2 to 1... Nearly there!

It's been a while, but here's where our Orlaith is at...

At Gt Nanna's house

So for the past couple of weeks, we have been trialling Orlaith on just one injection a day (how frickin' scary?!). After the success of cutting down from 4 to 3 a day, we gradually went down to 2. So now, she has one daily injection of Octreotide therapy - a minuscule 0.05 mg - at 8am; which helps to stabilise her in the mornings, with the Sirolimus treatment, which is still twice a day at 2.2ml at 11am and 11pm.  So far, this is working really well and I'm pleased that she has come so far since she's been home - Orlaith previously had been on 0.28mg 4 times a day and I'm rather surprised it has happened this quickly! Her current BM range varies week to week but recently has been around 2.9-13.3 mmol/L, but only on a few occasions below the 3.5 mmol/L safety guideline and the lows have had explanations (e.g a vomit, is unwell and reluctant to eat etc) whereas before we had nothing to go on. All in all, she's doing really well at the moment!

                               Medicine....

Orlaith & her Daddy!

Ideally, there will be no more injections soon but at the moment, I'm hesitant to stop them altogether simply because that injection a day is is a back up if Orlaith's body is relying elsewhere for glucose. One of the downsides of the Sirolimus treatment is that it weakens and compromises the immune system, so Orlaith has been constantly unwell for around 10 weeks now. It started with a severe ear infection in both ears and has snowballed to various colds and infections. We never seem to actually get rid of any illness before it flares back up again and she currently has a bad chesty cough and phlegm on the chest, so because of this she's been on various medications and antibiotics; some increase blood sugar if there are any traces of sugar - for example calpol (unless it's sugar free). So because some tend to increase the blood sugar, it makes it tricky to figure out whether she's naturally becoming more stable - therefore not needing the injection, indicating it can be cut out completely - or the medications are keeping it raised and without it Orlaith can't hold the stable blood sugar by herself - therefore needing the one injection and to carry on as it is - so until Orlaith is better, it really isn't worth the risk of stopping it and then if something goes wrong to take backward steps and go back to 2, then 3 or 4 if necessary and so on. I'm happy with where she is at the moment, she's safe and with continued support from the specialist team at GOSH, we're going to stick to this for a while. We also had an admission at GOSH for three days back in September, it was just the usual BM profile/fast/blood work - which all went well, it was also her shortest admission yet! It was slightly harder than usual, as obviously we had Emila to think about as well as still recovering from the caesarean and the complications, but thankfully my parents helped out massively so she was looked after during the day by them then myself and their dad took it in turns being with Orlaith and staying with her overnight whilst the other goes home for Emila... hard work with the constant train journeys but we made it work.

Development...

With Orlaith's development, she fills me with pride every single day. She loves to count (although has a tendency to miss the number 3 out haha) and knows quite a few colours, she's just always chatting and running around, wanting to know what everything is and how it works. It amazes me how she speaks and every single day, she's stringing more and more sentences together. Orlaith's also very friendly and loves to interact with others, especially children... I can't wait for her to start nursery next year as she will love the interaction and social aspects! Potty training is coming along slow and steady, she's had a few hiccups previously so gradually we reintroduce it and back away if feel we need to and let her take it at her own pace. To think we were told she would be braindead by the age of one/two or have little to no brain activity, leaving her dependent and practically a vegetable for life... how wrong the doctors were!

 Food...

Definitely loves her food!

Orlaith loves her food, it's hard to think that she even has a blood sugar problem! If she had her way, Orlaith would be constantly munching on yoghurts, cucumber, chips, bananas and toast! Unfortunately, she's still heavily reliant on milk and is still unable to have cows milk so is still on the SMA high energy prescription milk - she currently has about 3-4 bottles, sometimes less, in a 24 hour period - this is purely to keep her stable especially overnight when she's dream fed. If her BM is good overnight then she doesn't need the milk so we do have some good nights like that. It's also great on occasions like today where she's lost her appetite from being unwell but will happily take milk so thankfully her blood sugar is not a worry.

Meeting Peppa Pig recently!

Likes...

This girl is also massively obsessed with Minnie Mouse, so much so that everything she could want or have has to be Minnie Mouse... such a diva! After watching the movies not that long ago, she's also pretty fond of Tinkerbell along with Peppa Pig (surely the bain of every parents existence is Peppa Pig?!), who she recently met at the local town Christmas event and loved it. Orlaith loves to sing and dance, if anyone can talk someone into 'row, row, row your boat' then it's her! She's so nosey too, always inquisative, wanting to know everything, adventurous and loves to play; but she can be a right madam and have the devil in her some days so she certainly keeps me on my toes but overall she's such a character. Orlaith's also the best big sister! The love she has for her sister is just beautiful, she loves her so much and loves to help us with her or smother her in kisses and squeeze her so hard for cuddles.


Christmas...
This Christmas is her second christmas but the first Christmas were she is starting to embrace traditions such as Father Christmas, the Christmas tree, presents etc which get her excited and she doesn't stop talking it. My parents have taught her 'HO, HO, HO!' so inevitably she's always saying it whenever Father Christmas appears, so she's getting really into it...including dismantling their tree and taking the decorations down every time she visits!!! I'm so excited for Christmas this year, last year she was only 8 months old so it was a long day where she wasn't particularly interested and buying for her was extremely hard but this year, I know it will be the complete opposite especially now we have Mila around!

"You can't play with that..."

"you can't play with that..."

 

Vomit, ew!

My goodness, someone - whether your child has CHI or not - tell me that I am not the only one?

Orlaith's new thing is making herself sick, like literally coughing and gagging until she successfully vomits over everything and everywhere. It tends to be when she isn't getting her own way or just wants attention. 

For example, I got her out of the bath recently and she didn't want to put her pyjamas on so what do you do in those situations? Make yourself sick, obviously. It was completely unnecessary, she could have simply of said no and gone down the verbal tantrum route but instead she just starts screaming uncontrollably and gagging, leading to the vomiting episodes. Orlaith's also done this in the middle of Starbucks whilst on a coffee date with friends, she then had to sit there in a vest and socks until her Dad came to the rescue with spare clothes and to take her home. Not at all embarrassing, right?! Another time, she didn't want to go out but unfortunately us parents haven't got a choice but to get the errands done - so again it was the screaming and vomiting scene... all over herself, the car, the car seat and then me. It happens at least once a day. Give me strength! 

I sometimes just laugh as it's so ridiculous and I look like at her like "REALLY?!" and then on other occasions, I just want to look myself in a cupboard and not be 'Mummy' anymore. I've heard, which I suppose is also the most logical, the best thing to do is ignore and divert their attention elsewhere. I  just want this to stop like right now, this phase will be the end of me - the washing machine is constantly on, I'm constantly scrubbing/shampooing/steaming the carpets and upholstery and she's constantly in the bath.... like everything is CONSTANT. 

Of course, then there is the matter of the HI and needing to keep blood sugars up which inevitably drop when she is vomiting. 

Has anyone else gone through this? I've had a ponder on google and it seems to be a popular phase for the majority of toddlers?! Let me know your toddlers irritating phases!

Congenital Hyperinsulinism Awareness

www.hi-fund.org

Emila Coco is here!

On Wednesday 20^th August 2014 at 9.45am, weighing an impressive 10lbs 2oz, Emila Coco made her dramatic entrance into the world via emergency c-section.

So far, all seems healthy and her admission to the neonatal unit at birth only lasted 48 hours - providing an incredible BM profile as well as no deformities currently being present... Which is all I could of ever hoped for!

The labour was not the 'natural with no pain relief' birth that I wanted. I turned down induction twice and I lasted 14 hours with no pain relief or intervention, birthing myself to 5cm dilated at home,  even with little to no breaks between contractions. I'm pretty impressed I got through it, I got to 9.5cm dilated and the 0.05cm was just not happening due to over medical reasons so it ended in a ECS.

Emila @ 12.5weeks
Emila's nearly 13 weeks now, I can't believe how quick time has gone... it's as if she's always been here.

Has it really been 4 months? Wow.

I can't quite believe it's April and I have yet to post anything in 2014! I've just shifted through my emails and questions relating to this blog and thought it's time to update the land....

Orlaith is still as beautiful as ever, totally biased doesn't even cover it. I am still amazed at how far she has come and what she's doing now, so crazy to think she is 1 in 11 days, where has the time gone?!.... no longer my ickle baby! She has literally gone from strength to strength these past 11 and a half months, I don't think I've ever been more proud in all my life! Her development is on par for her age, if not better which is just amazing - I always love hearing things like this because we were told when she was a matter of weeks old that she may have development and learning difficulties, so for her to be where she needs to be it just makes me so happy! It is still a fear in the back of my mind, I'm more than aware that these difficulties can develop at any time and slight brain damage could be present but she's doing really well for now and thats what I focus on.

We are still a journey and daily battle with Hyperinsulism, not quite on the transient path...but one day! The last time I posted, it was a post on 'Sirolimus'; a new drug which has been trailed on CHI babies. Orlaith started this treatment in November last year and this treatment is also our final step before surgery, but it's working wonders so hopefully this continues. Sirolimus has been in the press recently, and was also featured on ITV news, as it is such a new drug for these purposes but it carries so much potential. As I previously mentioned, Sirolimus is a treatment which is common in kidney transplant patients to stop the body rejecting the new organ - it was during this time that it found that it raises blood glucose levels. I'm no doctor or expert so I couldn't possibly tell you how or why this was linked to CHI and to trail it when persistent neonatal hypoglycaemia is present but it's working and has saved a handful of babies... so completely worth it! There are a few concerns which are quite regularly raised with this treatment, mainly in parents of patients of the treatment - the most popular being the little to no research in paediatric cases and that the treatment not being advisable for children under the age of 13, however these are questions which consultants are dealing with and there is definitely method in the madness here! Also it bares rather unpleasant common side effects; pneumonia, blood clots and an increased danger to skin cancer... obviously not advisably what you would put a baby on but we have seen a difference, which eliminates the worry of them being unstable at home and thankfully there are so signs of any side effects with Orlaith just yet.

 If you would like to read more, here's a link to the GOSH blog about the treatment and how it helped a baby boy.

In terms of medication, Orlaith is still on Octreotide therapy every six hours and Sirolimus as mentioned every twelve hours - gradually if Sirolimus levels reach and maintain a therapeutic range, the Octreotide can be decreased and Orlaith can be weaned from it. As Sirolimus is taken orally, it would make my life if she as just solely on that and the injections could stop, she's at the age where she knows its coming and it's heartbreaking! Similarly, as parents we decided to discontinue Orlaith's gastrto medication - all three of them - sometimes parents just know best, we believed she had outgrown the condition and after the all clear to trial this at GOSH we gave it a go and haven't looked back since!

Of course, her diet is still a big thing for her and it is very strict. I am very on the ball with what she is fed, if you know me personally then you know just how strict I am.. tough love if you ask me!! Orlaith is still fed every 2-4 hours, including overnight with BM monitoring pre feed and when a hypo appear s to be present. Over time, you get to know the food groups which benefit the most but it is always a case of trail and error with new food. Personally, I can't stand it when people just feed her because it's there and she's a baby, "something to gnaw on" they say; I don't think so.  SO much goes into preparing her food and it's great when we find something which has all the right food groups and nutrition but also keeps her blood sugar stable. Food which containing sugar is not always good, which is what most people believe - these foods could bring on a hypo as opposed to a sugar rush. It's important to consider carbohydrates, fat reserves, glucose, fructose, article sweeteners etc. 

Orlaith loves her food, it's sometimes hard to think she has a blood sugar problem!

Also, couldn't carry on without mentioning my second love - I'm currently five months into my second pregnancy, more than half way there. I think thats a whole post in itself, the responses I've received are rather interesting and some are rather intrigued about the HI side of things so I think that'll be the next one. X

To gastro or not to gastro PART TWO ♡

Thank you so much to everyone who called/text/emailed me today to wish Orlaith well on today's GOSH call after last weeks post - we're so lucky to have support from you guys! xxxx

♡♡♡

So here it is... Orlaith's range since Wednesday as been interesting to say the least - 2.9-7.4 - with seven occasions below 3.5, ranging from 2.9-3.3 - not amazing considering the vast increase on the Octreotide but understandable as the little madam is reluctant to feed.

Do you ever get to the point where you just want to pull your hair out?  Waahhh. I literally stayed home all day today just trying to pump her with food!! 

I touched base with the specialist team

today for the update on Wednesdays apportionment - as parents we have said no to the gastrostomy UNTIL we have more information and have looked into other options too. If feeding carries on this way then it would be inevitable. It's a shame my Nan couldn't come over today, she is like a bottle feeding queen when it comes to Orlaith - she can easily get 150ml of milk in her into time, thankfully we're seeing her tomorrow... Definitely putting her on the feeds!! ;)

Sirolimus is still now an option so we'll see what her consultant suggests - we are going to be re-admitted to Rainforest ward at GOSH as soon as possible, probably in the next couple of weeks... And the journey will be again all over again in finding what keeps Orlaith stable and within normoglycaemia levels. 

♡♡♡

51 Days

We brought Orlaith home 51 days ago... 1 month 20 days... 7 weeks... 1224 hours and it's gone crazy fast, I can't believe I haven't posted in 7 weeks!!

I love being home and I adore having Orlaith home. Don't get me wrong, she definitely has the devil in her some days and is a diva every day of the week but as a baby, Orlaith is doing amazingly! I swear she is getting more and more mobile every day.. constantly shuffling everywhere (crawling soon, I hope!), has her hands and mouth all over everything, trying to sit up by herself, enjoys food (pureed, of course), sleeps through the night... I could literally list a million and one things as to how she has changed, it's unbelievable! Like where has my baby gone?!! 

Of course she still has CHI, and it is an on going battle to monitor it at home. We are constantly exhausted, her medical schedule is insane... for the last few weeks, we have experienced hypoglycaemic fits regularly... struggled as parents trying to grasp the disease... and of course it wouldn't be sods law if after 4 days of being home we weren't blessed with teething... but in all seriousness, throw whatever you like at us 'cos we're still over the moon to have our beaut home!

One compliment I get a lot (besides the amount of hair she has haha!) is how happy and smiley she is - she is constantly smiling and chatting away and always in a happy mood; it's strange because you would never believe anything was actually wrong with her sometimes, or has gone through anything like she has. I love waking up and seeing her face in her own cot, not on a ward being prodded every hour or setting off her own monitors... the experience of having a baby home is still new to me but I'm loving it. We are in the 7th week of being home, for most babies this would be at the age of 7 weeks so still a fairly small teeny tiny newborn (I have 100% forgotten what that is like, Orlaith is 14lbs worth of mini human now!), I'm still getting used to so much. I'm not going to lie, I do sometimes feel cheated. Like any other pregnant first time mum; I spent a fortune on clothes and getting everything the baby would need, getting her nursery all ready and making sure it was just right, picking the perfect pram, nesting to a worrying point of scrubbing skirting boards and banisters at 3am and re decorating the whole house so everything was right... I would never in a million years of thought that I would be in hospital for 15 weeks with my child suffering from a condition I had never even heard of! Just the other day I put O in her pram carry cot and she's the exact same length as it... what happened to my baby? Of course like any other 20 week old, she loves to kick and flap so the pram is definitely no good... time to dig out the stroller attachment for sure! Waah!

So we've been up to so much since being home.. for the first few weeks it was constant appointments; I obviously haven't posted in 7 weeks so here is a brief update for you;-

We go back to GOSH for re-admission on the 9th Sept, this is a monitoring and investigating period where the hyperinsulinism and hypoglycaemia are managed by her consultants and this is when and where any changes will take place, it is also a their chance to see how Orlaith is getting on, run tests they need to and all that kinda stuff; Orlaith's GORD (gastroesophageal reflux disease) is under better control now and is throwing up rarely, keeping her feeds down now and is generally more happy at feed times now... feeds are still hit and miss, she has only just grasped the concept of food and getting the feeling of hunger but it's great that she's come this far and learnt to feed in such a short amount of time; Orlaith still has a large atrial septal defect in her heart (possibly from her hickman line), a scan last week showed a hole which is 7mm wide but there is an island which has grown in the middle of it so effectively there are 2 holes along with the atrial septal defect, there isn't any pressure on the chambers so this will just be monitored and operated on a the age of 4/5 if necessary with 2 more heart scans to follow in October; we finally got to attend O's audiology appointments and after what felt like years they finally confirmed that she is not deaf in her right ear (despite what drs etc have said!) and that fluid is build up in the eustachian tube in the middle ear and will go over time; blood counts are currently normal so no more transfusions just yet... and breathe! So much to keep on top of, but overall this little lady is doing beautifully.  

Orlaith's still has subcutaneous (injection) Octreotide therapy every 6 hours, as a long term treatment for CHI. Octreotide is not currently licensed in children with CHI, but is used if the child is unresponsive to diazoxide (check my previous posts for more on this)... She's doing really well with them, at first I thought I wouldn't be comfortable giving my baby injections but we aren't phased by it, O takes it like a trooper with a tiny whimper then it's back to smiles or sleep depending on what time of day or night it is! BM management is still every 3rd and 4th hour of the day - this is 24 hours a day like everything else, they have been up and down recently and it cant be extremely hard especially when Orlaith is asymptomatic (does not show symptoms) in a hypoglycaemic episode but we have learnt to manage it and keep on top of the monitoring. I've heard this from a couple of parents, with children also on Octreotide therapy and I have to agree...one thing I can't stand is pity... the amount of times I hear things about Orlaith's medication is beyond irritating, at the end of the day Orlaith's health is paramount to me and any other parent would do whatever is required of them to keep there baby alive and healthy and NO I don't feel bad for doing it. 

 Of course this takes its toll; I can't remember the last time I slept more than two hours at a time and I'm constantly functioning like a zombie but you just make it work, I think it's more tough as Orlaith has slept through the night since she was 8 weeks old - she doesn't even wake for feeds - which for a normal baby is amazing but cares and meds go on throughout the night so lucky for her, but unlucky for us... she also has to be fed every 3-4 hours without fail otherwise she will slip into a hypo fit, so again it's hard because she is asleep so thank God for dream feeding! We sleep when it can (we  get 5 hours spaced throughout the day which are "free", so nothing meds wise needs doing, so we sleep in this time) but I do find that people don't understand and are sometimes not happy if we are unable to make plans etc but it's just how it is, gotta do what you gotta do! I speak to a lot of parents those children, especially newborns with the congenital disease, experience  this and find it difficult - give yourselves a break! Learn to be firm and say no...at the end of the day, your child's health is more important than anything in the world so if you want to sleep or do nothing when you can, forget these people and do it! I'm not afraid to admit it but I also became a recluse when we brought Orlaith home, as well as Orlaith being sick I had my own post-birth issues... I just didn't feel comfortable in public - especially having to do meds etc outside of the house; but I'm gradually getting there and lets just say I'm not comfortable in every social occasion anymore but my advice is that the feeling of anxiety will eventually go, we just need to get on with it at present - you've just had a baby/or just found out your child has this, so cut yourselves some slack...it's not something that will digest quickly, time is definitely the winning factor here.

I really hope the other parents are now home, if not have their coming home date..in which case I hope it's SOON. I've been asked a few times if I'm on Insta or Twitter - I'm the most easiest person to find - @LimaraBanks for both - beware I am the biggest mamarazzi ever and will probably bore you to death with pictures of Orlaith. Totally sorry not sorry ;) xxxx

HOME.♡

Not only are we sneaky, we've been super sneaky for the past week. 

Our coming home date was 17th July,

WE'RE HOME. 

....and have been for the past week.....

Yep, we have been home since the 17th July and it could not be more amazing. Orlaith is simply loving being home, she's settled in really well and she's kept to her routine and still sleeping through the night; even though our home is a completely new environment for her. It didn't feel right, it felt so weird and surreal driving into our street and taking her through the front door... Neighbours stopped and congratulated us as we carried 3 and a half months worth of hospital living into the house and then it hit us - we are home!! We decided not to tell anybody, we surprised those closest to us and have kept it hush ever since.... We decided to tell no one just so we had our time together first - and we're so glad we did it this way. Orlaith's medical schedule is so jam packed that to have visitors too soon would have been too much...coming home isn't as easy as what people may think; we have a medication schedule to stick to, a strict feeding routine, injections and BM's on the 3rd and 4th hour...but we wouldn't have it any other way, even if sleep is non existent. 

It still hasn't quite settled in my mind that we are home and able to live a fairly normal life with a baby, given the circumstances. I would still rather stay at home all the time in case anything goes wrong but slowly that feeling is disappearing. Orlaith had her first hypo at home on Saturday night, to 2.7 an hour before her feed was due; we followed the hypo plan and she brought herself back up again within the given time. The sense of accomplishment is over whelming, knowing that, as parents, we did that ourselves and Orlaith maintained the level and brought herself up - no medical intervention required, no breaking the bad news of "up on the fluids", no sinking feeling of knowing that home would be further away... just a feed and some gluco gel and she was stable again. Proud mumma! 

We nearly didn't come home, Orlaith had 4 major hypos during the night before we were due to come home (typical!) and just couldn't bring herself back up again, even with a feed. I literally felt gutted and I knew the news in the morning would not be what we wanted. Despite it all, I still packed everything up and tried to be positive; we were given the option to not go home and monitor Orlaith a bit longer or look into the options of her medicines and the dosage. After checking and reviewing with the big dr, the dosage was reviewed to her weight and we were allowed to go home under a new plan of 3rd and 4th hour BM's to monitor her. I know Orlaith can hold her levels which is why we made that decision - as her parents, we know her better than anyone and we knew it was just a frustrating coincidence that it was the night before we were due to leave! It's also common for new environments to cause hypos as they settle in but we've only had that one on Saturday night, phew!

One thing, I love is being able to go out if we want to. I went into the town where I work and it was nice to be able to take Orlaith with me! It also felt amazing that despite not currently being at work, the girls were all thinking of us and have constantly had us in their thoughts... although, I think Orlaith loved it just because of the attention she got!! Unfortunately we had to go shortly after arriving as Orlaith needed her medication but I can't wait to go back once we're a bit more stable. Small things like going to the doing a food shop, visiting family or going to Windsor to see a close friend.. it's all much more normal now and hopefully within time, we will be used to the meds and taking her out .... and eventually have a huge party to celebrate :D

We can't thank people enough for their support and well wishes, 

but we made it! 

HOME. ♡

Sunny Stroll

So I took my baby for a 20 minute walk in the sun yesterday -  just like her mama, she isn't too keen the hot weather! It was so nice to take her out though.... she's coming home very soon so I can't wait to do normal things like this all the time!

Orlaith, 13 weeks

Proud mum moments! ♡

So Orlaith rolled over for the first time yesterday! She's able to flip herself over from her side and get onto her tummy AND she's also not connected to ANYTHING(!!!!) no IV drip, no continuous feed, nothing! I don't think I have ever been able to walk around with her properly, this is something I will never take for granted. 

I'm way too proud of this little cupcake! The past week has simply been amazing for her and her progress. ♡

Bottle feeding.. It's the small things!

So my babe has been feeding by bottle during the day for the past 4 days! 😁

It's such a small thing, but its made a huge difference to her progress and I'm absolutely thrilled she doesn't need the ng tube for daytime feeds anymore! The tube is still used for her continuous feed during the night - this is where her milk is pumped continuously over the duration of the night, she has 21ml going into her system every hour and this helps her to remain stable. When she hypos now, we can give a bolus feed (to bring her sugars back up again) instead of her original hypo plan of hypo stop (glucose gel absorbed into the gums), then 10% dextrose bolus if that fails and so on; which is simply amazing. Orlaith's like a different baby now, her blood transfusion was definitely needed, too - she's back to her normal self, constantly chatting and smiling! 

Our next steps are to gradually get Orlaith to four hourly feeding as we are currnetly on two hour feeds and on the bottle during the night too. 

Go babe, go! 💜

SCBU Mummies.

In just goes to show that no matter what shitty situation you go through, there are always people in the same boat as you. Having the attitude of "MY child is sick" instead of "OUR children are sick" won't get you anywhere in a situation or environment like this. 

My first encounter with SCBU was strange; my baby was taken there and I was told I could visit her in a few hours time, I was hoping to go home that day so to have her not by my side was weird and we just didn't know what to do with ourselves. Me & the boy walked over (me in my pj's sporting the 'I've just had a baby' look, barely able to walk with drop foot and looking as rough as ever) to the baby unit; not having a clue what to do we pressed the buzzer and said we were the parents of Baby Banks. 

I literally had no clue but as we walked into the high dependency room, we saw our little cupcake all wired up and all I wanted to do was cry - I wouldn't want anyone seeing their newborn like that. We sat with Orlaith, we talked to her and just kept holding her. As I looked around, all couples were in the same situation but no one seemed to talk. 

Of course we visited everyday and sat with her all day and into early hours of the morning most nights; nurses were lovely and always supportive, but I rarely spoke to anyone except a smile here and there if you bumped into them in the corridor. It wasn't because everyone was rude, it was because we had all been thrown in this awkward situation and "how are you?" is such a stupid question in that environment. Some parents got on really well but before you had a chance to get to know them, they would get their going home date and they'd be gone. 

Orlaith made a few trips back and forth between the nursery and high dependency room; during this time, we got to know certain faces. Gradually as time went on, there were certain people you'd see every day and we would all just start chatting - finally, people that knew what you were going through and how tough it was but regular conversations brought a bit of normality into our situations. Over time, it become a set group of us and I actually began to enjoy spending my time there. 

The majority of the babies in SBCU at he time I was there were premature babies. Orlaith was only 8lbs but looked like a toddler compared to the other babies around her. We would always laugh and joke, they totally understood my humour (thank God...) and conversation would just flow. It's reassuring knowing you'll be spending your days in this unit but surrounded my mums who were going through the same thing and it was even more at ease because we got on so well and could joke about things. 

One by one they began to go home, of course I was a little bit envious but as I had gotten to know these mums and dads to a personal level; I was simply overjoyed for them - it was amazing news! We would also celebrate each others successes and support and comfort one another through the down times. 

I'm still in contact with all the mummies from the unit, I love hearing how they are getting on and what's new with them and their babies. I really hope Orlaith will grow up keeping in touch with her little friends from SCBU, I think it's an amazing foundation for a friendship. I would definitely of gone insane and started pulling my hair out if it weren't of these babes, really makes you treasure friendship more. 

SCBU feels like a lifetime ago, but I can't wait to go and see all the nurses when we're home and of course meet up with all the mums and babies - Orlaith's definitely missing her favourites! 

Results day.

So this morning, I woke up feeling pretty optimistic - I felt we were getting what we had hoped for. Orlaith wore a dress (for the first time!) for the occasion and we were all set, ready and waiting.... Results day! Ward rounds were running slightly late which didn't help our nerves or anxiety - we have been waiting for 11 weeks for this day, patience is wearing thin and all we want to do is know what we're dealing with.

All in all, it was of normal fashion.. They sat us down, gave us our news, answered any questions we had and that was it. It was an extremely emotional moment but keeping O in mind, we just want her healthy and well. 

We didn't get the news we had hoped - Orlaith has diffuse CHI, the most common form and although blood tests indicated it was focal via genetics, as I said before it is possible for the outcome to swing either way. Haemoglobin has also been detected low consecutively for quite a few days so hello blood transfusion number two! Octreotide (intravenously through the thigh) is going to take over as her main source of insulin management, its a hormone which helps with glucose levels and is common in diazoxide-unresponsive HI patients, like Orlaith - this will run along side the glucagon until her BM's are above 10.0 then glucagon will stop. If BM's are still above 10.0 then dextrose will stop. 

So our plan now is to trial the above and keep going..stabilise, monitor then home. If it doesn't work, then we start again until the HI is stabilised. This can take weeks or months, there is no time scale. 

Today certainly wasn't the day we wanted but we couldn't be more proud of Orlaith; countless nurses and drs have told us how brave she is but the courage she has is extraordinary We'll get home soon cupcake, I promise!

  

A spoon full of sugar makes the medicine go down, in the most delightful way!

Regardless of any medicine or side effect, my baby is the most beautiful being I've ever laid eyes on but some medicines have horrible side effects! Orlaith was put on diazoxide which is a medicine that aids the secretion of insulin in the pancreas and is mostly used on CHI babies.

Anyone who has ever met my baby or had a baby or known a baby on this medicine knows of the most horrid side effect - body hair. Most babies will develop hair on their foreheads, arms, legs, bum and back. After the medicine has stopped, the hair within a few weeks, sometimes months, will fall out... This is second nature to us now and we never even notice it; one mum who had a son with HI simply said it was just who he was and couldn't imagine him without it, well me too!

The reason I'm posting about this is some parents feel it's just their baby/child with these side effects.. when in reality most babies/children have it! Everyone says its hardly noticeable on Orlaith, but trust me..it's there! It is something minor in our eyes, treating our baby is the most important thing.. Who gives a shit what others think?

Many parents don't know how to deal with someone insulting their baby, of course you want to kill them - that's just human nature, but if we're all honest.. we have all thought about it and worried. I even have my "story" of being insulted....
One old hag/bitch from hell/c*nt even went to the extent of stealing one of Orlaith's pictures from my mother in law's facebook account and took the time to find a picture on the internet of a baby monkey in a dress, putting them side by side and captioning it 'Twins!!!' and then posted in on facebook. I mean how low can a middle aged women be? Claiming it was funny and meant to be a joke? I dont know about anyone else but a joke to me is something which brings laughter and uplifts your mood - this women is deranged and needs a good slap. Some people have mentioned Orlaith's "cute monobrow" and have jokingly called her monkey - I will rip you to pieces if you insult my baby, just putting it out there!

Orlaith's come off diazoxide now as it wasn't helping her much, she is now on Glucagon (a hormone which helps increase glucose levels) and its working really well for her - no hypo's to date - side effect of this is a rash on the face and chest and itchy skin, nothing a bit of piriton can't help with! She'll thank us one day.. but right now, she hates us! I don't think a 10 week old really knows what an itch is, must be a weird sensation for them!

Persevere people, your babies will be alright... cute monobrow and all ;) xxx

My beautiful babe!

Congenital Hyperinsulinism (CHI) was the last thing on my mind when it came to having a baby...

Many people have not heard of CHI so I've written a quick overview using simple words, hoping this helps?! haha....

Congenital Hyperinsulinism (CHI) is a disorder where insulin is excessively secreted in the body, not being regulated by glucose appropriately - this causes hyperinsulinaemic hypoglycaemia (hypo) episodes where insulin levels are high and ketone bodies aren't being made - this is extremely dangerous for the brain and the protection of brain damage; as it means it isn't getting the fuel (glucose) or ketone bodies (which generate different fuels) it needs. A safe blood sugar level for CHI is 3.5 and above - a hypo is anything below 3.5. There are two types - focal, where a certain area of the pancreas (a lesion) is producing too much insulin, or Diffuse, where the entire pancreas is affected.

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It's a very brief summary, but here's my daughters story so far..

On Saturday 13th April @ 17.25pm; Orlaith Rae was born. ♡
I could go on and on about the feeling you come across after just having a baby but it really is the cliche feeling of feeling complete and unconditional love. All of sudden, nothing else in the world mattered except her existence.  I never thought I'd be a mother at 23, I had so much more I wanted to do in life but there I was, holding a beautiful baby girl and nothing will ever come close to it.

Orlaith was an extremely shaky and jittery baby. I assumed these were traits of hers, but it continued into her first night at the hospital, only to get worse. Orlaith would go through episodes of being floppy and in a daze to being vocal and screaming the place down, reluctant to feed. In the morning, she had routine OBs and it become clear Orlaith wasn't going home. Doctors kept coming in and observing her before telling us she needed to go to SCBU (special care baby unit) - she was admitted on a 0.9 blood sugar level - it should be above 2.6 for normal newborns. This didn't mean anything at the time but we were made aware the feeding and jittering was being caused by low blood sugar levels and she needed medical assistance - at first I was just confused, I couldn't understand a word the Doctor was saying, all I heard was him say 'antibiotics' over and over again.

Orlaith was taken to SCBU and was instantly put onto a 10% dextrose IV drip - this didn't do much and she went upto 12.5% then 15% .. She still lingered in the 0.'s, even dropping to as low as 0.2.
Due to Orlaith's veins being fragile - as with any new born - she had a IV line put into her belly button, as the dextrose percentage was too high for regular veins. Numerous canulars failed but Orlaith luckily remained stable. A few days after birth, one of the staff nurses told us they will be taking blood to check for "Hyperinsulinism" and briefly described what is was, but we didn't know the severity then. The results came back and she was on the fence, neither positive and negative. Our hospital stayed in daily contact with Great Ormond Street hospital, one of the only TWO centres in the UK which deal with CHI, to indicate what steps need to be made. Orlaith also developed severe reflux and would struggle to hold a feed down - resulting in the NG tube you see in her nose, this has been used since birth to help feed her. She's more than capable to take a bottle but with the reflux was extremely difficult (majority of CHI babies suffer with reflux and aren't keen on feeding, exactly like the day she was born).

As the weeks went on, SCBU tried numerous medicines and kept her on the IV drip constantly, as she'd only hypo without it. All together, it was THREE times we titrated the IV fluids with feed and she was able to come off the drip. However, Orlaith would only last a couple of days and she'd be back on the drip and meds were being increased. How Orlaith didn't slip into seizures, comas, or developed brain damage is beyond us. Drs indicated to us we were awaiting a transferral to Gt. Ormond Street but it could be some time until the bed was available. It got to the point where Orlaith kept dipping dangerously low and she needed a higher dextrose percentage, but she would need surgery to fit a central line as the glucose is too strong for veins and would damage them.

 Within a space of a day, I wasn't only told about surgery to fit the line- I was told she may have brain damage and a tumour on the pancreas. The next day we were transferred to Southampton hospital for surgery to fit a central line for the weekend, thankfully all was a success. We arrived back to our local hospital all fine - Orlaith was stable and the plan was to keep it that way until we could be transferred to GOSH to see the specialist team and top notch consultant. . Early hours the next morning after returning back from Southampton, Orlaith started having cardiac episodes and stopped breathing - I am forever grateful and thankful to the nurses who were on shift that night, without them we wouldn't have our daughter today. During all what was happening, bloods were taken which indicated low levels (of what, I'm not too sure!) and Orlaith had a blood transfusion which helped her remain stable. Orlaith had also had a brain scan which showed there was NO damage on the brain, overjoyed is an understatement.

By this point, Oralith was nearly 7 weeks old and we were finally being transferred to GOSH as a bed had become available. We've been here nearly 4 weeks and the team are simply amazing - coming from somewhere which had never heard of the condition, here it is like second nature. Orlaith remains on a 30% dextrose and occasionally hypo's, but here we have the ability to control it. After routine blood, her hyperinsulinism was confirmed and it indicated the CHI may be focal... This could be the best news, as hopefully it would mean surgery, recovery then home. Diffuse is more difficult to control and get rid of, but there is still a possibility of it so we're open to the outcome - Orlaith will need a PET scan to confirm the current findings. Fingers crossed it's focal and HI may well be cured!

I'm so proud of my daughter, at ten weeks old she has endured so much; she's so brave and words can't describe how much I love her. ♡♡♡