Different isn’t so scary…

 

So, it’s the end of the year and as I have just fed Freya and she’s drifted off to sleep I sit there looking at her, thinking, ‘Why was I so scared?’ It’s crazy that something in life can be thrown at you, feel like you’re going through the worst time of your life questioning every little thing you do or say, thinking you’ll never come out the other end, when in actual fact different doesn’t have to be scary. Now I’m not saying that when you are thrown such a curve ball in life that you shouldn’t overreact or freak out at prospects, I’m saying things do get better with time and healing. If I read this when I had Freya back in March, I wouldn’t have believed this was me talking.
Reading my first blog entry makes me so emotional to the point of tears rolling down my face. This is only because it’s sad that I felt the way I did giving birth to Freya with no idea that she would happen to have Downs Syndrome. I look at her now and I even forget she has Downs Syndrome. It is amazing how far we have come and grown as a family unit.
If anything, this year has taught me a lot. Don’t over think things, its never as bad as you think. Take time with hurdles, cry, laugh, talk, scream, shout go crazy but get back to being you. Do what you have to do to make you, forget people’s opinions it doesn’t matter. Take things day by day.
This past year I feel so proud of where we are now as a family. Never in a million years would I imagine where we are today. We have had amazing support from family and friends! This year for us has been bitter sweet. We gained our beautiful baby girl who is just so amazing with so much strength, but it has been the biggest challenge we have faced with her diagnosis. We have all been through so much with her from the start, being taken away from 4 hours after having her to neonatal, multiple hospital admissions with bronchitis, major heart surgery and then causing herself to have a cardiac arrest to which we are very lucky she is with us today, thank goodness for the amazing team in Southampton on E1 ward… Sometimes I do still feel envy with other mums with your ‘typical’ ‘perfect’ baby that doesn’t need additional needs but I’m so grateful for Freya, to us she is perfect. Perfect is what makes you happy not everyone else. There has been some mums that have lost their babies and there was one in particular that had messaged me for support, he sadly lost his life not so long ago and that really got to me even though I hadn’t met her but I felt so upset for her. Things like that just bring everything in to perspective. Cherish what you have, you never know what tomorrow will bring.
Next year is an upwards journey continuing with Freya’s brilliant progress with feeding, growing and developing. We have also got a year of WEDDING planning to do as Darren and I booked in for our big day!! So, something great to look forward to and prepare for!!

I suppose this blog entry is just a reminder and message to anyone, despite if you have or are going through a diagnosis of your baby having Downs Syndrome or even just going through a shitty time, is to just keep doing what you’re doing, don’t worry about anything else just work on you. Like Mrs Potts from Beauty and the Beast said, ‘Things will be alright in the end, you’ll see.’ (yes I’m a big fan of that film, original though not the new one 😉 )

Anyway, I hope 2018 brings lots of brilliant happy memories and health your way!!! As always, I appreciate everyone’s support since I have begun blogging and sharing Freya’s life with you all. Keep sharing and I hope that I can help ease other parents minds with the same diagnosis and show you that Downs Syndrome isn’t something to be scared of because they may seem a little different to others, to me it means nothing, my baby girl is just Freya that’s her, nothing more nothing less. She is amazing.

Much love as always! Stay safe and look forward to sharing Freya’s journey in 2018!!

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‘What’s wrong with her?’…

 

This has become a question I’ve been asked a bit more frequently… there is nothing ‘wrong’ with Freya, she just isn’t your ‘typical’ healthy baby. I’ve read a lot on language and the way people word phrases etc and it isn’t until reading them that I have been so naïve about the way some people have addressed me about Freya. Yes, it does get to me more so now I am more aware of it but then on the other hand there are times I am more empathetic of the way people have asked me, because before having Freya, I suppose it would have been how I may have asked someone about their baby/child because before Freya, I wouldn’t have known what they go through with someone with additional needs. It’s hard to word phrases without insulting people unintentionally.

 

I suppose this blog piece is a little rant. While I know some people do not know how to ask about her condition and why she has a feeding tube, it’s how they word it and the tone of voice and that little head tilt they do like ‘aww what is wrong with her.’ I am always open to talking about Freya should anyone ask, but I feel myself being a bit abrupt with strangers when they ask, ‘what is wrong with her?’

 

Firstly, she’s not some kind of alien she is just my baby girl. Just like any other baby, she will progress differently to others but will still get to those milestones. I look at Freya now and she’s become this little character in her own, she’s reaching her hands out to grab my face and hold it. She is rolling over onto her side then getting herself in a huff because she doesn’t like being on her front for too long, just like Harry would when he was a baby. She still does all the things other babies do. Just, she will do it in her own time … LIKE. Every. Other. Baby.

 

Since Harry has started school and meeting more mums, some of which have babies, I had always had some anxiety of how we would be accepted and yet, they’ve been so supportive, not looking at Freya like she won’t/can’t do milestones their baby have done or will do. They’ve always been sensitive to asking me about her. Like everyone who meets Freya they fall in love with her and see passed her Down syndrome.

 

The Day We Have Been Waiting For…

** Trigger ** some pics may be upsetting to see

Thursday 20th July…Pre Op observations
So, this is the day we have been waiting for, preparing mentally for this moment. A surreal realisation your baby will be going under and going through major heart surgery! I’ll be honest on this day I was still thinking something will get in the way and it not happen. The previous day she had a high temperature of about 38 maximum, but was ok in herself… ‘here we go again…’ I thought. Anyway, Darren still went to work as normal on that Thursday and I took Harry into nursery early to get in to hospital for 11am. We settled into our bed space for the day seeing how things panned out as in will they still go ahead with the op. Right now, I had felt cool as a cucumber not really thinking too much into the next day.
There was a little boy about 8 in the bed opposite Freya waiting for his procedure, and I remember watching his parents go with him and come back, the mum visibly upset, which then had set myself off because that will be me in the morning taking my little girl down to theatre… The poor lad come back and was so sick from the anaesthetic. I just felt so sorry for him because he was so upset with feeling like crap. I wanted to hug him! Nerves starting to creep in to me…
As the day had progressed with regular normal observations they do, temperature/heart rate and breathing, it had come to dinner time where the decision was made to just go ahead with the op as it all was safe to do so with the anaesthetists’, surgeons’ and doctor’s confirmation.
Darren had come straight from getting Harry from nursery to see Freya and I in hospital. An hour or so had passed and we were greeted by the surgeon’s team with the consent form and information on the procedure and risks.
I remember them talking through it all holding the consent form in front of me. ‘DEATH’ was the first thing listed of what could go wrong. I couldn’t stop focussing on that word. As much as I tried to stay positive you always get that horrible gut wrenching feeling that the small percentage that don’t make it through could potentially happen to my little girl.
After reading through the consent form with everything involved etc I got to the end where I had to sign it. Done. This is it. It is happening tomorrow and she will be the first to go down.
Before bedtime I had to wash Freya with special gel wash and again with it in the morning. Through the night I could feel my anxiety starting to flare up. That horrible sick feeling in my stomach rising up into my throat at the thought that my baby is going through a major procedure, it started dawning on me more as the hours passed. I didn’t sleep too well that night either, don’t think any parent would giving the situation.
It got to 7am, I woke up and HELLO ANXIETY! In all its glory. Yup, off to the toilet to be sick (horrible effects of my anxiety). Feeling like total shit with worry, walking back to Freya’s cot side, her nurse had asked me if I was ok, I wasn’t, I’m totally overwhelmed with what is going to happen. I just welled up as I went back to Freya, I took deep breaths thinking I need to stay strong, she’s going to get through this and we can start to look forward in her development. I got her washed and into her gown they had given me. She looked so sweet.
Waiting anxiously to be called to say they’re ready, I held Freya in bed, feeling emotional, making the most of the cuddles as I didn’t know when I could hold her again. It felt like forever until we were called.

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A porter was waiting with a bed ready to wheel her down, I chose to sit on the bed cuddling her all the way down to theatre. By the time we got to the theatre waiting room it was about 9.30am. In the waiting room, we waited further for them to do have a briefing with the team about Freya. Then…all of a sudden whilst talking with the nurse who accompanied us down, I came over all funny, ‘Can I have some water I feel a bit unwell…’ yep I was about to pass out. Nurse’s worried, they wheeled us through into the corridor of the theatres as it was cooler. Along come the team of surgeons and the anaesthetist, who was bloody hilarious may I add, all worried thinking what’s wrong with me! It was time for Freya to go with them to be put asleep. I chose not to go in because it would upset me more and I really wasn’t in the right state. I passed Freya to the surgeon, and got down off the bed (which was really high up so I had to slightly jump down, being only 5ft and a half) to which then the anaesthetist laughed and joked at my height! He was a great mood lifter. I didn’t say goodbye it was just ‘See you later baby’ because I know she was getting through this! I then gave her a big kiss and I was then wheeled back out in a wheelchair back to Freya’s Cot. Typical for that to happen to me. I could only laugh about the situation.
I was then moved out into a parent room whilst they freed the bed space up and I waited for Darren to come after dropping harry at nursery. I tried to just sleep and rest whilst she was there. I felt bloody awful. Having nurse’s come in and out updating us and checking up on myself the hours felt long but it flew by.
‘The surgeon’s here to talk to you.
It had only been 3 and a half hours since I left her, what has happened? Something gone wrong? We waited in the parent’s quiet room. The surgeon just walked in casually eating a biscuit ‘What happened to you earlier?’ He was more concerned about myself than Freya! He continued…’ye it went good, she’s doing well and just being hooked up to the machines in PICU…you’ll be able to go and see her in about an hour or so.’ How can he just be so casual about it all!
About three hours later we were able to see her. My anxiety started, my heart beating dreading what we are about to walk in and see. I was expecting to see her in a bad state, not a very nice sight. We entered PICU and straight ahead in bed 3 was Freya. Machines, monitors and other stuff around her. I had felt emotional walking up, seeing other little ones in there as the room was all open and not sectioned. We got up closer and I was just looking at everything that’s helping her. Her face all puffy looking like she had gone a round with Mayweather. Still feeling a bit fragile I sat down next to her bed and just looked, taking everything in. I didn’t cry. I don’t know why I didn’t. Was I weird for not crying? Is there something wrong with me that I haven’t balled my eyes out seeing her lay there sedated to the max? I had text my best friend to ask if I’m strange to be not crying seeing her like that. She reassured me which is something I needed.

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Freya had woken up the next day around lunch time. She was doing so well and the Sunday they were happy for her to move back up to E1. I felt so happy and excited that maybe she would be home by the end of the week.

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You need to come in Freya’s not well…’
That call you dread. One of the one nights I didn’t stay at the hospital something had happened. 7am, Half asleep and panicking what has happened. Thinking the worse. I ran outside and jumped over to my neighbours’ house to see if she could sit in whilst I drove over to the hospital. Luckily, she was up and able to do so.
That drive over to the hospital was one of the longest. I was thinking she had gone. Overthinking at its worst. I got to the hospital after 40 minutes getting through the morning traffic, ran through and into the lifts and into the ward where I was faced with the nurse who was looking after Freya at the time and the cardiologist. They had a look of sadness in their face looking at me. I just broke. I was on my own (waiting for Darren to come in). Those couple of seconds felt like minutes before they said, ‘she’s doing ok…let’s go talk in a private room…’
They then had explained that the nurse had turned around for a second to grab something, turned back around to find she had pulled her NG tube out which then caused her to go into a cardiac arrest. It was due to it being so close since having the surgery it had aggravated the area and caused the heart to go into shock and stop. They were resuscitating her for 10-12 minutes. This literally was where her life was saved. It was so lucky the nurse was there and quickly reacted to this episode. It could have been a whole other story and we wouldn’t have had Freya cuddling in our arms today. I thank the nurse who acted so quickly and saved our baby girl.
We were taken back down to see Freya back in PICU where she was again hooked up to machines helping her breathe and keeping her sedated. I couldn’t be strong and put on a brave face. Tears came strolling down my face and I couldn’t hold them in… my poor little princess looked awful, she looked worse than after the surgery. She still wasn’t out of the safe zone yet. Darren and I had then gone to get a drink whilst they did some observations on her, walking out holding tightly onto Darren’s’ hand I just cried again. I felt so helpless. I was scared to lose her. It didn’t take too long for her to bounce back. Even being sedated still the next day, her little helicopter legs still flung about and she was opening her eyes slightly. (Apparently Downs can take a lot of drugs to be sedated, basically she’s a super human!) They had said to us that there was a risk that this episode may cause her brain damage. Great, what else does she need thrown at her! She had stayed in PICU for a further 2/3 days being observed closely and luckily no sign of brain damage!

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The nurses in PICU were just amazing throughout. From talking to me about it all to helping keep Harry entertained when I had to go in taking him with me. That hospital is full of brilliant doctors and nurses who I couldn’t thank more. There was a student nurse especially who just immediately acknowledged Harry and started drawing and talking with him keeping him busy whilst I spent time with Freya. I always remember also that when Freya went back into PICU Harry just flirted with the nurse working with the baby in the next bed. Next thing I knew he was being given the apron, gloves and stethoscope… then more nurses/doctors coming over giving him a hat and mask. He definitely lit up the room with his cheeky self, even for the other parents in there making them laugh.
She was then moved up to high dependency on E1 where she had just thrived. By the Sunday we had walked in to a totally different baby. She was off oxygen! This girl is a fighter and someone was definitely keeping her with us! From then on it was just getting her feeds back up and getting her ready to come home.


With a couple of meetings with the Speech and therapists coming up with a feeding plan we were ready to come home! On goes her little tutu baby grow and cute hair band and we were ready to leave! I could have danced out of there! No more hospitals…for now.

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I still love you…

Playing with Harry it came to my mind how well he has done through all of this. I always get comments about how good he actually has been. I guess I’m guilty of getting too stressed with him and thinking he’s such a misbehaved boy, but in fact he has been brilliant throughout these months. He could have been so much more worse.
When I feel the pressure of the whole diagnosis on the odd days, I find myself shouting at Harry when he does something wrong and sometimes it could be the smallest thing he has done. I really don’t mean to. I hate that I’ve shouted at him because it isn’t his fault. He is just a 4 year old. I think Darren and myself have kind of expected him to grow up quicker than he should, and he shouldn’t he is 4 and just about to start school. I am so guilty of this. I’m sure there will be days ahead where I do get stressed with him when he’s pushing us to the limit and testing our patience, and again I will end up shouting and feeling guilty.
So, I thought writing a letter to him for him to read when he’s a little bit older would show him just how much I love him and I don’t love him any less. I think we can all get carried away when a new arrival is here and tend to forget we still have another little one to think about, who also needs their mummy. It’s the excitement. In this case, its excitement of a new arrival but the worry of her health at this moment in time. I’m not saying I forget about Harry and brush him off, I just tend to worry how Freya is, which doctors I need to call and speak to, to arrange appointments… is she too hot, is her breathing ok? Is she going to be sick after the last feed? Learning to balance it all is very difficult and I don’t think you can get it perfectly right. But which parent is perfect ay?

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A Letter to my best friend… I still love you.
Dear Harry,
I know you’re too young to fully understand what has been going on. Freya’s not been well and all the focus is mainly on her. This is my letter to you, my best friend in the world.
I’m sorry I shout at you when mummy is stressed and feeling the pressure, I don’t mean to. I’m sorry I cannot give you my full attention all the time like I used to. I still love you more than ever. I’m hoping when you’re old enough to read this you’ll understand why the pressure was so high when Freya was born.
You see, she is different to other babies and yourself. But not everyone is the same we are all unique in our own way. Some learn slower and some learn quick. Some need more help than others. Yourself, was lucky enough to be born healthy, however Freya was born with Down’s Syndrome and of course with a heart problem which you know. I will explain Down’s Syndrome to you a bit more when you are able to read this letter, as you see I don’t really know what Down’s Syndrome fully includes. Mummy is still learning.
I’m so proud of the way you have handled everything since Freya was born. Watching you with her is simply amazing and I can see the bond between you two is unbreakable.
Thank you for looking at Freya with love and like she is just like every other baby. You taught me that.
Continue to be how you are, the caring, most funniest little boy mummy knows. Every day you have made me laugh and some days you make me want to go insane. Most of all I am thankful you have taken everything so well and your behaviour could have been worse. I know it hasn’t been easy to see your little sister in and out of hospital, especially when she was born and having lots of wires coming out of her.
I guess I just want you to know how proud of you I am and that I love you so much, my special little guy! Best friends forever!

Lots of love
Mummy

Mending a broken heart…

Just thought I would post a blog pre-op, about Freya and our focus on her having her heart op. So, as it stands she has a ASD (Atrial Septal Defect) and a VSD (Ventricular Septal Defect) holes in her heart at a moderate to large size. Again, how these were missed in my antenatal scans I don’t understand. We had a set back with her being admitted again to hospital with a respiratory chest infection and her first appointment for surgery being cancelled due to this.

I had psyched myself up, planned every hour/day in my head with where Harry would be whilst we were with Freya in hospital having her observations done pre-op to make sure she was ready to go. Mum had planned to come down the day she was having it to help with Harry and Darren’s’ mum had taken that day off and was having Harry the night before so we weren’t rushing about getting him to hers then to be at the hospital ready to see Freya go down. I replayed it over and over again in my head visualising seeing Freya be put to sleep for the op and saying bye to her. That hurts the most because I have all these thoughts going through my mind, negative ones again. What if she doesn’t make it through it? How can they operate on someone so tiny and her heart being so small? I know she needs this op because she keeps catching these chest infections which makes more pressure on her breathing and being told she will then thrive afterwards helps with the negativity in my mind. I know she won’t remember it when she is older but it is us that is going through seeing her go through it all. It truly makes me well up at the thought of that moment we have to say bye to see her go down to theatre and my anxiety will be rocket high that day.

She had a review Thursday just gone in regard to her heart. There is still no change in the holes and pressure. We got a new date for her surgery, 21st July so we got about 11 days to go! Time to psyche myself up again and hope she doesn’t go downhill and have to be cancelled.

She’s also got her chest infection again. Saturday her breathing was heavy and her cough was still not any better from since she was discharged over a week ago.  So off to hospital I took her and they monitored her temperature, as this was high, and went down to have a chest x-ray where I got to fashion the lovely shield, where I was then asked if I was pregnant in which my answer was ‘no I’m just fat’ plus it’s only been 3 months I’m not that eager to jump in there again! So yes she’s back on antibiotics, so we are hoping she gets this out the way and when it’s time for her surgery she will be at her peak of health!

‘Every day you’re here,I’m Healing…’

‘Every day you’re here I’m healing…’

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When you get a diagnosis of your child that has a life affecting impact it feels like your future has been screwed up and thrown away. That’s how I felt in the beginning. I remember I would sit in my hospital bed thinking over and over again of how I would get through this ordeal and that it was just so negative. Freya was in neonatal downstairs and I was in my bed thinking about myself. In the weeks to come there would be many factors of bringing me out the other side thinking the future is not so scary and it is in fact not ruined or thrown away.
I got the family giving their support and their views and for myself I really wanted to feel it from everybody. Being in the hospital alone hugely hormonal and emotional, a million thoughts in my head, I had thought about what would my dad of said to me? My brothers and I lost our dad about 2 and a half years ago now and it was just such a shock and distraught time. I could only describe my feelings then with grieving the loss of him to what I was feeling with Freya. You look for answers from family but there was that one thing missing. Till this day I still wonder what he would have said to me. I often find myself asking him to look out for Freya when I can’t be with her in hospital and I know he is looking over her. I guess it’s a comfort thing to think that there’s someone there to look out for her.
I hadn’t spoken to any other mums really in the neonatal I was more in a bubble of my own self- doubt and worry. It would be 11 weeks later that a lovely mummy had got in contact with the hospital for me to contact her and catch up. It would be that she also had a son who was born the same day as Freya who also has Down’s Syndrome! What are the odds of that?! I thought that was just amazing and that has even helped myself as I now have this lovely mum to talk to about our children and we are exactly in the same boat! We were planning on meeting up for a chat about our experiences but this was brought forward as her baby boy was admitted to hospital with respiratory problems and then Freya deciding to have similar symptoms. So, we actually met in hospital and were able to speak to one another which was lovely to do (despite the circumstances). She had added me to a group that meets once a month with other parents with Down’s Syndrome babies/children. I can already feel the support within that group is strong and will be all friends for life with our babies growing up together.

I would say in the beginning it was hard. There were a few things that has helped me pull through. One would be music. It’s funny because there is always a song that will remind you of something that has happened or someone. In my case, there was this one song by Clean Bandit and Zara Larsson – symphony. The lyrics were so apt for my situation and how I was feeling. There is one verse that just reflects it all.

“I’m sorry if it’s all too much
Every day you’re here, I’m healing
And I was runnin’ out of luck
I never thought I’d find this feeling
‘Cause I’ve been hearing symphonies
Before all I heard was silence
A rhapsody for you and me
(A rhapsody for you and me)
And every melody is timeless”
I just used to think she’s going through all this in hospital with the oxygen, heavy breathing due to the holes in the heart and the infection that she had, it just was so much for a little baby and I thought how unfair it is. But as she was starting to get stronger and with every cuddle and interaction with her I was starting to feel better and more positive. Like the song her life will be like her own sympathy and a beautiful one at that, we just must overcome hurdles as we go like her heart surgery that will be coming up very soon. Every time I would drive up to the hospital it would be on the radio, it just become so apparent it was her song. I would always have tears when listening to it. Now I don’t as I don’t see Freya as such a scary challenge as I thought. Harry now says it’s her song also which is lovely but he also always asks me, when it comes on, ‘does it make you cry still mummy?’ I hate that he has seen me not being a strong mummy for him and Freya but I think it’s good that he knows its ok to show your emotions.

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Harry was also a great distraction, yet challenging, to keep him happy and occupied whilst visiting Freya in hospital. It was him that got me through a lot. We were always doing something which kept my mind of run away thoughts at bay. I would take him out to Paultons Park for the odd day out so he would have mummy time to himself which he needed. It was having an affect on him. He was being quite demanding for my attention when I needed to give Freya my time too. Seeing Harry look at Freya like she is just like any other baby helped me. He looks at her with nothing but love and this has helped me heal because seeing him just look at her no differently made me look at her the same, I no longer seen Down’s Syndrome looking at her, I see my baby girl. You learn a lot from children and one is judgement, there isn’t any. They already have this special bond and I know in years to come she will have him to look out for her it just melts my heart watching him with her and the way she looks at him.

The people I have around me/us have been great. With my mum coming down when she had time off to help with Harry to take off pressure off of us.
For Darren he had explained his way of getting through it was to get on and do DIY house things, like the garden. He had replaced the decking just outside the backdoors. It was something for him to focus on. It was therapeutic for him. From day one seeing Darren look at Freya also, he had nothing but love in his eyes, the same looks he gave Harry when he was born. I suppose you hear/read stories in magazines and what not where the partner has done a runner because they can’t cope or accept that child with extra needs. I guess I was scared Darren may do the same (although I know he wouldn’t) but you still get that feeling of ‘what if?’

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We have taken each day as it comes and that is all you can do when given this path in life. We don’t dwell so much on her future or ours because that’s when you just worry about everything and start feeling stressed. I must admit it is still a scary thought as to what will happen but to think of it now we try not to go into it or talk so much about it.
TALKING TALKING TALKING!!!
Our family have been brilliant. They’ve listened to our worries when we talk about Freya. They give their words of support and love to us and that’s just what we need. I must give credit to my close friends and family because it’s when I decide to have a couple of glasses of prosecco (rare that I do this and won’t if Freya is at home and Darren would be the sober one to look after Harry, before the perfect parent brigade pipe up) I will talk and cry about Freya and the whole situation and they just sit and listen to me. I think you need a night where you can just stop being ‘mum’ or ‘dad’ just to recoup and let go and not worry. So, I would say to anyone reading, don’t feel guilty for needing some space to just collect your thoughts/feelings and sanity. Don’t be scared to talk about your feelings everyone is different in how they deal with things and this is what I am learning along the way, especially now being in contact with another mummy and daddy with similar feelings I don’t feel alone.

We didn’t sign up for this!!

 

We had no idea what we were in for when I had Freya. All tests came back ‘low risk’ apart from having one hormone being low PAPP A, which is an indicator of Down’s Syndrome, which we weren’t aware of. This wasn’t brought up as a concern in any midwife/hospital appointments. I was only offered an extra (growth) scan at 34 weeks because it can cause low birth weight too. I had extra fluid around her too so I had extra scans from about 31 weeks and nothing was said or picked up that she may have this condition. She also has a heart condition which is common in baby’s’ with Down’s Syndrome. Almost 40% of babies born with Down’s Syndrome has a heart defect. We still don’t understand how this was also missed.

I was 37 weeks pregnant when I had her. I went in the day before due to waters breaking early morning and then being monitored that evening for 4-5 hours as her heart rate kept dipping! I was sent home around 9pm that night, with only just feeling slight contractions. It come to about 2am and they were coming on stronger and into hospital we went. By the time, we got in and examined then taken to labour ward I felt like I needed to push her out but before they wanted to re-examine me I felt I needed to wee! So off to the toilet I went but she was coming she wasn’t waiting any longer!

Fast forward an hour she was out and in my arms, the doctor did the usual checks they do when a baby is born and she was handed back to Darren to put a nappy on. He was the one who noticed her facial features, mainly her eyes and flattish face (although she was quite puffy). I knew something wasn’t right when she was born, I had this horrible feeling and I couldn’t work it out. I was waiting for someone else to say it because quite frankly you don’t want something to be wrong, you want this experience to be the best time of your life (despite the pain of labour and birth). I had also lost a lot of blood so it was worrying about them getting that under control as well as worrying what’s going on with her.

Darren had mentioned what he had noticed to the midwife who then got the doctor who then agreed she also thinks Freya ’has the typical physical features of a Down’s Syndrome baby’. She had a look of ‘sorry’ in her face. I felt like I slipped into a place of limbo from then on.

WHAT THE ACTUAL HECK IS GOING ON??

We got around to the antenatal ward and was given our own room. This Is where that morning got a little bit worse! The nurse was testing Freya’s blood sugar levels and did her oxygen levels, looking at us both she said, ‘would you like to just come around the corner where we can give her oxygen as its very low’ WHAT!? We walked round to the resuscitation cot where a swarm of doctors come hurdling down the ward like a pack of charging rhinos giving Freya oxygen. My heart sank, I felt sick and I just burst with tears with Darren holding me tight whilst they did their thing. She was rushed to neonatal and that was it! If her oxygen levels were low then, had she gone the last 4/5 hours without it? Is this going to affect her brain?

I remember the team of doctors/paediatricians/nurses and midwifes being in our room asking what did we know about this. I think with the shock look on our faces, clearly, we didn’t have a frigging clue!! They were trying to ask us questions about the start of my pregnancy to the birth. They were trying to figure out how we slipped the net of the screening process.

An hour or so and we could see our baby girl. Seeing her with all the wires and tubes going into her wasn’t pleasant to see. I had never in my life imagined I’d have a baby that would need this special care! I felt sick!

They had done the scan on the heart and there it was confirmed she had a hole in the heart! There was the one that naturally every baby is born with and eventually closes, then there was the abnormal hole in the heart which was a moderate to large size!   I remember the doctor telling me about the holes in her heart, I wouldn’t process it, one ear out the other it went. He had drawn a diagram for me and it was like being in a science lesson again. I blamed the blonde hair and baby brain for my comments and questions. We had also learnt there is TWO holes in her heart so that was being looked at closely in where that is going in terms of closing on their own or not. She has high pressure in her lungs and heart which is also cause for concern. This currently has not changed sadly so she will need an operation within two months!

Trying to put on a brave face

The thing that broke me was when Harry came into see me with my mum, Darren’s mum and sister and I saw the look on his face. He looked so emotional. I had got Darren to show him a picture of Freya in the incubator with the wires attached so he wouldn’t get so upset when we took him to meet her. Anyway, he had walked into my room and I could see his little face all emotional, trying to put on a brave face I told him to come give me a hug and that was when I just burst into tears. He hugged me tightly. I think he was upset with the fact I was in hospital and he didn’t quite understand the whole situation. Darren had told him Freya wasn’t too well and that she just needed a little more help than other babies. When we seen her he was perfectly behaved and looked at her with love. He asked questions about her wires and what they were for, surprisingly he didn’t get too upset but it couldn’t have been easy for him to see. I felt like the meeting of them should have been a happier one than it was.

I had only stayed in hospital for three days after having her. Coming out of my room to get some water I would see new mums holding and feeding their babies. I should have been doing this! Not sitting in my room wondering what has just happened! I would just sit there and start crying thinking my life has ended and this poor baby girl will need so much help and support and this scared me. A lot. I couldn’t see the positives. I kept wondering how will I cope?

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Going out with Harry and seeing new mums was so hard to see. I would feel angry thinking ‘ this should be me showing off our baby girl’. I would see announcements on Facebook and feeling upset because I wanted to show her off but I felt scared to, you always get one person who will be judgemental/gossip about you. Now I couldn’t care less, hence a reason why I am writing this. I am proud to have Freya she is going to teach us so much and be so loved by people who meets her, its already happened.

To begin with I was in such a state of shock of how we ended up in this position it felt unreal. I would sit and look at her and not feel any connection, the love was there but not how I felt with Harry. I don’t know why, I think there was a fear of how will I love her the same as Harry. I’ve never really dealt with people with special needs so this was so scary to think of the future of how severe and how independent she may be. But now, 9 Weeks on I look at her and I don’t see Down’s Syndrome like I did in the first couple of weeks, I see our beautiful baby girl who is adorable and I see her future with positive outcomes. The best text I received was from one of my brothers saying ‘she will be awesome’ and yes she is going to be! The nurses/sisters and doctors would always ask me how I was getting on with the whole situation and I would always be truthful and say ‘yes, it is bloody hard but I’m taking it a day at a time’. And that’s all we could do. Darren seemed to be more positive in the way he looked at her and the whole situation which helped massively with myself as I think I probably would have panicked and doubted everything more. He turned my negative thinking into positive. There were parts where I felt like I was grieving, grieving for the child I didn’t have, it was weird. This baby girl was beautiful but I was still sad because it wasn’t what I was expecting. I didn’t feel a connection with her for a couple of days until I got to hold her again. Every time I hold her now she just looks into my eyes with her dark ocean blue eyes with love. She literally makes my heart melt. A bit cliché I know but it’s true.

When we had told close family and friend, I was scared. I was so scared of what they’d think, what they would say and actually, I got the loveliest responses ever and words of support, which was great and just what we, I, needed! I spoke to friends who also had children who needs extra support and their responses helped me immensely because they have been through a similar experience with not knowing their little ones having conditions that are challenging and life limiting, and I am grateful that they would share how they also felt during their hardships.  I think also that our whole situation with Freya could be a whole lot worse.

I remember feeling so alone in this even though I had all these friends and family around me asking me how I am, how Freya has been and how Darren and Harry have been, showing us that they are only a phone call away. I still have those moments of feeling alone but not as much. We had found people were popping up wanting to see Freya although they hadn’t been in touch for ages, nor asking how we were when she did arrive. You feel like you don’t know if they’re just  being nosey or not. I have found I don’t have time for people who haven’t made effort either. But things do work both ways, I know, we do have separate lives but it was like I’d like to know they’re there thinking of us. I don’t know If that sounds selfish or not but it is how we have felt. At the end of the day I know people don’t like to bother you in hard times most of the time but it’s nice to get that little message of support.

Six weeks of her being in neonatal felt like a lifetime. During them weeks my emotions were everywhere. How am I going to cope with a baby who will need extra care? I had loads of times where I would be driving up to see her on my own, thinking ‘I can’t do this!’ but then I would see her and all that negative thinking changed to positive. I just needed her home. Driving up to the hospital was usually the time I would have a good cry about it all. I tried to hold back my tears when I was in front of people to not look like I was ‘weak’. A lot of the time I didn’t feel like a new mum again. It was like I had this baby then I went home and visited her every day once or twice then back home again to carry on normally with Harry. I was very much in limbo for a long time.

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Having to juggle between going to the hospital to spend time with her with Harry in tow and home life, was difficult. I didn’t want Harry to get bored and start playing up but I needed to be with Freya. Harry’s behaviour had changed since having Freya. It was obviously affecting him probably making him try to gain attention from us by whinging and just not doing as he was told. I tried to involve him as much as I could within reason. He was, most the time, well behaved. He does make us incredibly proud especially watching him with Freya. I would bring up his Ipad, sticker books and some snacks for him to try keep him occupied. He always wanted cuddles, which I always allowed him to do with her then play with the Lego they had in the cupboard (lifesaver). It was hard though when he decided to whinge to get attention as I just felt so drained from going up the hospital. It seemed the day just went but it was mentally draining too. There was still a lot to take in. I remember he was whinging so much I just snapped shouting at him and then cried. It had just got too much. I was lucky as my mum was here to occupy him whilst I just had a little lay down and calmed down. I woke up in a better mood and said sorry to Harry for shouting at him. I felt awful.

That frustration and stress is still there and he still likes to test me and Darren, but as time goes on I am hoping it will get better. We Just try to ignore it or preoccupy him with a different activity. But sometimes he does need to be told firmly to make him listen and realise. We will get there…

The six weeks was full of tube feeds, depending on oxygen, cuddles, puke, poo, trying to feed from the bottle and just generally getting her to a point where she could come home. There was of course ups and downs in the weeks. One week she became quite ill with sickness and diarrhoea which they thought was viral gastroenteritis and this was horrible to see as she was just so unsettled and continuously crying, leaving her was horrible.

It is what it is…

As the weeks went on my acceptance of our new baby girls condition was getting easier to digest and easier to tell people. We had only chosen to tell people we were close with. We didn’t want to label her being Down’s Syndrome nor did we want the whole ‘I’m sorry’ said to us repeatedly along with loads of questions. We didn’t want the pity and we didn’t feel ready to tell everyone until we had accepted the diagnosis. It had been hard enough with taking in everything along with her heart condition too. I suppose to some people we had been quite reserved with telling everyone of our new bundle of joy. It was supposed to be a day to remember apart from it was all for the wrong reasons, not because she had Down’s Syndrome but because she was needing help with her health. After a week of her being born we did announce she was here but didn’t say she was Down’s Syndrome, only she needed some extra help in neonatal. When you become pregnant you have this vision in your head that she will be this healthy baby with no complications, how she would look and progress in growing up. We had made plans for our future where we would have our children let them grow up, then when we were older and they have their own lives and go off and do their own thing, we could then enjoy life being mortgage free and doing what we wanted to do. It felt like our whole world had been swallowed up and regurgitated. Sadly, life doesn’t always go your way and you are thrown these little challenges and we had to take this on. Nothing can prepare you for something like this and I think if we knew she had Down’s Syndrome a few weeks before having her then we could have at least had time to prepare more. We have had to take it day by day and research about Down’s Syndrome (Darren did this more than me) because we haven’t the slightest clue what to expect from her, especially her heart condition. Now we are re-routing our life plan with her as our main priority (not that our children aren’t our main priority) because if we went who would be there for her? We don’t know how independent she will be. We do have fantastic support from friends, family and son who we know will look out for her but you don’t want to burden people asking for help. We don’t want to rely on Harry to look out for her when we aren’t here as he needs his life too. It isn’t fair.

After 5 weeks in neonatal she was moved to the children’s ward in Winchester and there she was for about a week and a bit. We had to learn how to do tube feeds so we could get her home and start a family life! It was so daunting because I had the nurse looking at me watching me do it making sure I was doing It right. My hands were so shaky on the first few times. They were so helpful though and encouraging. After being signed off on the competence of NG Feeds she could come home!!! I was so happy it felt like this should have happened when I had her. I was, however, pooping myself because she is vulnerable to getting unwell and she had only come off oxygen a week or so before but was doing well on not having it! Thoughts of panic of how she would look if her oxygen was to drop or if something went on with her heart happened.

In the two weeks of being home it was filled with hospital appointments, health visitor visiting, phone calls between the nutritionist and doctors. I just wanted to be left alone and get on with family life but this won’t be the case because she does need that little bit of extra care. The problem is she isn’t feeding from the bottle, she must be fed through the NG tube. She needs to gain weight but she hadn’t. She was keeping at the same weight with a little loss. It is so frustrating, she was having her tube feeds but she was also being sick with them too.

‘We want to admit Freya…’

Back into hospital she goes! She hadn’t been gaining weight, she was being sick and at the weekend she had loose stools. The doctors were a bit worried with her weight and feeding so they admitted her to get to the bottom of what’s going on with her. But now she has a horrible chesty cough and sounds awful. She had another heart appointment at the hospital and there has been no change since the last time they looked at her, the holes were still the same size and there is still high pressure in her lungs and the heart. She will need an operation to close these. *GULP*

One week later she is still in there, now she is having trouble with her breathing with her heart and lungs having to work that little bit harder. She keeps going through up and down moments whilst being in there again. When I look at my phone when it rings and it’s a ‘No Caller ID’ displaying I dread to pick up the phone in case something has happened, you cannot help but have a negative feeling sometimes. It’s horrible to feel that way because she is still quite small and having to work that bit harder to breathe.

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