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.

I'm Back!

So after 7 weeks off from blogging and emails, I'm back and have so many updates!
Orlaith is doing great and is now a big sister!
Look out for my updates that I'll be posting throughout the week...
xxxx

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.

Emails!

I love getting your emails and answering any questions or interest you may have about CHI. I'm glad i have been able to help and offer support to others, especially those of you who read my blog from all over the world! Amazing! It makes me happy that I decided to share our experiences.

If you would like to email me, please feel free. I will respond as quickly as I can.

limarabanks@gmail.com

Please note I AM NOT a medical professional, I will happily answer questions based on MY PERSONAL experiences but I can not offer medical advice or a professional medical opinion. Please seek medical advice from your GP, doctor or consultant. Thank you. 

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