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?

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.

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.