Processing surgery


Last week Rohan had surgery planned to locate and try to descend his testes, and I wanted to write about and share it on here, to in fact help me process what went on.

I had a little wobble a few days after, I felt anxious and insecure about my photography business but now I know it was just an outlet. Once we got settled in back home we just spent the first few days doing nothing, I made Rohan a little nest in our bed and he sat and watched cbeebies again for the whole morning and just resting, I was exhausted too. I think the adrenaline keeps you going for a few days and it's when you stop that it becomes worse. Your brains starts to go over all that had just happened and sometimes it all gets a bit much. When you're in hospital you have to go into survival mode, you have to speak to doctors and nurses all the time, you have to keep strong and have a brave face all the while you know that this isn't exactly a normal experience. Then when you finally get home it all starts to just settle a bit more and feelings, worries and your anxieties start to bubble to the surface. I always like that bucket of water analogy, where it feels as though you keep adding splashes and drips of water (worries) here and there until suddenly the bucket is full and the last thing that you add just starts off the leak until the whole load tips over and everything comes gushing out. That's often what happens with me, I think I try so hard to keep it altogether that every once in a while it all becomes too much, when I stop for a while or something trivial upsets me it all comes out. I know it's not the best way to deal with things, but often I feel like I just have to get on with things, I don't have the time to stop and process things, and often I'm a little scared to, but I think now I know the warning signs and I need to make sure I give myself the time and space after something like surgery and hospital stays to process all that happened. Even if that means just writing out the experience and letting the words flow from my fingers and put down on paper (keyboard!) all that happened.

 So perhaps I should give a little back ground to this whole story.

When we found out Rohan's diagnosis of his genetic syndrome we looked at the characteristics and saw that one of the most prominent was that most boys will be born with undescended testes. Looking back at his birth notes it was noted that he was in- fact born with then descended as they were felt at birth. We didn't really think too much else of it, as life caring for him took over. It was only at a paediatrician check up did I mention it again because in those first few weeks of getting him home and washing him in the bath did I realise that I couldn't feel them. She had a little check and couldn't really feel them either, but located one just above the sack. Nothing more really came of it though as again I think his other health problems took a front seat.


When we moved a little while later and were assigned a new paediatrician, I again raised my concerns of still not being able to feel anything. Again he was examined and the new paediatrician said that he thought he could feel them, but I wasn't convinced. Finally a year or so later we saw him again and I repeated my worries and after perhaps a more thorough examination the paediatrician decided that actually he couldn't locate them either. So maybe they moved up and down and all around, or maybe it's actually quite hard to correctly confirm whether they are there or not, but we were finally referred to urology for an utlrasound that happened over the summer.

Again because undescended testes aren't really a life threatening problem right now, we had to wait to see if we had the all clear from the cardiology point of view, because it needs surgery to descend them. Even though it's not anything urgent it is important to get done as if the testes are left in the abdomen then they can cause growths that can become dangerous. It's also important for hormone development as he gets older and anything we can do to help Rohan, we want to do.

So after we got the all clear that this surgery wouldn't put any unnecessary pressure on the heart or get in the way of cardiac surgery we were given the go ahead. The ultrasound had managed to locate one of the testes but the other was proving elusive. We were sent away being told that the doctor would review his results. I didn't really think too much else of it, as immediate surgery wasn't mentioned, I just thought of it as a some time in the future thing, but a few weeks later we got a call saying that there had been a cancellation on the surgery list and would we like to take the place, but the date was for the day before Theo started back at school and we didn't think it fair to have all this going on when we were trying to Theo ready and prepared, so we declined it. But then we got a call a week later saying that there had been another cancellation and the date was for the following week. I didn't agree straight away as I think I needed to consider all the implications and our schedule, but in the end we decided that there was never really a perfect time to have surgery and actually the sooner the better before it gets to winter and the dreaded cold season. We were told it was usually just a day case too, so we didn't think it would impact too much, well as much as any sort of procedure can. So we agreed.


Last Wednesday rolled around pretty quickly and Rob and I headed into Bristol with Rohan on Tuesday evening to stay at his parents as we were due in hospital at 8am (whilst Theo was looked after by his Oma at home) We had originally been given a time of 12pm to arrive and be on the afternoon surgery list, but actually again at the last minute we received a call to say they wanted us on in at 8. We weren't really given any more information than that, and usually we receive a letter stating starvation times before admission etc but as the time changed so close to the day there wasn't chance, so we just assumed it was the usual 6 hour starvation period and that his surgery had been moved to the morning, which is what they had said. But when we arrived there was quite a lot of confusion as to why he was actually there at 8am as he was still on the afternoon list. They mentioned in fact that they thought he may need cardiac review before the surgery, but now I'm thinking that perhaps they got this confused and mistook the earlier instructions of waiting for cardiac sign off to go ahead (which we already had!) to add to the confusion even more we were then told that ENT had requested to also do surgery at the same time, under the one general anaesthetic.

So you can imagine, at around 9 or 10 in the morning, after none of us having eaten (including a very confused and upset Rohan who didn't understand why he couldn't eat or drink) we were let in on all the information. Again as a bit of a back story we had requested ENT intervention way back at the beginning of the year through our respiratory consultant, as I believed that perhaps quite a few of Rohan's issues, mainly his constant snotty nose, loud breathing and snoring, obstructed sleep apnea and glue ear were probably down to having large adenoids and tonsils. We were referred thankfully and they agreed to do the surgery and he was approved for the funding and we were told hopefully it would be in the Spring or Summer. And then we waited and heard nothing. We probed a few times and again heard nothing. Then suddenly without pre-warning, we were told that they in fact wanted to perform the surgery on that day, and it would require an overnight stay and monitoring.

To say we were shocked was an understatement, I think we were still trying to get over the original miscommunication of the time mix up and trying to work out whether we could in fact give Rohan any food or water, and then this. We always pack for the possibility of an overnight stay anyway, as you never know, but we definitely hadn't prepared for this amount of surgery. In a way I guess it's a good thing it all happened to quickly, as when you have a date of surgery looming over you for months it's like a black cloud, you know it's coming, you know it'll be tough but you know you've got to do it. I was fairly worried about the adenoid and tonsillectomy as I didn't know how Rohan's body would cope. His airways are weak as it is and I've probably been a bit scared by seeing in the facebook support group for RTS a little boy around the same age as Rohan have the surgery and needed to be in intensive care for a few weeks after. I mean in general the surgery isn't that major as surgeries go, I mean it's not open heart or brain surgery, but it's still a risk in top of all the other risks that their little bodies pose. As with a lot of children with genetic syndromes their anatomies can be a little different and their bodies may react in different ways to the norm.


But we didn't really get the chance to think all this through. It made sense to have it all under one GA, to only go through the recovery once and again to do it sooner rather than later, after all we had been waiting since the Spring. So we agreed. I felt awful that we were agreeing to put Rohan under so much strain, to go through pain and the recovery without him knowing anything about it. It's one of the toughest bits of this all, not being able to explain to him. Him not knowing why we're at hospital, totally unaware of what's going to happen, him finding it confusing that he's asking for food, milk and water (all with beautiful signing) and us saying no when we usually say yes. It's so hard to be read the risks, to sign the consent forms knowing that something could go wrong and that you were the one that let that happen. You know it's all for the best in the long run and it will hopefully make his health and daily life better, but still it's hard.

Soon enough the time for his surgery came around (at the time it seems like an age you have to wait when you have an upset child, but we did manage to distract him for a while in the playroom) at 2pm. He'd not slept or eaten so was pretty unhappy, but we carried him down to theatre. They let both of us into the anaesthetic room this time as I think they felt we'd been through enough that morning. This is the bit I always hate. The bit where you have to literally hand your child over to someone else. To hold him in your arms as he's confused yet again as to where he is and why there's all these people hovering over him and they place the mask on his face. We try and soothe him as best we can, him on my lap, Rob helping him be relaxed. This time he fought the mask a little and took his time to settle but then eventually his eyes start to close and his little body goes limp. Then you have to lift him on the bed and are told you can give him a little kiss. I stroke his hair and try and take in as much as his little body as I can. I know it's only going to be a few hours, but there's always, always that tiny voice at the back of your head that says something could go wrong. You try and ignore it, but at the same time it's very real so you all in a second take in as much as you can and will yourself to leave his side. Then you get ushered out the door and then you wait.

We'd not eaten all day, so we headed into town. The adrenaline keeps you going and we did some errands and looked in some shops and walked round and round until our feet hurt and we decided that we should go back and collect our things and wait in the new ward. It's a ward we've been to many times before, so in a way it's good for it to feel familiar. Around 5.30pm the ENT surgeon comes to find us to tell us that it all went well, which is the biggest relief. This was the longes time he's been under general, and the longer you wait the louder that little voice gets, so as soon as you get any news you can finally relax a little. Not long after that we got the call from recovery where we went down to collect him. Rohan was asleep when I arrived, being wafted with oxygen. He looked so little lying in the big bed. Thankfully he wasn't covered in too many wires and things, but he just looked tired. We were then wheeled back round to our ward and transferred to a cot and hooked up to the machines and oxygen.

By all accounts both surgeries went pretty well, the first part for his testes was always going to take the longest as it wasn't clear exactly what they would be able to do. First they had to find the testes by inserting a camera into his stomach, then if they found them they had to decide the best course of action. They managed to locate them both, and one they were able to bring all the way down in  his scrotum but this had to be done through an opening, so he has a fairly big scar where they did that. The other was a lot smaller, but they couldn't move it all the way down because of blood vessels, so they did what they call a stage one, which means it's likely he'll have to have this operation repeated in six months. We've got to go back in three to check how both testicles are doing as there's a chance they might not survive the move. The adenotonsillectomy also went well and the surgeon said that his adenoids were very big, so we're hoping that once the swelling has gone down we might start to see a difference in his breathing and runny nose. He also had grommets put in his ears to help with his glue ear and therefore hopefully his hearing, it might mean that he won't need to have his hearing aids whilst the grommets are in.


So after all the initial settling in Rohan was left to just sleep, but we noticed that his breathing was pretty laboured, but the doctors didn't seem too concerned at that point. I think it was pretty clear he was drowsy and swollen and just needed to sleep, so they adjusted his c-pap machine to a higher level than we have at home and let him have oxygen too. As he still had his cannula in they hooked him up to an IV with fluids, as he'd not had anything to eat for over 12 hours or much liquid but was far too out of it to offer him any, and we didn't want him to get dehydrated, he also had IV paracetamol. Rob had gone home to see Theo once it was clear that he was fairly settled, then we had the changeover for the night shift. With that came a new wave of observations and an outreach nurse who was concerned about his breathing. She brought in some other doctors to observe him and she wanted to start doing some other tests, but I felt in my gut that really what he needed was not to be prodded with needles and have a blood gas taken, which would inevitably distress him and break up his sleep and prolong his recovery. There were a few other things thrown around which all included disrupting him, putting him tubes, suctioning and trying other machines, all of which I said I didn't think would do more good than bad. I know I'm not a doctor and these people are obviously trained way more than me, but at the same time I know Rohan, I know that his body has just been through a lot, he's getting over the anaesthetic, his nose and throat must have been swollen but at the same time his breathing wasn't the worst I'd seen it and I wasn't too concerned about him. I think by now I have a pretty good idea of when he needs more help than we can give him and when a good time to have more medical intervention is, but I didn't think it was needed. I know that suctioning him just causes him to bleed in his nose causing more blockages, trying to put a tube down his nose to open his airways would distress him and cause bleeding and disturb his already really sore nose and surgery wounds and trying another breathing machine would mean waking him up and fussing him and disturbing his rest even more, which in my head was what he needed the most.

The doctors seemed to agree just to let him be and keep an eye over him overnight, because really we knew why he was breathing the way he was. It wasn't like the other times we've brought him in because of his laboured breathing (when he's had nasty viruses and completely blocked upper airways) it was because of the surgery, the anaesthetic and just being exhausted.

I made up my bed on the not-so-comfy pull out chair bed and tried to get some sleep. His Sats did keep dropping but he was bringing them back up pretty well on his own and they were only fleeting. It was worrying though, I did have vision of whats happened before, where the oxygen doesn't work and he would need more intervention and I really didn't want to see him become unwell. But thankfully after a bit of an up and down few hours he seemed to settle a little more around 2am and I  managed to sleep on and off until about 7am when he woke up. He still seemed pretty miserable when he woke up, and still didn't want any milk, but he'd also managed to pull his cannula out of his foot in the night but they had decided to keep it out, which was a good sign I guess. He eventually took some pain killers orally mixed in with water, then seemed to brighten up a little. He sat up in his cot watching Cbeebies whilst doctors did their rounds, he had observations and then eventually got pretty tired again and had a little nap. I think he managed to have some milk in this time too which was a relief. They wanted to see how he was during his nap as to what the plan would be, and we started him off without oxygen but soon after it was clear he needed a little bit, and his breathing was a still a little laboured, but again he settled after a while and wasn't so bad.


After a few hours he woke up and again had more pain killers to perk him up, I took him to the playroom and we even went outside and he had a go on a ride on car and seemed happy to be out of his room. I didn't want to push it though so after about an hour we returned to our room and waited on news. The doctor had said that she wanted him to stay in one more night for observation, which I would've been happy to do, but I also felt like I knew he'd be happier at home. She came again to speak with us and said that really she'd like Rohan to go home on his base level of care, which I totally understand but really that could take days, which in fact it did. He wasn't being offered any more treatment than we could give him at home and I felt confident that he was going in the right direction but all he needed was rest and to be comfortable. Rohan loves being at home and you can tell how much happier he is when he's here. I would never push for us to go home unless I felt 100% sure we could manage him, and if we couldn't then I would always bring him straight back to hospital. I explained this all to the doctor and hesitatingly she agreed. I know that she had Rohan's health at the forefront of her concerns but I also know that the doctors have to do everything by the book and obviously if something were to happen to Rohan then I could turn round and blame them. But I know also that I know my child and in my gut I knew that he needed to be at home to rest properly without the constant disruption that hospital gives, to be able to be cuddled in bed, to have all his comforts and just to rest.

I don't want this to sound like I don't respect the doctors opinion, because I totally do, I'm very aware of the amazing job they do and that of course they are so much more knowledgable than I am. It was very much a decision made between us and I'm very grateful that she was open to listening to my opinion. The Children's Hospital and the NHS have always been amazing to us. Despite little annoyances here and there on the whole I know without it we'd be in a much worse position. The fact that he had this emergency surgery for free, all the before and after care, food, equipment, medicine and the equipment we have at home is all for free. I will never ever take that for granted.

So eventually after getting all our discharge letters we were let out, about 7pm and made our way home, back to our beds.


We spent the next few days, which were thankfully the weekend so Rob was around too, just staying at home and resting. We had to make sure that Rohan stayed away from places where he might catch a cold and he is more vulnerable after this surgery. He was also really not back to himself, still tired and groggy and just needing us to be close and giving lots of cuddles. The nights did get slowly better and after the first two more unsettled night we noticed that his breathing was calmer and his need for oxygen slowly decreased until we realised that we'd not turned it on for two nights in a row. I'm so glad I followed my guy and knew that all he needed was to rest and slowly been weaned off, but rest in the comfort of his own home where we could stay in bed with him and cuddle and be there.

We're on week two now and he seems to be pretty much back to normal thankfully. We're still not pushing things as I'm fully aware that it can take a good few weeks for everything to be normal, but already we've seen some really good results - like a lot less snot! 

Processing surgery


Last week Rohan had surgery planned to locate and try to descend his testes, and I wanted to write about and share it on here, to in fact help me process what went on.

I had a little wobble a few days after, I felt anxious and insecure about my photography business but now I know it was just an outlet. Once we got settled in back home we just spent the first few days doing nothing, I made Rohan a little nest in our bed and he sat and watched cbeebies again for the whole morning and just resting, I was exhausted too. I think the adrenaline keeps you going for a few days and it's when you stop that it becomes worse. Your brains starts to go over all that had just happened and sometimes it all gets a bit much. When you're in hospital you have to go into survival mode, you have to speak to doctors and nurses all the time, you have to keep strong and have a brave face all the while you know that this isn't exactly a normal experience. Then when you finally get home it all starts to just settle a bit more and feelings, worries and your anxieties start to bubble to the surface. I always like that bucket of water analogy, where it feels as though you keep adding splashes and drips of water (worries) here and there until suddenly the bucket is full and the last thing that you add just starts off the leak until the whole load tips over and everything comes gushing out. That's often what happens with me, I think I try so hard to keep it altogether that every once in a while it all becomes too much, when I stop for a while or something trivial upsets me it all comes out. I know it's not the best way to deal with things, but often I feel like I just have to get on with things, I don't have the time to stop and process things, and often I'm a little scared to, but I think now I know the warning signs and I need to make sure I give myself the time and space after something like surgery and hospital stays to process all that happened. Even if that means just writing out the experience and letting the words flow from my fingers and put down on paper (keyboard!) all that happened.

 So perhaps I should give a little back ground to this whole story.

When we found out Rohan's diagnosis of his genetic syndrome we looked at the characteristics and saw that one of the most prominent was that most boys will be born with undescended testes. Looking back at his birth notes it was noted that he was in- fact born with then descended as they were felt at birth. We didn't really think too much else of it, as life caring for him took over. It was only at a paediatrician check up did I mention it again because in those first few weeks of getting him home and washing him in the bath did I realise that I couldn't feel them. She had a little check and couldn't really feel them either, but located one just above the sack. Nothing more really came of it though as again I think his other health problems took a front seat.


When we moved a little while later and were assigned a new paediatrician, I again raised my concerns of still not being able to feel anything. Again he was examined and the new paediatrician said that he thought he could feel them, but I wasn't convinced. Finally a year or so later we saw him again and I repeated my worries and after perhaps a more thorough examination the paediatrician decided that actually he couldn't locate them either. So maybe they moved up and down and all around, or maybe it's actually quite hard to correctly confirm whether they are there or not, but we were finally referred to urology for an utlrasound that happened over the summer.

Again because undescended testes aren't really a life threatening problem right now, we had to wait to see if we had the all clear from the cardiology point of view, because it needs surgery to descend them. Even though it's not anything urgent it is important to get done as if the testes are left in the abdomen then they can cause growths that can become dangerous. It's also important for hormone development as he gets older and anything we can do to help Rohan, we want to do.

So after we got the all clear that this surgery wouldn't put any unnecessary pressure on the heart or get in the way of cardiac surgery we were given the go ahead. The ultrasound had managed to locate one of the testes but the other was proving elusive. We were sent away being told that the doctor would review his results. I didn't really think too much else of it, as immediate surgery wasn't mentioned, I just thought of it as a some time in the future thing, but a few weeks later we got a call saying that there had been a cancellation on the surgery list and would we like to take the place, but the date was for the day before Theo started back at school and we didn't think it fair to have all this going on when we were trying to Theo ready and prepared, so we declined it. But then we got a call a week later saying that there had been another cancellation and the date was for the following week. I didn't agree straight away as I think I needed to consider all the implications and our schedule, but in the end we decided that there was never really a perfect time to have surgery and actually the sooner the better before it gets to winter and the dreaded cold season. We were told it was usually just a day case too, so we didn't think it would impact too much, well as much as any sort of procedure can. So we agreed.


Last Wednesday rolled around pretty quickly and Rob and I headed into Bristol with Rohan on Tuesday evening to stay at his parents as we were due in hospital at 8am (whilst Theo was looked after by his Oma at home) We had originally been given a time of 12pm to arrive and be on the afternoon surgery list, but actually again at the last minute we received a call to say they wanted us on in at 8. We weren't really given any more information than that, and usually we receive a letter stating starvation times before admission etc but as the time changed so close to the day there wasn't chance, so we just assumed it was the usual 6 hour starvation period and that his surgery had been moved to the morning, which is what they had said. But when we arrived there was quite a lot of confusion as to why he was actually there at 8am as he was still on the afternoon list. They mentioned in fact that they thought he may need cardiac review before the surgery, but now I'm thinking that perhaps they got this confused and mistook the earlier instructions of waiting for cardiac sign off to go ahead (which we already had!) to add to the confusion even more we were then told that ENT had requested to also do surgery at the same time, under the one general anaesthetic.

So you can imagine, at around 9 or 10 in the morning, after none of us having eaten (including a very confused and upset Rohan who didn't understand why he couldn't eat or drink) we were let in on all the information. Again as a bit of a back story we had requested ENT intervention way back at the beginning of the year through our respiratory consultant, as I believed that perhaps quite a few of Rohan's issues, mainly his constant snotty nose, loud breathing and snoring, obstructed sleep apnea and glue ear were probably down to having large adenoids and tonsils. We were referred thankfully and they agreed to do the surgery and he was approved for the funding and we were told hopefully it would be in the Spring or Summer. And then we waited and heard nothing. We probed a few times and again heard nothing. Then suddenly without pre-warning, we were told that they in fact wanted to perform the surgery on that day, and it would require an overnight stay and monitoring.

To say we were shocked was an understatement, I think we were still trying to get over the original miscommunication of the time mix up and trying to work out whether we could in fact give Rohan any food or water, and then this. We always pack for the possibility of an overnight stay anyway, as you never know, but we definitely hadn't prepared for this amount of surgery. In a way I guess it's a good thing it all happened to quickly, as when you have a date of surgery looming over you for months it's like a black cloud, you know it's coming, you know it'll be tough but you know you've got to do it. I was fairly worried about the adenoid and tonsillectomy as I didn't know how Rohan's body would cope. His airways are weak as it is and I've probably been a bit scared by seeing in the facebook support group for RTS a little boy around the same age as Rohan have the surgery and needed to be in intensive care for a few weeks after. I mean in general the surgery isn't that major as surgeries go, I mean it's not open heart or brain surgery, but it's still a risk in top of all the other risks that their little bodies pose. As with a lot of children with genetic syndromes their anatomies can be a little different and their bodies may react in different ways to the norm.


But we didn't really get the chance to think all this through. It made sense to have it all under one GA, to only go through the recovery once and again to do it sooner rather than later, after all we had been waiting since the Spring. So we agreed. I felt awful that we were agreeing to put Rohan under so much strain, to go through pain and the recovery without him knowing anything about it. It's one of the toughest bits of this all, not being able to explain to him. Him not knowing why we're at hospital, totally unaware of what's going to happen, him finding it confusing that he's asking for food, milk and water (all with beautiful signing) and us saying no when we usually say yes. It's so hard to be read the risks, to sign the consent forms knowing that something could go wrong and that you were the one that let that happen. You know it's all for the best in the long run and it will hopefully make his health and daily life better, but still it's hard.

Soon enough the time for his surgery came around (at the time it seems like an age you have to wait when you have an upset child, but we did manage to distract him for a while in the playroom) at 2pm. He'd not slept or eaten so was pretty unhappy, but we carried him down to theatre. They let both of us into the anaesthetic room this time as I think they felt we'd been through enough that morning. This is the bit I always hate. The bit where you have to literally hand your child over to someone else. To hold him in your arms as he's confused yet again as to where he is and why there's all these people hovering over him and they place the mask on his face. We try and soothe him as best we can, him on my lap, Rob helping him be relaxed. This time he fought the mask a little and took his time to settle but then eventually his eyes start to close and his little body goes limp. Then you have to lift him on the bed and are told you can give him a little kiss. I stroke his hair and try and take in as much as his little body as I can. I know it's only going to be a few hours, but there's always, always that tiny voice at the back of your head that says something could go wrong. You try and ignore it, but at the same time it's very real so you all in a second take in as much as you can and will yourself to leave his side. Then you get ushered out the door and then you wait.

We'd not eaten all day, so we headed into town. The adrenaline keeps you going and we did some errands and looked in some shops and walked round and round until our feet hurt and we decided that we should go back and collect our things and wait in the new ward. It's a ward we've been to many times before, so in a way it's good for it to feel familiar. Around 5.30pm the ENT surgeon comes to find us to tell us that it all went well, which is the biggest relief. This was the longes time he's been under general, and the longer you wait the louder that little voice gets, so as soon as you get any news you can finally relax a little. Not long after that we got the call from recovery where we went down to collect him. Rohan was asleep when I arrived, being wafted with oxygen. He looked so little lying in the big bed. Thankfully he wasn't covered in too many wires and things, but he just looked tired. We were then wheeled back round to our ward and transferred to a cot and hooked up to the machines and oxygen.

By all accounts both surgeries went pretty well, the first part for his testes was always going to take the longest as it wasn't clear exactly what they would be able to do. First they had to find the testes by inserting a camera into his stomach, then if they found them they had to decide the best course of action. They managed to locate them both, and one they were able to bring all the way down in  his scrotum but this had to be done through an opening, so he has a fairly big scar where they did that. The other was a lot smaller, but they couldn't move it all the way down because of blood vessels, so they did what they call a stage one, which means it's likely he'll have to have this operation repeated in six months. We've got to go back in three to check how both testicles are doing as there's a chance they might not survive the move. The adenotonsillectomy also went well and the surgeon said that his adenoids were very big, so we're hoping that once the swelling has gone down we might start to see a difference in his breathing and runny nose. He also had grommets put in his ears to help with his glue ear and therefore hopefully his hearing, it might mean that he won't need to have his hearing aids whilst the grommets are in.


So after all the initial settling in Rohan was left to just sleep, but we noticed that his breathing was pretty laboured, but the doctors didn't seem too concerned at that point. I think it was pretty clear he was drowsy and swollen and just needed to sleep, so they adjusted his c-pap machine to a higher level than we have at home and let him have oxygen too. As he still had his cannula in they hooked him up to an IV with fluids, as he'd not had anything to eat for over 12 hours or much liquid but was far too out of it to offer him any, and we didn't want him to get dehydrated, he also had IV paracetamol. Rob had gone home to see Theo once it was clear that he was fairly settled, then we had the changeover for the night shift. With that came a new wave of observations and an outreach nurse who was concerned about his breathing. She brought in some other doctors to observe him and she wanted to start doing some other tests, but I felt in my gut that really what he needed was not to be prodded with needles and have a blood gas taken, which would inevitably distress him and break up his sleep and prolong his recovery. There were a few other things thrown around which all included disrupting him, putting him tubes, suctioning and trying other machines, all of which I said I didn't think would do more good than bad. I know I'm not a doctor and these people are obviously trained way more than me, but at the same time I know Rohan, I know that his body has just been through a lot, he's getting over the anaesthetic, his nose and throat must have been swollen but at the same time his breathing wasn't the worst I'd seen it and I wasn't too concerned about him. I think by now I have a pretty good idea of when he needs more help than we can give him and when a good time to have more medical intervention is, but I didn't think it was needed. I know that suctioning him just causes him to bleed in his nose causing more blockages, trying to put a tube down his nose to open his airways would distress him and cause bleeding and disturb his already really sore nose and surgery wounds and trying another breathing machine would mean waking him up and fussing him and disturbing his rest even more, which in my head was what he needed the most.

The doctors seemed to agree just to let him be and keep an eye over him overnight, because really we knew why he was breathing the way he was. It wasn't like the other times we've brought him in because of his laboured breathing (when he's had nasty viruses and completely blocked upper airways) it was because of the surgery, the anaesthetic and just being exhausted.

I made up my bed on the not-so-comfy pull out chair bed and tried to get some sleep. His Sats did keep dropping but he was bringing them back up pretty well on his own and they were only fleeting. It was worrying though, I did have vision of whats happened before, where the oxygen doesn't work and he would need more intervention and I really didn't want to see him become unwell. But thankfully after a bit of an up and down few hours he seemed to settle a little more around 2am and I  managed to sleep on and off until about 7am when he woke up. He still seemed pretty miserable when he woke up, and still didn't want any milk, but he'd also managed to pull his cannula out of his foot in the night but they had decided to keep it out, which was a good sign I guess. He eventually took some pain killers orally mixed in with water, then seemed to brighten up a little. He sat up in his cot watching Cbeebies whilst doctors did their rounds, he had observations and then eventually got pretty tired again and had a little nap. I think he managed to have some milk in this time too which was a relief. They wanted to see how he was during his nap as to what the plan would be, and we started him off without oxygen but soon after it was clear he needed a little bit, and his breathing was a still a little laboured, but again he settled after a while and wasn't so bad.


After a few hours he woke up and again had more pain killers to perk him up, I took him to the playroom and we even went outside and he had a go on a ride on car and seemed happy to be out of his room. I didn't want to push it though so after about an hour we returned to our room and waited on news. The doctor had said that she wanted him to stay in one more night for observation, which I would've been happy to do, but I also felt like I knew he'd be happier at home. She came again to speak with us and said that really she'd like Rohan to go home on his base level of care, which I totally understand but really that could take days, which in fact it did. He wasn't being offered any more treatment than we could give him at home and I felt confident that he was going in the right direction but all he needed was rest and to be comfortable. Rohan loves being at home and you can tell how much happier he is when he's here. I would never push for us to go home unless I felt 100% sure we could manage him, and if we couldn't then I would always bring him straight back to hospital. I explained this all to the doctor and hesitatingly she agreed. I know that she had Rohan's health at the forefront of her concerns but I also know that the doctors have to do everything by the book and obviously if something were to happen to Rohan then I could turn round and blame them. But I know also that I know my child and in my gut I knew that he needed to be at home to rest properly without the constant disruption that hospital gives, to be able to be cuddled in bed, to have all his comforts and just to rest.

I don't want this to sound like I don't respect the doctors opinion, because I totally do, I'm very aware of the amazing job they do and that of course they are so much more knowledgable than I am. It was very much a decision made between us and I'm very grateful that she was open to listening to my opinion. The Children's Hospital and the NHS have always been amazing to us. Despite little annoyances here and there on the whole I know without it we'd be in a much worse position. The fact that he had this emergency surgery for free, all the before and after care, food, equipment, medicine and the equipment we have at home is all for free. I will never ever take that for granted.

So eventually after getting all our discharge letters we were let out, about 7pm and made our way home, back to our beds.


We spent the next few days, which were thankfully the weekend so Rob was around too, just staying at home and resting. We had to make sure that Rohan stayed away from places where he might catch a cold and he is more vulnerable after this surgery. He was also really not back to himself, still tired and groggy and just needing us to be close and giving lots of cuddles. The nights did get slowly better and after the first two more unsettled night we noticed that his breathing was calmer and his need for oxygen slowly decreased until we realised that we'd not turned it on for two nights in a row. I'm so glad I followed my guy and knew that all he needed was to rest and slowly been weaned off, but rest in the comfort of his own home where we could stay in bed with him and cuddle and be there.

We're on week two now and he seems to be pretty much back to normal thankfully. We're still not pushing things as I'm fully aware that it can take a good few weeks for everything to be normal, but already we've seen some really good results - like a lot less snot! 

Preparing for heart surgery

So tomorrow is the day. I've been meaning to write something before about Rohan's up coming surgery but somehow it's not happened. I'm not sure whether it's just because I've not had time, or that I've not wanted to make time. I've not wanted to write about it because I didn't really want to admit to myself that it's happening. Because like always my general thinking is that if I don't think about it too much then it's not really happening...you can see what a great philosophy that is.

The surgery itself is pretty straightforward, if he ends up having it at all. Last week we took Rohan to hospital for his pre-admission checks. It was a long morning spent doing all sorts of things such as a chest X-ray, ECG, an echo (ultrasound) of his heart, blood tests, observations and talks with the specialists. He had a slightly raised temperature and has been a little snotty again (like always) but we found that he's cutting a tooth a few days before so that could all be related to that. We spoke to the hospital yesterday to check the results of his blood and swab tests to see if he had any viruses or bacterial infections, both of which were clear, so I guess all we can do now is turn up and see what they say on the day. Tomorrow.

Tomorrow, tomorrow tomorrow.


It seems like such a massive marker, his life before having any surgical procedure and what is to come afterwards. We're hoping it makes a difference, we've been told that this sort of thing can really cause a big turn around in many ways (good ways) so we're hoping for that. But again this is all just speculation, as when we spoke with the cardiac consultant he said that it's not even 100% that they will do the procedure they have set out to do. That is to close his PDA (the duct that he doesn't need) by keyhole surgery. Once he's gone under general anaesthetic they will then do a number of tests including dye to check blood flow and to check the pressures of the heart. They'll then measure the size of the duct and decide whether the device they can use to close it will fit, and actually whether this is the best thing for his heart. They may decide that by closing it, it will put too much pressure on the heart, or that his arch needs looking at too. There are so many maybe's. If it's all straight forward and he has the device to close it the whole thing should be over in a few hours, and he'll be sent to recovery.

So we're just in limbo, unsure of what's ahead, unsure of whether it's going to happen, of what's going to happen and what the results will be. Then there's risk, not much as it's simple surgery, but there's always risk. There's heightened risk for Rohan, for the anaesthetic, for the procedure, for everything because of everything else he's got going on. But if it can all work out to help him and make things better. He's been under general before and was fine, and the risk is still a small one, but it's scary all the same. To sign a consent form to say you know the risks, but are ok for them to do it anyway, his life in their hands. It's scary. I don't want that decision or power.


I don't know what I will be like when he's away from us, I think I'll need distracting. We'll have to say goodbye, hopeful that it will be only a few hours before we see him again but all the while the unspoken fears and thoughts will be there. What ifs and hope nots. I can't even write it here. I don't want to tempt anything. So he will be fine.

That's if it happen's at all. I feel thankful that we've had all this time before anything surgical, considering we thought he would have to have something in the first week of his life. But now we're here, with everything crossed that it all goes ok and we'll have our sweet baby boy back in our arms not long after.


Wish us luck.

Preparing for heart surgery

So tomorrow is the day. I've been meaning to write something before about Rohan's up coming surgery but somehow it's not happened. I'm not sure whether it's just because I've not had time, or that I've not wanted to make time. I've not wanted to write about it because I didn't really want to admit to myself that it's happening. Because like always my general thinking is that if I don't think about it too much then it's not really happening...you can see what a great philosophy that is.

The surgery itself is pretty straightforward, if he ends up having it at all. Last week we took Rohan to hospital for his pre-admission checks. It was a long morning spent doing all sorts of things such as a chest X-ray, ECG, an echo (ultrasound) of his heart, blood tests, observations and talks with the specialists. He had a slightly raised temperature and has been a little snotty again (like always) but we found that he's cutting a tooth a few days before so that could all be related to that. We spoke to the hospital yesterday to check the results of his blood and swab tests to see if he had any viruses or bacterial infections, both of which were clear, so I guess all we can do now is turn up and see what they say on the day. Tomorrow.

Tomorrow, tomorrow tomorrow.


It seems like such a massive marker, his life before having any surgical procedure and what is to come afterwards. We're hoping it makes a difference, we've been told that this sort of thing can really cause a big turn around in many ways (good ways) so we're hoping for that. But again this is all just speculation, as when we spoke with the cardiac consultant he said that it's not even 100% that they will do the procedure they have set out to do. That is to close his PDA (the duct that he doesn't need) by keyhole surgery. Once he's gone under general anaesthetic they will then do a number of tests including dye to check blood flow and to check the pressures of the heart. They'll then measure the size of the duct and decide whether the device they can use to close it will fit, and actually whether this is the best thing for his heart. They may decide that by closing it, it will put too much pressure on the heart, or that his arch needs looking at too. There are so many maybe's. If it's all straight forward and he has the device to close it the whole thing should be over in a few hours, and he'll be sent to recovery.

So we're just in limbo, unsure of what's ahead, unsure of whether it's going to happen, of what's going to happen and what the results will be. Then there's risk, not much as it's simple surgery, but there's always risk. There's heightened risk for Rohan, for the anaesthetic, for the procedure, for everything because of everything else he's got going on. But if it can all work out to help him and make things better. He's been under general before and was fine, and the risk is still a small one, but it's scary all the same. To sign a consent form to say you know the risks, but are ok for them to do it anyway, his life in their hands. It's scary. I don't want that decision or power.


I don't know what I will be like when he's away from us, I think I'll need distracting. We'll have to say goodbye, hopeful that it will be only a few hours before we see him again but all the while the unspoken fears and thoughts will be there. What ifs and hope nots. I can't even write it here. I don't want to tempt anything. So he will be fine.

That's if it happen's at all. I feel thankful that we've had all this time before anything surgical, considering we thought he would have to have something in the first week of his life. But now we're here, with everything crossed that it all goes ok and we'll have our sweet baby boy back in our arms not long after.


Wish us luck.

A Rohan update: Part two

Once we did get home he did really well for a good few days and seemed much like his normal bright self. I'd forgotten how much he giggled and smiled when he's feeling well and it made me realise that he'd been pretty poorly leading up to this point. But by the following week he seemed to be struggling once again. We had our cardiac clinic on the Tuesday and after they had finished all of his checks, ecg and echo we mentioned to his cardiac consultant that we were worried once again. She suggested that we get him chest X-rayed, then take him round to A&E to be looked at. We did all this, and whilst his X-ray looked clear and ok, they wanted to keep him in for observation. So we waited to be moved to the small ward off of A&E, and I stayed the night. It was a horrible unsettled night and Rohan slept so badly, as did I.

Regarding the cardiac check up, everything still looked the same as it did, and his breathing problems aren't really attributed to his heart. They discussed that they do want to surgery on his PDA, which is the duct that all babies are born with, but which closes shortly after birth. Rohan's is still there and open and quite large so they want to close that. They think that it will only have to be keyhole surgery which for us is a relief. Then I guess they'll just closely monitor his aorta after that. His consultant mentioned that his duct still being open probably isn't helping his breathing trouble as it's making his lungs a bit wetter than normal with too much blood being directed there. So hopefully the surgery will help too.


When were told after our initial night in that Rohan was going to be admitted we asked what their plan was and mentioned that he responded really well to CPAP before and this is what we thought he needed. They we hesitant to do this as that would mean him being admitted to PICU, which they didn't think was needed. Again it was blocked airways due to his cold, and he was kept on oxygen like at home. He did ok but just kept on having really unsettled nights. We were in a bay with up to three other children, and it's not quiet to say the least. I felt so conscious and guilty every time Rohan woke up crying, which he did often as he was finding it hard to breathe. He was so uncomfortable and because his sats dipped every time he went into a deep sleep we found ourselves changing his position, or stirring him out of it, so I don't think he ever had a full, good nights sleep. We stayed in that bay for a week, and were almost discharged on the Monday as his oxygen requirement overnight was getting less and they seemed happy with him. But then something happened, I'm not sure how but a combination of things like him having a stomach upset and resulting vey sore bottom and so many nights of broken sleep that that night he had the worst night. He was waking every half an hour, I didn't get into bed until 3am. After that night I realised that he needed something more than just oxygen as he was really struggling. Rob came into hospital to swap over with me so I could go home and sleep, but I made sure that he was going to start pushing for them to do something more for him.


I hate that we had got to this point, where we had to get cross and really push for what we wanted. I appreciate everything the NHS has done for us and don't ever want to seem ungrateful, but sometimes as a parent you know what your child needs. Obviously we're not medically trained and I have so much respect for the jobs that all the staff do, but we couldn't stand back and have another night like the previous one and watch him suffering without a plan to help more. I returned home and Rob took over to what was another eventful night. After us asking for more they decided to finally try and few different things, first off the optiflow machine, which didn't help, then an NPA tube to hold his airways open, which didn't go in right and just caused him to gag all the time, so out it came. His nose was then all scratched up from this and he was just generally in a bad way. It seemed as though no-one really knew what step to take next, but he was eventually moved to the HDU part of the unit (and his own room) as they were going to attempt the NPA again in the morning. But somehow during that time they finally realised that yes, he needed CPAP, and a move down to PICU was imminent.

When I heard this news I wasn't worried, I was thankful that he was finally going to getting what he needed. Obviously he was in a bad way, but in my mind he was only going to be on PICU because that was the only place he could have CPAP used to begin with. But it was scary going back there. Because we couldn't stay on the ward both Rob and I returned home that evening, for the first time in over a week, but it brought back so many of those memories of leaving him there when he was so small, when we had no idea how long he was going to be in for or what was happening. But this time was different at least, we knew he responded well to CPAP and that when he was awake he was well. When we arrived after he'd been moved they had put down an ng tube, as well as an IV cannula in his hand. This I think was the most shocking, as it had been so long since he'd needed something like this. We were still unsure as to why he actually needed the ng, because he was still able to take food orally, but I think on PICU its more or less standard practice to put them in, just in case they need direct access etc. Suddenly he wasn't just Rohan having a little trouble breathing when he was asleep, he was in full on intensive care, with wires, tubes and machines. But I felt relieved. Relieved that we had finally been listened too, relieved that he finally looked so much more settled when he was asleep, and relieved too I guess that we could get a few nights of good rest. Leaving him was obviously so hard, but we were both so exhausted.


I've lost count of how long he was on PICU for, maybe three days or so, but as it was the weekend things all went quiet and we were left to more or less just get on with his care as usual, all the while just waiting for the new week to start and work towards getting off the ward. We again insisted that if he was showing signs of wanting milk orally that he be allowed to, as we'd worked so hard to get him taking his milk that way that we didn't want to relapse. And he did show that he wanted it and soon we were making our way back to his normal feeding schedule. We sat in our bubble of our routine and playing when Rohan was awake, he charmed the nurses with his smile and was generally pretty happy and content like usual. It was a relief to have him back but I felt strange being on intensive care with a baby who didn't look like he should be there. So many things were going on around us, people's lives going through unthinkable things, seeing families day in day out sitting with their sick children. It's a world I wish I'd never been invited into, to see behind those doors where things are so black and white but at the same time not straight forward at all. Where lives are changed and there is sadness as well as victories.

Eventually we were discharged from PICU and moved back up to HDU, with his CPAP. We were waiting on one lady to return to work so she could train us on the machine which we would take home with us. The weekend passed without much drama, just more waiting. You get used to a certain amount of just waiting around for one thing or another in hospital. We've worked out that really you need to add a few hours or a day or two on to most onto any timeframe that they give you. I feel like I've been a bit down on the care and the NHS in this post, so I just wanted to stress that however frustrating it can be and how long sometimes we have to wait, we're just so thankful for all that the hospital, doctors, nurses and everyone has done for us and continue to do. It's hard to imagine what our lives would be like without every single one of the services that we get, the equipment and medicine that we receive, all for free. Yes it can be ever so slightly frustrating sometimes, but when you realise how much they are doing, how over stretched the services and staff are then suddenly it doesn't seem too bad.


So after our weekend we waited a few more days and eventually got signed off on the equipment, and all of a sudden we were free to go. It felt a little surreal to just be able to walk out and be free. And there we are, our second hospital stay. It was the first of March, and the beginning of a month of recovering, for me both physically and mentally. I really don't think I processed any of what had been going on, just being in the mindset of just keep going and dealing with each day as it came. We were functioning on very little sleep, stress of seeing our boy in distress and juggling Theo and normal life. It took me a lot longer than I thought it would be realise what we'd just been through and the affect it had on us all. Rohan was doing a lot better, but we were still struggling with his sickness and a few weeks ago it all got too much. I think it all caught up on me, and after a few nights of bad sleep, exhaustion kicked in and I admitted defeat. It's scary when you don't really feel in control of your emotions or able to be there properly for your children's needs, but thankfully we were once again listened too and with the help of a lovely GP we were set up with new medication. I think I felt I just needed someone to listen. So that's where we are, but now we're facing our next challenge that is cardiac surgery next week, but I think I'd better write another post about that soon...

A Rohan update: Part two

Once we did get home he did really well for a good few days and seemed much like his normal bright self. I'd forgotten how much he giggled and smiled when he's feeling well and it made me realise that he'd been pretty poorly leading up to this point. But by the following week he seemed to be struggling once again. We had our cardiac clinic on the Tuesday and after they had finished all of his checks, ecg and echo we mentioned to his cardiac consultant that we were worried once again. She suggested that we get him chest X-rayed, then take him round to A&E to be looked at. We did all this, and whilst his X-ray looked clear and ok, they wanted to keep him in for observation. So we waited to be moved to the small ward off of A&E, and I stayed the night. It was a horrible unsettled night and Rohan slept so badly, as did I.

Regarding the cardiac check up, everything still looked the same as it did, and his breathing problems aren't really attributed to his heart. They discussed that they do want to surgery on his PDA, which is the duct that all babies are born with, but which closes shortly after birth. Rohan's is still there and open and quite large so they want to close that. They think that it will only have to be keyhole surgery which for us is a relief. Then I guess they'll just closely monitor his aorta after that. His consultant mentioned that his duct still being open probably isn't helping his breathing trouble as it's making his lungs a bit wetter than normal with too much blood being directed there. So hopefully the surgery will help too.


When were told after our initial night in that Rohan was going to be admitted we asked what their plan was and mentioned that he responded really well to CPAP before and this is what we thought he needed. They we hesitant to do this as that would mean him being admitted to PICU, which they didn't think was needed. Again it was blocked airways due to his cold, and he was kept on oxygen like at home. He did ok but just kept on having really unsettled nights. We were in a bay with up to three other children, and it's not quiet to say the least. I felt so conscious and guilty every time Rohan woke up crying, which he did often as he was finding it hard to breathe. He was so uncomfortable and because his sats dipped every time he went into a deep sleep we found ourselves changing his position, or stirring him out of it, so I don't think he ever had a full, good nights sleep. We stayed in that bay for a week, and were almost discharged on the Monday as his oxygen requirement overnight was getting less and they seemed happy with him. But then something happened, I'm not sure how but a combination of things like him having a stomach upset and resulting vey sore bottom and so many nights of broken sleep that that night he had the worst night. He was waking every half an hour, I didn't get into bed until 3am. After that night I realised that he needed something more than just oxygen as he was really struggling. Rob came into hospital to swap over with me so I could go home and sleep, but I made sure that he was going to start pushing for them to do something more for him.


I hate that we had got to this point, where we had to get cross and really push for what we wanted. I appreciate everything the NHS has done for us and don't ever want to seem ungrateful, but sometimes as a parent you know what your child needs. Obviously we're not medically trained and I have so much respect for the jobs that all the staff do, but we couldn't stand back and have another night like the previous one and watch him suffering without a plan to help more. I returned home and Rob took over to what was another eventful night. After us asking for more they decided to finally try and few different things, first off the optiflow machine, which didn't help, then an NPA tube to hold his airways open, which didn't go in right and just caused him to gag all the time, so out it came. His nose was then all scratched up from this and he was just generally in a bad way. It seemed as though no-one really knew what step to take next, but he was eventually moved to the HDU part of the unit (and his own room) as they were going to attempt the NPA again in the morning. But somehow during that time they finally realised that yes, he needed CPAP, and a move down to PICU was imminent.

When I heard this news I wasn't worried, I was thankful that he was finally going to getting what he needed. Obviously he was in a bad way, but in my mind he was only going to be on PICU because that was the only place he could have CPAP used to begin with. But it was scary going back there. Because we couldn't stay on the ward both Rob and I returned home that evening, for the first time in over a week, but it brought back so many of those memories of leaving him there when he was so small, when we had no idea how long he was going to be in for or what was happening. But this time was different at least, we knew he responded well to CPAP and that when he was awake he was well. When we arrived after he'd been moved they had put down an ng tube, as well as an IV cannula in his hand. This I think was the most shocking, as it had been so long since he'd needed something like this. We were still unsure as to why he actually needed the ng, because he was still able to take food orally, but I think on PICU its more or less standard practice to put them in, just in case they need direct access etc. Suddenly he wasn't just Rohan having a little trouble breathing when he was asleep, he was in full on intensive care, with wires, tubes and machines. But I felt relieved. Relieved that we had finally been listened too, relieved that he finally looked so much more settled when he was asleep, and relieved too I guess that we could get a few nights of good rest. Leaving him was obviously so hard, but we were both so exhausted.


I've lost count of how long he was on PICU for, maybe three days or so, but as it was the weekend things all went quiet and we were left to more or less just get on with his care as usual, all the while just waiting for the new week to start and work towards getting off the ward. We again insisted that if he was showing signs of wanting milk orally that he be allowed to, as we'd worked so hard to get him taking his milk that way that we didn't want to relapse. And he did show that he wanted it and soon we were making our way back to his normal feeding schedule. We sat in our bubble of our routine and playing when Rohan was awake, he charmed the nurses with his smile and was generally pretty happy and content like usual. It was a relief to have him back but I felt strange being on intensive care with a baby who didn't look like he should be there. So many things were going on around us, people's lives going through unthinkable things, seeing families day in day out sitting with their sick children. It's a world I wish I'd never been invited into, to see behind those doors where things are so black and white but at the same time not straight forward at all. Where lives are changed and there is sadness as well as victories.

Eventually we were discharged from PICU and moved back up to HDU, with his CPAP. We were waiting on one lady to return to work so she could train us on the machine which we would take home with us. The weekend passed without much drama, just more waiting. You get used to a certain amount of just waiting around for one thing or another in hospital. We've worked out that really you need to add a few hours or a day or two on to most onto any timeframe that they give you. I feel like I've been a bit down on the care and the NHS in this post, so I just wanted to stress that however frustrating it can be and how long sometimes we have to wait, we're just so thankful for all that the hospital, doctors, nurses and everyone has done for us and continue to do. It's hard to imagine what our lives would be like without every single one of the services that we get, the equipment and medicine that we receive, all for free. Yes it can be ever so slightly frustrating sometimes, but when you realise how much they are doing, how over stretched the services and staff are then suddenly it doesn't seem too bad.


So after our weekend we waited a few more days and eventually got signed off on the equipment, and all of a sudden we were free to go. It felt a little surreal to just be able to walk out and be free. And there we are, our second hospital stay. It was the first of March, and the beginning of a month of recovering, for me both physically and mentally. I really don't think I processed any of what had been going on, just being in the mindset of just keep going and dealing with each day as it came. We were functioning on very little sleep, stress of seeing our boy in distress and juggling Theo and normal life. It took me a lot longer than I thought it would be realise what we'd just been through and the affect it had on us all. Rohan was doing a lot better, but we were still struggling with his sickness and a few weeks ago it all got too much. I think it all caught up on me, and after a few nights of bad sleep, exhaustion kicked in and I admitted defeat. It's scary when you don't really feel in control of your emotions or able to be there properly for your children's needs, but thankfully we were once again listened too and with the help of a lovely GP we were set up with new medication. I think I felt I just needed someone to listen. So that's where we are, but now we're facing our next challenge that is cardiac surgery next week, but I think I'd better write another post about that soon...

A Rohan update: Part One

So it's been a long while, and I guess a lot has happened. I feel like I really want to keep up with the blog but it's just been one thing too many recently and I've found that writing out short updates or thoughts on Instagram have kept my feelings level, but there gets a point when I just need to write it all out.

These past few months have been tough, I was, as always hoping that this new year would be kinder to us, but alas I don't ever think wishful thinking is going to be the answer. In a way I've come to realise I need to just stop torturing myself when thinking that things will be easier, or if our lives were different and comparing my situation to others. I just need to accept the now and that this is the life we are living and I don't really have much control over the bigger things that happen, I just need to make the small changes to make the everyday a little easier. Without sounding like a teenager there is something interesting to remember about trying to live the life you've been given (yolo and all that) because really what else can we do? I'm not going to magically change Rohan's condition, things won't ever just change overnight to how we think they should be and I'm sad to admit that I think things will always be on the harder side for us. Maybe they won't be hard all the time, but for some reason this life has chosen us so I might as well try and make the most of it.


Anyway, that out of the way I guess I should try and record a little of what has been happening over the past few weeks, to try and start processing it all. I don't really feel like I have even began to, sometimes you feel like you're coping and it's all just carrying on like normal, but then something stops you in your tracks and you realise that actually the carrying on part is just a way of staving off really letting yourself feel the weight of what's been happening. But how do you begin that process? I wrote a little about how on Friday I got a sudden urge to have a big cry, to let the events of the last few weeks off my chest a little, where the tension has been held tight for fear I guess of letting it go and it all coming apart. The cry still hasn't happened, the tension is still there but with talking and sharing my feelings it's beginning to ease a little.

So, to carry on with the story and update, Rohan has spent about two and a half weeks in hospital over the last month or so. Just after his birthday in the middle of January I took him to the doctors as he was still not getting over a cold and coughing quite a lot. His weight was dropping due to the coughing and subsequent vomiting that comes with it. He was prescribed some antibiotics and we hoped he get better. He then perhaps caught another cold on top of that, and when we had a our Respiratory review a week or so later he was still suffering. When he was weighed we were so heartbroken to see that he had dropped quite a significant amount of weight and looked visibly skinny. We were given some different antibiotics and what was thought was just blocked upper airways from all the snot. We did mention to our consultant that we were a little worried as it seemed as though his oxygen saturations were dropping lower than usual overnight, but not much more was said on it and we were hoping the antibiotics would help shift things.

A few days later we travelled down to Devon to stay with Rob's grandparents for a little break, but by Saturday it became pretty clear that he wasn't very well. We tried our hardest to carry on like normal, but once we'd put him to bed, he just kept on dropping and staying low with his sats. He looked like he was working pretty hard to breathe too, so I decided enough was enough and he needed to go to A&E. It's scary admitting that you can't give the help your child needs, that you are not enough and knowing that he needs medical help. I was scared about going back to hospital, and I think the trauma and anxiety from when Rohan was first born and our long hospital stay was returning. But I knew we had done the right thing.

We were seen straight away and taken to resus where he had an oxygen mask and seemed to settle a little. He had a high temperature and was still working hard to breathe though. It's difficult going to a new hospital where they don't know him and having to explain his condition to various people. But the team were great and we were eventually moved to the children's ward to stay overnight for observation. By the time we got there it was getting into the early hours of the morning and we were all exhausted. Rohan just wanted to sleep and so did we. We decided that as only one of us could stay that I should drive back to Teignmouth and sleep whilst Rob stayed. The plan was to put him on a machine to help with his breathing, they also tried to put in an IV cannula but couldn't get access at all, so he had to have an IO needle which went into his bone marrow in his leg via a needle being screwed in. I'm so glad I wasn't there to see this happening and I'm not sure I could've handled it. I think it quickly became clear that he needed something else to help him breathe and he was moved to the HDU unit to have CPAP. When I first heard this it filled me with fear, because this is the machine that he was very first put on the night after he was born and remained on for a good week or so in intensive care. It made me worry that it was all happening all over again.

The next morning I returned and was so happy to see that he looked so much more settled. He'd had sleep, fluids and antibiotics and it all seemed to be helping. I think that first day he slept almost constantly. The ward was very quiet and we had lovely nurses and doctors to ourselves, as well as a room so we could both stay. Rohan did really well and recovered quickly and by the next day was off the cpap and didn't require any oxygen. He eagerly wanted milk and was showing signs of his normal happy self once more. It was such a relief. I think he stayed one more night for observation and then he was discharged. It helped ease my anxiety a lot that he could just have such a short stay and quick recovery and then be deemed well enough to go home. We thought we were over the worst of it and that hopefully now we would just take it easy at home.


I had no idea that once we got home we'd be back a week later. I can't believe that we managed a whole year without going in again after Rohan was born, so it all felt surreal but familiar to be there again. Once again we felt split between our two children and of course the anxiety and trauma surrounding Rohan's birth and hospital stay were there just below the surface. But you just have to carry on, you have to make arrangements for childcare and know that you'll miss bedtimes and it breaks your heart to not be all together, but you just do it anyway because what other choice do you have? I feel worried that this may be our future now, trying to avoid hospital stays during the winter and having to go through this all over again. I feel bad for Theo that he has to endure this, that he has no choice and however well he seems to understand it and handle it, I know it's having an effect and coming out in other ways. He still needs us, he misses his brother and I'm sad that this may be a reoccurring thing over the next few years. I'll try not to think about it, but it's always there at the back of my mind.

Part two of the update coming shortly...

A Rohan update: Part One

So it's been a long while, and I guess a lot has happened. I feel like I really want to keep up with the blog but it's just been one thing too many recently and I've found that writing out short updates or thoughts on Instagram have kept my feelings level, but there gets a point when I just need to write it all out.

These past few months have been tough, I was, as always hoping that this new year would be kinder to us, but alas I don't ever think wishful thinking is going to be the answer. In a way I've come to realise I need to just stop torturing myself when thinking that things will be easier, or if our lives were different and comparing my situation to others. I just need to accept the now and that this is the life we are living and I don't really have much control over the bigger things that happen, I just need to make the small changes to make the everyday a little easier. Without sounding like a teenager there is something interesting to remember about trying to live the life you've been given (yolo and all that) because really what else can we do? I'm not going to magically change Rohan's condition, things won't ever just change overnight to how we think they should be and I'm sad to admit that I think things will always be on the harder side for us. Maybe they won't be hard all the time, but for some reason this life has chosen us so I might as well try and make the most of it.


Anyway, that out of the way I guess I should try and record a little of what has been happening over the past few weeks, to try and start processing it all. I don't really feel like I have even began to, sometimes you feel like you're coping and it's all just carrying on like normal, but then something stops you in your tracks and you realise that actually the carrying on part is just a way of staving off really letting yourself feel the weight of what's been happening. But how do you begin that process? I wrote a little about how on Friday I got a sudden urge to have a big cry, to let the events of the last few weeks off my chest a little, where the tension has been held tight for fear I guess of letting it go and it all coming apart. The cry still hasn't happened, the tension is still there but with talking and sharing my feelings it's beginning to ease a little.

So, to carry on with the story and update, Rohan has spent about two and a half weeks in hospital over the last month or so. Just after his birthday in the middle of January I took him to the doctors as he was still not getting over a cold and coughing quite a lot. His weight was dropping due to the coughing and subsequent vomiting that comes with it. He was prescribed some antibiotics and we hoped he get better. He then perhaps caught another cold on top of that, and when we had a our Respiratory review a week or so later he was still suffering. When he was weighed we were so heartbroken to see that he had dropped quite a significant amount of weight and looked visibly skinny. We were given some different antibiotics and what was thought was just blocked upper airways from all the snot. We did mention to our consultant that we were a little worried as it seemed as though his oxygen saturations were dropping lower than usual overnight, but not much more was said on it and we were hoping the antibiotics would help shift things.

A few days later we travelled down to Devon to stay with Rob's grandparents for a little break, but by Saturday it became pretty clear that he wasn't very well. We tried our hardest to carry on like normal, but once we'd put him to bed, he just kept on dropping and staying low with his sats. He looked like he was working pretty hard to breathe too, so I decided enough was enough and he needed to go to A&E. It's scary admitting that you can't give the help your child needs, that you are not enough and knowing that he needs medical help. I was scared about going back to hospital, and I think the trauma and anxiety from when Rohan was first born and our long hospital stay was returning. But I knew we had done the right thing.

We were seen straight away and taken to resus where he had an oxygen mask and seemed to settle a little. He had a high temperature and was still working hard to breathe though. It's difficult going to a new hospital where they don't know him and having to explain his condition to various people. But the team were great and we were eventually moved to the children's ward to stay overnight for observation. By the time we got there it was getting into the early hours of the morning and we were all exhausted. Rohan just wanted to sleep and so did we. We decided that as only one of us could stay that I should drive back to Teignmouth and sleep whilst Rob stayed. The plan was to put him on a machine to help with his breathing, they also tried to put in an IV cannula but couldn't get access at all, so he had to have an IO needle which went into his bone marrow in his leg via a needle being screwed in. I'm so glad I wasn't there to see this happening and I'm not sure I could've handled it. I think it quickly became clear that he needed something else to help him breathe and he was moved to the HDU unit to have CPAP. When I first heard this it filled me with fear, because this is the machine that he was very first put on the night after he was born and remained on for a good week or so in intensive care. It made me worry that it was all happening all over again.

The next morning I returned and was so happy to see that he looked so much more settled. He'd had sleep, fluids and antibiotics and it all seemed to be helping. I think that first day he slept almost constantly. The ward was very quiet and we had lovely nurses and doctors to ourselves, as well as a room so we could both stay. Rohan did really well and recovered quickly and by the next day was off the cpap and didn't require any oxygen. He eagerly wanted milk and was showing signs of his normal happy self once more. It was such a relief. I think he stayed one more night for observation and then he was discharged. It helped ease my anxiety a lot that he could just have such a short stay and quick recovery and then be deemed well enough to go home. We thought we were over the worst of it and that hopefully now we would just take it easy at home.


I had no idea that once we got home we'd be back a week later. I can't believe that we managed a whole year without going in again after Rohan was born, so it all felt surreal but familiar to be there again. Once again we felt split between our two children and of course the anxiety and trauma surrounding Rohan's birth and hospital stay were there just below the surface. But you just have to carry on, you have to make arrangements for childcare and know that you'll miss bedtimes and it breaks your heart to not be all together, but you just do it anyway because what other choice do you have? I feel worried that this may be our future now, trying to avoid hospital stays during the winter and having to go through this all over again. I feel bad for Theo that he has to endure this, that he has no choice and however well he seems to understand it and handle it, I know it's having an effect and coming out in other ways. He still needs us, he misses his brother and I'm sad that this may be a reoccurring thing over the next few years. I'll try not to think about it, but it's always there at the back of my mind.

Part two of the update coming shortly...

Rohan's weaning journey


So I've been meaning to write about Rohan's weaning journey for a while now, but you know, time slips away and before you know it, its two months later...

I guess I should start with the Nasogastric (NG) tube, because that was such a major part of Rohan's care since he left hospital, and for us such a significant journey. He had a feeding tube in since the day he was born, even though he wasn't allowed to have any food actually go into his stomach. He had a tube in his mouth which then eventually got moved to his nose and there it stayed. He eventually was allowed to have small amounts of milk and we progressed from there. We tried to breastfeed, offering it to him before he was due his feeds, which were regulated and always at set times. But because he'd spent a good few weeks not using his suck or having anything by mouth I think he just didn't know what to do, or wasn't strong enough to do it on his own. So we eventually thought we should try and offer him the bottle too. He was having breastmilk still that I was expressing around the clock. The bottle was a little more successful and eventually I stopped trying to offer him the breast as much because getting him to take something orally, became the most important thing. We were working hard to not need the NG tube at all.




I then had to come to terms with the fact that Rohan wouldn't be breastfed. He was having breastmilk, just not directly from me. It was a tough realisation to come to terms with, I'd been looking forward to breastfeeding another baby, as I so enjoyed it the first time around. It was easy and I enjoyed the bond it gave me with Theo and he did well on it. But I know that Theo was entirely different and our situation was a little more straightforward, I never realised how fortunate we were for it all to go so smoothly. It was a definite grieving process, on top of the process I was already going through as we came to terms with the rest of Rohan's condition. It was yet another piece of our imagined future slipping away.


When we eventually were discharged from hospital we entered into a world of combined bottle feeding and NG feeds. Rohan was still doing well, and in fact getting better at taking some of his feeds orally, and I continued to express for a good month or two when we got home. For us even getting used to bottle feeding was a whole new world, let alone all that comes with having to tube feed. We had so much equipment that exploded into our house; boxes of syringes, tubes, ph testing strips, sterilising bags, a breast pump and all the attachments and the milk itself. With a freezer slowly being taken over with frozen milk that would soon become the last remainders of my milk as expressing became too much and my supply dwindled. I had to stop, it was a hard decision, but it was taking too much energy, taking too much time out of our day and just became a burden to us all. I fed Theo for 19 months, and Rohan had four. It didn't seem fair, but then none of this situation was fair.
So we stopped and instead he was fed on high calorie formula milk.


We had to navigate the world of feeding out and about, to get over the fear of people looking at my tiny baby with tubes and plasters stuck all over his face. I wasn't a new mum, I'd done the whole baby thing before, but this all felt so alien. I was out of my depth and it took a lot of my nerve to feel confident enough to feed him in public. I knew the agonising that you go through when attempting your first public breastfeed, but it was nothing compared to how this felt. I longed for it to be that easy (even though I know breastfeeding can be very difficult and we still have a long way to go towards public attitudes towards it too) but here we were, sometimes in nursing rooms, sometimes in cafes doing our whole tube feeding routine and trying to make sure Rohan didn't bring up whole feeds. Looking back now it was a tricky time, and I can't quite believe we got through it. I know in a way we're lucky that Rohan has actually managed to wean himself off the tube, where many parents with children with additional needs face long term use of them or other feeding methods.


Rohan has suffered with reflux, or poor gag reflex since he was tiny, meaning his weight has always been a constant issue for us. We saw his own dietician weekly or fortnightly to keep a very close eye on his progress, and throughout all of this journey I have to say that this has been one of the most stressful things. I dreaded those weigh ins, to see if he'd lost any weight and all our hard work would have been for nothing. My heart would sink to see him fall off yet another centile line and his little chubby body becoming less so. But we carried on, and despite the weight loss he continued to do really well on taking from the bottle, he just needed to be able to keep it down. We switched bottles too on a recommendation (thank you!!) and suddenly we turned a corner. We realised we were no longer using the tube to feed in the day, and whilst Rohan was still taking little but often, he was indeed taking pretty much all of his feeds orally. By this point I think it was on the advice of our speech and language therapist and dietician that we could try introducing solids.

This again was a whole new world to us. Rohan was no way strong or coordinated enough to try finger foods so we had to go down the puree route, something which we didn't do with Theo. We followed baby led weaning with Theo, and though whilst it was slower progress to him eating proper meals, he did really well with it and I don't think he ever had any purees and it just worked for us. So again it was time to learn something completely new.


We bought a few pouches of puree and some fortified porridge and experimented with those. We still had to keep up with his milk allowance (and actually still do) but just try and offer him extra food in between. I was so nervous the first time we tried it, fearing he'd just not know what to do and would end up vomitting it all up, but he didn't. He took it really well and actually seemed to enjoy it. I was relieved. Something finally going well.

I was then delighted when Picollo offered us to try some of their brand new range of purees, with some really great flavours to try. I think being able to have such a great range of flavours available and to try has been such a benefit for us, especially knowing that the ingredients are organic and full of goodness. I love that the purees have mediterranean influences in their recipes and they have some really exciting flavour combinations. They've been such a great starting point for us and I feel like Rohan's been introduced to such a wide range of tastes already.

So that's about where we are. We're working up to having three proper meals a day, which is maybe slow progress but I think that's just how it's going to be. But I'm just so happy that Rohan has taken to eating and it doesn't seem to cause any problems. Last week I even tried him with a little soft finger food and he managed to hold it and guide it to his mouth really well so that's such an encouraging start. We also recieved some different purees from Babease with some adventurous flavours as Rohan gets older and we move onto grains and more savoury flavours and textures which have gone down a treat too. I love knowing that we're feeding Rohan great ingredients and exploring lots of flavours. 

Rohan's weaning journey


So I've been meaning to write about Rohan's weaning journey for a while now, but you know, time slips away and before you know it, its two months later...

I guess I should start with the Nasogastric (NG) tube, because that was such a major part of Rohan's care since he left hospital, and for us such a significant journey. He had a feeding tube in since the day he was born, even though he wasn't allowed to have any food actually go into his stomach. He had a tube in his mouth which then eventually got moved to his nose and there it stayed. He eventually was allowed to have small amounts of milk and we progressed from there. We tried to breastfeed, offering it to him before he was due his feeds, which were regulated and always at set times. But because he'd spent a good few weeks not using his suck or having anything by mouth I think he just didn't know what to do, or wasn't strong enough to do it on his own. So we eventually thought we should try and offer him the bottle too. He was having breastmilk still that I was expressing around the clock. The bottle was a little more successful and eventually I stopped trying to offer him the breast as much because getting him to take something orally, became the most important thing. We were working hard to not need the NG tube at all.




I then had to come to terms with the fact that Rohan wouldn't be breastfed. He was having breastmilk, just not directly from me. It was a tough realisation to come to terms with, I'd been looking forward to breastfeeding another baby, as I so enjoyed it the first time around. It was easy and I enjoyed the bond it gave me with Theo and he did well on it. But I know that Theo was entirely different and our situation was a little more straightforward, I never realised how fortunate we were for it all to go so smoothly. It was a definite grieving process, on top of the process I was already going through as we came to terms with the rest of Rohan's condition. It was yet another piece of our imagined future slipping away.


When we eventually were discharged from hospital we entered into a world of combined bottle feeding and NG feeds. Rohan was still doing well, and in fact getting better at taking some of his feeds orally, and I continued to express for a good month or two when we got home. For us even getting used to bottle feeding was a whole new world, let alone all that comes with having to tube feed. We had so much equipment that exploded into our house; boxes of syringes, tubes, ph testing strips, sterilising bags, a breast pump and all the attachments and the milk itself. With a freezer slowly being taken over with frozen milk that would soon become the last remainders of my milk as expressing became too much and my supply dwindled. I had to stop, it was a hard decision, but it was taking too much energy, taking too much time out of our day and just became a burden to us all. I fed Theo for 19 months, and Rohan had four. It didn't seem fair, but then none of this situation was fair.
So we stopped and instead he was fed on high calorie formula milk.


We had to navigate the world of feeding out and about, to get over the fear of people looking at my tiny baby with tubes and plasters stuck all over his face. I wasn't a new mum, I'd done the whole baby thing before, but this all felt so alien. I was out of my depth and it took a lot of my nerve to feel confident enough to feed him in public. I knew the agonising that you go through when attempting your first public breastfeed, but it was nothing compared to how this felt. I longed for it to be that easy (even though I know breastfeeding can be very difficult and we still have a long way to go towards public attitudes towards it too) but here we were, sometimes in nursing rooms, sometimes in cafes doing our whole tube feeding routine and trying to make sure Rohan didn't bring up whole feeds. Looking back now it was a tricky time, and I can't quite believe we got through it. I know in a way we're lucky that Rohan has actually managed to wean himself off the tube, where many parents with children with additional needs face long term use of them or other feeding methods.


Rohan has suffered with reflux, or poor gag reflex since he was tiny, meaning his weight has always been a constant issue for us. We saw his own dietician weekly or fortnightly to keep a very close eye on his progress, and throughout all of this journey I have to say that this has been one of the most stressful things. I dreaded those weigh ins, to see if he'd lost any weight and all our hard work would have been for nothing. My heart would sink to see him fall off yet another centile line and his little chubby body becoming less so. But we carried on, and despite the weight loss he continued to do really well on taking from the bottle, he just needed to be able to keep it down. We switched bottles too on a recommendation (thank you!!) and suddenly we turned a corner. We realised we were no longer using the tube to feed in the day, and whilst Rohan was still taking little but often, he was indeed taking pretty much all of his feeds orally. By this point I think it was on the advice of our speech and language therapist and dietician that we could try introducing solids.

This again was a whole new world to us. Rohan was no way strong or coordinated enough to try finger foods so we had to go down the puree route, something which we didn't do with Theo. We followed baby led weaning with Theo, and though whilst it was slower progress to him eating proper meals, he did really well with it and I don't think he ever had any purees and it just worked for us. So again it was time to learn something completely new.


We bought a few pouches of puree and some fortified porridge and experimented with those. We still had to keep up with his milk allowance (and actually still do) but just try and offer him extra food in between. I was so nervous the first time we tried it, fearing he'd just not know what to do and would end up vomitting it all up, but he didn't. He took it really well and actually seemed to enjoy it. I was relieved. Something finally going well.

I was then delighted when Picollo offered us to try some of their brand new range of purees, with some really great flavours to try. I think being able to have such a great range of flavours available and to try has been such a benefit for us, especially knowing that the ingredients are organic and full of goodness. I love that the purees have mediterranean influences in their recipes and they have some really exciting flavour combinations. They've been such a great starting point for us and I feel like Rohan's been introduced to such a wide range of tastes already.

So that's about where we are. We're working up to having three proper meals a day, which is maybe slow progress but I think that's just how it's going to be. But I'm just so happy that Rohan has taken to eating and it doesn't seem to cause any problems. Last week I even tried him with a little soft finger food and he managed to hold it and guide it to his mouth really well so that's such an encouraging start. We also recieved some different purees from Babease with some adventurous flavours as Rohan gets older and we move onto grains and more savoury flavours and textures which have gone down a treat too. I love knowing that we're feeding Rohan great ingredients and exploring lots of flavours. 

Four weeks

Oh Rohan, what a journey we've been on already. 

I know I haven't actually been around on the blog that much, but those who follow me on Instagram will have seen my updates on our progress. But I just wanted to use this space here to talk a little more about how the journey has been for us, if I can. 
So Rohan is four weeks old. It's flown by, I can't quite believe that those newborn days are almost over and that he's growing and changing so fast. I can't even quite remember what those first days and weeks were like. We've been through such an up and down journey already and I know that it will continue to be like that for a long time.

I don't know really where to start with it all, my emotions go all over the place regularly and sometimes I feel like I'm dealing with it all and sometimes not at all. For the most part it's the waiting and not knowing that is killing me. I'm someone who likes to plan and know to some degree what is going to happen in the near future (I know you can never actually know) and all this uncertainty seems like too much. I feel as though I'm putting huge amounts of pressure on myself and the idea that going home will magically make everything better, and so therefore every step back feels like a huge blow and further away from my goal. In reality we don't know when we're going to get home, or what it will even be like when we do. I don't think everything will be magically normal, and that Rohan will be a 'normal' baby when we do, but somehow that's what I've been aiming for. When we're at the hospital just spending time with Rohan everything seems relatively ok, we are enjoying getting to know him, becoming more confident in caring for him and of course falling more in love each day. But when we meet with the doctors it usually all sinks in a little, and my goals and hopes are broken and it feels like I have to start all over again, accepting and learning how to deal with it all. Mainly I just need to try and stay in the present, try and not put too much pressure on myself or the idea of getting home and just taking things day by day.



I don't know really where to start with it all, my emotions go all over the place regularly and sometimes I feel like I'm dealing with it all and sometimes not at all. For the most part it's the waiting and not knowing that is killing me. I'm someone who likes to plan and know to some degree what is going to happen in the near future (I know you can never actually know) and all this uncertainty seems like too much. I feel as though I'm putting huge amounts of pressure on myself and the idea that going home will magically make everything better, and so therefore every step back feels like a huge blow and further away from my goal. In reality we don't know when we're going to get home, or what it will even be like when we do. I don't think everything will be magically normal, and that Rohan will be a 'normal' baby when we do, but somehow that's what I've been aiming for. When we're at the hospital just spending time with Rohan everything seems relatively ok, we are enjoying getting to know him, becoming more confident in caring for him and of course falling more in love each day. But when we meet with the doctors it usually all sinks in a little, and my goals and hopes are broken and it feels like I have to start all over again, accepting and learning how to deal with it all. Mainly I just need to try and stay in the present, try and not put too much pressure on myself or the idea of getting home and just taking things day by day.

So much has changed over the past few weeks, and really Rohan has done so well. We were out of intensive care after a week and a half, and things looked like they were going in the right direction. For quite a while the cardiologists have been waiting and watching for his duct in his heart to close, to see what would happen with his aortic arch and whether it would narrow significantly to require surgery. So far, and now they are pretty certain that it hasn't done what they thought it would, and hasn't actually narrowed enough not to work properly. Which is all good news. We thought initially before he was here that he would require some sort of surgery within the first week of his life, and then recover afterwards. So whilst it's great to know that he doesn't need surgery immediately, potentially at all, there are other problems. Mainly his breathing. Since the day after he was born Rohan has needed support to breathe, this was at first with a CPAP machine which delivered a pretty strong flow of air up his nose, to now being on an Optiflow machine which is much calmer. He's been weaned right down a number of times to just receiving air without extra oxygen and to a very low flow and has even managed to be off it completely for 24 hours or so, twice. Then he desaturates and becomes less stable. They're still unsure as to why he needs it at all. He's been having episodes of breath holding and they're concerned about this. We're awaiting input now from the respiratory team to see what may be causing the issues. 

Something that is also going on in the background is the genetic testing. He has a number of features which they think are all linked and are waiting for results from tests. This is the thing that came as a major shock to us, and really hit me hard. So much so that we asked not to be told any speculation as to what it may be, before they knew for sure. I'm aware that this could take weeks, if not months, maybe more. It seems pretty certain that he does have a condition that is linking all his problems though. To us this was pretty hard news to digest. We had the amnio tests whilst I was pregnant, and thought somehow that because we got negative results that this meant we were in the clear, that there were no other things he could have. To be honest it's not something I try and let myself think about too much as I'm not sure I can take it at the moment. There's already too much to think about. But at some point we will hopefully receive some sort of diagnosis so that we can start to think about how the rest of Rohan's and our lives will be affected by it. It's not going to be easy that's for sure. 

I feel pretty angry a lot of the time, I feel jealous, I feel it's unfair and I just don't understand how it can happen to us. I know it's probably not the best way to be, but I just can't help feeling like it could have so easily been different. I would never wish this on anyone, but I can't help feeling like it is just so unfair it happened to us. It could have so easily been a completely normal pregnancy and Rohan could be a healthy child. Why did it have to be us? Why have we been chosen to be on this journey, to experience all of this? Of course we love Rohan, and I wouldn't change him being here, and he will be who he is, but I do wish that he was healthy. I wish that none of these problems were here, and that we didn't have to worry about him, that we could have him home and experience the all the normal emotions of adding a new member to our family. I'm worried about what the future will bring, how we will cope with a genetic diagnosis and what that will mean for our family and how we will move forward. It could be life altering, and we will have to change our views of the future. 

I'm scared beyond belief about what the future holds, and above all I'm grieving the loss of what I thought we would have. Our perfect family of four, another healthy child, another normal parenting journey. But this is where we are. This is what it will be, and this is the journey that's been laid out for us and one we're going to have to take no matter what. 

Oh Rohan, you lovely little thing. 

Four weeks

Oh Rohan, what a journey we've been on already. 

I know I haven't actually been around on the blog that much, but those who follow me on Instagram will have seen my updates on our progress. But I just wanted to use this space here to talk a little more about how the journey has been for us, if I can. 
So Rohan is four weeks old. It's flown by, I can't quite believe that those newborn days are almost over and that he's growing and changing so fast. I can't even quite remember what those first days and weeks were like. We've been through such an up and down journey already and I know that it will continue to be like that for a long time.

I don't know really where to start with it all, my emotions go all over the place regularly and sometimes I feel like I'm dealing with it all and sometimes not at all. For the most part it's the waiting and not knowing that is killing me. I'm someone who likes to plan and know to some degree what is going to happen in the near future (I know you can never actually know) and all this uncertainty seems like too much. I feel as though I'm putting huge amounts of pressure on myself and the idea that going home will magically make everything better, and so therefore every step back feels like a huge blow and further away from my goal. In reality we don't know when we're going to get home, or what it will even be like when we do. I don't think everything will be magically normal, and that Rohan will be a 'normal' baby when we do, but somehow that's what I've been aiming for. When we're at the hospital just spending time with Rohan everything seems relatively ok, we are enjoying getting to know him, becoming more confident in caring for him and of course falling more in love each day. But when we meet with the doctors it usually all sinks in a little, and my goals and hopes are broken and it feels like I have to start all over again, accepting and learning how to deal with it all. Mainly I just need to try and stay in the present, try and not put too much pressure on myself or the idea of getting home and just taking things day by day.



I don't know really where to start with it all, my emotions go all over the place regularly and sometimes I feel like I'm dealing with it all and sometimes not at all. For the most part it's the waiting and not knowing that is killing me. I'm someone who likes to plan and know to some degree what is going to happen in the near future (I know you can never actually know) and all this uncertainty seems like too much. I feel as though I'm putting huge amounts of pressure on myself and the idea that going home will magically make everything better, and so therefore every step back feels like a huge blow and further away from my goal. In reality we don't know when we're going to get home, or what it will even be like when we do. I don't think everything will be magically normal, and that Rohan will be a 'normal' baby when we do, but somehow that's what I've been aiming for. When we're at the hospital just spending time with Rohan everything seems relatively ok, we are enjoying getting to know him, becoming more confident in caring for him and of course falling more in love each day. But when we meet with the doctors it usually all sinks in a little, and my goals and hopes are broken and it feels like I have to start all over again, accepting and learning how to deal with it all. Mainly I just need to try and stay in the present, try and not put too much pressure on myself or the idea of getting home and just taking things day by day.

So much has changed over the past few weeks, and really Rohan has done so well. We were out of intensive care after a week and a half, and things looked like they were going in the right direction. For quite a while the cardiologists have been waiting and watching for his duct in his heart to close, to see what would happen with his aortic arch and whether it would narrow significantly to require surgery. So far, and now they are pretty certain that it hasn't done what they thought it would, and hasn't actually narrowed enough not to work properly. Which is all good news. We thought initially before he was here that he would require some sort of surgery within the first week of his life, and then recover afterwards. So whilst it's great to know that he doesn't need surgery immediately, potentially at all, there are other problems. Mainly his breathing. Since the day after he was born Rohan has needed support to breathe, this was at first with a CPAP machine which delivered a pretty strong flow of air up his nose, to now being on an Optiflow machine which is much calmer. He's been weaned right down a number of times to just receiving air without extra oxygen and to a very low flow and has even managed to be off it completely for 24 hours or so, twice. Then he desaturates and becomes less stable. They're still unsure as to why he needs it at all. He's been having episodes of breath holding and they're concerned about this. We're awaiting input now from the respiratory team to see what may be causing the issues. 

Something that is also going on in the background is the genetic testing. He has a number of features which they think are all linked and are waiting for results from tests. This is the thing that came as a major shock to us, and really hit me hard. So much so that we asked not to be told any speculation as to what it may be, before they knew for sure. I'm aware that this could take weeks, if not months, maybe more. It seems pretty certain that he does have a condition that is linking all his problems though. To us this was pretty hard news to digest. We had the amnio tests whilst I was pregnant, and thought somehow that because we got negative results that this meant we were in the clear, that there were no other things he could have. To be honest it's not something I try and let myself think about too much as I'm not sure I can take it at the moment. There's already too much to think about. But at some point we will hopefully receive some sort of diagnosis so that we can start to think about how the rest of Rohan's and our lives will be affected by it. It's not going to be easy that's for sure. 

I feel pretty angry a lot of the time, I feel jealous, I feel it's unfair and I just don't understand how it can happen to us. I know it's probably not the best way to be, but I just can't help feeling like it could have so easily been different. I would never wish this on anyone, but I can't help feeling like it is just so unfair it happened to us. It could have so easily been a completely normal pregnancy and Rohan could be a healthy child. Why did it have to be us? Why have we been chosen to be on this journey, to experience all of this? Of course we love Rohan, and I wouldn't change him being here, and he will be who he is, but I do wish that he was healthy. I wish that none of these problems were here, and that we didn't have to worry about him, that we could have him home and experience the all the normal emotions of adding a new member to our family. I'm worried about what the future will bring, how we will cope with a genetic diagnosis and what that will mean for our family and how we will move forward. It could be life altering, and we will have to change our views of the future. 

I'm scared beyond belief about what the future holds, and above all I'm grieving the loss of what I thought we would have. Our perfect family of four, another healthy child, another normal parenting journey. But this is where we are. This is what it will be, and this is the journey that's been laid out for us and one we're going to have to take no matter what. 

Oh Rohan, you lovely little thing. 

the accident



For those of you how don't follow me on instagram (@goldteeth btw!!) or twitter/facebook you won't have heard about our mini ordeal that occurred on Sunday night. (But thanks so much to everyone for their concern and well wishes, it was very much appreciated) Theo had a little trip and banged his head against the frame at the bottom of our sofa. I picked him up and was giving him a cuddle and it was only when I lifted him off that I noticed there was blood, a lot of blood. Theo's fallen and bit his lip before and had a tiny bit of blood, but this was different, there was a giant pool of blood in his mouth. He was pretty upset obviously, and we weren't sure how serious it was. Rob rang Nhs direct whilst I tried to calm him so we could see, watching The Gruffalo helped! They told us to go to A&E, which we thought we might have to. Then we suddenly realised that I didn't have my car at the moment, we rang Rob's parents but they were out and no-where near home unfortunately. It was about 6 in the evening and we didn't have any cash on us to get a taxi, so we went to ask out new next door neighbours (who have two young children). As luck would have it the husband was just heading out the door anyway to go to work for a few hours, and was driving the way of the hopsital, so he very kindly gave us a lift.

Since moving here I've been fine without my car and we haven't needed it at all, but suddenly I felt very lost without it at the time of an emergency, but luckily for us we have very kind new neighbours, and I couldn't be more thankful. So to cut a long story short, we waited in a very busy a&e ward to see a nurse, then a Doctor, and all the while we couldn't give Theo any food or water just in case he needed stitches and anesthetic. None of us had had any dinner (as our lovely roast was 10 minutes away from being ready when he fell!) so we were all starving. But Theo coped amazingly looking back, luckily we managed to pack enough entertainment in the form of books, Thomas trains and the Ipad to distract him, but it was still a very long 4 hours! We eventually saw the doctor who had a little look at his mouth, and said thankfully it wasn't serious enough to need stitches so we could go home! Luckily the mouth heals very quickly, so there wasn't much they could do. We called our neighbour to see if he was still at work, and he was but was leaving so he came and picked us up on the way home too. Such a relief. We put Theo to bed and he rolled over and went straight to sleep! He slept in until half 9 the next morning...

So that was our excitement for the evening. I have a feeling that this isn't going to be our last trip to a&e, but I just hope it's nothing too serious again. But it was scary, it made me feel a bit like a child myself being there. I kept on thinking that there should be someone else there to come and take over, until I realised that no, actually I'm the adult and I'm his mother, that the responsibility came down to me. Sometimes it's easy to forget just how responsible you are for this little person on a day to day basis, until something like this happens...(that doesn't mean I'm neglectful of him, just that you sort of take it for advantage sometimes that they're ok)

So this week we've been hibernating a bit (it's getting coooooold!) and taking it easy, as I'm a bit paranoid about going out too much in case he flings himself off/over something like he normally does and causes some more damage. His lip is healing well, he's got a fat lip and a big old lumpy ulcer over the cut which doesn't look too pretty! But he doesn't seem bothered by it, and is his usual self and eating well, which is a relief. Yesterday he did something funny, by going over to the sofa and reenacting the fall. He kept (lightly) headbutting the sofa, then screwing his face up saying 'ow'. Now he knows how much attention he got for it! Little monster....

I'll be back soon with a proper Theo update, as it's been a while!

oh and see that big line of drool in the photo, there's a lot of that! 

the accident



For those of you how don't follow me on instagram (@goldteeth btw!!) or twitter/facebook you won't have heard about our mini ordeal that occurred on Sunday night. (But thanks so much to everyone for their concern and well wishes, it was very much appreciated) Theo had a little trip and banged his head against the frame at the bottom of our sofa. I picked him up and was giving him a cuddle and it was only when I lifted him off that I noticed there was blood, a lot of blood. Theo's fallen and bit his lip before and had a tiny bit of blood, but this was different, there was a giant pool of blood in his mouth. He was pretty upset obviously, and we weren't sure how serious it was. Rob rang Nhs direct whilst I tried to calm him so we could see, watching The Gruffalo helped! They told us to go to A&E, which we thought we might have to. Then we suddenly realised that I didn't have my car at the moment, we rang Rob's parents but they were out and no-where near home unfortunately. It was about 6 in the evening and we didn't have any cash on us to get a taxi, so we went to ask out new next door neighbours (who have two young children). As luck would have it the husband was just heading out the door anyway to go to work for a few hours, and was driving the way of the hopsital, so he very kindly gave us a lift.

Since moving here I've been fine without my car and we haven't needed it at all, but suddenly I felt very lost without it at the time of an emergency, but luckily for us we have very kind new neighbours, and I couldn't be more thankful. So to cut a long story short, we waited in a very busy a&e ward to see a nurse, then a Doctor, and all the while we couldn't give Theo any food or water just in case he needed stitches and anesthetic. None of us had had any dinner (as our lovely roast was 10 minutes away from being ready when he fell!) so we were all starving. But Theo coped amazingly looking back, luckily we managed to pack enough entertainment in the form of books, Thomas trains and the Ipad to distract him, but it was still a very long 4 hours! We eventually saw the doctor who had a little look at his mouth, and said thankfully it wasn't serious enough to need stitches so we could go home! Luckily the mouth heals very quickly, so there wasn't much they could do. We called our neighbour to see if he was still at work, and he was but was leaving so he came and picked us up on the way home too. Such a relief. We put Theo to bed and he rolled over and went straight to sleep! He slept in until half 9 the next morning...

So that was our excitement for the evening. I have a feeling that this isn't going to be our last trip to a&e, but I just hope it's nothing too serious again. But it was scary, it made me feel a bit like a child myself being there. I kept on thinking that there should be someone else there to come and take over, until I realised that no, actually I'm the adult and I'm his mother, that the responsibility came down to me. Sometimes it's easy to forget just how responsible you are for this little person on a day to day basis, until something like this happens...(that doesn't mean I'm neglectful of him, just that you sort of take it for advantage sometimes that they're ok)

So this week we've been hibernating a bit (it's getting coooooold!) and taking it easy, as I'm a bit paranoid about going out too much in case he flings himself off/over something like he normally does and causes some more damage. His lip is healing well, he's got a fat lip and a big old lumpy ulcer over the cut which doesn't look too pretty! But he doesn't seem bothered by it, and is his usual self and eating well, which is a relief. Yesterday he did something funny, by going over to the sofa and reenacting the fall. He kept (lightly) headbutting the sofa, then screwing his face up saying 'ow'. Now he knows how much attention he got for it! Little monster....

I'll be back soon with a proper Theo update, as it's been a while!

oh and see that big line of drool in the photo, there's a lot of that!