April 2015

Wow, its been how long?!

Okay, so I've been terrible these past few months for updating this blog! Apologies for the silence; classic scenario of busy mum and HI child! Life is crazy busy at the moment, I can't keep up. So, I think it's about time to update the CHI family, or just the general readers who like to keep up with us...

Orlaith is doing okay at the moment - unwell and the HI is playing up, but she's her usual happy, charismatic self. Medication wise, we are still on Sirolimus twice a day and the daily injection. We actively worked for so long to decrease the injections, from 4 a day to 1 a day but we may have to increase back to 2 a day, but I'll go more into that later on. The Sirolimus is still working well with Orlaith's BM levels and so far it is still in therapeutic range, but the downside of the suppressed immune system is still apparent as she's suffered with illnesses and infections continuously since around November time and various things have landed her in hospital. Orlaith's had chronic ear infection consistently in the same ear and has been on antibiotics for what seems like forever, but the infection is now in the middle ear and we've changed to ear drops which seem to be working great. The past few weeks she has suffered with a strange rash all over her body and up until last week, no medication had worked but now it's seems to be a possible fungal rash and this particular cream which we are now trying is doing good and it seems to be clearing up. 

The mucus on the chest hasn't eased and you may remember the sickness post a while back - I thought it was a phase, you know the classic 'lets throw a tantrum and make ourselves sick and embarrass mum in front of everyone' routine? I stuck to my gut instinct - I still can't stress how important it is to be the voice of your children! - and after 6 long, painful months of vomiting constantly, we are on the road of solution and diagnosis. Don't get me wrong, sometimes it can be promoted if she is worked up but its gunky and full of mucus/phlegm (just want you need to read whilst eating your lunch, right?) but usually it's unexpected; we could be walking to the park, she could sneeze, be eating, even roll over in her sleep... she is always throwing up gunk by the bucket load and of course, it causes the havoc and starts the vicious circle when it comes to blood sugar levels. This is why it has resulted in horrific lows (recently she was as low as 1.4-1.7 mmol/L, so horrible to watch - I was genuinely scared for her but thankfully all picked up fine with no organ damage!) and a rush to the hospital on numerous occasions and why we may need to start the second injection at her vulnerable times to keep her stable at home. After chasing it up, our GP has started her stomach/reflux medications again gradually to see what works and what doesn't, whatever doesn't work then we'll stop and try another. I feel like maybe we should have kept the medications going, but this is just what happens and I'll take it as a learning curve. We start the first one today so hopefully it will go well and my washing loads can decrease with the lack of sicky clothes!  The past few days she has been in the low 2's and no higher than 5 along with a fever, a major cause for concern but she's got her visit to GOSH on Saturday 4th so hopefully we can touch base on her medication and see what can be done. It seems to be never ending! 

Onto the good stuff...

April is upon us which means it will very soon be Orlaith's SECOND birthday; I can't get my mind around it, how is it even possible! I swear I was in theatre just yesterday having her and in the blink of an eye she is going to be 2! I count myself very lucky that we are where we are, the road was meant to be so different but she's gone against it all and has come out such a strong, clever, beautiful little girl. In terms of her development, she is still on par for others her age, or the 'average' as others like to say. I decided to apply for a placement at pre-school for her and Orlaith got her place - at the same pre-school that myself, my siblings and my family went to and the lady who ran it when I was was a little girl is still in charge which is really lovely; they have been so accommodating with Orlaith and have gone the extra mile for her needs, I'm so happy that she can go to a good school and thrive in an environment that she loves.

Mila Moo, I see you! 

...And then theres Emila, who is now 7 months! Again, can you believe it?  She is doing brilliantly - she has two teeth currently cutting 4 top ones (major ouch!), crawls, sits up, pulls herself up and cruises the furniture and now she is trying to walk away... this usually ends up in her falling or cruising back, its as if she doesn't realise just how small she is! I have no doubts she'll be walking before she's 1 in August. Being 10.2lbs born, they do say the bigger baby does more sooner, Orlaith wasn't far behind in the milestones but I can't believe Mila seems to be doing something new everyday. Mills also loves her food, I've never known a baby like it - greedy guys usually wants the food as well as milk feed! She's definitely taking this 10 pounder thing to a whole new level!!

We recently had their pictures done, when Mila was 6.5 months (just like we had Orlaith's done at 6 months) and I must say, they are so frickin' cute!! Despite it being a small struggle getting them both to smile/pose, they came out great and I've started looking at frames and all the other boring decor stuff that us mums like to look at and buy so I can put them up! I'll post them within this blog so you can have a ganders, more than happy to show them off... even with Mila's open mouth smiles beautifully dominating every pose and picture! 

I couldn't love them enough, who needs anything else when you have your children around? They literally make my life. 

♡ ♡ ♡ ♡

Emila Coco

Orlaith Rae

Emila & Orlaith

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..."

 

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.

Second baby so soon...

Life has been crazy busy, what with a 1 year old and an unexpected move... I sometimes I forget that I'm pregnant! It is completely safe to say that this pregnancy caught me completely off guard but I wouldn't change it for the world. Of course, with Orlaith's CHI being diffuse and from a genetic gene, the response has been mixed and I've had quite a few questions commonly asked....

I found out I was pregnant again around the end of November/beginning of December, I was around 5 weeks at the time and Andrew was away in Cannes with his work. I had felt nauseous and had the most dreadful migraines, it hadn't crossed my mind that pregnancy was a possibility but surely it couldn't be right?! I had felt like this a couple of weeks prior, during Orlaith's 2 week admission to GOSH but put it down to nerves and worry - I think I even joked that I hadn't felt that crap since I was last pregnant with Orlaith but again, it never entered my mind that it was a possibility. When the pregnancy was confirmed, I was unsure as to whether I would be able to cope with two children under two - as much as children a year and half apart is not uncommon, having a child who requires extra attention and 24 hour care is less common. We haven't slept a full night since Orlaith was born, surely we must be mentally insane to add a newborn into the mix? 

Genetically speaking, we have been told it could be a 1 in 4 chance for HI under our circumstances but the average being a 50/50 chance - it really depends on how the genes present themselves and what luck you have. This has put so many people off, especially if they have a child with HI and I believe that until you experience this condition first hand or deal with it on a daily basis as a parent or care giver then you will never truly understand - I can 100% comprehend why people go on not having any more children and why other ways are looked into... IVF via donor, adoption, fostering etc. As parents, Orlaith's dad and I said from the beginning that we would like more children if it was possible and that HI would not play a factor in our decision. Statistically speaking, as long as we have children together so its our DNA doing their business, the chances remain the same whether we have another child now, next year or in five years which is why it doesn't play a put in our decision process. Of course, as with any expecting mother, my baby's health is paramount and I want nothing more than a healthy baby but if they unfortunately have HI too then I would consider it 'lucky' that we have the knowledge we do now - we have a fantastic team looking after Orlaith, my family are supportive and I know I can count on Andrew for literally anything.

The downfall is, at this current moment in time you can't "test" for CHI in a pregnancy, so more care and monitoring has gone into this pregnancy. As many people know, Orlaith as a large ASD in her heart which thankfully at the moment hasn't worsened and surgery is a long way away, if it's still present at the age of 4/5 then keyhole surgery through the thigh will take place but if it get worse at this age then open heart surgery will need to take place. As far as we know, she was born with this and it got slightly worse after her central line was placed. This time round, I have been for fetal cardiology scans and appointments at St Thomas' Hospital in London for an a full examination of the baby's heart and luckily so far all is looking well; unfortunately it doesn't eliminate any future heart problems for definite but its relieving to know that for now all seems well. I also have consult appointments regularly along with scans every 2/4 weeks and I see the midwife more often than most to keep an eye on things. I feel completely supported by my community team, which reassuring on the non CHI side of things that all areas are being looked into. If CHI is detected then the team at GOSH will be on hand to monitor and treat. 

Our baby will be monitored in SCBU once it's born for monitoring, again the team there are amazing so I know she'll be in safe hands and it won't be as daunting the first time round.. but I hope I get the chance to take them home fairly quickly. I mentioned in a previous post, a mothers 'mutual longing' to take their baby home and I really struggled at first after having Orlaith - I relate heavily to anyone who has been in that situation of not being able to take their baby home straight away or if their bundle of joy is not as healthy as they'd like. I find that I practically throw myself at people who are or have been in a similar situation as I was with Orlaith. I struggled after Orlaith was born, not only mentally with PND but also with the fact that it didn't matter how many people tried to console you, they could never imagine what it was like. I found myself jealous of people having healthy babies and taking them home shortly after giving birth and I was racked with guilt always wondering why it was my baby. No one in my family had taken a journey similar to mine, except my Nan who unfortunately lost her daughter at the age of 2, so I found it hard to digest the practicality of having a poorly baby. So after all this, I had to question whether I could go through it all again but this time with a 16 month old. Despite all this, I'm not scared as I feel I know what I need to right now and I believe that anything else I need to know will come to me in due time.

Also in comparison to Orlaith's birth, I would like to have the 'ideal' birth that I longed for when I had her but of course, it never works out how you want it to so I would love it this time round. No theatre and 5 epidural top ups for me this time round, thanks... I also want to be able to walk and not have to be aided everywhere I go for the first few months after, practically learning to walk again! I recently had a meeting with the anesthetists to flag out any issues, discuss pain relief and to get a plan in place for when I go into labour. I have to say, I was dreading it but it turned out really well - due to my BMI (not going to lie, it's on the high side and I've worked hard to maintain my weight), it was a worry if I would be able to have pain relief, which could cause problems if theatre is needed. I want a smooth labour with as little pain relief as possible, so thankfully we were all on the same songsheet! I had my back checked and an epidural can be sighted should it be needed for local and my airwaves are also adequate if general anesthetic is required.

So in regards to questions you've asked me, I hope I've answered them. Don't let a statistic put you off, it is not worth the stress and worry; it's not healthy for you or your baby! Surround yourself with positive, supportive people and enjoy it. I have just over a month til I'm due and I couldn't be more excited and I can't wait for Orlaith to meet her baby sister! 

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

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

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

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!

My first post! :D

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Orlaith, 8 weeks

My name is Limara, I'm 23 and I live in Berkshire.

I have an amazing daughter, Orlaith. She was born with CHI.

I still dont know why I decided to a write a blog - at first I wanted to blog all of our experiences with CHI - I find it fascinating reading other parent blogs about their children with the condition and hearing all of their stories. Having something to relate to at a time where you see no light at the end of the tunnel is inspiring.

So, why not write one myself so others can relate?