From 4 to 3....

Wow so we had some amazing news yesterday.

We are currently on a six week break from hospitals, appointments, tests, you name it (due to second baby due any day now!), which is lovely as the travelling was becoming too much for me and my ridiculously swollen feet! I've been in touch with the GOSH team more other the phone because of this and although we aren't able to test regularly if Orlaith is in therapeutic range for her Sirolimus treatment; we are able to determine whether a dose change in the Octreotide therapy is warranted by her BM level range. Amazingly, Orlaith is doing brilliantly at the moment and we have recently had another dose decrease and last night were offered to trial 3 injections a day instead of 4 for a week, making them every 8 hours and not every 6 hours. This is just great news, it means Orlaith is more comfortable as she's at the age where she knows what is happening and literally runs a mile, and it also means we have one less thing to worry about... and we can get more sleep!!  Some may say, and it was pointed out to be a risk by the specialist nurse, that undertaking a drastic change in medication is a lot to take on whilst being pregnant and ready to pop but I welcome the pressure as we have so much confidence that this is a step in the right direction and we will make effective progress from is.

Last night was the first trial of stepping up to 8 hourly and Orlaith slept beautifully, she always sleeps through the night but she's very unsettled around injection, medicine and feed times. I think this is because we have successfully dream fed her for a year now and her stomach subconsciously knows it's empty or needs milk, causing her to be unsettled and sometimes wake, although to completely wake is very rare. Similarly, we slept like logs and got 4 hours straight which we haven't had since before she was born! I woke up feeling so refreshed! I'm so happy we have made it to this point and I hope it continues so we can get her off Octreotide therapy completely and leading a normal life as much as possible. At 16 months, I think she deserves it!

The next steps are to hopefully carry on the week long trial with success so we can continue to put a new treatment plan in place and we are also looking into changing her feeding routine too; to make it more suitable for Orlaith, her age and dietary requirements. This will include looking into amounts, measurements and timings of certain meals, as she is still heavily milk reliant - some days she has her whole intake just in prescribed milk, on top of 3 meals and snacks - we would love to not need to give her so much; how she isn't overweight and still tiny in 3/6-6/9m clothes in beyond me!! I hope that over time we can meet these steps and become closer to being mediated through diet and not treatment.

My little Rae of sunshine turned 1!

Our baby is 1!

So my baby hit the FIRST birthday mark on the 13th of April! The time has flown by, it seems so surreal to think that it's been a whole year since she was born. I've never known a love like it, I have never a little girl who is so loving and courageous and it makes me so proud to call her my daughter. There were times we thought we wouldn't get to this milestone so it's extra special for us... and of course, I had to spoil her rotten!

Unfortunately we had to cancel her party that we had planned for the day before her birthday, which I'm still pretty bummed about but there is always next year... and I'll make sure it's a big one! Despite this, her actual birthday was great. We had a lovely day; we spent some of the afternoon at her little friend Frankie's birthday party, everyone had a lovely time and Orlaith loved it!! Although it being Orlaith's birthday, they acknowledged every babies birthday too which was so nice of the parents, they hired soft play equipment and it was so much fun for them. We then spent the rest of the day with family; going for a walk, playing in the park with a spot of football and even adventured on the miniature trains; it was such a simple day yet so nice to spend it with our nearest and dearest in the sunshine! ☀️ Orlaith's also so close to walking now, she can confidently walk between objects and has taken quite a few steps - I can't wait for the time when she's independently walking! LOVE milestones, they always remind me of lucky I am and how clever my girl is.

Of course it wouldn't of been a M-Banks birthday without more family round in the evening for dinner, treats and plenty of birthday cake. Ah I was so excited for her birthday cake, of course with Minnie Mouse on it she loved it! This child is literally obsessed! So cute when everyone sings happy birthday to little ones and they just sit and stare as if to say 'what are you all doing?! ooooh fire, lemme touch it!'. That was definitely the case with Orlaith, I don't think she knew what was going on at all... she just wanted the cake! Along with the food, decorations and of course the attention, she had an amazing day. I thought I would be an emotional wreck, but somehow I managed to keep it all together! Thank you to everyone to helped us celebrate our girl's birthday with us, and for all her gifts too! Here's to another amazing year! In 18 weeks, she will be a big sister and I'm so excited to celebrate all the future occasions and moments with them! 

Here's to another amazing year; Happy Birthday our beautiful girl! xxxxx

The classic HI vent

So I've been ridiculously busy these past few weeks, it is almost as if everything that could go wrong has gone wrong - you name it... everything from death, to giving up work, to credit card fraud and everything inbetween. Stressed to the eyeballs doesn't cover it!

However, despite all this.. I'm always coming across the same threads, comments and rants when it comes to HI and how others think they can say whatever they like to you without taking anything into consideration. Orlaith is six and a half months old now and I'm still having to deal with annoying people and their unpleasant, irksome comments which I could totally do without! One thing I've noticed since having Orlaith, not just with myself but other parents to patients too... is the frustration with people who really have no clue, who feel they can attempt to preach to you about my child and/or hyperinsulinism. I could simply mention that I'm tired and in response I hear, "Oh welcome to parenthood!","Oh the joys of being a parent" or the most irritating of them all; the dreaded "it can't be that bad". 

I find it ridiculous that someone thinks they can tell you how to look after your child anyway, completely healthy or not, but it's beyond annoying when they feel it's 100% necessary to all of a sudden become a guru in your child's condition. I stand there in shock sometimes with the utter rubbish that these morons come out with... I mean a Dr who has studied this condition for years and years - who is also the worlds best - knows a lot more than these people yet they still go on to act and talk to me like I should be taking their advice. 

"My baby had that", "I have gestational diabetes, my baby must have it", "oh my brother in laws friend has the same, just take care of it at home", "it's just like diabetes", "natural sugars will sort that right out, just try a banana"... A BANANA! If only that was the answer.. I'm sure plenty of parents around the world would be rejoicing, let me tell you! Chances are they have never come across hyperinsulinism. When something as serious as brain damage or organ failure comes into the mix and as a parent I need to monitor and care for my baby 24 hours a day, 7 days a week to prevent it - don't sit there and tell me "it can't be that bad". I would praise Orlaith's dad and I, we never ever complain; we simply just get on with things and accept that it is what it is.

I don't think we should even get started on the lack of sleep. You would think this particular sort would have gotten the hint but no... once again they want to bang on about the joys of parenthood. You have no idea! Yes, EVERY parent will experience lack of sleep at some point and yes, some parents will experience this longer than others; BUT, being up all night (whilst your baby sleeps blissfully through the night, completely undisrupted) conclusively carrying out the 24 hour care required for your child's condition and only functioning on anything from 20 minutes to an hour here on there (if you're even thay lucky) is a completely different ballgame! Unless you have to administer medication, injections, feeding every 2-4 hours, regular glucose monitoring all throughout the night to a sleeping baby, don't even make a judgement. The same goes for during the day but people just talk to me like I do nothing but sit around and watch TV all day!

Others really need to think before they speak, I've seen this happen again and again with HI patients and their parents- we have every right to complain once in a while, don't tolerate someone telling you anything that you don't want to hear. At the end of the day, you are your childs parent; you are their voice as they can't speak for themselves just yet, you know best!

Anyway, I'm glad I got all of the above off my chest. Happy Wednesday everyone! X

More babies?

So much talk of babies recently - there is definitely a baby boom going on, 2013 has been full of births and pregnancies! 

It's no secret that I didn't want more babies up until recently -  I had a far from great pregnancy, labour and delivery and I certainly did not want to go through any of that again. Also with Orlaith being how she was, I definitely did not want to experience that a second time round. I would have been happy with one child.  It's no secret that I now want more babies, I've always loved babies and the older ones too, and would go as far to say I'm quite a natural with children but now I definitely would like to add to the brood. 

I think deep down it's simply because I miss being pregnant, I adored the pregnancy excuse! I definitely had my hard times whilst pregnant (what pregnant women doesn't?!) but I just loved feeling connected with my child and feeling her move around; such a surreal feeling that I wish everyone could experience at some point in their lives. I am no longer contented on having just one child, I want Orlaith to experience siblings and have that closeness of a family like I had growing up; but I am 100% contented with her, so if she is all I'll ever get then I'll die a happy lady!

Here's the hard part, although it's "a very slim" chance of having another HI baby - statistically one in four - would I willingly put myself up for that this time round, knowing exactly what could be in store? I posted an article earlier on today (living with hyperinsulinism - for those who haven't seen it), of an amazing family who have two children with hyperinsulinism; I'm actually speechless at the courage of this family, hats off to them! It really is inspiring. It's an interesting read for you HI mummies as I know it's something we all have to consider at some point in your lives. 

So who knows, maybe next year ;)

SCBU Mummies Pt. 2

Eleanor 

After waiting what felt like years, Orlaith and I were finally able to meet up with our SCBU family when we got home and it was amazing to see everyone. At first it was so surreal, seeing the Mummies and Babies in a normal environment was just awesome! I loved catching up with them all, hearing about everything that has gone on since we all last saw each other and of course, seeing those gorgeous babies! I can't believe the babies are pushing on to five to six months old now, where has the time gone? 

Frankie and Orlaith

Lucas, Thomas and Frankie

It felt like only yesterday we would spend our days at their cots, feeling like we would never get to escape. Just to know this group of mothers personally is encouraging – the love, the dedication, the support that these women have is just inspiring. Despite what they all had to go through during their time at SCBU and even now, they are still smiling! It’s heartening to see that this particular group of people, and their children have taken all what they have been through on the chin and it’s just made them even more amazing. I would not have got through those 7 weeks without them. As for the babies… Wow, just wow... I am overwhelmed with how much they have grown and become such happy souls with their own personalities. It goes without saying ladies; we produced a bunch of beauties!! There are 6 babies altogether; 3 boys, 3 girls… and yes babies listen up; I am expecting at least two of you to marry! What a wedding that would be! Roll on the next SCBU mummy and baby meet up!! ♡♥ ♡♥ 

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

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

Roll on Monday!

No results yesterday... I am not a very patient person so this wait til Monday/Tuesday is going to kill me! It's strange that for the past 3 months, we have been waiting for this so surely 2 more days wont hurt? I can happily wait, as it helps to go over every possibly situation in your head. If the Drs told us "it's focal, its a tiny lesion on the tail" I will be a very happy mummy! It's not always the case so I have to make myself acceptable for any unexpected outcomes. Well here's to hoping x

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.

♡ 

♡ 

♡ 

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. ♡♡♡