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.

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!! ♡♥ ♡♥ 

Re-admission baby!

So today (sept 9th) we have Orlaith's re-admittance at Great Ormond Street Hospital. Every so often, Orlaith will be re-admitted for monitoring, fasting, profile building and investigating...to be honest, it could not of come at a better time, as she's been up and down lately with no real explanation as to why. This stay is intended to be short stay, hopefully it stays that way! 

We are on Kingfisher ward and as Orlaith is still a high alert patient, she has her own room...with an en-suite so I'm a very happy mummy, no communal showering for us! Haha! 

Today will be spent building a BM profile, so these will be done 2 hourly to see how she is coping with glucose levels and also to get an idea of where we're at in terms of her octreotide therapy and feeds. I'm feeling pretty good about it this time round; hopefully we'll get some solutions and questions answered! Orlaith also has a gallbladder scan today to see how that's getting on too. She's gonna be a busy lady! Its so strange being back though, its almost like this is home and we've been on holiday for 7 weeks at our house!! ♡

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. ♡

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!