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. ♡

Bye bye Hickman!

So Orlaith had her Hickman central line taken out yesterday! After 7 long weeks, it's gone. 

I always hate walking her down to theatre but this time was different as it was only a 15/20 minute procedure and she had the anesthetists and Dr coo'ing; she's a total flirt and loves the attention! I didn't stay to see her put under the general anesthetic - but before I knew it, it was over. Just a few more things to check off the list before home time...

I wonder if she'll love tummy time now? Orlaith wasn't keen at all to begin with but she's beginning to love it and will roll from her side... but lately only when she's naked haha. Orlaith's doing really well on her development, considering there was the chance she wouldn't develop at the rate for her age; she can hold her head well and can sit up with support... It's amazing watching her learn and grow!

Pet hates!

I've been reading recently on various blogs and outlets, peoples pet hates when it comes to having a baby or things that never bothered them but now do - I'm pretty sure I'm not alone in this but these things currently drive me crazy!!

 

Pet hates -

1) social networking

2) irritating people 

3) hospitals 

4) people debating who my child looks like

5) my new found love for 'take a break' magazine

Explained -

1) social networking 

I hate social networking for many reasons but since having a child I find myself sucked in - I always swore whilst pregnant that I would not post about my baby and a ban would be in place to stop me being that obsessive mother who constantly uploads about their child.... Well surprise surprise, I am that person! I dread to think how annoying I've become, but I really don't care - I want the world to know about how much of a beaut my daughter is and if you don't like it, do one. I now also despise Facebook and Twitter more than ever because of the 'share' option, I simply can't stand it when random people share things - especially photos and irrelevant statuses... Like who does that? It's weird. I don't know any of these people's friends and quite frankly, they could be molestering murderers for all I know. I love Instagram though... I used to love a good vain selfie or food upload but now (you guessed it) - I constantly upload pics of Orlaith... some people love the little lady though, she's getting quite a fan club! 

2) irritating people 

I keep finding people who I have never spoken to or at least not for a few years, coming out the wood work for the down low and update - I was more than aware this blog would attract the nosey ones but ever since Orlaith's birth people I hardly know have messaged me clearly just to get the gossip. Don't get me wrong, I can tell genuine support from gossip and some lovely people out there have sent me such nice messages but a "hiya, howz ya baby?" is something I won't reply to, especially if I haven't spoken to you in years FYI. Persistent people who can't take 'no' for an answer are also a pet hate; when we're home, I will have no problem with shutting the door in some faces if they can't respect an answer they were not looking for. There's also the so called friends and family which just haven't bothered with us at all - I have a fantastic memory (and I certainly remember all the times I've helped and supported others) so I hope they get the message when they come knocking on my door and no ones willing to answer. 

3) hospitals

For obvious reasons, I now can't stand hospitals. After a long traumatic, induction, labour, delivery, post birth, Orlaith's visits and times in various hospitals; it is safe to say I won't miss them at all. Staff are lovely but my god, I won't miss them coming in the room hourly with all sorts of things to do and I certainly won't miss the pull out beds, awkward shower times and  being so far from home and my family!

4) people debating who my child looks like

In case you've been living under a rock, I've had a daughter; Orlaith, who is my double. It's uncanny the resemblence and how much she looks like me, especially as a baby. However, you do get those annoying people who are like "oh doesn't she look like..." or "I think she looks like..." - no, she doesn't... Please feel free to shut up :D 

5) my new found love for 'take a break' magazine

Understandably, I have plenty of time on my hands and since being in hospitals - I'm now a fully pledged take a break addict. It all started when I picked it up one time as there was nothing else in a hospital shop and I had time to pass, since then I've been hooked on the ridiculous, trashy stories it has every week. I need help!

And rant over :) 

It seems most of us have similar pet hates.. What are yours? 

 

... I guess it wouldn't be right if I didn't list my pet loves too ♡

1) Baby daddy

I couldn't love him anymore than I do; he bugs the hell out of me all the time and I constantly want to kill him but I couldn't ask for a better father for Orlaith, they are  besotted with each other... Definitely a daddy's girl! He's also a loyal, caring person who would do anything for anyone and I'm glad I went through this with him... This won't put us off any more babies! haha ♡

2) Parents

I don't think I've ever appreciated my mum and dad more, along with Andrew's parents; they've never stopped loving, caring, supporting and forever giving. Family is such an important thing! 

3) and of course my babe, O

I've never loved anyone or anything as much as I love Orlaith. As her parents, we couldn't be more proud (or impressed!) of her and how far she has come. Everything thrown at her, she has handled it amazingly; a fierce soul just like her mumma ;-). She makes this rather shit journey totally worth it; love you crazy amounts cupcake xxxxxxx

We're so sneaky!

So to end the never ending questions... 

Yes, we do know when we are coming home! Finally, we got the long awaited going home date last week but we have decided not to tell anyone. We've decided to do it this way as we want privacy and time to ourselves. Bringing a new baby home is stressful enough, let alone a baby with care. We are not in any rush to visit people or to have people visit us, for the past 3 months Orlaith had only known hospitals and drs - she needs to learn home too. 

We're so happy with Orlaith's outstanding progress, what she has accomplished in a week is just amazing. Home before you know it, baby O ;)

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

Disconnected.

Orlaith is no longer connected to anything and I can't describe how amazing that feels. 

Since birth we have battled with wires and tubes, over time it's gradually gotten to a point where its easier to hold her; we've been okay with it, it's visitors who tend to get weary incase they mishandle her, set the monitors off or pull something out. Like many other HI babies, Orlaith was always bound to an IV pole which didn't give us much chance of doing anything but we worked with it; she now has nothing attached to her, even her ng nose tube is gone. 

The only thing left is her central Hickman line, which she'll have surgery to have that removed before we eventually get to go home. Its a central venous line which was used for her dextrose - they remain in place for long periods of time and are most often used for long term medications and for intravenous access. 

This line tunnels under the skin, into the vein which goes right round to the right atrium of the heart. I can't wait to get this thing out! 

Orlaith is still on octreotide, but instead of intravenously through the thigh, it's now given by injection every 6 hours and this is how we will treat her at home. At first I wasn't comfortable injecting her, but it really isn't as bad as it seems - its over before you think about it. We've also taken over the hourly BM's (heel pricks to test the glucose level) but these will graduate to 3-4 time a day eventually. 

It's taken us 12 weeks and 3 days to not be connected to anything, everyone differs - some are a couple of weeks, some are months but my biggest advice to parents with a 'connected' child is to take each day at a time. It really has flown by. 

"Disconnected" means one thing though- HOME. 

Proud mum moments! ♡

So Orlaith rolled over for the first time yesterday! She's able to flip herself over from her side and get onto her tummy AND she's also not connected to ANYTHING(!!!!) no IV drip, no continuous feed, nothing! I don't think I have ever been able to walk around with her properly, this is something I will never take for granted. 

I'm way too proud of this little cupcake! The past week has simply been amazing for her and her progress. ♡

Bottle feeding.. It's the small things!

So my babe has been feeding by bottle during the day for the past 4 days! 😁

It's such a small thing, but its made a huge difference to her progress and I'm absolutely thrilled she doesn't need the ng tube for daytime feeds anymore! The tube is still used for her continuous feed during the night - this is where her milk is pumped continuously over the duration of the night, she has 21ml going into her system every hour and this helps her to remain stable. When she hypos now, we can give a bolus feed (to bring her sugars back up again) instead of her original hypo plan of hypo stop (glucose gel absorbed into the gums), then 10% dextrose bolus if that fails and so on; which is simply amazing. Orlaith's like a different baby now, her blood transfusion was definitely needed, too - she's back to her normal self, constantly chatting and smiling! 

Our next steps are to gradually get Orlaith to four hourly feeding as we are currnetly on two hour feeds and on the bottle during the night too. 

Go babe, go! 💜

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! 

Results day.

So this morning, I woke up feeling pretty optimistic - I felt we were getting what we had hoped for. Orlaith wore a dress (for the first time!) for the occasion and we were all set, ready and waiting.... Results day! Ward rounds were running slightly late which didn't help our nerves or anxiety - we have been waiting for 11 weeks for this day, patience is wearing thin and all we want to do is know what we're dealing with.

All in all, it was of normal fashion.. They sat us down, gave us our news, answered any questions we had and that was it. It was an extremely emotional moment but keeping O in mind, we just want her healthy and well. 

We didn't get the news we had hoped - Orlaith has diffuse CHI, the most common form and although blood tests indicated it was focal via genetics, as I said before it is possible for the outcome to swing either way. Haemoglobin has also been detected low consecutively for quite a few days so hello blood transfusion number two! Octreotide (intravenously through the thigh) is going to take over as her main source of insulin management, its a hormone which helps with glucose levels and is common in diazoxide-unresponsive HI patients, like Orlaith - this will run along side the glucagon until her BM's are above 10.0 then glucagon will stop. If BM's are still above 10.0 then dextrose will stop. 

So our plan now is to trial the above and keep going..stabilise, monitor then home. If it doesn't work, then we start again until the HI is stabilised. This can take weeks or months, there is no time scale. 

Today certainly wasn't the day we wanted but we couldn't be more proud of Orlaith; countless nurses and drs have told us how brave she is but the courage she has is extraordinary We'll get home soon cupcake, I promise!

  

One more day...

No results today :(

Hopefully tomorrow will bring us the answers we're after.

♡