Care for Rare


July 2015

My Sunday Photo

Clean in white before the carnage… 

Beautiful organic body suit from: 💚 


Here are my baby bumps for bump day…


33 weeks with Penelope (left) and 33 weeks (almost 34) now (right). Apparently, baby is as big as a pineapple. Feel like I’m smuggling more than a pineapple though!

It’s called #BumpDay — and it’s a day to celebrate that sisterhood of motherhood, those beautiful bumps, those beautiful babies, that beautiful promise of a beautiful beginning. It’s also a day to generate awareness about the challenges moms face trying to give their babies the best start — and the simple solutions that can help them overcome those challenges.

One year on…


Towards the end of our NICU journey
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. 💕

One year on
You Baby Me Mummy
Baby Brain Memoirs
Modern Dad Pages

My acronyms 

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:
•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

You Baby Me Mummy

Happy Days

Happy Days…

…Is a ‘happy week’! I’ve not yet posted anything about BWS yet (although I intend to very soon), but as well as Penelope’s regular screening, it is accompanied by AFP blood draws every six weeks to check the liver (it can detect tumours). Only another BWS parent knows the anxiety that comes with this. But, we have reason to be happy this week as we’ve had the lowest number yet. Yay! Celebratory lunch was had of course (see below).

I love her face on the bottom right, this is her newest expression, I’m translating it to mean “pass me the fruit NOW”.

Yellow and green for BWS awareness*


What Katy Said


Sugar Baby

Asymptomatic right before a hypo, sugars were 1.8
Asymptomatic right before a hypo, sugars were 1.8

Sugar Baby

After all the breathing difficulties at birth, we hadn’t had time to acknowledge just how serious this blood sugar business was. We knew while she was on ECMO that she had been put on dextrose but it was overshadowed by the breathing. Lungs first, blood sugars later. Once she was weaned off the oxygen we could begin to worry. They had attempted to wean her off the dextrose but failed to every time as it saw her blood sugars plummet. And so the concentration went up, until she was dependent on 20% in order to average blood sugars of around 3-4. The immediate thought is diabetes but this was more or less instantly dismissed. More testing was needed. They took that many blood samples from the umbilical line I genuinely, albeit irrationally, feared that she’d have no blood left, she was so tiny and they took bottles and bottles of the stuff. One doctor mentioned something about checking for ketones but it was during rounds that a lovely doctor explained that she suspected it was hyperinsulinism. I asked if it was treatable and we got told that they would not start on medication until it was confirmed. Unfortunately for us the bloods had to be sent away to be tested, being so rare, and it wasn’t open over the weekend so when we eventually got our diagnosis she was already nearly two weeks old. However, medication began (that had to be special ordered as it is not something generally kept in stock), and she came slowly off the dextrose.

I got given an information pack and read the entire thing, every last word, turned back to the beginning and read it all again. I couldn’t quite believe the severity of it. She had just about fought for her place in this world then we were thrown this to deal with. The two problems weren’t even related. One of the first things I remembered reading was that some cases result in a near full pancreatectomy. I suddenly felt as though we had been close to taking our baby home and now the idea of that was being snatched away from us. As far as I understand there can be different reasons a child has hyperinsulinism. For instance, it can be genetic (there are different genetic types), or it can be down to a legion on the pancreas affecting insulin secretion, therefore focalised. This type generally needs surgery. Penelope’s, however, was thought to be diffuse (affecting the entire pancreas) but transient; something she’d eventually grow out of.

We got given a glucometer and trained how to use it. We had to learn about the medicines. Diazoxide to control insulin production. Chlorothiazide as a diuretic because the diazoxide causes water retention. Sodium to replace lost salts because of more frequent urination. This was the tip of the iceberg. While other new mums were at home with their babies, probably enjoying first smiles and visitors with cards and balloons, we were learning all about the pancreas and fickle nature of blood sugars. She suffered a relatively bad hypo in NICU after a vomit, sugars were 1.8, and after ECMO this was one of the scariest things I have witnessed. Clammy, pale, shaky and distant- best describes it, in my opinion; scary. The emergency administration of glucogel (to bring up blood sugars) feels like it takes forever, but in reality minutes, and the wait to test blood sugars again is torment. They shot up to 13 ten minutes later though, at which point I could breathe, sort of. I began to resent all those new mums I saw carrying their babies out of hospital when I was walking into NICU. It just didn’t seem fair. Our NICU had a system. Room 1 for life threatening cases, needing intensive care (where we started out); then it was tiered down to 5, which was more of a nursery, where babies needed a helping hand with feeding usually, and a lot less care. Penelope had worked her way down to room 5 but after this bad hypo got bumped back up to 3. I began to think we were never going to leave the place. By this point the diazoxide had also began to have a serious effect on her hair. She had lots and lots of curls to begin with but the medication accelerated it’s growth, her little forehead became fuzzy too. No one could walk past and not comment on it, so much hair for such a little baby. Eventually, when we did take her home (on NGT to ensure she had her medicines and enough milk to keep blood sugars at a safe level) I still didn’t feel much better. She was on 3 hourly feeds to keep blood sugars up, medications staggered throughout the day at least every 2-4 hours there was one she needed (she also had reflux and received meds for this as well as Aspirin post-ECMO) and that was on top of regular baby stuff such as nappies, bath time and cuddles and visits every other day from community nurses. We checked her blood sugars before every feed and if we were ever in doubt, which was admittedly fairly often. We had no social visitors really. We barely could make it out the door for a quick walk around the park with the dogs. As a family, we were physically and mentally drained. Then after being home about a month she had a bad run of hypos. Really bad. We had a chart to follow. What to do in case her sugars dropped. And in red, bold writing was ‘call 999 immediately and give glucogel’ in the very last box. She hit this 3 times with blood sugars as low as 1.2. To make matters worse, this time she was asymptomatic. She showed no signs of being low. It was a vomit that prompted us to check. She was smiling away in the ambulance. Covered in glucogel. She was admitted a few times, for a few days each time and it wore me down a little bit each time too. I felt like my life with a newborn hadn’t really begun. It was more about keeping her alive than enjoying her being a tiny baby. But, over time it got easier and the hospital visits got less. We had our last trip to hospital, in a car this time, with consistently borderline lows of 3 which meant another medication increase.

Raising awareness for this rare condition.
Raising awareness for this rare condition.

And eventually we were able to go and meet the specialist. I think this was the first night I slept properly since she was born. The NGT was out and I could finally talk to someone who knew the problem inside out and could tell us what was going on. Previous to this I found myself explaining it a lot. Even to medical professionals, as many had never even heard of it before. This was when we turned a corner. Her feeds became 4 hourly. Then we dropped an overnight feed. It is surprising how much of a positive impact it has when a “full” nights sleep is had. We brought her in for a fast so we could check how her blood sugars behaved with no food and they remained steady. The medication was working well. She came off her reflux meds and didn’t vomit anymore. But, and most excitingly so, was the presence of ketones during the fast. This meant, as far as I’m aware, that in the absence of food, her body was able to produce alternative fuel thus not attacking it’s own sugar supply.
We got sent home with a ketone monitor, but generally with a bit more positivity too.

I finally began to enjoy the little baby things every new mum is supposed to, despite her being 5 months old at this stage. And, I’ve enjoyed every single second, maybe even a tiny bit more because of all this.

Consider myself a bit of a blood sugar 'expert' now.
Consider myself a bit of a blood sugar ‘expert’ now.

For more info on CHI:

Wordless Wednesday

Current feeling 😭
Current feeling 😭

Create a free website or blog at

Up ↑

%d bloggers like this: