day. Her final full day, we visited, her O2 was still raised but she seemed to have perked right up. I was allowed a cuddle her brother saw her out of the incubator for the first time.
We left the hospital that day on a high, with plans for the next day for have a girlie day. My eldest daughter was going to get her first cuddle.
Less than 24 hours later Melody was gone.
No girlie day, no warm cuddles.
Over night, the night in which we’d had a wonderful day with her, she was changing.
The O2 requirements increased, in turn she needed a ventilator to breathe for her.
Her heart was restarted 5 times.
Antibiotics sooner could have changed our outcome, something none of us will ever know.
With her CRP level at 110. The sepsis taking hold of her, there was nothing more that the doctors could do.
When we walked into the unit, with only a hint of what was to come (we thought she’d had either another apnoea or was going to be transferred), only to be told our five week old miniature Princess wasn’t going to survive.
We had to say goodbye.
It wasn’t something we were greatly aware of; that Sepsis and Meningitis could happen in a place where your child has never left.
We were surprised when we were told this. We knew that there was another baby poorly with suspected Meningitis on the ward, but we never knew just how common it is in the NICU.
Of course knowledge probably wouldn’t have helped her; we’re not doctors. But awareness that it can happen.
However you never get over the shock of having your seemingly healthy baby die.
Never be afraid to mention changes. Although the nurses see them every day, as parents we’re the ones who learn every single inch of our babies, their bodies.
Ask questions. If you don’t understand then ask again, explain that you didn’t quite understand.
That baby is YOURS.
That part is hard, I found sometimes it felt like she wasn’t ours at times.
Make yourself aware. I never knew milk banks existed, or that I could get breast milk from other sources. I didn’t want her to have formula, it seemed harsh for her tiny tummy, but I couldn’t pump enough, quickly.
Learn about the procedures and tests, again ask. If you’re not happy get a second opinion. There are things we would have wanted and declined had we asked more.
I often wonder whether I did enough. Asked enough, spoke up for her.
Sepsis can happen in the hospital, in the NICU and can kill. It can destroy everything.
It stole our baby.
For the second year running I have been nominated and shortlisted for a Butterfly Award.
The Butterfly Awards are a prestigious evening to celebrate the work which individuals and groups do to support families of babies and infants who died.
I have been shortlisted in the blogger category.
It is strange to want to try and win such an award, because really it isn’t about winning this item, because my baby died; but for me it is to get her recognised as a person. To get her story told.
During our time we hit many things, Hyperemesis, Antenatal Depression, Early Pre-Eclampsia, HELLP syndrome, premature birth, IUGR, life in the NICU, her death the Sepsis, the protocols in which should have been in place, which weren’t All of these things I can raise awareness for.
So for me it isn’t the award itself, by her name coming to the surface, Neonatal Death and Post Neonatal death getting a mention. My work as an author and her Mum; I can bring awareness to these things. To help support others going through any of the above and of course the loss of their precious babies.
Please find The Butterfly Awards section on my blog, to take a look at my profile and video.
Melody’s Life mattered. She was here; she lived. She just couldn’t stay.
I’d never heard of the term Rainbow Baby until I was pregnant with one of my rainbows. I’d had three miscarriages in the past, plus two healthy children. It was when I fell pregnant after my third miscarriage did I learn of this term. I assumed, that the term meant everything would be fine and happy.
Then this particular rainbow died. After being born at almost 27 weeks, she did really well in hr first few weeks of life, but at five weeks old the baby who we had come to know as our rainbow baby – died. She changed our story.
When did you decide to try again?
We were actually planning another baby, whilst our daughter was still alive, only we thought we’d wait until she had come home for a while. Once she had died I was keen to try again as soon as possible, but at the same time I, we were terrified.
What was TTC like?
Luckily for us the TTC journey after our daughter was short, but was long enough to get the jealous pang in the pit of my stomach each time someone I knew fell pregnant. We were advised to wait six months for healing and for grieving, I knew from early on there’s be no healing for grief. We were lucky to have conceived just over three months after our daughter died.
Did you have any support TTC?
No, we didn’t tell anyone we even wanted another baby, let alone tell people we were trying again. We had many comments stating how we could always have another baby, we felt by telling people it would mean they could forget what we were going through. So no it was just us.
How did you feel when you found out you were expecting?
Well, I only tested because I had gotten really frustrated by yet another pregnancy announcement, I felt I had spent a fortune on time and pregnancy tests, although it was a short time, I was also very impatient for it to begin. We had so many mixed emotions; although we were trying we were still surprised that it happened so quickly.
The feelings of guilt also came, that we had a new baby coming, yet our baby before hadn’t even had a headstone, or her six month birthday, it was incredibly surreal and frightening.
Did you tell anyone?
Professionals and a very few close friends and family. I wanted to get the right medication for me ASAP, get the care that I had been promised at an earlier meeting. My GP was reluctant to give the Aspirin, although it was in my notes, so I saw my consultant at six weeks – where I had my first scan.
How did you announce it?
We were terrified to tell anyone, we were scared that we would jinx the pregnancy. But due to health reasons, we announced via Facebook at around 14 weeks, with a simple Rainbow quote, it was nice to give people from a distance the news, after they had supported us through our devastating weeks.
What support did you have from professionals/friends/family?
We had some support initially, but it wasn’t until the next trimester that it increased; I had a second scan at 10 weeks, then at 13. This was all just the beginning. Family seemed to assume that we were all better now we had the new baby on its way.
Did you have any tests/scans?
Didn’t have any extra tests, just the usual booking in bloods, and I also had a PET one done, although that is a rare one to have in the first trimester, because of previous history, professionals wanted a baseline to work with should they have needed it at any time further along.
As I said I had scans at six weeks, ten weeks and thirteen weeks.
Were there any surprising milestones?
Not really at this stage, not for us. I guess seeing a new heartbeat after only so recently losing our daughter felt incredibly surreal.
How did you feel as you started to show?
Nervous, for me it was this trimester when things began to go wrong, I guess I ignored my bump somewhat, trying to concentrate on one day at a time.
Did you have any scans or appointments?
Yes I had them fortnightly to begin with starting from 15 weeks, but from twenty weeks I had weekly scans and appointments with the midwife, and fortnightly with the consultant right up until the end. I was very well looked after, but it was so much more than being a baby loss mum, I didn’t do pregnancy well either. Although my Midwife and Consultant were very kind and understanding with all the appointments I had – none of which I asked for, they were what the consultant had put in place. But other professionals I would come in to contact with like sonographers weren’t always that empathetic to my being there, and few times I’d come away in tears or disheartened. A lot of their issues were me having the weekly scans; it seemed to bother them somewhat.
Were you well physically?
Not massively, no. I had Hyperemesis Gravardium and SPD to contend with. It was often a struggle to make my appointments due to being so sick.
How did you feel emotionally?
This is closely linked with the previous question, aside from the scans and antenatal appointments, there were the need to have an IV every now and again, there were times where they wanted me to stay overnight, but I just couldn’t the whole ward, the area made me feel so much worse, the area in which she did was very close, and on quieter evenings if windows were slightly open, I could hear the faint beeps coming from there, they’re a massive trigger for me. Possibly because it isn’t something I come across in everyday life, it affects me more when I do hear them on the odd occasion. I was a wreck.
What Milestones did you pass?
The gestations in this trimester were the ones that I felt like were a massive mountain to climb before I had passed them. Week 23, because that was when I became ill, it was then later discovered this was the gestation that she had probably had stopped growing at. 26+6 was the biggest one in this trimester, because that was when she was born. I was a complete wreck leading up to these milestones, but became lighter I guess once they had passed, but it still didn’t make everything easier.
Did you have any additional appointments?
Aside from the normal ones, yes I continued throughout the rest of my pregnancy seeing the midwife regularly, the consultant weekly and additional in between CTG monitoring and IV drips.
Scans what did you plan for the labour and birth?
Scans I had a total of 22 throughout this pregnancy right up until about five days until my C-section date. It did help with my anxieties, it felt like I had my eye on the baby all the time, I couldn’t trust my body any more, I couldn’t trust anyone.
I had a planned section due to how many previous ones I’d had.
How did you feel about this?
Nervous, I had originally been offered to have the baby at 38 weeks, but I refused and said I would prefer 39, to give baby as much chance to avoid Special Care as we could. But as the dates neared we brought it back to 38 weeks and I am pleased we did. The main thing in my birth plan was to leave with a live baby, a sibling for my other children, and to leave as soon as I was able, there was no way I wanted to stay there longer than necessary.
Did you buy anything for the baby/prepare the nursery?
We didn’t have a nursery, no space, but we didn’t really give the baby a space either. I was too scared, we had brought a cot from eBay (new), but we never opened it until she had hit about six weeks old. We had very basic items, enough to cover what a baby would need. We soon learned that we were missing a fair bit, but we just couldn’t do it. There were times where I had filled a basket and then abandoned it, we kept putting it off, or double/triple checking before we bought anything. It certainly wasn’t relaxed or exciting.
How did you feel?
I loved shopping for baby things with my first two, and even the few bits we had brought for our daughter was still really exciting, getting prepared was fun, the imagining the new life that would wear the items or sleep in them.
But with the rainbow, the only things I could think about was making sure I kept a receipt. To not open packaging to ignore the things we had brought. It was a chore, a horrible chore. To remember exactly where I’d put the items and where they had come from. I needed to know we could return them should we need to. It was far from fun. It was never meant to be like that.
Was there any milestones?
Getting past the weeks in which the baby would need intervention or procedures should they were born at a certain time. Getting to 37 weeks to me didn’t mean full term, it meant a week until I could meet and take home our baby. There was a point at 34 weeks where they thought delivery would happen, but I was lucky that my consultant knew my history well and sent me home before anything was booked.
Labour and birth
Tell us about the labour and birth
I had an elective caesarean.
How did you feel?
Terrified, although our baby had lived but then died, I had lost my innocence, not all babies survive pregnancy, birth is so unpredictable, even when they listened to the baby just before the operation started, it was a long time between that CTG and the moment of first cry.
How long was it?
I of course didn’t labour, but the waiting around in the morning, was not something that we felt comfortable with. We were first on the list, but there was an emergency, luckily for us our consultant wanted us in and out as soon as possible too, so he went and helped with the couple before us. It felt like an age until we were called on to go in. The SPD made it a very slow shuffle to theatre.
What was birth like?
It was peaceful, well a lot more peaceful than our daughter’s birth. I couldn’t relax until the moment I saw her, until she was safely in our arms. She was born to Blame it on the Boogie by Jackson five and I was stitched back together to Love Train.
How did you feel meeting your Rainbow baby?
We felt relieved upon hearing that cry. Relief once she had been handed over to us. It was incredibly emotional, the need to hurry up and recover, to leave the theatre and hospital was overwhelming, I felt very impatient to begin our rainbow journey, I was worried that every minute we were there, there was a chance for her to be taken. We didn’t want that to happen.
What were the early weeks like?
Not the dream I had set out for it to be. I assumed that I’d be ok; I would be healed in the way in which everyone said I would be with having a rainbow. Feeling like a complete wreck, everything was still terrifying. Nothing had changed except I had to rely on us to keep her alive and not a bunch of scans and appointments.
Hitting five weeks old was our biggest milestone. I barely slept a wink the night before her fifth week, I was scared it would all change the next day, we’d had such a good day the day before our daughter died, it worried me that history would repeat itself.
Handing back the respiratory monitor too at six months felt like a huge milestone, although we didn’t use it a great deal it was a security blanket.
Breastfeeding? Bonding? Bringing baby home
Breastfeeding was a massive thing for me; it was something that was really important. Sometimes when our daughter was in NICU it felt as though decisions were would of our hands, particularly in regards to her feeding, she’d have a couple of top ups with different formula, and often I was made to feel inadequate in our feeding schedule.
I just felt that formula was too harsh; I didn’t want to do anything to make our new baby ill, so breastfeeding had to be a priority. She ended up losing a fair amount of weight, which we eventually realised that her birth weight may have been wrong. But there were a couple of times where health care professionals threatened us with a trip to the hospital; this certainly was something we didn’t want. But we pushed on and she was 100% breastfed until six months. It really helped our bond, I did struggle, because she reminded me of her sister, then she began doing things that her sister never got the chance to do. It wasn’t easy – far from it.
General what things helped?
We bed shared, I had already done this with my older children as part time measures, but with our new daughter, I felt I couldn’t let her out of my reach, out of my sight. I needed to be able to hear her breathe, and if there was anything to have taken her, that she would have known love 100% of the time.
It wasn’t easy.
I think being able to still speak about our daughter, to allow her to be included in conversation. We also didn’t allow visitors at the hospital. Time at home without visitors too, we had a slow and steady supply of visitors, we needed time to compose ourselves, to find ourselves as a family, who’d been through such a whirlwind of events, there were times we had no idea which way was up.
What things were hard?
The way our new baby looked like her sister, although not so much now, but every time I looked down at her I could see her sister. Telling people the number of children we had, I would stutter a lot, everything was so confusing. My head couldn’t get around having two pregnancies in thirteen months, yet one baby. It took a lot of getting used to.
What things didn’t help?
People’s words, expecting us to be better, and healed now there was a new baby. Actually I think it was worse, being a loss Mum has made me a lot more anxious at being a parent, because I now know that not even children are safe from dying. People expected us to move on. We were under the CONI scheme and I had a lovely health visitor, the best in fact. But her Boss told her at 18 months post death, we should be over the death. This is a health care professional, someone who is meant to support the most vulnerable, but could end up doing more harm than good. No bereaved parent should question how they grieve or the length they take. The loss of a baby, a child lasts a lifetime.
What would you have find helpful?
More empathetic health care professionals, to feel that you won’t get judged for crying the loss of your baby, actually people in general to be kinder towards parents who have lost a baby.
People expect us to forget, to never mention what we have gone through, but it is never that simple.
I wish someone had told me the truth about having a rainbow baby. I honestly thought that by having a rainbow baby it would make everything better. Reading other people’s views on how their rainbow made them better, that it would all be over, my expectations changed. That for me our daughter would never be that storm to pass over, to move away from. I desperately hoped the pain would go. Nobody told me I’d feel differently. I expected to be better.
I also went on to have another rainbow. We’d had a surprise positive pregnancy test, which resulted in miscarriage; and thought we would try once more, where we fell pregnant the next month. I once again developed HG, where it was incredibly tense and scary. Something I could never want to repeat.
My midwife was amazing during this pregnancy and saw me for home visits weekly due to being unable to leave the house a lot. I also had a different consultant who was lovely and supportive for the HG; but I did find it a lot harder to get through my concerns to people. With the severity of the HG it exacerbated my anxiety for bringing the baby home. I didn’t have as many scans, and my GP upon booking in (after asking for my aspirin and sickness medication); that he didn’t really deal with pregnant women; which was incredibly disheartening and left me with no confidence.
There were several trips to the hospital throughout this pregnancy; for sickness medication and IV fluids; my midwife would give me dip sticks at home to keep an eye on ketones; but upon phoning the wards I was told to suck a sweet. The biggest thing for me was at 24 weeks; I had upper bump pain, it was the only way I could describe it, it panicked me with my history; so I phoned the ward to be told that you don’t get pre-eclampsia before 28 week; you don’t get it twice; I could not be having upper bump pain, so I was unable to get seen.
Luckily on this occasion everything was okay. It then made me reluctant to want to phone in again, it just so happened that the HG was playing havoc on my body again. But I just felt the second rainbow people – health care professionals were even less sympathetic. I’m not sure why. Nothing had changed, I was still terrified that something awful would happen again.
The milestones remained the same.
I had my 5th and final caesarean, with a sterilisation at the same time.
Although I have been lucky enough to have four healthy children out of the five; losing our daughter will always be not just about losing her; but the level of anxiety that any pregnancy afterwards brings, has definitely put me off ever wanting more children; even if there was ever a chance to squeeze one more baby in.
I think it really doesn’t matter how any babies you go on to have after a loss; there will always be that huge sense of loss, of someone missing. No-one will ever replace or make up what we have lost.
My rainbows aren’t ones which come after a storm, because our storm will never be over; they add colour and light. They give Melody a little acknowledgment. Babies after loss.
Back to school
As the whole nation prepares for the return to school, including myself. There remains the large hole of a missing child.
Helping Melody’s little sister get ready for her new adventures in big school; the preparation of shoes, and uniform; making sure book bags and P.E bags are ready.
When we missed reception in 2016, I thought it would have been one of the last big milestones. But it isn’t, not really. It is never going to be about losing “just” a baby. You lose not only yourself, but a future, dreams. There’s a personality missing, a child whose name will never get called in a register, a child who is never spoke of by another child, or wanting them to come to play. These children who stand in the playground, who sit in the classroom, will never know that there is a girl who should have been there. A girl who should have been friends with them. To them, to their parents she never existed. Our daughter to the class of 2028 will never have existed. In the playground I’ll never be Melody’s Mum.
The Shoe Box
There’s one extra thing we’re having to sort for the first few days of school, a shoe box to fill with memories their favourite things to let their class learn a little bit about them outside of school.
Melody lived in a box, she sleeps in a box, and has two memory boxes full of things to help us remember her.
She doesn’t have a box of her favourite things, of her hobbies. It has nothing inside. No stories to tell of her family members, no adventures to share. Photos of her growing from a tiny baby to a girl entering into year 1 are missing, they will always be…missing. I don’t know her.
As if she never existed
I’ll fight to keep her memory alive, continually retelling the one story I have, the short story of her life. It’s all I have but for the children and parents going into year one this week, for the children who become the students of the class of 2028. To the men (or women) she could have met to one day marry. An aisle she once stood at, will never be the aisle she could have chosen as a step towards her future. To the adults of the future. Melody never existed.
Not just the baby
She is not just the baby we have lost, we lost her whole life. Everything she could have been – gone.