No place like home.

Whether your baby is all well and fine or poorly - one thing we all want when we're on the maternity ward is to be told when you can go home. Some parents have to wait longer than others, some parents have a textbook birth and go within a few hours. It's a mutual mission that every mum longs for after having a baby... getting them home, to your safe environment and ready to start parenthood. Yes, I am still waiting for that day but I'm not alone. There are plenty of other parents out there who are also waiting and that day may never come for some, so be sure to count your blessings.

I rarely go into how I'm feeling, I think Andrew is the same, because you don't want to bore someone with your problems or feel like you go on and on about it constantly when in reality, it's the only thing we're really dealing with at the moment. Again we both have one mutual mission - to get Orlaith home, safe and well.

I can 100% relate with jealously - it bugs me when I see people walk in, sneeze a baby out then go home but at the same time your so happy for them; it's a strange mixture of feelings. Families out with their prams even pisses me off.  Our babies are like fresh air in our lungs, so whatever the circumstances, I'm happy to spend my day with her in any way that I can and I'm sure any parent can agree.

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We were fortunate enough on one occasion, when Orlaith managed without the IV, to take her out around the hospital. She was born on 13/04/13 and we took her out (well on an outing at least!) on 18/05/13, just over a month old. I honestly felt like we were so close to home, only a couple of weeks to go but she never got there. That's fine by us, as much as we want her home the need for getting her better is much greater.

O's first outing

I spent every waking minute preparing my home for my baby's arrival.. I took nesting to a whole new level (I would occasionally scrub the skirting boards during the middle of the night and all things just as bizarre...) and we spent a fortune redecorating and getting her nursery just right. But now I can't even stand in her room for too long without breaking down and having a sob, it's the simple things I long for. Orlaith's not a newborn anymore - she's a week away from being 3 months old; she hasn't even been in her home county, let alone near the front door. We can't bath our baby without supervision, we can't just put an outfit on her, we can't just sit in the garden on a lovely day like today, we can't show her off to any of our friends or family, we can't just have a cuddle on the sofa, the list goes on and on...we can't always soothe her either, she's literally bound to the one area or about a foot away from the IV pole. I can sympathise with any person who knows this feeling and I won't be taking anything for granted when we can eventually say different and we're home.

Some things are for sure though; we religiously keep the car seat within arms reach of the front door, the wheels of her pram are ready in the kitchen, moses basket in the living room... if we ever get the news of Orlaith getting a coming home date.. I want to be ready.

I come home every so often and do the washing, some fantastic people have offered to help in all ways they can...including doing our washing... but as lame as it sounds, doing Orlaith's washing is the only 'mummsey' thing I can do right now and I wouldn't want anyone taking that away from me. I actually get enjoyment from doing numerous wash loads, staying up late getting it all done and dried ready to take up the next day but it's just one of those things. When we eventually are home, its going to be completely different - no monitors or nurses in every hour, we are so catered to the current circumstances that we will have a huge shock when we are home; not only getting used to having a baby around but adapting to the homely environment, too.

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Seeing her face light up, is the best part of my day and I can't wait to get her home. She'll know everyday how special and important she is to us, she's like our reflection.. we're not just two people casually dating anymore, we have something much greater than anything else in the world that we share and that in itself is priceless.

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We will get our babies home soon (if anything we'll be calling up the wards asking to have them back for a night so we can get some sleep haha!) just got to hang in there and remember there is always someone you can relate to around you, we're all here for the same reason.

mini me

mummy and O kisses

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!

This next steps a big one, Honey!

 

eeekkkkk so Orlaith had her PET scan on Wednesday.... Only one parent could go so moons went with her so I could sleep (total beaut, right?)
So now we're eagerly awaiting the results. This is what we've been waiting for, for 10 whole weeks.. the suspense is killing us!! Everything relies on these reports and results.. hopefully then we can have a plan on whats next.

Everything all boils down to this, not every parent gets the news they are hoping for, but for the sake of Orlaith's health we're hoping it's pretty straight forward! Anyone else's baby had a PET scan? How did you find it?
It reminds me of the MRI I had to go for after having her, a very noisy doughnut! O slept the whole way through, under sedation but we had to deprive her of sleep so it was affective enough to last for a long while. If anyone knows my daughter, you would know this is so hard haha.. like mother, like daughter...

So it's friday now, I hope we get the results today or early next week.

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

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

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

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

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

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

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

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

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

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

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

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?