Tuesday 9 October 2007
October 8th
Am told possibly can go home next day over night to see how it feels. James heart is monitored by ekg 24 hours since he has small arrhythmia. Doctors not concerned but I am. Talk about food. James keeps throwing up the food he gets down. During an examination the nurse could hear that James heart was beating very irregular. Me crying scared. So afraid to loose our baby. Nigel pops over quickly after work. Miss him very very much.I got used to have him around.
October 7th
Calls Disa for help when I am home again if Nigel is away abroad. Mum and Dad fly home. I take James for a walk in the pram.
October 6th
I walked to the city centre of Lund with Mum, Dad, Timothy and we meet up with my big sister Ingela.
September 30th
Taken off ventilator earlier than expected and holds well. Hold James in our arms again!
September 29th – James improving, thankfully
In the morning I still had a really high fever so we decided to take a trip to emergency to make sure it was really the milk only playing tricks on me. I sat in ER waiting and feeling stupid whilst Nigel popped over to our darling. It turned out I had an infection with a CRP of 165 (normal is 6-8). The doctor told gob smacked me to leave a urine test; I had to be put on a drip plus needed antibiotics straight into the blood. She wanted me to stay in their ward. I told her no way. I could come and take the medicine, but not staying around to wait for a drip or sleep over! I told her that I could visit for the medication. I told her about James plus I had promised the kids I would come back home to them that evening. So I took my bag of fluid in my hand and made our way up to see James. The nurses were nice enough to put the drip on the right speed or I would had put it on free flow :o). It just felt like pure nonsense to me, totally ridiculous. James had had major heart surgery and there was I walking around with a drip.
It was so lovely to see James!! Though I became really scared when I saw him! looking at him I saw him as a baby, but not my baby. I was totally confused and petrified. Blimey I was going nuts for real. I looked at Nigel, he asked “what´s the matter?” I asked him if he thought James looked different from the day before. His response was “no he looks exactly like he did yesterday”. My brain was working on overloaded. I asked myself many questions. I felt really horrible towards James but I started to understand what was happening to me. I had become used to seeing James totally swollen over his face. What must have looked horrible for others was my baby, James got rid of a lot of fluid and the puffiness was almost totally gone now. I also “wanted” to protect myself from more pain and agony of losing my baby again. I almost started rejecting him. Not me but my defence mechanism. I was pretty worn down after all the shock and with being ill. It scared the living life out of me. I talked to Nigel about it during the day, but still I didn´t want him to worry him about me becoming even more neurotic now especially when he had his “own” grief and worries to handle. Thankfully I caught myself in time and understood what was happening. I had not been able to bond with James physically since he was dying in my arms. The tubes had been in the way and separated us from being close. At least good things came out from the psychology and psychiatry I had been studying before I became pregnant with James.
I shook my head thinking it´s unbelievable, all this time in shock and being traumatized and no therapist had been offered to us. No wonder I was going Looney.
The drain James had in front and behind his heart was taken out this day. They were quickly pulled out and three stitched were ready by each incision to just be knotted neatly together.
After a while of having the total shivers in intensive care unit, the staff told me nicely but firmly that I needed to get some proper rest. This day I couldn´t do much for James but the day after they might take him off the ventilator and may even wake up! So we went back to the hotel, took down a picture from the wall and hung my bag of drip on the hook so I could sleep there instead. No way was I going over to the ward to sleep. I am stubborn as a mule of course, when the drip was finished I went back to the ward to get disconnected :o).
We drove home to the kids for a while. I`m not used to being without my children for long periods of time (nothing more than every other weekend). The kids were doing wonderfully with mum and dad of course, they spoil them rotten :o). Though I still keep beating myself up with what a lousy mum I am that can´t split myself in the middle to be with all of my kids at the same time.
We had to go back at midnight to get my antibiotics, so we slept at the patient hotel over night.
It was so lovely to see James!! Though I became really scared when I saw him! looking at him I saw him as a baby, but not my baby. I was totally confused and petrified. Blimey I was going nuts for real. I looked at Nigel, he asked “what´s the matter?” I asked him if he thought James looked different from the day before. His response was “no he looks exactly like he did yesterday”. My brain was working on overloaded. I asked myself many questions. I felt really horrible towards James but I started to understand what was happening to me. I had become used to seeing James totally swollen over his face. What must have looked horrible for others was my baby, James got rid of a lot of fluid and the puffiness was almost totally gone now. I also “wanted” to protect myself from more pain and agony of losing my baby again. I almost started rejecting him. Not me but my defence mechanism. I was pretty worn down after all the shock and with being ill. It scared the living life out of me. I talked to Nigel about it during the day, but still I didn´t want him to worry him about me becoming even more neurotic now especially when he had his “own” grief and worries to handle. Thankfully I caught myself in time and understood what was happening. I had not been able to bond with James physically since he was dying in my arms. The tubes had been in the way and separated us from being close. At least good things came out from the psychology and psychiatry I had been studying before I became pregnant with James.
I shook my head thinking it´s unbelievable, all this time in shock and being traumatized and no therapist had been offered to us. No wonder I was going Looney.
The drain James had in front and behind his heart was taken out this day. They were quickly pulled out and three stitched were ready by each incision to just be knotted neatly together.
After a while of having the total shivers in intensive care unit, the staff told me nicely but firmly that I needed to get some proper rest. This day I couldn´t do much for James but the day after they might take him off the ventilator and may even wake up! So we went back to the hotel, took down a picture from the wall and hung my bag of drip on the hook so I could sleep there instead. No way was I going over to the ward to sleep. I am stubborn as a mule of course, when the drip was finished I went back to the ward to get disconnected :o).
We drove home to the kids for a while. I`m not used to being without my children for long periods of time (nothing more than every other weekend). The kids were doing wonderfully with mum and dad of course, they spoil them rotten :o). Though I still keep beating myself up with what a lousy mum I am that can´t split myself in the middle to be with all of my kids at the same time.
We had to go back at midnight to get my antibiotics, so we slept at the patient hotel over night.
September 28th – One sick mummy – no news really :o)
The doctors took away some medication from James as he was doing really well! He was behaving :o)
I was still not well. Though I felt a bit better and decided to go to the breast feeding unit to get some tips after lunch. The woman working there took a look at my name and she said “how is he doing?” Turns out she was there when I called in to the breastfeeding unit to ask about whether to call an ambulance or go by ourselves. Her colleague took the call and said she just froze when she heard my distress and message that he was dying in my arms. I asked her to send all my regards and thanks to the woman that supported us.
About me….well she told me if I still had high fever the next day I should go to emergency. I thought that was nonsense, but knew it would be stupid to not just do an easy checkup.
Nigel and I drove home. I missed the kids tremendously plus Mum and Dad of course. They both were doing an excellent admirable job at home with the kids and everything else. Dad had built out our storage room besides the stairs and Mum had scrubbed down the greenhouse. Every time Nigel talked to them they were doing washing! I don’t know how we will ever be able to give back what they have done for us. I really hope James can help us with his smile for Mum and Dad in a couple of months.
Going home I wore two jackets. I was totally exhausted when I finally arrived home. I headed straight to bed forgetting to take off the jackets. I fell asleep instantly, Nigel went off a couple of hours with M to a party, Mum and Dad were downstairs with all the other kids. A couple of hours later mum awoke me with some trouble. I still slept with very high fever wearing two jackets. Not the smartest thing to do :o).
I was still not well. Though I felt a bit better and decided to go to the breast feeding unit to get some tips after lunch. The woman working there took a look at my name and she said “how is he doing?” Turns out she was there when I called in to the breastfeeding unit to ask about whether to call an ambulance or go by ourselves. Her colleague took the call and said she just froze when she heard my distress and message that he was dying in my arms. I asked her to send all my regards and thanks to the woman that supported us.
About me….well she told me if I still had high fever the next day I should go to emergency. I thought that was nonsense, but knew it would be stupid to not just do an easy checkup.
Nigel and I drove home. I missed the kids tremendously plus Mum and Dad of course. They both were doing an excellent admirable job at home with the kids and everything else. Dad had built out our storage room besides the stairs and Mum had scrubbed down the greenhouse. Every time Nigel talked to them they were doing washing! I don’t know how we will ever be able to give back what they have done for us. I really hope James can help us with his smile for Mum and Dad in a couple of months.
Going home I wore two jackets. I was totally exhausted when I finally arrived home. I headed straight to bed forgetting to take off the jackets. I fell asleep instantly, Nigel went off a couple of hours with M to a party, Mum and Dad were downstairs with all the other kids. A couple of hours later mum awoke me with some trouble. I still slept with very high fever wearing two jackets. Not the smartest thing to do :o).
September 27th – Breathing for Mummy
Nigel came back to the hotel early and served me breakfast in bed. He is such a darling. I had to rest more hours. Nigel promised me he would kiss James from me and tell him how much I missed him and loved him. I had a lot of pain in my left side over the pelvis and under the ribs. It mafe me swear over my arthritis. I´m 32 but I felt like 112 :o)
Staff were still talking about James’ peeing not being totally satisfactory. More drugs for him. I couldn´t hold myself anymore I had to see James.
It took me quite a while with some breaks to finally make myself up to James. When I came into the ward another baby had moved in as well. I introduced myself to his parents and said hi to the staff. Meanwhile, Nigel and the nurse were watching James´s monitor providing his heart rhythm and breathing frequents etc. I went up to Nigel after the washing procedure and asked what was up. He pointed at the monitor and said as soon as I came into the room and started talking, James´s pulse raised and he started breathing by himself. He could hear his Mummy´s voice!
Staff were still talking about James’ peeing not being totally satisfactory. More drugs for him. I couldn´t hold myself anymore I had to see James.
It took me quite a while with some breaks to finally make myself up to James. When I came into the ward another baby had moved in as well. I introduced myself to his parents and said hi to the staff. Meanwhile, Nigel and the nurse were watching James´s monitor providing his heart rhythm and breathing frequents etc. I went up to Nigel after the washing procedure and asked what was up. He pointed at the monitor and said as soon as I came into the room and started talking, James´s pulse raised and he started breathing by himself. He could hear his Mummy´s voice!
Sunday 7 October 2007
September 26th – First day after operation
I woke up with a high fever. There was no way for me to be able to see James this day. My milk had started to express rapidly and I was sure that´s why I had a fever. It had happened before with my other children during the first days after birth. I stayed in bed and Nigel went over to see our James. James was doing well – staff had given him diuretic drugs to make him pee more. This is a common problem after being put on a heart lung machine. So they were only slightly concerned about him not peeing more. I stayed in bed all day watching TV and all the pictures we had of James. The computer was on day and night so I could see him whenever I wanted even if it not physically. I felt like a terrible mum lying in bed with a fever especially after my baby´s heart surgery. Nigel went home over night to keep Mum and Dad company and to see the kids. My fever was making me hit the roof but I still had problems sleeping. All I could think of was James and the other kids at home. I felt totally worthless. The fever annoyed my pelvis and back so I could barely walk.
September 25th - Operation day
I had a pretty good night sleep considering. Made my usual couple of calls to hear how James was during the night. Nigel rushed off to fetch his parents from the airport 9.30. Whilst Nigel met up with Mum and Dad (June and David) I had to go and see James. His big day was here - the day I had been dreading all along. Thanks to surgeon Sune I was surprisingly relaxed. I/we had great confidence in him. I realised if Sune couldn´t save our baby boy then nobody could have done better for him. Additionally we had great confidence in James too, he is a strong fighter. I spent the time alone with James well. I did my favourite things. Leaning over him I put my cheek to his cheek so he could feel I was there with him. I whispered many times in his ear, telling him to keep on fighting. Told him how much we loved him and how extremely proud we were of him. I knew it might be my last chance to be close to him again, being so warm and alive. A couple of tears rolled down from my cheeks. After a while Nigel turned up with Mum and Dad. It was so nice to see them again, just a shame it was under such circumstances. Mum and Dad finally got to see their grandson for the first time and before the operation. They took some photos of James, admired him of course :o) and afterwards we all went for lunch. James´s staff called me on the mobile just after 12 and said when they would pick him up and we had the time to see him again before. Nigel and I rushed over. We agreed we shouldn´t be there when they came to pick him up, I would not be able to keep a cool head anymore. What James didn´t need was a hysterical mummy. We kissed him and told him how much we loved him and how proud we were of him. Out from the room I couldn´t keep my tears back anymore. It was a day of silence for me. I felt I was horrible to Mum and Dad but all I could do was concentrate on James. We headed back home to wait for the call in the evening. The op-staff picked up James at 13.40. Time went very slow indeed. It was so nice to meet the kids when they came home in the afternoon. A total exhaustion came over me. I worked on the blog as I had decided to do but couldn´t even carry out half of what I had planned. Instead I looked around on different websites and looked on happy stories from cases like James. Naturally I didn´t stop there, without telling Nigel I peeked on the unhappy stories as well including pictures of dead babies. My way of trying to prepare myself for something I never ever could prepare myself for. I fell asleep in Neville´s bed with James´s body top close to me. It had been my comforter for a while. It was the body top he had worn when we came in to the emergency and later used over his head in intensive care to keep him warm protecting his eyes from the bright examination lamps. I refused to wash it! The scent on it was from my baby. I woke up from my mobile going off at 19.30, it was Sune!!! Nigel was right by me when I talked to the surgeon. Sune said everything went well and I asked him straight away if there were any surprises. Of course I meant bad ones we didn´t like and he said no everything was as he expected.
We took it easy at home and didn´t rush off too quickly to James. We knew the staff had quite a lot to hook up to him, and to settle him after safely coming out from theatre.
When we arrived back to him it hit me how lucky we were! He was still with us, not over yet but our son is not a quitter. He takes after two, bull headed, determined strong parents! They hadn´t closed his sternum because of the increasing swelling of his operated heart. He would have an open chest for a couple of days for precaution. Over his chest he only had a sterile pad, so we clearly saw his heart pump beneath it. Neither Nigel nor I are skittish which helped of course. The sight of his heart pumping up and down from inside his chest was the most beautiful sight I have ever seen :o). Nigel took some pictures of James and his incision so that when James is older he can see what it looked like. His siblings will have a lot of questions and so will James.
When we came back to the hotel room I realised I had a slight temperature.
We took it easy at home and didn´t rush off too quickly to James. We knew the staff had quite a lot to hook up to him, and to settle him after safely coming out from theatre.
When we arrived back to him it hit me how lucky we were! He was still with us, not over yet but our son is not a quitter. He takes after two, bull headed, determined strong parents! They hadn´t closed his sternum because of the increasing swelling of his operated heart. He would have an open chest for a couple of days for precaution. Over his chest he only had a sterile pad, so we clearly saw his heart pump beneath it. Neither Nigel nor I are skittish which helped of course. The sight of his heart pumping up and down from inside his chest was the most beautiful sight I have ever seen :o). Nigel took some pictures of James and his incision so that when James is older he can see what it looked like. His siblings will have a lot of questions and so will James.
When we came back to the hotel room I realised I had a slight temperature.
September 24th - Day before the Op
Waking up, I still felt very low in mind, wondering how it would end for all of us. After breakfast we go up to James for some snuggling. Sometimes I lean over James in his bed and put my cheek on his to be close for a while. It feels so wonderful :O)
A short dark haired confident man in green clothes walked into the ward introducing himself as The Chief of Surgeons, his name is Sune. He told us surgery would be on the following day. They decided to carry out the operation Tuesday afternoon instead of Wednesday due to being satisfied that there was no requirement to improve leaking valve. He would perform the surgery himself, using his own modified method of the Japanese Norwood. Chief Surgeon Sune explained the operation – The body temperature drops to 28 degrees with keeping heart and lungs functioning. I asked him what were James’s odds – he replied that only 1-2 % of heart ops do not make it however, James Op is the most difficult so odds of not making it around 8%. We both feel much better and hopeful after meeting with Sune. I had never felt so calmed ever since James almost died on us, for the first time I had hope! Sune is a very impressive man which made us feel incredibly positive especially as he was going to carry out the operation.
ET, C and N came over for a visit with my dad. After he was taking the kids back home to our house so they could start school again following day. The kids were playing down at the play hall and then followed us back up to see James. They were very excited all three of them. Neville was certainly most impressed since I had made sure James had Winnie the Pooh nappies on and a Winnie the pooh coverlet over him. We took pictures one and one with James. It was so lovely to see the boys, kiss them and hug them. I felt very sad these days, grieving for James at the same time wishing I could be with the other kids and felt I was letting them down. I knew after the operation James was far from going home within the nearest future.
Later Nigel talked to his parents. They had just returned home from a holiday in Cyprus and had now booked a flight to come over and help us out from tomorrow, and the following two weeks. They are so sweet. It’s going to be nice to show off James.
A short dark haired confident man in green clothes walked into the ward introducing himself as The Chief of Surgeons, his name is Sune. He told us surgery would be on the following day. They decided to carry out the operation Tuesday afternoon instead of Wednesday due to being satisfied that there was no requirement to improve leaking valve. He would perform the surgery himself, using his own modified method of the Japanese Norwood. Chief Surgeon Sune explained the operation – The body temperature drops to 28 degrees with keeping heart and lungs functioning. I asked him what were James’s odds – he replied that only 1-2 % of heart ops do not make it however, James Op is the most difficult so odds of not making it around 8%. We both feel much better and hopeful after meeting with Sune. I had never felt so calmed ever since James almost died on us, for the first time I had hope! Sune is a very impressive man which made us feel incredibly positive especially as he was going to carry out the operation.
ET, C and N came over for a visit with my dad. After he was taking the kids back home to our house so they could start school again following day. The kids were playing down at the play hall and then followed us back up to see James. They were very excited all three of them. Neville was certainly most impressed since I had made sure James had Winnie the Pooh nappies on and a Winnie the pooh coverlet over him. We took pictures one and one with James. It was so lovely to see the boys, kiss them and hug them. I felt very sad these days, grieving for James at the same time wishing I could be with the other kids and felt I was letting them down. I knew after the operation James was far from going home within the nearest future.
Later Nigel talked to his parents. They had just returned home from a holiday in Cyprus and had now booked a flight to come over and help us out from tomorrow, and the following two weeks. They are so sweet. It’s going to be nice to show off James.
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