#neonatalbaby

[mumofadaofficial-blog]

The Gap Filler

Firstly, a massive thank you to everyone that has read my first post! Your messages and comments have been overwhelming and you will never know how much it means to me to know that you all care enough to read our story - you guys are friggin amazing!! And I am so pleased to see that what I am doing seems to be helping or comforting others in some sort of way.

SO - last time I took you through Adas birth and getting her home. I touched very very briefly on the stressful time we had before Ada came off oxygen so I want to give you a run down on that. As traumatic as Adas entrance into the world was, life didn’t seem to get much easier for us and I think it almost completely fried my brain, but hey, we’re all crazy in one way or another right?!

Going back to KL hospital was an exstremely hard thing for me. The memories of what had happened there were still very fresh and very raw. Ultimately though, if it hadn’t of been for the team of people that initially worked on her, she wouldn’t be here today. So I sucked it up, put on my big girl pants and was ready to give it another chance. 

There was definitely a big difference to Norwich, mainly I would say communication issues that I’m hoping lessons have been learnt from now. From going through this I have realised that parents really need to be included and told what is happening every step of the way, something which I think can easily be overlooked. When your Childs life is in the hands of someone else you NEED to know what is happening. 

I don’t want to dwell too much on the things that were done wrong once we returned but it was a struggle and no parent should have to feel like they are battling with the providers of your Childs care - my advice would be to stand your ground, be strong, ask as many questions as you want and make sure you are happy with the answers and information given. 

I also think its important to remember that not all people take the same pride and care in their job as others do, so we always tried to make a point of thanking the people that went the extra mile for us. 

On the day that we were finally able to take Ada home we were not allowed to do so until she had undergone an MRI scan on her brain, we were told this was just routine. There wasn’t much explanation as to why. Instantly you think to yourself ‘omg, whats wrong?’ ‘Is there something wrong with her brain’ ‘is this routine or are they hiding something from me’ After doing research and asking questions, it is a routine thing to happen after a baby has been starved of oxygen at birth. Thankfully with Ada there was no signs of damage to her brain in the initial overview and this was then backed up by a specialist team at Nottingham (you still can’t stop your brain from thinking ‘what if?’ Whilst waiting to get those results back). After this she then had to have blood tests and a scan on her liver due to certain enzymes not being at an appropriate level. Without sounding thick, I didn’t even know what that meant and my head was just not processing anything properly. The information given to us on what would happen if it didn’t sort itself out was also very patchy. 

Now taking a new born home on oxygen is bloody tough, you find yourself confined to your bedroom or to the lounge, the rooms where we had the oxygen canisters. And you feel very restricted and trapped. So much so that I pretty much only went to my mum and dads or to Tesco if I was feeling super brave. Trying to get a baby out of the car is hard enough when you’ve never done it before, let alone having a back pack with oxygen in it too. Personally we felt that we couldn’t travel up north to see Nathans family as it would be too hard, so unfortunately people had to miss out. Trying to run a house when confined to those two rooms is very hard, that whole sleep whilst the baby sleeps is not even a real thing! When Ada was sleeping I wanted to do my washing, clean up, eat something or even just sit outside and have a coffee. Looking back, I wish I had relaxed a bit more and just thought fuck it! Those jobs were not going to please anyone but myself. Being easier on myself after having a c section would probably of been a better option and I shouldn’t of pushed myself to do so much when it was sometimes really hard to do so. Thankfully Nathan was a good team mate and I have lovely family and friends who all tried to keep me sane and help as much as possible in the process.

In order to assess how Ada was coping and trying to wean her off oxygen it meant having weekly 24hr assessments on an oxygen monitor at home. If you haven’t ever had any experience with one of these its a clever, annoying as shit, little machine that shows her oxygen saturation levels via a sensor on her foot. If they drop below 90 it makes the loudest most annoying bleep you’ve ever heard…great when you’ve just got her to sleep and shes moved and knocked her sensor off 🙄. They are used a lot on premature babies, however, Ada was a full term, strong bruiser of a baby who really enjoyed throwing her feet around and getting into massive strops! (I have absolutely no idea where she gets her attitude from?!) It soon became apparent that trying to get accurate readings from the machine with the amount of movement she was making was going to be hard. The machine would go back, data would be downloaded and the readings were not accurate enough due to movement. It felt like a constant ACCESS DENIED. Back to stage 1, which is really hard on your mental state and emotions when you are desperate to get your baby better. This would mean we would have to repeat the 24hr process and her oxygen level couldn’t be reduced, even though as her parents we knew she was ok and capable. I was left with no choice but to provide a written documentation of EVERY movement that made her sensor drop throughout the 24hr period, sometimes meaning I wouldn’t sleep just to be able to prove that she was doing well. We’re talking like mental person sending in four A4 pages of movements! This went on for weeks, the longer it went on, the stronger Ada was getting and the harder it was to get the readings. At the time she was also struggling with silent reflux which seemed to play up especially for us on the days she had her monitor on - thank god we have now found infant gaviscon!! 

As well as trying to cope with the oxygen there was a lot of different appointments at home, the hospital and doctors. Blood test for her liver enzymes again, health visitor, collecting oxygen monitor, hip scan, monitor again, physio, dropping monitor off, monitor again, dropping it off, another blood test, monitor again, health visitor, monitor again, immunisations, monitor again, physio, monitor again, consultant appointment, blood test, another hip scan, more immunisations, monitor again and physio - you get my drift and I’ve probably missed some out! Whilst all of these appointments were happening I was then having to chase for answers and information on the outcomes of all of these as the communication was very poor. But if you ask enough questions and make enough phone calls, eventually someone will answer you and you will find out what you need to know. Personally I don’t think it should have to be like that and it makes the situation a million times more stressful. But I do understand that staffing levels don’t always allow you to be the main concern and if your out of sight you can often be out of mind. 

Gradually throughout all of this and my crazy note writing Ada was weaned down off her oxygen one step at a time, then it was stopped in the daytime so she only had to go on it at night. 

Finally on the 27th of September we got the call that I had been longing to get! Adas consultant was happy for us to turn her oxygen off, completely! No messing around at night, no more changing plasters and making her face sore (making you feel like the worst person in the world), no more fighting to put her cannula up her nose and no more sleepless stressful nights with a monitor bleeping in your ear! I cried and then rang Nathan and cried a bit more, then I probably rang anyone else in my phone book that would answer, and you guessed it, cried some more. For once throughout this they were tears of happiness and relief. She had finally done it, our miracle baby had stuck her fingers up to the world and smashed it! In the words of the king that is George Michael ‘You got to have faith’ 😉 

Now, our only reason to go to the hospital is for extra immunisations against bronchiolitis, unpleasant, but better than her being hospitalised again or poorly. And for routine check ups with her consultant which will happen until Ada is 2. 

Deep breath for this part. 

The effect that this has had on me has been unreal, and although Ada is fighting fit it still isn’t easy. I was always quite ignorant to issues involving mental health and was one of those ‘just get on with it’ people. I’ve now realised that sometimes this just isn’t possible. When something in your life has been so traumatic and so stressful it can be really hard to deal with and process, my main concern was Ada and to worry about me later. It is also very easy for people to say ‘she’s fine now so don’t worry’ but you do (please don’t take offence if you have said this to me!).

Hiding your feelings and pretending everything is ok is not healthy for anyone, but to seek help was not something I was prepared to do until recently. I am by no means crazy, or a manic depressant but I do have my bad days. Days when things get to me and the stress takes over, flash backs, not being able to sleep because my brain won’t switch off, worrying that something will go wrong, being well and truly put off from having any more children, having to have full control of all situations, and for weeks, I fully blamed myself for what happened to Ada and believed that I should of known something was wrong and prevented the whole situation. I have felt in the past like I am not good enough, like I’m doing a shit job and like I can’t cope. I have struggled to speak about how I feel as I was worried I would be judged or people would think I was a shit mum or that I couldn’t look after Ada properly. I have also pushed help away as I feel compelled to be some sort of ‘super mum’ and that no one else should be doing my job. 

I still cannot talk about what happened without crying, and there isn’t a day go by when I don’t relive it at some point. I constantly look to see if Ada is developing as she should and is there any signs that something isn’t right, when I should just enjoy every moment. Living with me is probably a nightmare, Soz Nath, Mum and Dad - cheers for putting up with me 😘 Somedays I will snap at the smallest thing and overreact, whereas another day that same thing wouldn’t bother me in the slightest. 

I am a very private person when it comes to my feelings and I have always thought to show people the venerable side of me would make me seem weak, when in fact it does the opposite. From doing this and the responses I’ve had I now realise just how important it is to talk out and show everyone the old saying of ‘It’s ok not to be ok’. To write this down and tell you all what has happened is unbelievably difficult, yet very therapeutic and I strongly believe that if more people were to speak out about how they feel and the effect it has, then it wouldn’t be such a taboo subject. Because it most definitely shouldn’t be and anyone who says they haven’t had a full scale meltdown at some point is most probably lying to you. 

Ok, so might as well of just posted a naked picture of myself with the caption ‘HERE I AM’ after all that, but thats probably about as honest as you will find me. 

Amy x