OUR SWEETHEART!!!

The constant worry you have in between heart surgeries. When it comes to be be a Mum I am very confident and calm (if I may say so myself :o), considering. I have had those comments from doctors and nurses anyways and they have seen most kind of people going through disaster. Even If i I have not been feeling stressed my mind and body clearly has anyway. I have been pumping fro milk to the infusion pump. In the beginning I pumped milk to a bottle everytime James demanded more food. Which meant pumping for milk when our little sweet bee was screaming his head off. He ate the milk rapidly and two seconds later through everything up again. Just to start alll over again. During this time he was dropping in weight rapidly. One weekend I was so tired and frustrated because he cried constantly,I tried to give him the breast again. He ate perfectly and kept it!! JOY!! So then I was pumping for milk for the infusion pump and breast feeding. After I became sick at the hospital my milk increased and I never had it back to how it was again. I had much less. I pumped every other hour and tried to drink as much as I could remeber. But no change. So when James started breastfeeding him self I was really happy thinking it will give me more milk for him. Well James is not so strong so he would manage to suck as much he would have needed to create more milk. So if Imanaged to pump a bit for the infusion pump there was hardly anything there for him to eat himself. Which frustrated us both of course. Since he had the infusion pump on 24-7 his blood sugar level stayed steady and his hunger varieted from day to day. One day my breasts felt like they would explode the next day there were not enough milk for him. I have always been breastfeeding my babies and James is extra sensitive to infections and I felt it was mostly important for him to have my breast milk. Well I had even less milk and had to fill out more and more with Infantrini (formula containing extra protein and calories). So how does my brain react to enormous stress?? Well it is the big problem it doesn't react :o). NO MEMORY what so ever!! If I did not have this stress and worries I seriously would have though I had a brain tumour or dementia. Not kidding! James has heart medications for me to remember. I always set the alarm on the 1600 one because it is more likely to go over time than during evening or morning. One example; Well I sat the alarm, it rang, I turned it off and took out the jar off pills to mix, phone rings, I answered and the memory of medications is gone!! Until the person asked if James has many medications. SWEARING!! Quickly I mixed his medications during a breakdown. I go to bed exhausted and I wake up just as exhausted. After many pleadings from the hospital staff if I should not give up the pumping at least, I finally start to finally questioning myself. Would I be a worse Mum to stop giving him the breast milk or stop giving him the heart medications? Well it was an easy question to answer at this time, but such a hard decision to make! To me, being a Mum means breast feeding, I mean between me and my baby absolutely not other Mums! Only breast feeding normally is known to make you have a memory become like a fish ;o) On top of this I have had a sick children at home for three or four weeks now, I live with constant pain because of my arthritis and this time of year it is really bad, James has been having a sling of a virus and I have been running in and out from the hospital like I am living there, I forgot to eat and drink, poor Nigel has been/are super stressed because he has two jobs at the moment and a crazy Italian :o) for a boss +Nigel had Swedish Championships of Brass last weekend (bronze!!). So when i found out James will probably have his next op already in December the stress totally took it because. I went straight into the wall. SLAM! Worries about James´s heart, the other children, Nigel's heart and loneliness made me (finally) hit rock bottom. I had understood from the nutritionist, James would never had been able to breastfeed completely. He needs special nourishment as well with extra calories and protein because of his heart condition which requires more energy. So I gave it up, breast feeding. Now he is without the tube and can eat by him self by bottle. He would never have managed totally only by breast.
I think when you never had a heart child some people only concentrates on the operations, he made it its is over. James came through it yes but he is still a beautiful heart child. It is far from "over". You always worry about your heart child more or less, you do with all your children but in a total different way. To almost have lost James it has made me realise how fragile life is. We have 7 other children to worry about, they thought of loosing one of them of course also comes to your mind. Still two operations left, one very close which brings me back to last time :o(
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by Baby James
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Tube out for now

James pulled out his tube out yesterday. I was out shopping for winter shoes for the boys so Nigel gave James formula instead. James ate rapidly and kept it down. We talked about it when I returned home and decided to let him be without tube as long as he eats what the nutritionist has put on the eating schedule. So far he has kept his medicine and food down. He is such a good boy :o)!!! We closely have written down his eating pattern on a list which we will send to the nutritionist tonight. Tomorrow we will see what they decide. We will keep giving him by bottle unless for any reason they want us to put down the tube again. Originally we (hospital staff and us) have discussed to keep the tube until after his next operation because then he will be stronger and of course we don't want to jeopardise his weight curve which finally is pointing up.

Finally writing again :o)

Yes, finally writing again. Yes, we are home since weeks back.
Everything went surprisingly well after intensive care. Thanks to James :o) our pride and joy (among many).
I have always been very grateful for having healthy babies. I have never been one of those who take it for granted. I remember saying to Nigel many times, "what if he is not healthy"? "I have been giving birth to four healthy boys my luck should be running out any time soon". Nigels reply? "Then we deal with it". I am very grateful for our baby and Im the luckiest Mum in the world :o) Four times i have been going home with babies not knowing what I know today. There are parents living with their babies in the hospitals praying for their lives, today I know how that feels. I can see a Mum come out from a room with swollen red eyes and I can think to myself.; I know how it is, I know what you are probably going through. I wish I could take your worries away. We live with: anxiety, frustration, pain, hope, joy, happiness and sorrow. All piled up together just spinning around like a wheel.
James is doing very well medically and he is finally gaining weight!!!! Which has been our main concern the last weeks. He is on drip feed 24-7 and he takes the breast when he wants to.
Last week we went to the hospital because he had pulled out his feeding tube again (i now put it down myself to spare some trips to the hospital). He had 38 celsius in temperature. If he looses too much fluid his blood gets thicker. Despite for the obvious problems with thicker blood it always affects the temporary shunt he has which can start to malfunction. So instead of being in the hospital for 30 min James, Neville and I spent 5,5hours in the hospital. X-rays, bloodtests etc etc. Everyting was fine so we could gratefully go back home again :o)
Yesterday James started coughing. No surprise really. There is a massive virus going around now including in our family. This morning his coughing was worse. Deep inside of me I started worrying. I could hear the slime was high up in the airways so their was no real concern. I put my ear to his chest yesterday to listen (for the first time) and I was amazed :o) No doubt our baby has a special heart and we are supposed to tell if he need to see a doctor else where. I could clearly hear the flow in the shunt, a blow-sound, almost a mechanicly sound. Loud and clear :o) so beautiful... Anyways, James was going to see his doctor Peter Munkhammar today for a scan. Peter is a very nice doctor and fun. Just what i need. Not a doctor full of himself. I have been in contact with doctors because of my pain for many years now. So im confident around doctors I dont take nonsense from and it is a plus if they have big sense of homour like me :o) But most importantly he is very good with James. James turned really angry when Peter started to do a scan on him. He didnt want him to rub a camera around on his chest. Our fiesty son :o) started jabbing after the doppler and "hitting" his doctor and pushing his hand back and forth. Ha ha ha ha. Well, it ended with me having to hold his little hands which didnt make the little man happier :o( It has to be done one way or another. No escape.
I learned his next operation might be already in December :o( Hopefully he wont be in hospital around Christmas which would mean I cant be with the other kids around Christmas!