It is exactly one year today we brought Penelope home from NICU. 🎉
After six weeks and two days in NICU, this day could not come fast enough but it was still utterly terrifying. We were still trying to establish feeds, she had NGT still in and quite bad reflux. She was on three hourly feeds to keep her blood sugars at a safe level as well as over ten medicines staggered throughout the day. On top of this was all the regular baby stuff such as dirty nappies and bath time. I never thought I’d sleep again. Even when she was asleep I sat there and watched her breathing; it was scary not knowing her sats!
But, a year on and she is doing fantastically! The NGT came out after about a month of being home. The reflux resolved and disappeared once she started on solids. AND her meds were all gradually reduced so she doesn’t have half as many as she used to! She no longer needs waking up throughout the night for feeds.
She hasn’t let her rocky start hold her back. She sat up unaided, crawled and walked ‘early’ for her age. She is like any other lively 13 month old now, loves to play and is astonishingly beautiful and full of life. I couldn’t imagine this would be the case one year on. 💕
It never occurred to me that even the language I use when reflecting on life after NICU has become medicalised.
Here are some of the acronyms and shortenings I use and what they stand for…
•NICU- Neonatal Intensive Care Unit
•ECMO- Extra Corporal Membrane Oxygenation
•CHI- Congenital Hyperinsulinism
•BWS- Beckwith Weidemann Syndrome
•BM- such a huge misnomer, commonly mistaken to mean ‘blood monitoring’. Interestingly, its background is explained here: http://www.thejournalofdiabetesnursing.co.uk/media/content/_master/3190/files/pdf/jdn17-2-46.pdf
•MA- Meconium Aspiration
•Hypo- Hypoglycaemic episode
•AFP- Alpha FetoProtein
•Sats- oxygen saturations
•NGT- Nasal Gastric Tube
•PPHT- Persistent Pulmonary Hypertension
•EBM- Expressed Breast Milk
•PDA- Patent Ductus Arteriosus
•ASD- Atrial Septal Defect
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
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.
‘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.
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
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!
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.
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 😊
I’m Gianna. Mum to a one year old ECMO star ⭐️ and sugar baby. Expecting baby number 2 in August 💙
I have started this blog to write about some of my experiences as a first time mum to a miracle baby 🙏 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.