Wednesday 13 June 2007

update 13/6/07

Today things are looking pretty good. Max and Blake have both been placed on continuous feeds (at the rate of one ml every hour) and seem to be tolerating that tiny amount at the moment. I think tomorrow it will go up to two ml every hour. Max is going ok on the antibiotics and seems to be much better in himself (although he does seem very "yellow" to me tonight, I won't be surprised if he is back under lights again soon!) Max also has a gunky eye but is being given Chlorsig cream and it seems to be sorting itself out.

Poor little Blake has had a bit of a mishap overnight with the IV in his foot :( The fluid they put in through this drip is called TPN and it is quite nasty stuff. It has all the fluids and calories that they need but it must be quite acidic. The point where the needle is put into their little arms and feet often gets red and sore and they need to remove them and put them back in a different position every few days. Last night Blakes vein in his foot where the drip was inserted packed it in and the TPN fluid seeped out into the surrounding tissues in his foot. Some also leaked onto his skin and today he has a very swollen and red little foot and ankle and also a little burn about half a cm in diameter on the top of his foot. It looks really nasty and the skin there is all dead (it will come off like a scab eventually and will probably scar.) The nurses actually told us that it is not such a bad one and that often bubs need to have plastic surgery and a little skin graft when they happen :O OMG!!! I am really nervous that it is going to happen again to the poor little buggers!!

To try and fix this problem (because the boys seem to be needing the drips a lot longer than the Drs thought they woud be needing them) they are going to try and put PIC lines or long lines into both of them. These are catheters (tubes) that are inserted into a vein in the arm or leg and fed right up and into a main vein in the chest. They did try to do one in Blake tonight but the Dr was unsuccessfull and gave up for the day. He is going to try again tomorrow and also try to get Max's done too.

ok - now I am ready to update my post from Monday and fill you in on what has been happening with those tests I was talking about. I don't want to be dramatic and I want to stress that at this point we still know nothing and don't want to jump to any conclusions... OK, here is what I originally typed on monday :

"Now for both of them - Today the doctor came up to me and asked if he could give me an update on the twins. After explaining the other feeding issues and Max's illness he then went on to explain to me that the boys had routine head utrasounds on day one and day seven. The scans from day one showed a small white patch in the cerebral cortex for Blake and fairly normal for Max, but by the day 7 scan both boys were showing these white patches on the scans. I was told that this is called cerebral odema and it may or may not mean anything of consequence. Basically they will repeat the scan in another week and then we will have some sort of idea about what we might be dealing with. It is possible that this will just disappear all together, or it may be that it indicates some damage to the nerve fibres in that part of the brain. The consequences of that scenario are still pretty unclear to me, except that I know that is the part of the brain that deals with motor skills (movement) and the dr hinted at the chance of something like a weakness down one side of the body etc.. I really don't want to speculate about this right now and I can't even really talk about how I feel for fear that I might fall apart.... it is easier just to try not to think about it at this point, especially seeing as we won't really get any answers until after the next scan anyway :("

Emotionally today has been a real mix. On the one hand I keep feeling sorry for myself - like when I am reminiscing about the births of my older three kids and remembering those first few weeks (or hours even) when we got all the photos and cuddles I wanted and I have those memories of those first newborn days, then I think about the twins and their entry to the world. I didn't hold them at all for three days and the only photos I have from the first moments are in the isolettes with the oxy-domes over their heads and their little chests looking all collapsed in as they struggled to breath. They weren't being held by me or their daddy and they have barely been held since. I feel like I have had the first few months effectively taken off of me and I can never regain that time.

On the other hand I know how greatful I need to be that I even have two babies that I will eventually get to take home and cuddle. It came so very close to being a tragedy for one or even both of my boys and I have to be greatful for the way it has turned out.

2 comments:

Chris Millar said...

Hi Marnie, I'm a scrapbooking friend of Kims and I just wanted to leave you a comment and say how very brave you are. I'm thinking of you and your family and hoping for many wonderful days ahead for you all.
All my best wishes, Chris.

Shazz said...

hang in there marnie...i am sure the road ahead seems very long and windy and tough at times but please know that the love and prayers and well wsihes from so many people are with your precious boys and you, dan and the children, your extended family and friends.
sending lots of love and hugs your way xxoo