1st visit to Southend
I was so excited that he was going to be coming "home". Ethan was supposed to come home on Wednesday 24th February however his broken leg swelled up again so it was delayed due to xrays (it was just his bone calcifying around the break that made it swell but better to be safe), so I expected him to be transferred the following day. 4 months after he was born and 11 days after his due date we were finally going homeward bound, after a small delay where the local hospital said they did not have enough staff on duty to look after him, however after being told he was only on nasal cannula they accepted him. He was transferred back home that evening at 11.55pm!
So here we were - on the road heading home - so we hoped! We were so happy for people to be able to meet Ethan, it felt like he was the make believe baby up until that point! His brother and sister finally got to see him, we were all together for the first time! It felt like things were going the right way, his feeds were going up, the amount of monitoring was less (just SAT monitor and no longer respiratory rate etc) and he was taking some amounts of milk by mouth. He had visitors, his grandparents, Aunties and Uncles and cousins and everyone got their cuddles and was well and truly loved up with Ethan.
He had his own room at Southend and he was in a proper cot! It felt great to have some kind of privacy with Ethan and just to let us enjoy our baby! We did have to go back to Royal London after 2 weeks as he had inguinal bilateral hernias (groin hernias on both sides to you and me) but he had an operation and was back the next day! (another thank you due to Irene!) He did have to go back on the ventilator for the operation but once he woke up he actually pulled the tube out himself! Which was traumatic for me to witness. Then he did not last long on the CPAP that they insisted in transferring him back to for a short while. I stayed over night at the hospital in the on call room, bless poor Ethan. I spent most of that night trying to calm him down after he was transferred to CPAP as he spent the whole time crying (little did we know it would be something that would be a pattern in a few weeks time!). Then I suddenly felt damp, I wondered either if he was very hot and sweating loads or if his nappy had leaked, but no he had pulled out the cannula and I was covered in his blood! Of course once he was cleaned up it was only a tiny scratch which looked worse then it was. At that point the nurse bundled me up and made me go to bed which was actually the on call room, in the morning he was no worse for wear, back onto nasal cannula and very happy! Before we left some of the staff at The London came to say goodbye as we had missed them the last time. I also got to see my friend Irene and spend some time with Angelina, again thank you Irene for feeding me that evening and staying with me.
Back to Southend we went, a very tired mummy and Ethan going for another ride in the amulance!
Then the weeks went by and there was talk of Ethan going home, but first we needed to move him out of SCBU and into the childrens ward! The next step! Still his own room but one with a window and a television. We still had an issue with Ethans weight gain and he was eventually moved onto a predigested milk called neocate in the hope of helping, and it worked, slowly but surely he was gaining weight and had progressed to hourly feeds via his tube. He did seem to be suffering with reflux with what seemed to be gasping for air just after feeds, I spoke to a few nurses and doctors about it but nothing was really said or done about it. It was odd he would gasp for air after a feed and then after a while his SATS would drop suddenly but by the time the nurse got there they were back up. I thought he must be fine then.
The day that Ethan moved to the childrens ward around 23rd April, Ethan had his 2nd month (corrected age) injections the week before. He was snuffly and had a cough and his oxygen had increased. He did not seem his normal self at all, and just lay in his cot not really doing much, not even crying - again mentioned it to the nurses and doctors and nothing was really said or done. We moved to childrens ward any way though which really upset him. I was worried that the oxygen was far to high to be comfortable. He had left Royal london on 0.02 of O2 and was now heading past 1 litre!
The next day he was very poorly and had to have oxygen via nasal cannala AND mask but still his SATS were low. I was called in at 5am. He was very upset and the nurses wanted to try him on CPAP again, so they sedated him. At this point all of my research came into play, I could see straight away when he needed ventilating and even suggested it to his nurse before she said anything. Almost immediatley after sedation (Just Chloral) Ethan lapsed into unconsiousness and it was decided he needed to be ventilated and moved to another hospital with a childrens intensive care. He was moved into the critical care unit to await transfer, where I was when I first had him and his nurse was the same nurse I had had that night! There he was still very small, about 7lb 11oz at that point, laying at the top end of an adult bed. Later that night he was moved on extremely high settings to Great Ormond street hospital and was back in the NICU. He was transferred by the CATS team into a POD and taken away. I went home to make my journey to join him the next morning, thinking it would be best if I could get some sleep, of course I didnt sleep a wink! (Ethans Father felt he could not go in the ambulance) We left at 7am the next day to get to Ethan to see what Great Ormond Street could do.
I could see his setting were very high and I knew what that meant. In a way knowing helped me prepare myself for the weeks ahead but also made me very very scared. I could not lose my baby, not now, not after so much!
Pictures above : Ethan cuddles time!
Pictures below : Ethan in transport incubator, Ethan the Koala bear and Getting bigger!
So here we were - on the road heading home - so we hoped! We were so happy for people to be able to meet Ethan, it felt like he was the make believe baby up until that point! His brother and sister finally got to see him, we were all together for the first time! It felt like things were going the right way, his feeds were going up, the amount of monitoring was less (just SAT monitor and no longer respiratory rate etc) and he was taking some amounts of milk by mouth. He had visitors, his grandparents, Aunties and Uncles and cousins and everyone got their cuddles and was well and truly loved up with Ethan.
He had his own room at Southend and he was in a proper cot! It felt great to have some kind of privacy with Ethan and just to let us enjoy our baby! We did have to go back to Royal London after 2 weeks as he had inguinal bilateral hernias (groin hernias on both sides to you and me) but he had an operation and was back the next day! (another thank you due to Irene!) He did have to go back on the ventilator for the operation but once he woke up he actually pulled the tube out himself! Which was traumatic for me to witness. Then he did not last long on the CPAP that they insisted in transferring him back to for a short while. I stayed over night at the hospital in the on call room, bless poor Ethan. I spent most of that night trying to calm him down after he was transferred to CPAP as he spent the whole time crying (little did we know it would be something that would be a pattern in a few weeks time!). Then I suddenly felt damp, I wondered either if he was very hot and sweating loads or if his nappy had leaked, but no he had pulled out the cannula and I was covered in his blood! Of course once he was cleaned up it was only a tiny scratch which looked worse then it was. At that point the nurse bundled me up and made me go to bed which was actually the on call room, in the morning he was no worse for wear, back onto nasal cannula and very happy! Before we left some of the staff at The London came to say goodbye as we had missed them the last time. I also got to see my friend Irene and spend some time with Angelina, again thank you Irene for feeding me that evening and staying with me.
Back to Southend we went, a very tired mummy and Ethan going for another ride in the amulance!
Then the weeks went by and there was talk of Ethan going home, but first we needed to move him out of SCBU and into the childrens ward! The next step! Still his own room but one with a window and a television. We still had an issue with Ethans weight gain and he was eventually moved onto a predigested milk called neocate in the hope of helping, and it worked, slowly but surely he was gaining weight and had progressed to hourly feeds via his tube. He did seem to be suffering with reflux with what seemed to be gasping for air just after feeds, I spoke to a few nurses and doctors about it but nothing was really said or done about it. It was odd he would gasp for air after a feed and then after a while his SATS would drop suddenly but by the time the nurse got there they were back up. I thought he must be fine then.
The day that Ethan moved to the childrens ward around 23rd April, Ethan had his 2nd month (corrected age) injections the week before. He was snuffly and had a cough and his oxygen had increased. He did not seem his normal self at all, and just lay in his cot not really doing much, not even crying - again mentioned it to the nurses and doctors and nothing was really said or done. We moved to childrens ward any way though which really upset him. I was worried that the oxygen was far to high to be comfortable. He had left Royal london on 0.02 of O2 and was now heading past 1 litre!
The next day he was very poorly and had to have oxygen via nasal cannala AND mask but still his SATS were low. I was called in at 5am. He was very upset and the nurses wanted to try him on CPAP again, so they sedated him. At this point all of my research came into play, I could see straight away when he needed ventilating and even suggested it to his nurse before she said anything. Almost immediatley after sedation (Just Chloral) Ethan lapsed into unconsiousness and it was decided he needed to be ventilated and moved to another hospital with a childrens intensive care. He was moved into the critical care unit to await transfer, where I was when I first had him and his nurse was the same nurse I had had that night! There he was still very small, about 7lb 11oz at that point, laying at the top end of an adult bed. Later that night he was moved on extremely high settings to Great Ormond street hospital and was back in the NICU. He was transferred by the CATS team into a POD and taken away. I went home to make my journey to join him the next morning, thinking it would be best if I could get some sleep, of course I didnt sleep a wink! (Ethans Father felt he could not go in the ambulance) We left at 7am the next day to get to Ethan to see what Great Ormond Street could do.
I could see his setting were very high and I knew what that meant. In a way knowing helped me prepare myself for the weeks ahead but also made me very very scared. I could not lose my baby, not now, not after so much!
Pictures above : Ethan cuddles time!
Pictures below : Ethan in transport incubator, Ethan the Koala bear and Getting bigger!