Growth

When I was pregnant I remember strangers would tell me “oh your life will change once the baby comes”. “You’ve no idea of the impact it’ll have & how much you will grow as a person”.  Well they were totally right as no one prepares you for the shock of parenthood but what people don’t realise is the really extreme sport form of parenthood is caring for a sick or recovering child or baby now that has a real impact. Not to mention the loss of one but that’s another change entirely and I wouldn’t describe that as growth at all, that’s more like having an amputation but I’m not talking about that now.

It feels strange to us to have a “normal” healthy newborn, as with Violet we had to give her specialist care because she was recovering from open heart surgery. So in her early years we couldn’t lift her under her arms, couldn’t wind her over the shoulder, she couldn’t do “tummy time” and we couldn’t touch or rub her chest or tummy at all because of her chest wound and broken rib cage. Anyone who’s ever had broken ribs will understand the pain she would have been in during the first 8 weeks while they healed not to mention all the surrounding muscle tissue including her heart. For a good while we also couldn’t bathe her either bless her.

Facetune_01-09-2018-19-42-04
Winding Aurora over the shoulder

Last time with Violet as a newborn all her energy from milk consumption in the first few months went towards healing her ribs, heart and muscles from heart surgery so she didn’t really grow or gain weight at all in her first few months of life. In fact she couldn’t even be plotted on the normal growth chart until she was about 6 months old!

IMG_1083
A teeny tiny Violet in Alder Hey Hospital

This time round despite us feeding Aurora less than we did Violet she is piling on the pounds, rapidly jumping up the growth chart percentiles as a result every health professional so far that has weighed aurora has exclaimed how well we’re doing as new parents, whereas with her sister we were frowned at, interrogated about our feeding skills & had to keep meticulous written feeding records we could show them as “evidence”.  Violet fed every 45 minutes for weeks & Aurora feeds every 1-1.5hrs & sometimes at now 4 weeks old she can go a whole 2.5hrs between feeds but we’ve not had to keep records for Aurora.

You’ve no idea how much reassurance growth and weight gain gives you as a new parent. Assurance that despite the tears, occasional vomiting and lack of sleep you’re doing exactly the right thing. With Violet half the time we were made to feel as though we were failing, as she didn’t follow any “normal” growth trajectory, whereas this time the same (if not less) effort is getting us much better results on the growth chart.

We now realise how brilliant we actually were with Violet in looking after her complex care needs and managing to look after her well, despite everything being 10 times harder for us, than we now know it is for those with a healthy newborn baby.

IMG_1098
Violet at a week old still at Alder Hey Hospital after open heart surgery

Immediately after Aurora’s birth the midwife asked Daddy to change the first dirty nappies, that some of you will know contain the challenge of Meconium deposits, (for any novices out there that’s sticky black, tar like poo) and she exclaimed “oh this will be an experience for you” but it was super easy for him compared to when he changed Violets leaning into an incubator carefully cleaning around the various wires and tubes that were keeping her alive. So not that I want to jinx anything but it seems as though Violet really did grow and develop us in even more ways than we care to realise. Hats off to other parents of challenging or poorly babies as we now realise again just how many medals and pats on the back you deserve! You are truly amazing and don’t be disheartened if your baby isn’t jumping up the growth charts. Don’t let health visitors & others make you feel you’re not doing a good enough job, as caring for a sick or recovering baby is a challenge beyond extreme so don’t allow them to compare your super hero baby to other “normal” healthy ones.  And those other new parents whose healthy babies are climbing the growth charts like our Aurora is you’re not too bad either! Keep up the good work & remember not all growth is easily measured.

IMG_0397
Aurora at a week old enjoying the sunshine outside

To those bereaved parents there are no words and I’m sorry you’re reading this, as I completely understand that when you hear people talking about the tiredness & stress of parenting you know you’d happily agree to anything to get your baby back. I have been there. Big hugs,

Love Sarah x

Violet’s third birthday

Last week was a hard week for us as it was our daughter’s third birthday and along with the happy memories we also had memories of her difficult birth, where both of us nearly died, and the memory of her having heart surgery too.

Violet at Alder Hey
When she was at Alder Hey in intensive care, when we couldn’t hold her she held our fingers & later on in her life she took comfort from holding hands.

This time three years ago she spent her first 10 days in various NICU wards, at St Mary’s hospital first before she was transferred to Alder Hey hospital in Liverpool. In Liverpool she had open-heart surgery at just 4 days old.  We had to sign a million legal forms and contracts saying we knew the odds were stacked against her.  That we knew she might not survive and return alive from the operating theatre.   And that if she did there was a chance of brain damage; disabilities and the heart problem might not be “fixed”.  We also knew her chance of survival without the operation was nil and she was only alive because of the additional hormones and support she was being given.

I still remember the day she went off to the operating theatre that morning was only the second time I had actually held my daughter in the four days since her birth. The first time being the day after she was born just before she left St Mary’s Hospital in an ambulance for Alder Hey, with her daddy in a taxi in hot pursuit, as we didn’t want her to be alone without at least one of us.  I had to remain in St Mary’s because of all the injuries I sustained during labour and as soon as I could be discharged to head over to Liverpool I was.

Me & Violet at Alder Hey
The second time I held her just before her heart operation

The days before her operation and the hours before it we spent time talking to her about what we were going to do together once she was out of the hospital.  We chatted about all the different people she would meet, describing friends and family members to her in detail.  We spoke about all the places we would take her to including New Zealand to see her Uncle Tom, Cyprus to see her Aunty Mel and Bali for mummy & daddy’s honeymoon.  We chatted about her Grandma and Nanna.  Said she would learn to swim.  We basically described to her then the life she ended up having crammed into a 15-month period.  I wish I had have mentioned university and her own children to her then perhaps she’d have stayed around for longer!

Me & Violet in Cyprus
Violet in Cyprus in April 2016

When they took her down to the operating theatre I couldn’t watch, as I knew I would end up screaming and it would distress Violet, so instead I collapsed onto the floor of the nearby family room sobbing.  Her brave daddy on the other hand walked her down to the operating theatre, talking calming to her the whole time reassuring her, reminding her how much she was loved and how strong she was, that she could do this.

Violet & daddy in Alder Hey
The bond between father & daughter was strong from day one

Then commenced the longest 8 hours of our life as we hung around the hospital waiting for a phone call and finally received it saying she was out and still alive! We were so relieved and our hearts sank when we returned to the NICU ward to be told that the specialist team wanted to speak to us before we saw her.  We thought oh no this is where we get told something bad has happened but we were told the opposite that the surgeon thought it was an 100% success and she wouldn’t need any other operations on that part of her heart again ever.  You know what we discovered he was 100% right too, as her post mortem showed his operation was a permanent fix.   This is the reason we are fundraising in her name for Alder Hey so superstar surgeons can continue to work their magic on baby’s that are told they only have a slim chance of survival.

Last week these memories all felt like it was someone else’s story, as though it was a different life and it played in my mind like a feature length film.

The thing I found hardest was the realization that ordinarily I would have spent the weekend before her birthday preparing for it by buying her gifts, cards and organizing a birthday party for her.  Then the night before I’d have been putting an excited little girl to bed and wrapping her presents to set up for the morning.

Violet opening birthday presents
Here she’s opening first birthday presents & getting excited about bows!

This year instead of planning her party the weekend before I focused on doing some planning for the Violet Ball to be held in her memory on 29thSeptember to raise money for Alder Hey to thank them for saving her life at 4 days old.  Instead of wrapping her presents the night before her birthday we decided to make up little “Random act of kindness” parcels containing little packets of sweets, including Parma Violets, and then on her birthday we distributed them all around the area where we live.  Including taking some to her nursery, leaving some on the benches near the playgrounds in the local parks where she loved the swings, left some near the mural on Beech Road that has a violet coloured balloon in her memory, some elsewhere on Beech Road near to where she attended Babel Baby classes and we placed some on benches in the cemetery close to her grave after we took her birthday balloons.

The challenge now will be deciding what we do next year for her fourth birthday? Please let us know your ideas as all will be considered.

Thanks for reading

Love

Sarah xx

Tantrums & wishes

Lots of mums and dads dread going out to the shops or to restaurants with their children in case they throw a tantrum or cry, creating a scene in front of others.  I know this as I used to be one of these women, although thankfully Violet was pretty easy going most of the time, preferring to people watch or read books.

IMG_4031

As a parent if your baby cries or throws a tantrum you look around to see other people staring over and you imagine them tutting thinking you’re a bad mother or that you are doing something wrong.  Often you don’t get to finish your lunch and you have to ask the wait staff to wrap it up to take it home with you to join the other half dozen half eaten lunches in your fridge, that you promise yourself you will eat just as soon as baby/toddler goes down for a nap but you’re so busy you never do get round to eating it.

I remember cringing when my baby projectile vomited everywhere in a cafe.  I was mortified.  Now I’d take that any day of the week!

IMG_3614

Now I know, if the other people looking over at you are anything like me today, then they will be looking over not in annoyance or pity but longingly wishing they were sat there with a child that was crying, throwing food all over the restaurant or indeed creating a scene screaming, rolling around on the floor.  I’d happily change places, rather than be sat there having a quiet peaceful lunch on my own or chatting with a friend.

Never imagine you know what someone else is thinking.  You have no idea what they think or indeed what they have been through so next time your baby makes a scene smile at those looking over and I bet like me they will smile back or even help to distract your little one, snapping them out of it.

Love Sarah x