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!
