Day 31

We are continuing to enjoy our new found freedom and are able to go out with Benita in the afternoon between 2 and 4pm. This makes the mornings so much more bearable knowing that we can escape together in the afternoon. We also signed a form enabling us to leave hospital grounds which is all the nicer. Yesterday we went to the park next to the hospital, found a nice shady spot and spread out a blanket. Benita lay down between us and was asleep in no time. Stef and I just lay there looking at her and couldn´t have wished for anything more! Today we put her in her pushchair and went for a longer walk down to the river. We stopped again for a break and when I looked she was pulling at the grass. She was exhausted when we got back to the hospital and out for the count at 5pm! Here´s a couple of pics of her yesterday and one which our physio took of the 3 of us last week…isn´t Benita like her Daddy?

Day 29

Our beautiful babe was allowed to go outside with us for an hour today and we enjoyed every minute of it. She hadn´t left the hospital for 3 months and I am sure she delighted in getting some fresh air! Those big blue eyes were gazing at the trees, the flowers, the sky, the cars, people, she didn´t quite know how to take it all in. It was just great to be outside and be relaxed as normally when I leave the hospital during the day I am still wondering how she is the whole time. So hopefully we will be able to go out now most days, this would just make all the difference to be honest. The other good news is that the fresh air probably gave her a bit of an appetite which was great as the docs stopped her feeding yesterday and the pressure was on to get her eating again. Actually they were really starting to do my head in but Benita showed them all tonight who is in charge and downed a bottle of milk before bed. You should have seen the concentration on her little face and she was drinking so hard I couldn´t have pulled the bottle out of her mouth if I had tried. We were all quite surprised and so pleased and so proud! She is so funny, she was so chuffed with herself afterwards that she was lying in bed telling us stories, so cute. So she fell asleep and we hung around to see if she would manage to keep the milk down. After half an hour she woke up crying and I went in to her. Stef brought in another bottle which she almost grabbed off me and proceeded to drink half of it, eyes shut. Afterwards she burped and fell asleep. I just called the hospital and she hasn´t murmered since……what a little star!

Day 25

So many of you loved seeing the latest pictures of our girl so I thought I´d post a few more, also as a wee present for my Dad for Father´s Day! She has had lovely new clothes from Sian and her Granny and is definitely the best dressed babe in the hospital:-) And the prettiest, not that we are biased at all….

Day 24

I was so fed up in the hospital today, everything just got on my nerves. Thankfully we went for a wander into the city centre this evening and got some fresh air, it is hard being stuck inside all the time. So how is Benita? There is not that much to report at the moment, her white cell count is continuing to rise and the doctors are all very pleased with her blood test results. Until she comes off the morphine we don´t expect to see much progress so by this time next week we hope that we will see some improvement. She is weary I feel, sleeping a lot but still doesn´t really wake up refreshed. I think she is still very nauseous and is still being sick and I think she has kind of had enough at being stuck in there too! There are still plenty of precious moments though and this afternoon we were down on a mat on the floor and I was lying on my back and she was lying with her belly on my tummy and proceeded to crawl up me to try and grab something behind my head. We have had so many cuddles over the last few days and she has also had a few sleeps in my arms and I have to say she is getting so big…what happened to my little baby?!

P.S.

..The other fabulous news is that we no longer have to wear masks and can kiss our baby girl again:-) The inside door to her room has been opened up and before long we hope that she will be able to leave her room for brief periods. It makes such a difference!

She only needed a tiny bit of oxygen for a matter of hours which is quite normal when the white blood cells are going mad in her lungs. I had the lovely job of removing the plasters today…joy!

Day 20

..we are all surviving and in fact, today was a good day, a really good day! Benita was in great form and full of smiles and fun, she just has the most amazing spirit, I don´t know how she does it, I am still feeling the strain of the last couple of days. When we went in to see her on Sunday morning she didn´t look good at all. She had bad fluid retention and was just staring into space. To begin with we just thought she was tired, all she wanted to do was sleep. By lunchtime she still hadn´t really woken up properly and was like a zombie. The doctor switched off her morphine drip but they weren´t convinced that that was the problem. However, 3 hours later she was back with us so for us the only explanation is that something went wrong with her morphine and she had been given a dosage which was way too high. The problem we then had was which level to start up on again as we couldn´t take it away altogether. As a result she probably didn´t really get enough morphine all night and she was really uncomfortable yesterday until we were able to get the dosage back on track. What a nightmare, it was horrible seeing her so spaced out and so fed up yesterday. My patience was really wearing thin yesterday but I am feeling a little more balanced today! On a high note, her white cell count is up to 2.800 which is just fantastic and we received a card today from the donor which was so nice and really cheered us up! We will be able to meet him in person and thank him properly but not until after 2 years have passed by. It will be worth the wait!

Day 17

Well the good news is that Benita´s white cell count went from 600 on Thursday to 1100 yesterday and 1400 today. We are delighted. The not so good news is that her little body is working overtime and the marathon is tough for her. She didn´t have a very good night and we ended up driving back to Munich last night and staying in the flat there. By the time we got there she was asleep but I just wanted to see her and make sure she was ok. I was back in at 7am this morning and I was the first person she saw when she opened those little eyes and such moments are just precious. When her smile breaks out and beams all over her little face I could just eat her! She was tired though and just uncomfortable really. Bit of a sore tummy, often sick and by this afternoon she needed a little bit of oxygen as she was exhausted. Everything is completely normal according to the nurses and doctors but for us, it is our little baby girl and nothing about any of it is normal. The hospital is getting to us, 10 weeks today. I don´t know how people put up with everything for much longer. We are just so grateful that she is doing as well as she is and we are hanging in there but we are whacked tonight and ready for sleep. Stef´s sister and her family made us a fabulous home made album of Spring with pictures, cards, poems, pressed flowers, feathers you name it! They collected all sorts of things from days out and walks and so now we even have everything we have missed seeing with us. We are so blessed. They even dipped a page in the lake they often visit with the caravan and left behind traces of ice cream on another! Precious, it made our day:-) So I am off to turn off the tumble dryer, make the bed (hardly worth it now, but still), find clothes for the morning, wash and dry my hair and then sleep….and not a minute passes where I can´t help asking myself how my girl is….