Growth

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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.

Healthy newborn

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.

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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!

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A teeny tiny Violet in Alder Hey Hospital

Success measured in pounds

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.

Reassurance

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.

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

Sick baby is a challenge

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.

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Aurora at a week old enjoying the sunshine outside

Bereaved parents

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

Always Violet Skies x

Our second rainbow

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This was the best kept secret, until recently, as anyone can testify if they have bumped into me. At 34 weeks pregnant with my third pregnancy I’m now pretty big.

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Not very honest

Those of you who regularly read my blog you will know that I like to write in a very honest and frank way. I apologise if I haven’t been forthcoming about this massive development in my life. I hope that after reading this post you can understand why.

Third pregnancy

We were lucky enough to fall pregnant again with our second rainbow pretty soon after the loss of our baby Arthur. Unfortunately were told that there would be a 50/50 chance of the new baby having similar brain issues, as it’s older brother. We wouldn’t know if it had these issues until the 20 week scan.  So we would have to wait 5 months until we knew if our pregnancy would be viable or not.

The scans

In the meantime we were of course offered additional scans so we had one at 7 weeks, 12 weeks and another at 16 weeks where they checked baby’s heart.  At the 16-week check we discovered that unlike Violet’s heart the new baby’s heart was perfectly formed. We had received this news about Arthur’s heart at 16-weeks too.  So although it was good news we weren’t celebrating yet.

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Baby at 12 week scan

Arthur’s scan

I remember after our 16-week scan with Arthur we had been so happy that his heart was ok. We felt so lucky, relieved and excited we told friends and family we were pregnant.  Everyone of course was delighted for us, especially after the loss of Violet. Then after Arthur’s 20-week scan we got the devastating news about his severe brain condition and our entire world collapsed.

Kept this one quiet

For this very reason we refrained from telling our close friends about the new pregnancy until after our 20 week scan.  This scan turned out to be the very first 20 week scan we have ever had that hasn’t resulted in us being pulled into a separate room. To be spoken to by specialists and midwife counsellors.  The first 20-week scan we have had that hasn’t resulted in us having to have a second follow up scan with a more senior specialist a week later. 

So when the two specialists that performed our 20-week scan told us the baby was perfectly healthy we didn’t know what to say.  We were in total shock.  We were asked if we had any questions and all we could think of was “what do we do now?” We were told we could leave and come back for another scan with a specialist at 28 weeks.

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Baby at 20 weeks refusing to have a photo taken turning away!

A mistake?

Since then we have been waiting for a phone call or letter from the hospital to say that they are sorry but they have made a mistake.  We had the second specialist scan at 28 weeks and again we prepared ourselves for the knock out punch. That didn’t come, again we were given positive news.  To anyone reading this we must sound ungrateful. We were just so used to being given bad news whether it was devastating or minor bad news that we almost couldn’t believe what we were hearing.

More scans

We currently have a minimum of one baby or pregnancy related appointment each week. Either to monitor my heart (as I have an ASD see my post about a broken heart). To check baby’s growth (the amazing Tommy’s clinic gives us a scan every 3 weeks). Child loss counseling or midwife appointments.  I’m under so many different departments and teams that we have gone from having an horrendous level of obstetric care when we had Violet to now having lots of specialists who all know who we are and will give us priority level care.  The NHS now feels like it is working for us!

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With my sister at the baby shower she & my sister-in-law kindly organised for me

Trying to be hopeful

I’ve recently been to a few different Manchester events and I’ve bumped into so many people now that I think most know about our impending arrival.  People constantly ask me whether I’m excited about the new baby. The truthful answer is simply that I will be relieved when baby is here safe and well, when I can see with my own eyes.  Until then I can only try to be hopeful for the future.

Thanks for reading.

Sarah

Always Violet Skies x

When baby news upsets me

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I was so excited to meet my brand new nephew yesterday who is absolutely gorgeous and I’m so pleased to see my beautiful sister healthy too. Friends I spoke to afterwards were concerned about it upsetting me and contacted me to check I was ok. It is lovely of them to care but prompted me to write this…

Baby news

After having lost my little girl at 15 months and then a baby boy that never made it to full term, bless him, people seem to think that I’ll get upset if they announce a pregnancy or the birth of their new baby.

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Violet at approx 10 weeks old

I have gotten upset occasionally. Usually if the baby boy was born close to Arthur’s due date and/or been given the same name but even this doesn’t last very long at all.

Happy news

I’m always happy whenever someone announces a pregnancy that’s healthy. Or the birth of a new baby, especially if it’s a close friend or family member. I love to see other people happy and there are always baby cuddles available.

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Arthur at 16 weeks of pregnancy

Sad baby news

What really upsets me is when I watch the news and hear of a baby or child that has been abused or murdered by their parents or family. That is what I find really upsetting, we’d give anything to have our daughter or son healthy and with us. When I read that someone has actually intentionally injured or killed his or her own child I find it abhorrent. That is the baby news that really upsets me and makes me so angry.

Violet & Arthur

Our daughter was so well looked after yet she still got sick and died, from we think a lung disease. My son had severe brain damage, yet I looked after myself in pregnancy, didn’t drink, smoke or do any drugs other than a pregnancy multivitamin! When I see pregnant women smoking and drinking alcohol that upsets me. Women chain smoking, blowing smoke over a pram and toddler that angers me too. Violet was never exposed to cigarette smoke. I feel sorry for children that are. I want to shake their parents to say “do you know what it would be like if your child died?” That is when I get upset about someone else’s baby or child.

Thanks for caring about us though. We really appreciate it when people are so thoughtful to let us know about pregnancies, new babies etc before they then announce it publicly. It is lovely to know you all care and are still thinking of us.  Thank you.

Love Sarah x

Always Violet Skies

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