September 23rd – Still grieving part 4

The medicine to keep James´s duct opened had some side effects. It made him more swollen in the face, more flem in his airways and apnès. It happened several times when I was standing by him. I/we often saw it before the alarm. I gave him a little push as the nurses did. Of course I have never pushed a baby before so I was too gentle. The nurses came over and gave him one he needed :o). Next time I did exactly like them. Well of course he played up to his mummy and he needed a bigger shake. I/we never got nervous or anything, we knew why and he couldn´t be in a safer place. Well at last I managed it myself, I was so proud I could push my baby to breathe. Something I/we could do to help our baby.
Three doctors arrived and came up to me; one cardiologist surgeon, one paediatric and one anaesthetist doctor. The surgeon started talking, for every word he said I fought the breakdown coming over me. Nigel looked at me from James bedside wondering what they were informing me about. He could see it wasn´t anything positive. They had a negative surprise. We weren´t supposed to be surprised since the other staff should have told us the day before, James’s valve was leaking dramatically. They had found out during a scan the day before and no one had told us, now they wanted him to be put on a ventilator so he had time to recover before the operation. The compassionate surgeon kept on talking and all three of them looked worried at me waiting for my breakdown. He said the operation was put forward to Wednesday so a valve specialist could attend the surgery. I could suppress the breakdown for a while, I felt sorry for the doctors since they had to bring bad news as well. Nigel and I walked into the parent’s room and we had a devastated crying burst, holding each other. One mother opened the door she saw us and closed it again. She waited outside until we were finished.
We went for lunch. I called my mum and they were on their way over to see us. Nigel asked if it was ok if he went home to sort out the house. I said of course. I knew he needed a “break” and I was glad I didn´t have to leave the hospital area.
After lunch I rushed over to James, so I could see him before our guest arrived. It looked so peaceful for him.
I met up with Mum (Anna-Lena), Nan Inger and Rosa at the parking area. We went into the parent´s room at IVA to chat a bit before seeing James. I went in with one at the time, starting with James´s Mormor naturally. No one was prouder than me at that moment. So very proud of our beautiful, brave fighter.
We went down to the main building to get a coffee break before they headed back to Höganäs. We chatted a bit and I opened the gift they brought for him. James was equipped with two very nice sets going in blue and green. From my mum he received an extraordinary very dark grey cardigan jacket. It looks really English to me and special. After a while they could see I was too exhausted and they needed to go back. We said our goodbye´s and I thanked them for coming. I headed back to the hotel and managed to hold my tears away until I came inside our room on the hotel. I put out the clothes sets on the bed thinking how really nice they were and how I would love to see him live so long that he could wear them (and longer of course). I collapsed in bed from exhaustion holding the cardigan jacket close to me. I woke up when Nigel came back and we headed our way back up to James so Nigel could see him now on a respirator.
I don´t know how I coped sometimes. But It´s like my emotions got shut off at times for me to be able to cope and to recover. Breakdowns came when I was alone or with Nigel. This day and the day before were two of my toughest.

September 23rd – Still grieving part 3

Every one of the staff had been lovely so far. This day a nurse’s aid worked, she was new to us. She was really nice to the babies, but very insecure in the approach to the parents. It was obvious she didn´t know how to handle the situation. She stood over us all the time; she informed us about things... she nervously informed us about every tiny thing. Several times she had a nervous laughter and talked down to us. Saying oh I guess you haven’t much experiences of hospitals, trust me you don´t want to be around when they incubate him. I had to bite my tongue. She talked like she was a doctor. Her approach was outrageous. Before becoming pregnant I was studying psychology. My main interest was grieving stages, people going through traumas and how to support and approach people. I have always wanted to try to work in a funeral home. Nigel didn´t pick up on her, I did and I was fuming!! I was quietly crying by James’s bed and she stood over me with her nervous laughter. She couldn´t move away for a bit and she had to keep on talking saying idiotic things. Only reason why I didn´t ask her politely to go away was because of Nigel and James.

September 23rd – Still grieving part 2

I had a horrible nightmare. I had a dream of the doctors performing cpr on James. They were basically jumping on his little chest. I had a good cry to let it out. I was thinking of the funeral sadly maybe to be. I saw a white tiny coffin in front of me with blue flowers around it. It was necessary for me to clear everything out either way it went. I decided to myself if there were to be a funeral, absolutely only closest family would be able to come. Only Nigel, I, the kids and our parents would attend. I panicked thinking of the surgery again, I was sure it would be the last time we saw him alive. All we dreamed of was to be able to see into his beautiful eyes again and to hold him close. I felt so empty. James had been inside of me for a long time. I often walked around with my hand on my tummy, but he wasn´t there or with us. I had never felt so empty before, so incredibly painful.

September 23rd – Still grieving part 1

So incredibly grateful for every hour and day we still have our James. I`m so proud of our boy, he really is a fighter. I´m glad that we didn´t sit around for an ambulance - that would have been total disaster and a waste of minutes. Breathing arrest they could have handled- so would I have done but the closing of the neo duct the ambulance staff never would have diagnosed. 1 out of 20 doctors knew how to save his life. We are talking specialists here. The other 19 in the trauma room were scratching their heads. I was ready to pick him up if he arrested and to call an ambulance to meet us up, all to save time, time had never been so precious. It would have been disaster to have waited.... we were reassured of such a couple of days later.
The medication to keep the neo duct open was called prostavas. I had been thinking about that medication for a while. I knew when they induce labour they often give a hormone called pros taglines to start dilating. I wanted to know everything...I asked a nurse and poor her she was clueless...she had to get it confirmed from a colleague. Felt good to have figured it out by myself of course but mostly I was relieved to know what they were pumping into our baby.
Sweet Per Westrin came in to talk to us for a bit. There was something else that had been on my mind. He still had the scent of it, to me very strong. I asked if James´s acetonic breath at home was one of the signs of him being toxinated (they can have that during fever as well). Per turned very quiet just stared at me for a while. Then he said, “wow you know not many can sense it”. I must have looked like a question mark. He continued and said “only 25% can feel that special scent”. I was gobsmacked! When the boys have a fever they only need to get close to me. I can smell they have fever, obviously the scent wasn´t as strong as with James. I thought aha, that´s why Nigel couldn´t feel the smell I was complaining about. Well you certainly learn something new every day.

September 22nd – Chaos part 4

We went up to James to see him and kiss him. It was impossible not to cry when we saw him. He didn´t deserve all of this, our beautiful and precious baby boy. My body was aching. Stress made me tense all my muscles, including where I have the arthritis. It was hard for me to see Nigel so upset. I felt guilty. Still in shock I had the weirdest thoughts. The way I talked on and off must have hit Nigel hard. In the beginning I had doubts it was right to put James through all the suffering. Maybe it had been best for him to go to sleep? I felt selfish that he laid there suffering for every breath he took. I panicked only thinking of the doctors cutting my baby up. Several times I have seen on TV when they had performed heart surgery on babies. But not MY baby! Nigel helped me through it. Luckily Nigel has a gift of words and he is an incredibly compassionate man.
Sms came one after another with many supportive messages. It meant so much to us! Even if we didn´t reply to all or call up you can´t even imagine how much it meant to us. Nigel had called all his friends for them to start prayer chains, that was his mission, to make sure people was praying for our baby. People we knew and a lot that we didn´t know. Nigel was also able to talk more to others than I. For me it was harder and I was clinging on to Nigel, he made me feel safe, as usual. I had a worried message from my Nan so I called her up and I couldn´t hold back my tears. When I sent out the sms about James being close to death, I felt guilty because I didn´t want to worry anyone. Even worse it felt when I didn´t have the strength to call or sms back. I talked to my parents of course. My cousin Becca gave me a call and we talked for a while. Something which had struck me more than once, James was so lucky Nigel was his daddy and I was very lucky he was my husband. If something similar had happened to any of my other boys I would have been totally on my own. Becca agreed.
I talked to my mum. Mum, my Nan and mums friend would come over the next day to see James for the first time. Mum would be coming over from Norway, where she lives.
Totally exhausted Nigel and I snuggled up together in bed and fell asleep.

September 22nd – Chaos part 3

Annika arrived with Timothy, Mårten, Sofia and Emil. She has been a real sweetheart taking care of Timothy we are very grateful, thank you! The kids first played down in the playing area. We took some pictures of them and we chatted a bit. I had a period of calmness when they were around. We went upstairs to see James. T, M, E, S walked in one by one washing and disinfected their hands before going up to James. They held his hand and we took a picture each of them with him. It was surreal to see healthy lively children, gave us even more of a feeling living in our own world. But naturally we missed all our precious very dearly.
I was desperate. I was 99% sure James would die. I was already grieving his death. I wanted the other three boys to come and see him before he died before it was too late, especially to take pictures with James. What happened if James died, and three of the children didn´t have any pictures with him? It would be cruel. I called my father and he promised to come over with N, C and ET Monday afternoon. I relaxed a bit.Doctor Per Westin came in and said he had to get a needle into a vain on James so they could measure the CO2 in the blood which was very important to do. He had tried the day before with no success. James body was very sensitive and stressed - he had a lot of adrenaline in his system to keep him going. His body was on guard to protect itself from outer “threats”. Every time Per tried to put in the needle the vain closed so he couldn’t get the needle in place. They gave James local sedative of course. The first tried the arms and legs, Per tried several times in every limb. When it didn´t work he tried his groins. James was much stressed, he cried, had spasms and got so stressed he forgot breathing. I started to panic inside, I didn´t want to leave my baby, it felt like I would let him down. The nurse gave glucoses orally as extra comforting painkiller. Per kept on trying and James started to look like a colander. I got more and more protective and just wanted to move in between the doctor and my baby and protect him. I knew it had to be done to help James but still I just felt like giving the doctor a sweet knee. Finally he stopped. He said he would give James a break he was too stressed and he would talk to his colleges. We went up to James and talked to him for a bit. Per came back and said they would keep on trying for a while because it HAD to be done “there can be no compromise”. Nigel and I decided to go to have tea. We went out from the ward and I couldn´t hold my tears back any more. We stood in the hall for a while holding each other until I had calmed down. Another wiping of tears and headed for tea. Oh, I didn’t want to sit there among all the babies, some held by their parents, some kicking around in their mini cots or in the arms of their parents. I didn´t want people looking at me, it was obvious I had been crying my eyes out. I was sitting there in a breastfeeding top without a baby with puffy eyes. It was clear for the other newly parents, that our baby wasn´t well. If I looked up I had a sympathy look or I could see they were discussing us. My mobile went off. I answered and it was Per Westin. He said the needle was in, he and his college had been shifting turns. But he had made it. I got so silly happy and called the chief paediatric “good boy”, well that made him laugh. We knew he wanted to succeed and didn´t believe in failure so we were both pleased he made it instead of another doctor.

September 22nd – Chaos part 2

We made our way over to Children’s Intensive Care to see our prince. Nervously we walked into the ward.... all kinds of monitoring equipment were connected to James. Thankfully neither Nigel nor I are scared of hospital things and have seen this equipment before. Honestly, it calmed me to see all the monitors, it made me feel our baby was safer. James was awake but he couldn´t open his eyes because they were too swollen. He could hear our voices and he started to make more sounds. Grunting sounds he made with every breath he took. James was fighting for every breath. He didn´t receive any oxygen since it had made him worse.
The left heart syndrome basically means that the left “pump” that takes oxygenated blood to the body is nonexistent. James’s blood is basically a mixture of red and blue blood pumped by the one and only right “pump”. The pump normally provides flow to the lungs so providing more oxygen would have made him more intoxicated and further disturbing supply to the body. Staff were fantastically supportive and explained a little to us.
It was hard to hear James. I wished they could have put him on a ventilator so he didn´t have to be so anxious, as it is when it is hard to breathe. From his mouth bubbly foam came out nicely by itself so they didn´t have to suck his airways. It cheered me up a tiny bit.
First time I came into the room to see him and he had a blanket over his face, I walked up to him pulling it down thinking what are they doing? He is not dead yet! The nurse explained to me, they did that to make him breath in his own CO2 to try and balance his blood to body and lungs.

September 22nd – Chaos part 1

We woke up as we went to sleep. Only thing I could see in front of me was James´s grey face and staring eyes. I had been calling the ward a couple of times during the night to make sure our sweetheart were still with us.
I went into the bathroom to get myself ready for breakfast. I had another breakdown. Cried for a couple of minutes and wiped the tears away. I looked in the mirror and I thought to myself. Blimey!! My eyes were totally swollen up and red. I couldn´t see myself in the image. It was like it was someone else in my reflection.We went down to have breakfast. One incredibly tough thing to do since only two days previous we were down in the same place with James, just as the other parents with their babies. I was really fighting not to have a total breakdown in public. I cried quietly. It`s hard to explain how we were feeling... more than that we were of course in a total state of shock. It´s like being in another dimension, in a bubble, your own world. You go from numb to have total break downs. It hits you rock hard. From one minute to another. If we weren´t crying holding each other, I was comforting Nigel or Nigel comforting me. So even in a state of shock we complemented each other. :o)

21st of September – Trauma part 3

Luckily, Lund is the absolute best Hospital in the world to deal with these operations. It totally struck us again - the shock kept on building up...we were totally traumatised. Later we made our way up with James to the Child intensive care unit. I hoped it was all just a bad nightmare and we would soon wake up from it all. James’s bed was placed in room number 4 and they started connecting all sorts of things on him to keep him very closely monitored. James temperature was down in 34 Celsius. We were well looked after, received some information but I was in my own bubble. We both were in a grave state of shock. We went outside the unit for a bit to sms and call around to let people know what had happened and organise practical things. All we wanted was to let as many people know as possible so they could pray and cross their fingers for our James.
We went back inside and received information that we would stay at a patient hotel within the hospital area but we were welcome to sleep the first night in the room next to James. But we felt safe to leave him monitored and they had our numbers and we could call them whenever. We went over to James`s bed to kiss him and talk to him. He started to get a bit of more colour to him, but far, far from well. Doctors went in and out to check more on him. James had still this grunt breathing. But they didn´t give him extra oxygen or put him on a ventilator - though that would worsen his condition seriously. He had all the other equipment though. They checked his breathing frequency, oxygen level, how much co dioxide he had, pulse, blood pressure etc. We couldn´t get enough of kissing him and talking to him. James being still alive was a huge miracle. We were proud and considering all the shock we were very happy he was still alive. Only some hours earlier we took for granted he would be with us, we had a healthy baby. No worries. Now we found us to be grateful if we had one hour or one day more with him.
We decided to sleep at the hotel after all. We were totally bushed both physically, mentally....James was safe. We went asleep crying holding each other.

21st of September – Trauma part 2

His eyes were staring forward and he had a very low frequency in breathing. His body functions closed down to minimum. His head fell forward and I tried to hold his head up to free his airways. I begged him to keep on breathing for mummy. During this Nigel drove as fast as he could without us risking more lives or James even more. During this the hospital called back to me to see how far away we were and she reassured they were expecting us at child ER and she said step on it. Oh Nigel did! He handled everything amazingly. I kept watching James and expected that he would stop breathing completely after every breath. Traffic was a nightmare. Red lights and waiting for other cars. I was upset swearing at the cars of course. It was a ten minute drive. Finally at child ER I got him up from his car seat, I ran out from the car with him in my arms. Inside the building I found myself having a dying James in my arms, standing in a stair room with stairs or elevator. I took the stairs. Two stairs up, I ran in corridors following signs and finally found the correct door. A nurse pointed and I ran into a room with a trauma team waiting by a baby trauma bed. I ran in and put him on it. I relaxed a bit.....just a bit. But I knew for some reason he was dying on us. He was in their hands now and we had done all we could for our beloved baby boy. Two paediatricians were there and a children’s nurse. Two minutes later James stopped breathing. Two or three more doctors rushed in. A doctor started James´s breathing again with an Ambu bag mask. Poor Nigel came in, found a chair and sat beside me. We held each other and cried totally devastated. A nurse asked if we wanted to go out from the room and wait in a separate one. I said no way and Nigel felt the same. I thought if James died his mummy should be there. Looking up there was now 18 doctors and specialists in the room. The first thing a young doctor told me when he listened on James heart was that “well luckily it´s not the heart and his circulation is fine” Both me and Nigel looked at each other and went “phew”. The doctors discussed back and forth and made phone calls for more help. I don’t know which time scale all this happened, it felt like hours surely we are talking minutes. A tall grey haired man with green clothes and hat walked in and asked for details and checked James symptoms. He came up to us presenting himself as Per Westin (chief paediatrics) and said that they would give James a medicine for something they expected he had and that would make him a lot better if that was the case. A few minutes later a cardiologist came in with a scan. It didn´t take him long to turn around and inform us that James had a very difficult, complicated and rare heart syndrome. HLHS, Hypoplastic Left Heart Syndrome.

21st of September - Trauma part 1

I had been up during the night because James woke up crying and I thought he was hungry. But he didn´t want to eat. He fell asleep by my breast, without eating but he was close to me and he was pleased. We went back up to bed. In the morning I started to worry more about James not eating and he smelled of acetone from his breath. I thought he had a fever due to being dehydrated. But he didn’t have a fever. I called the breastfeed helpers at the hospital and they calmed me and said it is not unusual that babies are sleeping a lot more the first day or two after birth. I told them that he was awake and screaming loudly in between. He wasn´t weak and exhausted in a way, but by my breast he wasn´t interested at all. They gave me some tips to try out that I already had done but they told me to keep trying.
Nigel asked if he could go to work whilst the kids were at school and child care. I said please stay at home today. He said “ok of course I can work from home today.” Nigel was holding James on and off in between working as well, whilst I had an unpacking fit from everything we had at the hospital. I finished James’ door sign and was happy to get everything done. At 14.20 I started to worry after several attempts to get James to eat. I decided to call the breast feeding helpers again at the hospital. The lady I talked to took it more seriously. I said I have breast fed four babies before and something is wrong. I said he was a tiny bit yellow on his face just as babies can be in the beginning. When they have a high level of bilirubin it can strain the liver and babies might need “sunning”. I thought he might have a high level but the yellowness maybe was late or something, I was clueless. They wanted to have a look at him just in case, I promised to try again first. She told me to unclothe him a bit so he didn’t get too warm to eat. So I did. Nigel was sitting at the dining table working and I told him what she had said and that I had to make my way to the hospital with James. M, E and S were at Annika’s so I asked if he could pick up my boys from school etc. Meanwhile I gave it a last try. I pep talked James, pressed out milk and he took actually fours sucks and stopped. For the first time I held him under his arms supporting his neck to talk to him and kiss him before I got us ready to go. Doing that he relaxed his body closed his eyes. I said “wake up James” “hello”? Nigel came up to us and said “he is way too cold his legs are turning blue”. James opened his eyes and started to get ash grey in his beautiful face. Nigel and I looked at each other saying something is wrong. James started grunt breathing. I have heard it before and knew what that meant. I called back to the hospital, I said “ambulance or drive”? She said “DRIVE!! I´ll alert Child ER”. I said “we have to go now Nigel”. We started to get ready. Ten seconds later James went into shock. His eyes were open but he wasn´t with us. Nigel put him in the car seat I ran over to the neighbour pleading for her to pick up C, ET, and N because their father would soon pick them up as well. She said “yes of course just go” I ran back to the car and we left in a hurry. It was the longest car ride of our life. We both stayed unbelievably calm considering. I had been around a handful of emergencies with other people and with Colin. I kept a cool head and thought rationally with what was happening but didn’t expect that I would manage to cope when it happened to my baby. Only thinking of that scenario I imagined I would only scream in panic for someone to help me. Nigel called Annika to ask if she could take Timothy with her home – we were very grateful that she could. I sat in the back with James.

20th of September-Welcome home James!!! cont.

That night we went to sleep the three of us in our bed. I was exhausted of course, but it was so nice to lay there with our baby between us snuggling. We took turns on kissing, smelling him and talk to him. Of course Nigel and I shared some as well.

20th of September-Welcome home James!!!

In the morning we went to the patient hotel, to eat breakfast, and for James to see the doctor to get signed out and have lunch. I/we had planned it, I wanted to go home early as long as it was safe for James. Nowadays you can go home after 6 hours, we were there for 12 hours. Going home was nice, I was exhausted of course but I/we wanted him in our home and for all the kids to see him before the weekend came and they were scattered over the weekend. Elliott (ET), Timothy (T), Colin (C) and Neville (N) came home first to greet him. It was a very nice moment - they had been waiting almost just as long and seen me in more pain than usual. Nigel went to fetch Mårten (M), Emil (E) and Sofia (S). They had their proud moment too to greet him and finally see the baby we had been talking about.
James showed a bit of a temper he went from sleep to full crying. He was blue on his feet and the hands. But all mine had that before because it takes some time for the circulation to really kick in. Blankets and extra socks was what we helped him with. I struggled to get him to breast feed more than the first time. He had not much of a searching reflex and when he had he fell asleep. Also very usual in babies the first 24-36 hours.,,,to be continued

19-20th September

I woke up on the sofa (where I had slept the last weeks) and found that my waters had broken. My first thought was, blimey I´m destroying the sofa! Second, how lucky we are that he came spontaneously early just in time before being induced. We went to the hospital and the staff and I agreed to wait 24hours to see if contractions came by itself. On the way home from the hospital my waters really broke hahahaha. In the car! First thought, now I`m destroying the car. Second, blimey don’t come in the car. Well he didn´t. We went home and completed the packing for his arrival and then we waited. I had a big contraction now and then during the day but nothing regularly. Gladly the craft material arrived for the door sign I was going to make for James and two frames with room for all the children including James. So he would have all of his siblings with him everyday even when they weren´t with us. I started painting the door sign instantly I had been waiting for that to arrive for quite a while. 22.00 I laid down on the sofa to get some sleep. I woke up 01.15 to go to the toilet. I had contractions coming frequently. 2 minutes later I realised that if we didn´t go then we wouldn´t make it in time. Nigel had meanwhile woken up from the other settee, I made sure he knew it was time to go instantly and he had to call our neighbour to pop in for the kids and to call my dad to come from Höganäs. Then we were off. My contractions were really bad in the car and of course men are doing the roads, so they are all bumpy :o) . I was sick in the car and I had contractions nonstop. Arriving at the hospital we finally came into the room where he was to be born, which of course was room 7 (James Ward 2007). After being monitored for 5 minutes James heartbeats lingered down frequently until it stopped. I tell you I thought that was the worst thing I have ever heard in my life. I remember I cried out, my baby my baby!! And I looked at Nigel who was just as shocked as me. Alarm went off, the midwife came running and she pushed me over to my left side lifting up my right leg, and we could hear the beautiful sound of his heartbeats echo beautifully in the room. Happy for our baby I thought I would die of the pain in my right hip that they had to hold or his pulse went down again. They had to do a lot of things and poking to make sure he could come out safely without caesarean. All I was thinking about was to get our James safely out. At the same time I was traumatised of all the pain, worries and I felt violated from what he staff was doing to me, even if they were there to help us with all our best interest at heart :o) . Suddenly they wanted me to push, all I had was horrible contractions. I pushed on commando and I had three holding me pressing my tummy to get him out. Out he came our beautiful boy!! All this I was going through happened in 31 minutes. That´s how long we were at the hospital. For me it felt like hours. I was 8cm dilated when we arrived at 01.40 and he is born 02.11. I wasn´t surprised since I have had four fast deliveries before. James was feeling great when he came out, so lively and gorgeous. Now we could finally get to know him and have him in our lives. Naturally we took many happy pictures, no one was happier than us in that moment. Shortly after birth James breast fed for the first time. I was so happy I had been looking forward to that. Among many things to look forward to when you have baby. We finally got to kiss him, hold him, see him, smell him and celebrate his arrival. So we did with the traditional silver plate of sandwiches with champagne glasses with cider and the Swedish flag. Plus Baileys, of course :o) Nigel promised me when we found out I was pregnant. Just a nibble by all means, but very festive for me. We all fell asleep later. Nigel in the comfy settee, me and James snuggled up together in the birth bed. I felt so complete, so proud and very happy the pregnancy was over.