Good news and the daily toil

We were back at Yorkhill on Wednesday for a check up. Erin now weighs 14lbs 6oz so we were quite pleased but the dietician wants to see more muscle development in her wee arms so they have upped her milk intake and concentrated the formula again. She had bloods taken which took three attempts as per : (, in the end the consultant had to come in and get it. They needed 10mls to do her LFT's, clotting and vitamin levels. We got the results back on Thursday and they were mostly good. Her LFT's were lower, Bilirubin 26, CRP 25 and Albumin up to 30. Her clotting was a bit higher than they like so we've upped her daily vit K (again). As her CRP has came down we can reduce the antibiotic dose which should help Erin's poor tummy, she suffers terribly from wind and diarrhea which is just so miserable for her.

We had the community nurse in today to show us how to pass a new type of NG tube that has a guide wire in it, apparently these are the ones we should have been using all along. Unfortunately we weren't sent the right size or number of syringes to fit the new type and the new tube is too short making it difficult to feed her on your own. It's stresses like these we could just do without, especially as Erin has not been sleeping well (i.e. not at all!) for the last few nights so we are all more than a bit exhausted and passing tubes is far from stressfree at the best of times.

We are pleased Erin is doing well in terms of her recent acute illness and are trying to look on the positive side but we are having a difficult week if truth be told with the chronic issues of this bloody horrible situation. I think we are managing to swallow the bitter pill of Erin's overall condition and the fact she needs a transplant, don't get me wrong it still sticks in the back of our throat, but it's the daily struggle thats getting to us at the moment.

You'd think sorting Erin's drugs would be simple but it takes up so much time ordering new meds, handing in perscriptions, picking these up, checking all the volumes and measuring them out 3 times a day, she gets more than 20 each day. I have to order 2 weeks in advance to make sure we don't run out and so many drugs have very short shelf lives once opened its quite a task to keep on top of it all.  Making up feeds is straightforward enough but it takes over an hour to give her each one by the time we've offered her the bottle and put the remainder down the tube so we spend 6 hours a day just doing this. Then we've to try and offer solids 3 times in day inbetween milk feeds, this is just impossible most days as she sleeps after milk and is generally not hungry as she feels so full most of the time.

Then there is her poor poor tummy that is so bloated and swollen. She has had diarrhea for weeks now because of all the antibiotics and she never gets any peace from the cramps and trapped wind. You can spend an hour settling her after a bout of tummy pain, finally get her to sleep and she has more diarrhea. So you change her, she falls asleep then you need to wake her shortly for another feed and the cycle starts again. I feel so bad having to disturb her when she finally gets a bit of peace.

We have so many appointments with hospitals, GPs, health visitors, community nurses, dieticians etc, just co-ordinating things like this is difficult as there are so many people involved, it seems never ending. The rest of the day is taken up with general stress over silly things like syringes not matching NG tubes and arranging deliveries of equipment for the pump and new tubes it just feels like nothing is simple.

I was visiting my GP on Thursday as well as my blood pressure is unsurprisingly high, I think its a remnant from the pre-eclampsia apparently I should of been having it monitored since July, oops. Thankfully it seems to be falling again on its own without medication and the headaches are easing. I don't want to start taking any meds for it in case I go down the route of being a living donor for Erin but we should know more about this next week, my liver may not be up to much at the moment either!

We tried to up Erin's milk as per dietician's advice but it hasn't went well. She has been sick a few times which really distresses her as the tube makes her choke, so we've switched back to the smaller amount until things settle down. In the last few days Erin has really only been happy, settled and awake for a couple of hours. The minute she is there is nothing but smiles, hugs and happiness from her, she is tuly amazing and I'm so proud to be her mummy.  It may sound patheic but the only normal parts of our day today were watching her play in the bath briefly and roll about on her play mat for 15 minutes. I just sometimes wish we could fast forward through all of this crap to get to the light at the end of the tunnel where she can get a chance to grow, develop and play like a normal baby.

Big liver tummy

lovin' the bubbles

fingers crossed for a better week next week