Needless to say the past week has been traumatic. In fact, I don't even think there is a word for it. I think my husband and I are still in shock. To see our son, go from having a sniffle, to a coughing fit where he couldn't breathe, to being admitted to hospital needing oxygen and to be tube fed, to find out he has a heart murmur, for it to be confirmed he has a medium sized hole in his heart - all in five days, is beyond frightening. But the fact the little man is back to being a milk monster and his first smile was in the hospital shows we have one tough cookie for a son.
So what's the next step for this little one?
I guess I should start from the beginning. So I told you about the cold he had which started last Thursday night. As the days went on, it started to get worse and he developed a cough. On Saturday he sounded really chesty and full of snot but no amount of snot sucking was helping. But he was still feeding okay and after seeing the doctor for my check-up, she advised me just to carry on what I'd been doing and ride it out. Saturday night I had to wake him for a feed which I've never had to do before and he just was so tired and not really fussed but Sunday morning he fed okay. But when my husband was changing him, he shouted for me to come upstairs and Rafe was coughing violently and going red - he looked like he was choking. It was really frightening. He calmed down and started going to sleep but rang 111 who booked us in at Arbroath out of hours. The doctor saw him cough and checked his breathing and wasn't overly concerned but wanted to get him checked out by a pediatrician at Ninewells. He also asked us whether we knew Rafe had a heart murmur - we said no. But again, he wasn't overly concerned - he just said to get it checked. It was quite a shock to hear him say he had a heart murmur but he seemed not to be worried so we were reassured a little.
When at Ninewells getting checked over, his cough started to get worse and he started to get really sleepy and seemed lazy when feeding. Like he was exhausted. They decided to admit him and we were put on Ward 29. Chris had to leave and I tried feeding him again but he was just so so tired. Then he just seemed to deteriorate. The nurses suctioned his nose which was horrific. She said I could leave the room but I didn't want to and he just screamed and screamed. His oxygen levels and heart rate were worrying the nurses so they wanted to tube feed him to give him a rest. When they inserted the tube I have never heard him cry like that. And he just kept looking at me as if to say why are you letting them do this mummy? It was heartbreaking. The next few days he pretty much stayed the same and were like a blur. He just slept and slept which for such an alert baby was awful to see. He just looked so fragile with all the tubes on his little face. They started him on hourly, then two hourly feeds but had to go back to one hour as it was too much for him. You could see his little chest working so hard. The doctor suggested just giving him an IV drip and no milk but thankfully he managed on the one hour feeds again. It was hard to give him a proper cuddle because of all his tubes, which was so upsetting. And I had to express like a mad woman. The pump was amazing but practically pulled my nipples off so really felt like a cow. I became a little obsessed with expressing and feeding him with my milk to be honest. Like he wouldn't get better without my milk. I think because I felt so helpless, I felt that as long as I was still feeding him my milk, I was helping.
Rafe had an x-ray the night we were admitted and at around 5am on Monday I woke and saw a doctor trying to soothe Rafe so I got up. She said that he had bronchiolitis and from the x-ray, although it wasn't very clear - he looked like he had a hole in his heart. I think I just went into shock as didn't quite know what to say. She said they were common and don't necessarily mean the worst as some people don't even know they have a hole. But on Tuesday AM a doctor did a heart trace and confirmed he did have a hole in his heart and then the following day, a paediatric cardiologist from Edinburgh saw Rafe and told us that it was a medium sized hole. It wasn't small enough to close on its own but not big enough to warrant emergency surgery. He said he wanted to see him in a month once he has recovered from bronchiolitis and decide what needed to done and if surgery definitely had to go ahead. They also want him to get the RSV jab as his heart might not cope as well as it has if he gets another virus. So although relieved the hole does not need operated on straight away - Chris and I both feel in limbo. There's still a strong chance he may need heart surgery which is terrifying. But trying to remain positive. He showed no symptoms before it was detected, it was only discovered because of the bronchiolitis. A lovely woman contacted me after my last post and said her son had been in a similar situation and they were adamant he needed surgery but the hole did close up on its own. But like she said, people say not to worry but you only get one heart. And he's so tiny. I can't even bare to picture him on an operating theatre.
We are moving back to the North East next month (long story!) and he will be seen at Freeman Hospital which just so happens to be the top place for paediatric cardiology so he'll be in the perfect place. Just need to try and keep people and children with colds from giving him kisses and cuddles but easier said than done in the winter! Especially as I have picked up a cold from being in the hospital. I do want to wrap him up in cotton wool until the next doctor's appointment but know I can't do that. Just going to be the hand sanitizer police for a while.
Seeing Rafe lying there so helpless and fragile was heartbreaking. It was also an exhausting five days - mentally and physically. We were in a ward with other babies with bronchiolitis - a couple were only three weeks’ old. It was awful in the night when the machines monitoring their heartbeat and breathing were all beeping and they were being suctioned and crying their little lungs out. I'd look around the room at the other mums and we'd give a knowing little smile with tears in our eyes as if to say: "this is fucking horrendous isn't it?" My boobs were like Niagara Falls as so many babies were crying I just leaked milk everywhere. Some teeny tot who was three weeks’ old was left overnight by his mum and because the nurses were rushed off their feet, there were times in the night when he just wanted a cuddle, but nobody was there. It broke my heart. It also broke my heart to see Rafe so poorly - but as the nurses said, children get ill very quickly and bounce back so quick too. And boy did he bounce back! He started to be more alert on Wednesday PM and by Thursday he had his eyes wide open and he started to get hungry. It was so hard as he kept looking at me to feed him but I couldn't in case it hindered his progress and he was getting upset. We tried a dummy but he just aggressively sucked it and cried when no milk came out. On Wednesday night they started him on three hourly feeds which he tolerated. So on Thursday I was able to try breastfeed him - as well as him still being tube fed. It was a struggle and there were lots of tears as he struggled to latch on properly as opening his mouth was hard work. But Thursday night we had an okay feed and on Friday morning I went over to his cot and the little champ saw me and smiled at me for the first time. It was an amazing thing to see. One of the best moments of my life. We managed an okay feed again that morning and the doctor said he could go home. He could have a cough for six weeks and he still has a sniffle but just need to keep an eye on him. I'm watching him like a hawk - especially his breathing as he does look tired after a feed but just need to remember it will take a while for him to recover. But I'd rather be over cautious - even more so because of his heart.
I don't think you'll ever be prepared for your child being in hospital. You just want to take all their pain away. Like I said before, I'd be ill for the rest of my life if Rafe never was. My husband has been my rock these past few days. Although he's just as upset as me, he has kept morale up, made me laugh - and kept all the nurses entertained too, with his stories. He loves telling a good story....
The staff at Ninewells are incredible and words cannot thank them enough for the care they gave our little one. Although I obviously never want to be back there again! And I never want to see that bloody breast pump ever again 🙈 I just wish I could say I'll never have to see my baby boy in a hospital bed again. I just hope and pray his little heart will heal itself. As one of my friends said, he has Marine blood in him so he's a strong little boy - our little fighter.
Thank you so much for all your messages - I'm sorry I haven't replied to them all but they mean so much. There are some positives to all this. Even though seeing him this ill has been awful - at least they detected the hole in his heart early on.
I'm still going to keep posting - hopefully get back to writing about my pit tits and poo explosions soon!
Royal Marine Wife. Mum to Rafe.