Care for Rare


June 2015

An Unexpected NICU Journey


An Unexpected NICU Journey

Towards the end of pregnancy, thoughts are preoccupied with delivery. Will it hurt? What pain relief will I need? Even, how will I know that labour has started? I found myself asking. But, not once did it cross my mind that my baby might be poorly. On the tenth day past my due date I lost a little fluid. I had planned on having my baby at a midwife led unit, as I was

considered low risk, so I went in and they confirmed that it was in fact amniotic fluid. I was sent home and told to keep checking my temperature and rest up until contractions started. I had a few contractions on and off over night. In the morning I went back and as labour had not progressed I was sent to the hospital.

Poor CTGs and a LOT of meconium present when my waters were broke meant they wanted me in theatre for an emergency section, and fast. Penelope was here half an hour later. The room was full of people but I couldn’t help but think that it seemed dreadfully silent. We hadn’t heard her cry. I, however, had begun to cry and it was as I looked at my husband that we heard the faintest of whimpers. I caught a glimpse of her as she was wheeled out. She needed help breathing. Whilst I was in recovery my husband had been to see her in NICU and brought me a picture. She was perfect. But, it wasn’t looking good, she was on 100% oxygen and couldn’t breathe on her own. She had severe meconium aspiration and persistent pulmonary hypertension as a result. I managed to get myself into a wheelchair and go and see her. By this point she was on an oscillator, which was just petrifying to behold. My brand new, delicate baby was shaking away. We sat there for hours watching her sats, they were going down instead of up. Nitric oxide didn’t work either. We sat with her for ten hours and then the doctor wanted to speak to us. They had exhausted all the options at our local NICU, there was nothing more they could do now. He mentioned something called ECMO but there are only a few places in the country that do it. The closest place to us was Glenfield, Leicester, three and a half hours away. Luckily for us, there was a bed and Penelope met all the criteria to qualify for it.

ECMO is basically a lung bypass. Blood is taken out of the heart by a tube in the neck and the oxygen is added to it outside of the body and then the blood is returned, doing the lungs job, allowing the meconium to be cleared out. The team from Leicester came the following day, put her on ECMO and took her to Leicester in an ambulance where she stayed on ECMO for 36 hours. My husband followed her there and I was discharged the following day and met them both there, and although phenomenal to behold, it was easily the most terrifying thing I have ever witnessed in my life. She was then brought back to our local NICU in a helicopter! And, yes, they had teeny tiny ear defenders for a newborn! She was already proving to be a fighter. She was off the ventilator 24 hours later, but our NICU journey was nowhere near it’s end.

On ECMO. The tubes into the heart via an incision in the neck are the width of a pen.
On ECMO. The tubes into the heart via an incision in the neck are the width of a pen.

She was now breathing on her own but was unable to maintain a safe blood sugar level without a high concentration of dextrose. It took a couple of weeks to get the results back from the myriad of tests performed. It transpired to be something quite rare we were dealing with. She has congenital hyperinsulinism which means that she produces too much insulin, like the opposite of diabetes, causing dangerously low blood sugar. This was completely unrelated to her breathing difficulties she initially faced.

Even though she was admitted to NICU with what was a relatively common newborn problem for full term babies, that being meconium aspiration (albeit she had it to the extreme, the most severe case our local NICU had seen) it was dealing with awaiting a diagnosis for something more complicated afterwards that was particularly difficult. I can certainly sympathise with any parent whose child is in NICU with a rare, genetic condition not picked up on during pregnancy and waiting for the results of test after test. And, perhaps the most wearying thing of all was not knowing when we would be able to bring our baby home.

Once she was on her medication and beginning to stabilise there was light at the end of the tunnel.
However, from there we had difficulty “teaching” her how to feed as she had previously been NGT fed whilst we awaited a diagnosis. This was what felt like the most tedious part of our stay in NICU. She had reflux and consequently ended up on even more medications and with a speech and language therapist and dietician visiting her now. It seemed that she could not keep a bottle down, even the tiny bit she could manage. And, worse, when she was sick she would go hypo and her blood sugars would drop. This prolonged our stay in NICU a few times. But, after six weeks and two days and a very long discharge planning meeting and two nights ‘rooming in’ with Penelope, we were able to take her home. With the NGT still in. My husband was shown how to pass one. She was off it in no time when we brought her home and could practice feeds round the clock!

NGT was in for around two months.
NGT was in for around two months.

During this six weeks I found a little comfort from the Bliss magazines available at our NICU, and much of what was not covered in our discharge planning meeting I found in the Bliss handbook, which was especially helpful. I think that even though it is a great shock delivering a baby prematurely, it is just as much of an unpleasant surprise having a poorly full term baby that needs neonatal intensive care. What I would like to let any parents in a similar situation know should they be reading this, is that it really does get easier. And once you can accept that taking your baby home will happen when they are ready, it can even become enjoyable! The nurses are utterly fabulous, what a job to do! And are of great comfort. We documented and enjoyed some of Penelope’s “firsts” while we were there as if we were at home, but had the advantage of a helping hand. For example, the first bath! It is a place full of ups and downs, but take solace where you can, even if it is reading this for five minutes while your new baby takes a nap. And, most of all CONGRATULATIONS on your new arrival, from a parent of a ‘NICU grad’.

Penelope is now one!
Penelope is now one!

Brilliant blog posts on

Breastfeeding v bottle feeding… It doesn’t really matter

Cuddles were more important to me
Cuddles were more important to me

Breastfeeding v bottle feeding… It doesn’t really matter.

I have read so many articles now about “bressure” (mums feeling pressure to breast feed/ feeling as though they’ll be judged for bottle feeding). But, equally I have read a lot about the great benefits of breastfeeding, the list seems almost endless… Baby gets antibodies, great for weight loss, cheaper than formula and no need for sterilising etc, etc.

Why does it matter? Shouldn’t it be down to a mums individual choice, what she decides to do?

That’s what it comes down to- choice. Instead of focussing on what others are deciding to do or feeling pressured I think we should remember the mums that don’t get a choice. The NICU mums waiting desperately for their milk to come in when their baby arrived unexpectedly 10 weeks early, or like myself, a mum who simply didn’t get a choice. After my baby’s breathing difficulties had been overcome, we discovered (and luckily too that it was picked up on) that she couldn’t maintain a safe blood sugar level. Whilst she was on ECMO and then a ventilator, she was receiving dextrose. But, when she came off the ventilator there was an attempt to wean her off the dextrose but unsuccessfully so. Whenever the dextrose was dropped her blood sugar dropped too. She ended up on a relatively high concentration of dextrose (20%) and then the testing began. She had so much blood taken for various tests I cried wondering irrationally

What mattered to me most was spending every minute I could with my newborn
What mattered to me most was spending every minute I could with my newborn

whether she’d have any left. Evidently this was more than a mere episode of neonatal hypoglycaemia. I was unable to feed her during testing. I had been expressing since she was on ECMO, it made me feel useful, when I couldn’t hold her I could express. I was very lucky that the neonatal intensive care unit she was on was able to facilitate me to do so. I was given a Medela electric pump to put in my room whilst we stayed there, which worked superbly (I had previously heard it would be difficult without the baby there, but this pump was great). It wasn’t much, but a comfort to me. I managed to get quite a stash built up in the refrigerator (I had nearly a full shelf in the NICU fridge!). It took two weeks before we got our diagnosis. It’s such a rare condition. She produces too much insulin, it’s called Hyperinsulism and causes dangerously low blood sugars. During this two weeks she had the odd 1ml of breast milk via her NG tube, so I was very keen to get going afterwards, and wanted to feel the bond between mother and baby that breastfeeding brings. However, as her blood sugars were being closely monitored, as was her milk intake, we had to document every bit of milk she had to ensure that she had a satisfactory amount to keep her blood sugars safe alongside her medication. I had lots of breast milk and continued to pump so we tried her on bottles of it and we could measure what she took (barely anything as she had to learn to drink, so most of it ended up going down the NG tube).

I sat with her 18 hours a day, and I still feel it was not enough. I would go to NICU at 6am, always the first mum there and not leave (bar for a quick coffee and sandwich) until 11 or 12 at night. And when I returned to my room all I tried to do was express milk. I would cry if I missed my 2am alarm and wake up with wasted milk on the sheets, I constantly felt like a let down. During the day I now kept disappearing in order to express in private. I was missing her smile and changing nappies and everything else. My husband was with her but I always thought she needed her mummy as well. I began to get frustrated when I became sore from pumping for an hour and only to get 50ml, making the whole expressing procedure even more difficult. My stash quickly depleted. The stress and upset had a major effect on my supply. I got a prescription for domperidone but didn’t want to leave my newborn to go to the GP to get it.

In the end I had to make a very tough decision- get myself tired, depressed, flustered and stressed over milk or sit and hold my baby’s hand. I held her hand. And, I won’t ever regret that choice.


Why I ‘count the kicks’

Top left: Penelope on ECMO when she was born. Top right: Penelope doing marvellously at 10 months old. Bottom: Penelope is now one, and a lovely little girl, kick counter wristband can be seen.
Top left: Penelope on ECMO when she was born. Top right: Penelope doing marvellously at 10 months old. Bottom: Penelope is now one, and a lovely little girl, kick counter wristband can be seen.

‘I wish I’d have known about Count the Kicks’ during my last pregnancy.

My daughter was born last June, by emergency C-section. After recently having a debrief about the birth, it has become much more clear to us just how lucky we are to have her here today.

I had a lovey pregnancy, hardly any sickness in the first months, baby was measuring splendidly, etc. Everything was “textbook”. Until my due date. It came and went. But, even when it had passed, I never felt particularly uncomfortable, despite it being (oddly) warm (for Britain)!
On the tenth day past my due date I lost a little fluid. I had planned on having my baby at a midwife led unit, as I was considered low risk, so I went in and they confirmed that it was in fact amniotic fluid. I was sent home and told to keep checking my temperature and rest up until contractions started. I had a few contractions on and off over night. But, here is where I really wish I had known about CTK. As I was busy concentrating on contractions and timing them etc, I cannot remember being advised to keep an eye on baby’s movements. In the morning I went back and as labour had not progressed I was sent to the hospital. There I was monitored and it was picked up on straight away that baby was not happy. They needed to get labour started and fast. I had a cannula put in and my waters properly broke; but once it was evident that there was A LOT of meconium present I had a team ready to take me down to theatre in no time. It becomes a bit hazy here, but I knew they had to get her out, and quickly. She was delivered at 13:43 on 6th June, they flashed a bright green baby above the curtain, and although the room was full of people it seemed disturbingly quiet. I hadn’t heard her cry. My husband was in as much shock as I was and as I looked at him we finally heard the faintest of whimpers. She was then wheeled past me- she needed help breathing.

My husband followed her down to NICU. She had severe meconium aspiration which had led to persistent pulmonary hypertension. Our local NICU quickly exhausted all the options (oscillator, nitric oxide) and it wasn’t looking good. She was on 100% oxygen and could not breathe on her own. We were told there was maybe one option left. A life-saving, last-resort treatment called ECMO. But, only a handful of places in the country do it, the closest to us being Leicester, three and a half hours away. Luckily, her good birth weight (8lb 13) and other factors meant the team at Leicester were thankfully able to come and perform the procedure that involved taking the deoxygenated blood from the heart via a tube in the neck, where the oxygen was added externally to the body and then returned through another tube (doing the lungs job). Once she was on ECMO she was taken by ambulance to Leicester where she stayed on ECMO for 36hours, thus giving her lungs a break and allowing the meconium to be cleaned out, it was four days before I got to hold her. She was then helicoptered back to our local NICU.

Had I waited any longer to go in it would likely have been a different story, so said the obstetrician going over my notes. Meconium is often present when a baby is distressed, and although I can never know what it was that distressed my baby so much, had I been aware of the importance of counting kicks, even during contractions I might have been able to act faster. As a noticeable decrease in kicks might have indicated her distress. Only around 50 babies a year need ECMO. It saved Penelope’s life, and for that I owe it mine!

I am due baby number two in August, and I am so much more familiarised with his pattern of movements, using my kick counter. And, although I will be having an elective section, I will continue to regularly be aware of his movements right up until the moment he arrives.


Find me on Count the Kicks website:

Happy Father’s Day… ‘dad of the year’ πŸŽ‰

I know Father’s Day isn’t until tomorrow but I was too excited about this post!

I entered my husband into a ‘dad of the year’ competition run by NUK and he was one of the winners 😁


Penelope is doing so marvellously today and I owe so much of that to him, he completely deserved to be one of the 6 winners of the competition ☺️ He never left her side in NICU. He followed her the day after she


Penelope and her daddy
Penelope and her daddy

was born to Leicester when I was waiting to be discharged following a cesarean section, and held her hand whilst she was on ECMO and until I could get there the following day. And, he’s been phenomenal since. With the 3 hourly feeds when we first brought Penelope home, the blood sugar tests and medication, the regular baby things such as dirty nappies and bath times, to being there at EVERY single hospital appointment she has ever had (and there have been a lot), he really is ‘dad of the year’.

We were in NICU for his first ever Father’s Day last year (as well as for my birthday and our wedding anniversary) so I’m hoping tomorrow he can have the break he truly deserves!

Happy Father’s Day, Lee. ❀️

And, thank you NUK πŸ™‚

I’m on Twitter!

imageΒ  Until I’ve sussed the widget side of things and can put a link up…

I’m on Twitter @giannapickup

and Instagram @giannapickup

Come say ‘Hello’ ☺️

Meet Penelope! πŸ’—

So, I wanted my first post to be a formal introduction to Penelope, whom will make up a good chunk of the subject matter of this blog.Β 

Here she is last June (2014) when she was put on ECMO shortly after being born.

In brief, as I will be writing a much more detailed post on this at a later date, she had the life-saving, ‘last resort’ treatment due to severe meconium aspiration and persistent pulmonary hypertension. This basically means that she pooped before being born (meconium is a baby’s first poo) and inhaled it causing her much distress. Although, mild meconium aspiration is common, severe meconium aspiration is extremely dangerous and can be life threatening, as was the case here. There are other treatments that will be tried before the idea of ECMO is visited. Penelope quickly exhausted all these options at our local NICU.

ECMO is essentially a lung bypass, deoxygenated blood is taken from the heart (via a tube in the neck) where it is oxygenated externally from the body and returned via a second tube. Although extraordinary to behold, it is also without a doubt one of the most terrifying things I have ever witnessed. It takes over the lungs job so they can have a break while the meconium was cleared out.

It is such a rare thing for a baby to need. Estimated roughly 50 babies in the UK each year will need it. Only a handful of places in the UK do this, Penelope had to go to Leicester. Quite a trek for us.

So, that’s my Penelope and a brief look into what she first faced when entering the world, but I am hoping to write a little more about this 😊


For more info on ECMO:

Baby Brain Memoirs

Hello there!


I’m Gianna. Mum to a one year old ECMO star ⭐️ and sugar baby. Expecting baby number 2 in August πŸ’™

I have started this blog to write about some of my experiences as a first time mum to a miracle baby πŸ™ but, also to post about regular baby things and pregnancy too. Some of the subject areas will include: NICU, ECMO, congenital hyperinsulinism (that’s the sugar part!), BWS; as well as other regular baby and pregnancy stuff.

Hope you enjoy reading.

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