Health is a constant worry!

Well today didn’t start how I imagined, at 6am I was in the local A&E with Polly as we was up all night for the forth time in a row with her coughing throughout the night. She has had a cold since the start of the Winter season at the end of September, it’s been on and off with no major concern but after completing 3 course’s of antibiotics with no sign of it going I started to worry. The last course ended at the weekend and her cough started again just a couple of days after, it has got progressively worse each night with her waking nearly hourly! It’s been pretty gruelling, taking me back to the days when Polly was waking up every 2 hours in the night and every day I survived on a couple of hours sleep - a sad time!

So this morning I had enough and decided she needed to be reviewed and have a chest x ray, I was just imagining the worse and didn’t want to leave it in case it was developing into something more serious. Thankfully her chest x ray was all clear - GOOD NEWS! It was actually the first time in Polly’s short life that she’s had a clear x ray and she has had more than I can count on both hands. Her bloods were taken, which she was an absolute champ for and I distracted her by playing her favourite ‘pup academy’ on Netflix, whilst the doctor and nurse held her foot to squeeze her blood out.

Her bloods came back fine, her infection marker was 6 - the doctor said anything under 10 they don’t tend to treat as it’s so minor. We was given an inhaler to see if that helps her when she gets a consistent bad cough.

Lots of my followers said that their children have been the same through the winter and suffered with chest infections, wheezing, asthma for years. The dread of waking up in the night to your child coughing, especially when you have experienced time in and out of hospital is really difficult. The fear that presents itself in that short window of hearing them coughing, the questions that run through your head and mentally going through what to pack for a hospital trip and where everything is. Thinking how long will we be there for and hoping they won’t keep you in.

In Polly’s first 6 months of her life she spent most of it in hospital, it’s an attachment of fear for me that is very hard to let go of. When I had Polly she spent over 3 and a half weeks in NICU, we was home for two weeks and I had a check up appointment at our local hospital. I took her on my own and it still haunts me what played out that day. After checking her oxygen levels the consultant wasn’t happy, she admitted us which I was so angry about and so unprepared for. Just being back in that hospital environment, living there more than we had been living in our new family home. Such a strange time with strange memories, we both miss that house so much that we spent literally less than a year in. The home we brought Polly back to for the first time, when we was coming to grips with our new life of parenthood. Winging everyday and working it all out step by step. Not your typical start to parenthood, but just look at how far we have come.

The bigger Polly gets the stronger she is becoming, she has been able to keep a cold at bay for two months. Last year that hospitalised her, and I never believed it when parents who had been in our shoes told me every year gets easier and the hospital trips become less frequent. I am so grateful for where we are at now, all that we have achieved and overcome as a family. But the dread of going back to the H (hospital - urgh I hate saying the word) it lingers over me from time to time. When I think about seeing her lay in a bed for 24 hours a day, and I am sat in a windowless room thats stuffy and I haven’t slept for two nights and am starting to loose my patience and get snappy. The times you need two doctors and a nurse to pin Polly down to take her bloods, and because her blood clots they never get a significant amount to take so have to re do it. That causes trauma to the parent, if the child is young enough not to remember, that’s all a parent can remember. But even as I type this I know parents who have been in much much worse situations than us, I think of them and I think we are lucky. Not in a pitiful or patronising way, but you got to look at the positives in everything, the what if’s and how different your life could be in a worse off position.

Today we was lucky to be told there is nothing on or in Polly’s lungs, that we could go home and that she is well enough to just fight this cold off. To lift our spirits and well everyone’s because how can Polly not make you smile?! Some of her Christmas photo’s I styled and took this year, I look at these and still cannot believe how lucky I am that she is mine.

Dear Mumma, A Letter To My Old Self

I know you’re grieving right now. You feel a pain in your chest and an emptiness in your stomach, but you can’t quite explain it. That’s grief. ‘Yes!’, you think, ‘that’s how I feel’. But you can’t quite explain that to people, they just won’t get it. You’ll feel guilt that you are grieving, because you still have your baby. It doesn’t make sense and it feels strange. You have no idea what it feels like to loose a child. But you’ve lost loved ones, people close to you and it’s that same type of heart wrenching, empty feeling of ‘gone’. As if everything you knew was now different and you could do absolutely nothing to change it. Well yeah you could, there’s always one option, but you don’t believe in that way. Deep down you know there’s a reason your baby has Down Syndrome. There you said it. Words that will one day become a part of your frequent vocabulary, but at the moment it’s a little too raw to say. You’re adjusting, you’re digesting and it’s going to take time.

The day you both decided to try for a baby, when you both said it with excitement and you started imagining what your future would be like as a family of 3. You had no idea of what was to come, that things were going to be different to what you had imagined. The man you was so in love with, the man you spent every waking minute with wanted to have a baby with you. This meant forever, this was scary but it made your heart skip a beat. It made you love him even more. You never knew that you would have to call him when he was away, to say “it’s bad news” that you could barely get your words out. You just wailed down the phone saying the baby has Down syndrome. That moment you needed him so bad, but actually looking back you both needed your own space and time to process this in your different ways. It would only be a few days until you could see each other again. He never knew that you felt like a failure, that you hadn’t given him the perfect family he so longed for. That he deserved, he talked about it on your first date and you knew then he was a good guy. I know you’re scared of him leaving you because you want this baby and he might not. But he will, it will take him time. A lot longer than it will take you to accept but one day he will be so overwhelmed with love that your baby will be all you ever speak about. He will speak about her with such pride. Yes it’s a girl! But you knew that the moment you found out you was pregnant. You hoped and wished so badly for a girl, you felt guilty in case it was a boy. Not that having a boy is bad but you just wanted this baby to be a girl.

I know you wanted to keep it a secret and not find out the sex of the baby, but it’s helped you bond with her better while she’s growing. It’s helped you try and understand who they are. You won’t know until she is here just how strong and resilient she is. She will surprise you daily with her strength and character. She will do things you never even thought she could achieve, you will appreciate the little things. Like when she holds her beaker for the first time and drinks all by herself. When she can feed herself finger food, that she can tell you when she’s hungry by pulling a certain face. When she stands up on her own for the first time holding on and that’s all before her 1st birthday. She’s smart, real smart and determined. It’s just Down Syndrome, it’s not a big deal.

She hasn’t got a disease, yes her heart will need fixing. I know that’s what will hurt you the most once it sinks in about her DS. It will make your heart hurt so much and give you terrible anxiety during your pregnancy knowing what’s to come. But actually you will enjoy your pregnancy, you’ll make the best of it because that’s what you do with everything. People will wonder how you’re getting on being busy every day knowing what you know. That is because Mumma, you are strong. There are many times in your life when you’ve felt less, you’ve felt unworthy and that people have always taken advantage of you. That’s because they had, you was there to help them and they took advantage of it. But this will mould you. It will shape you into a new you. It may bring you tears you will think may never end, but it doesn’t mean you’re weak. It will make you stronger, it will toughen your skin. There will be things that you won’t put up with and you’ll speak up. I know you’ve cried and asked God, “why me?! why did I pull the short straw?”, but there will be times you will drop your head and feel so grateful you could cry. More grateful than you’ve ever felt in your life, you will feel lucky. I know that’s hard to understand right now, how could you ever feel lucky when you feel the way you do now. But you will, you’ll feel it so many times. You’re about to embark on a whole new journey. Your life is going to do a 180, you know you’ve always said you don’t need any more friends well guess what you do! Not because your friends aren’t good enough, in fact your friends will show their true worth. They will check in on you, they’ll bring you dinner, they’ll come see you in hospital and know you need some air. They will try their very best to understand and that’s enough. They will want to understand everything that’s going on with the baby and they will be so proud of you and you will love them just that bit more. You’ll get angry with them sometimes, you’ll get angry with everyone in fact. Surprisingly everyone except Dom, because he gets it. Nobody else will and you will be angry at that. Hopefully they forgive you for it, you’ll go through a lot. So many emotions in fact that it will continue to overwhelm you. You will find your ways of dealing with it.

I know right now is scary, it’s frightening and the unknown terrifies you. The truth is Mumma, it terrifies us all. If life were easy, where’s the excitement in that?! People will send you articles because it’s their way of helping, but you just can’t bring yourself to look at them. You haven’t accepted it fully. But this is the process and you need to trust in it, your path has been paved and it will be more beautiful than you know. It’s a rocky road, it isn’t going to be easy but you will get through it. A year down the line you will wonder how you ever did it, you will amaze yourself all the time because you have never really believed in yourself, but now you will. Your trauma and experience will help others, you won’t understand how but apparently just by being you will help other parents who will walk in your shoes.

Although you are sad, and your heart aches you just know deep down everything will be alright. You’ll pray more than you ever have in your life, you will ask God and your angels to help give you strength every day, and to help guide you onto the right path. It will bring you so much peace to pray, to know you are asking a higher power for help. We are all given help and strength when we need it most, all we have to do is ask.

Then the baby will be born, it will be a long labour and you’ll be really exhausted. She will take her sweet time, but you know what it won’t be as bad as you’re imagining. She will arrive safely, your first words to her will be “hello poppet, Mummy’s been waiting for you” and you will be on cloud 9. The whole room will cry when she arrives, you don’t (surprisingly), you’re just so grateful she is here safely and that it’s over with. She will spend some time in NICU, much longer than you expected and you will have a really hard time with that. You’ll name her Polly Blossom, because every super baby needs a superstar name. People will tell you they can see her name in lights one day, and do you know what I think they may be right! See, it won’t be so bad after all Mumma, just hang on in there and trust in the process. Look for your inner strength and keep on educating others, help change people’s perceptions on Down Syndrome and that there is nothing ‘down’ about it. For Polly Blossom just has an extra chromosome, with a little extra sparkle.

Being Home

It was a beautiful Sunday, the sun was shining and we finally put Polly in her car seat after 7 weeks of staying in hospital, we was going home. The feeling of walking out of Great Ormond Street Hospital was surreal. We raced out of there expecting all the nurses to gather together waving us goodbye, maybe a little going home party. But just a yep you can go home now and the ward is magically empty as you’re leaving. I remember Polly’s little face looking up at me like “this is new, where are we going Mum?”. It had been 10 days since Polly’s open heart surgery, and although it was weeks on end in hospital it did feel a little too soon to go home.

We loaded the car up with 2 weeks worth of our belongings - that’s how long we had just spent in GOSH coming from our local. We chucked everything in the car just wanting to get out of there as quick as we could and onto my Nan’s for a roast dinner! Nanny’s roast is always a winner! “Okay then sat nav, take us home where we belong!”, but of course it took us down a few dead ends and we spent a good 10 minutes turning the car around in a tiny little London street. We was on our way home and I just remember feeling like I was dreaming, driving through London with the sun shining, music playing and my little girl next to me on the backseat. I felt as though I was holding my breath the whole journey home not wanting to get too excited in case it was just a dream!

HONEY WE’RE HOME

Being at home was like having a newborn all over again. We needed to establish a routine and feed Polly every 3 hours via the tube which took up about 45mins of time to prep and feed. So really it was more like feeding every 2 hours and changing her nappy before and after feeds too, Polly kept going to the toilet so I knew her milk didn’t agree with her. It was relentless and although the feeding was a huge pain, I kept telling myself I would rather this at home than be in hospital. Being 3 months old I did think we would have it a bit easier by then but I just kept reminding myself this is her recovery phase. I constantly told myself that it was only temporary and it won’t last forever. For the first few nights Polly was a dream, she slept loads during the day - more than she ever did in hospital and she slept most of the night also. We however didn’t sleep, Polly snored SO loudly and she never made that noise in hospital, it was loud enough that it kept her Dad up all night which says a lot about him who usually sleeps through! Sleep deprivation hit again, I was up all night feeding her having an hours sleep here and there. If you’ve experienced sleep deprivation, add that in with utter exhaustion mentally and physically after 3 months spent in hospital and you’ve got yourself a recipe for unhappiness. I think when anyone has a new baby it takes a while to adjust and to try relax at night yourself, so that you can sleep!

in the garden for the first time, taking a minute just me & Polly listening to the birds chirping with the sun shining down on us. We just stared at each other for about 10 minutes before she went off to sleep and I’ll hold onto that memory forever.

Polly was an angel for 3 days at home before she started to become really unsettled, she started to scream every time I laid her down on her back - which was mostly when I was changing her nappy. The first time was scary, she started to cry and I was soothing her while changing her nappy and the cry turned into a scream I’ve never heard before. It was as though she couldn’t catch her breath and was looking at me with fear in her eyes, I scooped her up as quickly and gently as I could. She had 6-8 weeks of recovery to go through from her open heart surgery, so you couldn’t pick her up under the arms yet as they break the chest bone which needed to heal. We was being so gentle with her and so scared to move her in case she was in pain, I mean she just had a serious operation and after just 10 days post op we was home already. To me it did seem too soon, I felt like she wasn’t ready and I wish I had spoke up about that before we was discharged.

Polly would calm down from crying after a while of me soothing her. It got to Friday night, our sixth night at home and I spent the whole night soothing Polly. She cried the entire night and it got to 6am I said to Dom we need to go hospital something isn’t right. I was utterly exhausted myself as I hadn’t slept a wink, and mentally tired with my brain running wild all night, questioning should I take her hospital but I didn’t want to end up back there. I was going to call an ambulance but by this point Polly had gone off to sleep, so she seemed as though she was fine. Dom and I made the decision to wait a couple of hours and see if she was better once she woke up.

The night before it all went downhill and Polly was up all night long crying

A couple of hours later Polly woke up and pulled her NG feeding tube out - which meant we had to go A&E for it to be put back in. Dom wasn’t happy about going, it is stressful when the tube comes out, as at the time we couldn’t put it back in ourselves. It had to be done and he said he will take her to the hospital. Later on, I got a call from him saying Polly had been put on optiflow (a form of oxygen) as the doctor checked her sats and her oxygen levels were 75%!! Polly should be around 97-100% so she was much lower than she should have been and immediately needed oxygen! Luckily she was able to maintain her sats once put on the optiflow, which meant nothing more drastic had to be done at that stage. They was keeping her in overnight and awaiting a bed on the ward, so monitoring her in A&E in the meantime. Luckily she was seen by a really lovely doctor who was very attentive with Polly and keeping a close eye on her. Unfortunately we’ve not always had attentive doctors in our local hospital, and have now learnt to push them where it’s needed than just relying on them to do their job. I know who would have thought you would need to be telling them! Thankfully this time Polly was on the children’s ward, she was being closely monitored by the nurses there, which she wasn’t on our last trip. This instilled some faith in us to leave her there overnight without either of us staying. I thought I could never ever leave her there, but she wasn’t alone as she was top priority with another baby next door to her who was also without their parents. Our last few trips to our local hospital we stayed every night, two weeks at a time, they was honestly the darkest times of my life because I was mostly staying for 5 days straight and it was just hell. After staying in hospital for some time I have a huge fear of going back. It is petrifying and as soon as I felt comfortable that Polly was being looked after, I felt my anxiety go knowing I could go home to sleep. Sleep and rest is so so important in any traumatic time, I feel it’s the only way I can pull through and be there for Polly.

back in our local hospital where Polly was really poorly - you can see how infected her wound is.

She spent two days in our local hospital before being transferred to Great Ormond Street, so once again we was going back. It turned out her wound was infected & after emailing photos of it to Polly’s surgeon, the cardiac team said they wanted her to be at GOSH. So we packed our bags and back we went, we literally had been living out of suitcases for months at this point, I felt like I had become a pro packer (although Dom would argue differently as I always overpack). Back to Bear Ward which is the cardiac and respiratory ward and Polly was being assessed. It was clear there was an infection, I had been taking daily photos of her wound so that the doctors could see and we could compare what looked better or worse. As her skin had been mottled the doctors were concerned that she had gone into heart failure again, as there was still a leaky valve. Polly then got put into intensive care to be monitored as they wasn’t actually sure what was wrong with her, but her sats kept dipping. It was all very uncertain what was actually wrong & it felt like we had never left once we was there. I travelled up to GOSH with Polly (Dom wasn’t allowed in the ambulance as our local hospital had booked the wrong one - SHOCK) so I told him to come up the next day, as it had been such a long day or waiting in our local. My mum came up to stay with me that first night, you get accommodation 5 minutes away when your child goes into ICU or HDU (high dependency unit). It was nice to have her company, I just felt absolutely drained going through it again. When Polly got taken into HDU they have to put a cannula into a vein, this is in case of emergency they have an access point. They tried every wrist, arm, leg, foot and couldn’t get one in. I had to stand outside the room and walk away hearing her cry, it’s painstaking but I’ve been there next to her so many times when they have tried to do it. It’s actually traumatising, I’m just glad she will never remember it. I’m very queasy and although I said I’ll stay with her, they told me there could be quite a bit of blood and I was best to leave. It’s moments like that which are just so stressful, when they can’t get a cannula in and have to keep repeating just makes her so upset. It’s awful.

After a few days she was doing well and out of intensive care and back onto the cardiac ward. Although it’s a very good thing she didn’t need to be in the ICU, selfishly I secretly preferred her there because she got a 1-2-1 nurse and they are literally on the ball amazing. Everything is so fast paced there, they are always looking to do the next thing to get the child well and out of ICU. I just didn’t want anything to be looked over or missed and having a repeat visit. Back on the cardiac ward Polly started to come on leaps and bounds and her wound was looking a lot better. During our second week at GOSH, on the doctors round I asked what we was looking at time wise with staying there. He replied for us to expect to stay “for some time”, they just wasn’t sure where Polly was heading and if it was looking like another surgery. She started doing so well though and gradually canulas started to be removed from her. She was seen by physio, the dietician and speech and language for her feeding all whilst we was there so we could get the ball rolling in those departments. Gradually her SATS we’re getting better, which is her level of oxygen and some nights it dipped and would beep for a couple hours but then it just got better. I’m not really sure what the turning point was to be honest. I look through the daily photos I took at this time and I amaze myself how we got through that. The thought of going back and doing that again, I just don’t know if I would have it in me but I pray we don’t ever have to!

When Polly wasn’t attached to anything but a monitor and I was able to take her off to walk her about, I took some photos of her in my bed which was in her room by the window.

So after another 20 days of hospital day in, day out we was discharged!! It came as a huge shock as they were planning on sending us home a couple of days earlier, we wanted Polly to have her first immunisation jabs at the hospital so we stayed for those. She caught a temperature so we had to wait till that was clear for a certain amount of hours, making sure all her numbers were good and she was well till we went home!

Friday 7th June we got discharged.

just chilling in her car seat in her new dress and tights ready for dinner at Nanny’s house

My baby girl was 4 months old and all I had known since having her was hospital life. We had adapted so well to it, that was our life. It did give myself and Dom a lot of time together, which you may struggle to find time for with a newborn. But Polly wasn’t a newborn anymore, she was 4 months old but everything about being a parent and finally going home with our child was new. It hadn’t been like we expected, it was nowhere near your typical joe parenthood. When I look back I feel robbed of this time, it’s a weird experience but I suppose it’s been ours. Nobody would get it, nobody could understand unless you have been there yourself. Waking up in the morning to get showered and dressed, skipping breakfast to get to the hospital as quick as possible to see our baby girl. Having our coffee in the parents room before we went in to see how she had been through the night, how she was doing that day. Most nights I went to bed with anxiety thinking of Polly waking up in the night and I’m not there, I’m not with her. The nurses were amazing but they wasn’t me, they wasn’t her Mum. We did give ourselves breaks, we went out for lunch and stretched our legs took a couple hours to go keep busy. I found that kept our minds sane, then we would come back and sit with Polly until we went home for dinner. Some days we went back again after dinner, and she would be sleeping but that made me happy to know she was happy and settled. As I write this part of my post, I’m sat in our new home that we moved into a few weeks ago, Dom’s having his PlayStation time and I’m sat on the sofa having a cuppa tea while Polly snores away in bed. I can’t quite believe this is our story I am telling. It feels surreal, like something I haven’t really processed and I think it will affect me for some time.

To think we have now been home nearly 3 months is mad. I’m happy to say the things Polly has achieved since being home has amazed me every single day! The second day we was home she was rolling onto her side, which she had never done before. Baring in mind she had practically been laying on her back in bed for nearly 4 months.

Once I started laying Polly on a blanket on the floor, she began rolling over and through working on her physio everyday she has also got stronger with sitting up!

Polly’s first swimming costume for when we put her in a paddling pool, she loved the water & loves splashing about in her bath too!

on the day Polly turned 6 months old 💖

out of her newborn bassinet into her big girls pram! This felt quite emotional for me

holding herself up for more than a few seconds, just working it all out and she was so proud of herself!

I promise to always tell you that the sky is the limit, you are capable of big things baby girl and I am so so proud of how far you have come!

3 months on

Polly grows stronger everyday and although we have had some set backs, a few A&E trips and courses of antibiotics several times it doesn’t stop giving us hope. Hope that Polly will fight every way she can, she is achieving so much before our very eyes and it amazes me what she is learning. Even little things like picking up her dummy and putting it to her mouth, children with Down Syndrome struggle more with their motor skills so this is amazing for her! We do as much as we can for Polly and to be honest I feel like our lives are pretty normal now, to us Polly is like any other child, having her tube is normal it’s just our way of life. Yes we have to do more for her, there’s more care involved and you are the carer as well as the parent but I wouldn’t have her any other way.

I am only just starting to process everything we experienced from the moment Polly was born. It does upset me & I think therapy would help and there’s no shame in that. I feel like there is so much built up emotion that I cannot physically let go of with all the trauma, but one day I’ll be able to. Last night I went to a yoga class and my teacher had previously said to me to just let go of all my emotions. So I did. During meditation I felt them creep up and I got a lump in my throat and I just let it go. The tears ran down my cheeks as I thought of Polly’s life being saved. I felt grateful. Grateful to have our baby girl here with us, grateful to have her heart beating and I gave thanks to God.

80 days in hospital & counting...

We received Polly’s diagnosis during pregnancy, firstly that she has Down Syndrome and secondly she has a large AVSD (atrioventricular septal defect), for those who wouldn’t know that is a heart defect which means she has two holes in her heart. We knew that this meant surgery, initially around 6-8 months old but then it turned out she will need the repair around 3-4 months old. It felt like being hit by a train when we found out about Polly’s heart defect and I particularly found it very difficult to accept during pregnancy. I don’t think you have any idea on what becoming a Mother is until it happens to you, I have been honest is saying I’ve found it very difficult although it feels like I was always meant to be a Mum. Everyone’s parenting life is unique and this is ours.

During the last few weeks of pregnancy I used to break down sobbing because I wanted to know that Polly was okay. The feeling of fear I got in the pit of stomach and the tight pain in my chest, I would think of all the worse things, and just want to know she was healthy and well while I was carrying her. The waiting is so hard and I can imagine that’s the same for any expectant mum. I didn’t ever think about us spending time in hospital, apart from after having Polly I thought we would be kept in NICU because of other people’s stories that I had read. But during pregnancy nobody told me that Polly would be taken to intensive care (NICU) once she was born, maybe doctors always wait for the baby to be born to determine what levels of care they need but I wish someone had been honest and said there is a strong chance of her going to intensive care after birth. Maybe that could of prepared us a bit more of what was to come. Truth is, any baby whether they have a health condition or not, you can never prepare yourself enough for.

So Polly was born and spent the first 3 weeks of her life in NICU. How we managed that I don’t know, what helped me get through it was seeing the preemie babies and their Mummas who had been there for months. I would think it must be so much harder for them, and that I shouldn’t feel sorry for myself as Polly was born full term. I would look at anything to make myself feel better. Everyday I would wake up and say today is a day closet to going home. Anything in life you have to find a positive, that and having faith in God is what gets me through most situations.

Polly at 1 day old - she didn’t have a name until she was 4 days new

NICU is HARD, and when I see posts on social media now about how a Mothers mental health is affected by having your baby in NICU I really believe it. Going home every night without your baby is extremely tough, the only thing that I looked forward to was sleeping, and I was grateful that I was able to do that. Sleep and rest is what can help get you through those days sat by your baby’s bedside, you need the strength mentally to be able to just sit all day in a chair holding them or beside your baby. Only a NICU parent would understand the pain you feel when you go to bed at night, knowing that your baby is elsewhere.

Polly was home for two weeks after NICU before she got readmitted to hospital with a viral infection. We spent 4 long days in there and I got so down, I am actually laughing now because I cannot believe it was only 4 days compared to what we are currently doing. It felt like 2 weeks, but those days were seriously tough. I think I found it so difficult as we had been home and started to settle, then going back to where you were is even harder to pick yourself back up again. We finally went home and was then back in our local hospital the following week after an appointment at Great Ormond Street Hospital (GOSH), where they noticed how much Polly was struggling to feed and really exerting herself. This meant she needed a feeding tube (NG tube) which would go through her nose and into her stomach, filling her up without her having to take a bottle. Polly wasn’t best pleased about this and it took her a good week to get used to it. We spent another 2 days in our local hospital where she had her NG tube fitted and we got trained on how to feed her through it. We hurried that training along so we could get out that hospital as quick as we could! Yes we was finally back home (again) and trying to settle into a new routine of feeding with a bottle for 10 minutes then the rest through the tube, this was every 3 hours. As soon as you was done with the feeding, sterilising all the syringes and having Polly sit up for 30 minutes as we suspected colic/reflux, it was then time to feed her again! If she had it her way she would sleep through the night, and so would we! But she needed weight gain for surgery and her amount of milk seemed to be half of a baby without cardiac issues!

It’s funny to think how them two days we spent back in our local hospital made Dom & I feel so down, we was sick of being there. Particularly because the room had no windows (I have a thing with needing natural light in a room and having curtains open), there was no TV so only the bleeps of the hospital machines for 48 hours. I think we were just so sick of our local as we had already spent the first month of Polly’s life being there everyday, we wanted to be anywhere but there. We had already spent 5 days in hospital from my labour to birth, so many numbers and days, have you lost track yet? Because I have and I’ve just had two coffees!

Polly had an appointment a week later, just as her Dad had gone back to work and I was starting my first few days with her on my own working out our new routine. I am really terrible with time keeping I won’t lie, but I got us out the house on time and to our local hospital for Polly’s first check up appointment! Polly’s oxygen saturation was low during this appointment - being a cardiac baby, it always is. I did tell the doctor it was normal, but no she wasn’t happy and wanted to readmit us into hospital that day. I was devastated, I hadn’t even had a cuppa tea!

I was so deflated at this news, back in hospital AGAIN and we got taken straight onto the ward and into our room. That was over 40 days ago now and we are still here, unfortunately. I called Dom to break the news that no I wasn’t on my way home, and that we was back in hospital. A couple of days after that Polly wasn’t great, she seemed to have caught a chest infection so maybe it was lucky we came in when we did.

first night back in hospital for our longest stay yet

First night back in the local hospital with Polly, she looks pretty happy still

emotions

If I we’re to sum up the last two month’s we have spent in hospital it would be ‘hell’. I have found myself in some really dark places in my own head, and I could speak for Dominic too. Being in hospital with no real idea when you’re going home is painful. You’re just living every day for your little one to be better and awaiting the news for when you can go home. But we never did get that positive news, we spent 2 weeks in our local hospital waiting for an “infection” to clear, which it did. Then the next step was for Polly to be able to come off of oxygen. When I said to the doctor what if she was on oxygen for another 2 weeks, he said then we just wait till she doesn’t need it anymore. If we could deal with tube feeding Polly at home, we could deal with her being on oxygen at home. Anything to get out of there!! But the doctor wasn’t having any of it, we had to be there until she didn’t need it anymore. She was better in herself, a bit snotty and needed suctioning but she would dip up and down. On the ward round every morning I eventually lost hope, all hope that we was going to go home. I just knew what they would say when they come in to assess Polly, and it was always “yep just keep doing what we’re doing”, nothing then really. They wasn’t doing anything we couldn’t do at home other than monitor her oxygen and even then they was terrible with that.

Unfortunately we had a really bad experience in our local hospital and it doesn’t have to be named, so I won’t go there. It was shocking actually the lack of care Polly was receiving and also us as parents. You’re meant to be able to leave your child on the ward knowing they are being looked after so you can go get some food or even go home over night if you had too. But we never because Dom and I just didn’t feel we could trust them at all with looking after Polly. Her monitor was CONSTANTLY beeping, when friends would come to visit they was surprised at how much the machine beeped and that we listened to that all day and night. I mean it would send you insane, added on top of if your baby isn’t crying then someone else’s is, sleeping on a pullout chair and just living in hospital in general with very little sleep. It drove me bonkers! I stayed for the first two weeks, as Dom was back to work, and that was really hard. He would finish early evening and go straight to the hospital to relieve me and I would go home and sleep for 3 hours, shower, eat and go back again to stay. It gives me anxiety now to even think about all of that, there is real fear there to end up back where we was. After 2 weeks in our local, Polly started to get unsettled for a good few days, she was working harder with her breathing and she just wasn’t happy at all. It was a Monday night and Polly had barely slept through the day, the evening came and she had a 20 minute nap at midnight before she woke up again and was really unsettled. A couple of hours went by before the nurse give her paracetamol to try settle her and let her sleep. That didn’t touch her at all she was thrashing around, sucking the dummy like mad then spitting it out and crying again - this went on constantly for 9 solid hours she did not once stop for a break or sleep. Polly was working super hard with her breathing, getting more recession in her chest and her heart rate was going up in the 180’s-190’s. The doctor came in to see Polly around 4am(maybe just after), assessing her taking bloods before she said “I’ll be back”. Nearly an hour had passed and she was only getting worse, I was at my wits end as I was just soothing her as much as I could with nothing working. I asked for the doctor another 2/3 times, before she strolled back in at 8am. During the three hours the doctor was doing nothing to help Polly and had just disappeared, I text Dom to say ‘don’t go to work, Polly’s not good please come to the hospital’. I just knew this wasn’t going to end well, that something was going to happen. So by 8am Dominic was with me and the doctor eventually came back casually into the room with a chirpy “how’s Polly doing?”. At which point we said to her well she’s not good and has got worse!! The doctor said she suspected an infection. At these words I completely lost my patience and shrieked “infection! another infection!!??” I said, “we have been in here for 2 weeks with an infection, I’ve seen doctors and nurses come in here without washing their hands and touching the baby!!”. To which the doctor replied, “I know it must be very frustrating”, at that point I shouted “frustrating!! It’s depressing being in here every day I am so down!!” I just completely lost it then and broke down crying, there may have been one swear word in there from anger.

Not sleeping all night and seeing your baby daughter struggle all night to breathe and not sleep herself just took its toll on me. I said to Dom I had to go home to sleep, even for 3 hours and I would be fine. I just knew I needed to sleep to deal with what was coming. Call it Mothers intuition but Polly needed help and she needed it immediately. You might think I was a bad Mum for leaving to go and rest myself, but I was at breaking point and I completely trust Dom in being there and looking after Polly. He would do everything he could for her so I trusted in him to be there while I just got a few hours sleep and I would be back again. Luckily I did sleep because what happened next I know I wouldn’t have coped with at all having no sleep.

the night before Polly got intubated

I woke up after a few hours to a call from Dom saying Polly was currently in theatre. The doctors had to sedate her to put her on a ventilator and she was being taken to Great Ormond Street Hospital. She was working so hard breathing and her heart rate was soaring up to 220 (it usually sits around 140-150 with her resting!) I was so grateful that Dom was there to make a clear decision. I cannot imagine how he must of felt seeing Polly in that way, a very quick decision was made that she had to be sedated and needed a ventilator as the other forms of oxygen weren’t working. We was to pack our bags, get back to our local hospital and leave for GOSH within the hour. By the time I got to the hospital Polly was in her incubator being strapped down for the journey. We got blue lighted to GOSH and most parents would be in pieces about what had just happened to their baby. I felt relief that we was leaving our local hospital. They let Polly get so bad that she had become an emergency under their care, quite frankly she could have died.

I knew we was going to the best place and that Polly would receive the best care and everything she needed to get better. Even thinking of our local hospital now I get anxiety over the thought of possibly going back there. At this point her heart surgery was never booked in, it was said when she was around 3-4 months old at 5kg if possible. But that if she needed it sooner the doctors could do it sooner. Polly spent 5 days in intensive care, going from strength to strength, she seemed like a different baby in less than a week. She even give us her first smiles!! Oh God, that was the best feeling in the world. I can’t tell you how much we both needed that. Going through such a dark time of just ‘existing’, it felt like we was being rewarded. Knowing Polly felt happy after all this time and everything she had been through, that smile meant absolutely everything to me. It gave me a purpose again.

We was told after a week in GOSH that Polly’s heart surgery was booked in for over two weeks time and that we was to go back to our local hospital until then to get her over her infection. She had a suspected infection of bronchilitus/cold but no tests actually came back positive, they was all negative so there was also talks of it being cardiac issues. The only factor that pointed towards infection was Polly’s temperature that started before she was intubated, it went up to 40 by the time we had arrived at GOSH. I believe she was treated for suspected sepsis then which seems to be what most hospitals are doing in case it is sepsis.

I was devastated to hear we had to go back to our local. So much had happened there and so much time spent it had traumatised us both. But we had a plan in place, rather than before we had no idea how long we were spending there. We was to go back until Polly’s operation on the 30th April. So we did, we went back and we told the nurses in charge how poor our care was before and that we were devastated to go back. It shouldn’t be like that, we should have faith in the people caring for our most precious baby. After a week back in our local, it turned out nobody knew of Polly’s operation being due anytime soon. So after contacting GOSH and finding out it wasn’t actually booked in - even though one of the doctors there had told me it was and that it “definitely” was. Dom and I was furious, it felt like we were fighting a loosing battle. GOSH then give us their next appointment date which was 13th May, a further two weeks away from our original date. This wasn’t good enough, it pushed everything back and Polly could just go downhill again. If she had caught another infection during that time it would only put off the surgery even more.

After a lot of back and forth, it was a Friday and we was told we was going to GOSH on the Monday - wehoo! Dom and I were so relieved, we thought it was just for the day and that they was going to assess Polly for her op and then send us back to our local again. It got to the day before we was going and we asked the nurse to call to confirm what was happening as nothing was clear - lack of communication on everyone’s part!! The nurse came back in to say Polly’s surgery had been brought forward to the 2nd May! That was 4 days away, we couldn’t believe it. I felt every emotion at once, excitement, relief, anxiety and fear. The day we had waited a year for since her first diagnosis, was finally happening!

It has been 40 days and counting since we was first readmitted to hospital, Polly has changed and grown so much since then. She has a wardrobe of clothes that have never been touched, and a home waiting for the three of us to return to as a family. Polly’s open heart surgery was a success and she is now in recovery, every day is a new day and each day I am filled with anxiety. Polly’s surgery is where she needs every ounce of strength, love and care and I ask for everyone reading this to pray for our little angel. Pray for a strong & smooth recovery, that we can all be at home together real soon and finally start our lives as a family of three.

One week post surgery and Polly is looking better everyday!