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!
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.
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.
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!
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.
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!
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.