"BEFORE I START INFO UPDATE: childrens intensive care unit is extremely short of cot sheets and blankets, and suitable baby clothing. sleepsuits with poppers everywhere are great but especially any outfit that can be unpopped in every direction without moving baby. Because so much time, money and care is being given by PICU I would ask anyone reading whether they would please donate anything they can to the unit for other sick babies benefit. Ordinary single bed sheets can be cut and hemmed - they dont need to be from mothercare - just cotton and the right size without loose threads. They are also short of baby socks and scratch mits. No knitted items as they have been banned, much to the nurses disappointment, because of a heath and safety ruling. bah!
this morning the team of consultants working on theo's case will be discussing what to do with him.
His situation currently is thus - stability has been jeopardised by the fact that the chest drains are unable to reduce all the excess fluid in his pleural cavity - the area beneath the lungs into which they expand when you inhale. The back pressure of blood in his heart is preventing the thoracic duct from working properly which means that lymph fluid - chyle - is unable to drain through the correct passage and instead is leaking into the cavity. This condition is known as 'Chylothorax' and (simplified) is not uncommon in patients with heart problems.
The other point of discussion is a 'Septostomy' which is a surgery on the heart which may be able to help his heart function sufficiently to prevent organ failure. It will not cure his heart. You can imagine how happy we feel about this.
Yesterday I spent all afternoon with him and was delighted to see him 'awake' several times though unfortunately for him it was because there were so many reasons for doctors and nurses to prod him, take blood etc so poor theo really needed to be asleep and couldnt. He kept rolling his eyes as if to say 'bloody hell, not again'. I was told I could have another cuddle but that also fell by the wayside as there simply wasnt an opportunity. I was pretty upset by this but I have to bite my lip and rationalise that its more important for him that he gets the medical attention - then hopefully it will mean cuddles for the rest of his life and not just for 20 minutes once a week. Providing that isnt the sum of his life.
His heart rate had increased and he was struggling with breathing again. He had also had a temperature and his feet and hands were cold again - this is probably due to poor blood pressure not pumping blood far enough with enough force to reach extremities. He had a pair of socks as mittens.
I cant speak for Colin but I am starting to really feel the strain of this situation. It is hard enough adjusting to not being pregnant and dealing with hormonal fluctuations but the maternal need to feel baby in arms is driving me insane. I don't want to alarm people but as mostly when I speak or see people I think they get an impression of calm and that I am coping 'admirably' as someone said to me..I ask anyone - what do you think would be a standard reaction to knowing your new baby is probably dying before you ever got to see his smile? and then try to look beyond my calm expression (which is really for Sacha's and Tabitha's benefit). Of course, we live in hope and I am still expressing milk with the intention to feed him myself WHEN he recovers. But it doesnt change the terror I am feeling and the heart bursting anxiety I experience whenever a doctor approaches me to talk.
Let's hope the next update can be light hearted again."
Willow
3 comments:
from the sound of your last message, you appear very angry. All I can suggest is that it's ok to feel this way, just don't give up. I know you like to be the boss, and feel in control, that's the person you are, it's just this time, you're not, and you have to accept that. Just let the staff and friends take over, and just concentrate on being there for Theo, after all, all you can do is remain strong. If you need a cuddle, you're surrounded by family, friends and little children who want you in their arms too.
Has the hospital put you in the charge of a counsellot yet? If not, please ask for one, as it's too much for you to carry alone (both Wee and Colin)
love you all,
amanda & chris
xxx
not sure why that last post came up as 'ravi' xxx ???
Oh Willow, Theo looks so much like my Ava - big blue eyes and a mass of dark hair. My heart's breaking for you. I'm always thinking of Theo and how things must be for him now. I can't imagine how you must feel not being able to cuddle your beautiful baby but I just hope you are able to try to live moment for moment the best way you can. You are living through such a difficult time (any mother's worst fear, of their child being in any danger)- I just hope it's some comfort that you and little Theo are certainly so very loved by all your many friends and that with all our support and the love of your family you'll find the strength you need at this time. Do make sure you allow yourself time to cry too though- it'll do you some good to have a release.xxx (I won't give any other advice than that I promise... with everybody being so different in the way they try to cope with things) X Love from Trish and family
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