Almost home

Today William breached the three kilogram mark.
We were very excited, not only because of the milestone his weight gain represents but because we are planning to bring him home this week. Steve Cooper, his cardiologist, talked to us again yesterday and confirmed that the plan to discharge him at the end of this week if everything was going ok was still on target. William has gained enough weight, is gradually progressing to more breast feeds, is not in acute heart failure and is otherwise stable enough to go home. He will have blood tests, an ECG, chest x-ray and echocardiogram tomorrow and if they are all ok, we will bring him home on Thursday.
We are so excited!
We are of course a little apprehensive as well. Managing William's care and coping with two other children will be a stress but the effort will be definitely worth it.

Amost three kilograms

William has generally had a good week. Apart from one day he managed to gain weight most of the week and today was hopefully the last day under three kilograms. He was 2.97 kg this morning!
William is now getting three breast feeds a day with five tube feeds. He has been vomiting a bit and this could well be because he is just getting too much, he is getting too rich a feed (with the added calories in his tube feeds) or because his dad sometimes picks him up too early after a big feed. There is also the fact that babies often do do this. While he is growing and is not in heart failure we all seem prepared to accept a little regurgitation here and there.
Caution has been a feature of the medical decisions this week and William has not been allowed out of the ward again this week.
Getting home has become a goal with tomorrow marking William's seventh week of life. We naturally want him to be as safe as possible but if we can do all the same things at home as we are doing here, we would much prefer to travel back for regular review rather than stay in hospital. We do long to have all of our family in the one place and feel that we are not just visiting.

Into the sunshine

On this morning's rounds, the decision was made that the oxygen saturation monitor would only be needed when he was asleep and overnight. The upshot of this was that we could take him out of the ward, and actually out of the building! William got his first feel of sunshine on his skin and outside air, unfiltered through air-conditioning!
I carried him down to Ronald McDonald House to introduce him (or show him off) to some of the people down there. It was lovely just to have him outside of a clinical environment, to be able to sit around a table and chat while holding our little boy. Of course he slept through most of it but that is fine – it will be the first of many outings for him.

Progress report

William continues to improve but slowly. His weight has remained over 2.7kg for the past three days and he has been deemed to be stable enough to no longer need continuous ECG monitoring. He still has an oxygen saturation probe measuring the concentration of oxygen in his blood as well as constant monitoring of his pulse but the machine measuring this is considerably smaller.
William has been moved into a single room and so this is much better when his brother and sister are visiting. It contains the rumpus and ruckus and disturbs other patients considerably less!
William is starting to spend more time awake and we are beginning to see some more of his personality. He is recognising his mum and dad and he seems to be able to charm the majority of the nurses on the ward.

Slowly does it

William has been progressing slowly. We are carefully watching his weight and are happy that he has gained slighly in the last couple of days. (He has reached the 2.6kg mark!) His kidney function has returned to normal again and he seems to be coping reasonably well without the captopril at this stage.
He met another photographer today - this time for the Children's Hospital Calander for next year. He refused to smile for the camera (or even open his eyes!) so he will probably not make the cut.
The lack of news is really encouraging for us. We hope that the weight gain continues and that his ability to feed orally continues to gain momentum. The moment we are longing for is the day we can take him home.

One month old

12 May 2006
William has been struggling to put on weight in the last few days. He remains hovering around the 2.5kg mark. We can't help focusing on his daily weigh in and feel that little bit disappointed when he looses and elated when he gains. When he cries during blood collection we tap our feet and wonder how many extra calories that is using up. One day I am sure we will look back on this and wonder why we were ever worried. Until then we will probably continue our mini-celebrations with every 30g weight gain.
William's kidney function took a turn for the worse this week. The medical opinion was that his captopril (medication which helps his heart but can affect his kidneys) was to blame. The daily blood tests did improve after the medication was ceased. He had a renal ultrasound which looked ok, a chest x-ray which seemed fine and an echocardiogram which was all in order for William's particular circulation.
Today William was visited by a professional photographer! He is the subject of an article in the Bulletin Magazine, due to be published in a few weeks. The story of his antenatal intervention is to be the focus of the article. We spoke to the journalist on Monday about this amazing procedure which now seems so long ago. A lot of water has passed under the bridge since then and certainly there is a lot more to come.
We did of course celebrate his one month birthday on Wednesday and are looking forward to his second.

Smiles

7 May 2006
It has been a big weekend of visitors for William with Pos and Pa bringing Liv and Tom back up, and visits from his aunts and uncles and all his cousins this weekend as well. He continues to gradually improve and the coming week should hopefully be fairly boring.

Bath Time

6 May 2006
Unfortunately a further weight loss today means that William is once again below 2.5kg. The big picture is that he will gain weight though, we are just a bit to focused on the short term right now. He is now getting eight tube feeds a day with offering of the breast in between just to keep him interested in sucking.
We gave him his very first bath today! He didn't mind it half as much as we though he might. It is nice to be able to do the normal things that one would usually do with a new baby. We hooked William up to a portable monitor and took him for a walk. We really just walked up and down the corridor but did manage to get out to the top of the ramp on level 3 of the hospital. It was less that 10 metres from the ward but there was a glass roof in that particular area of the hospital and if William had have opened his eyes, he would have seen sky for the first time.

Four weeks away from home

5 May 2006
William continues to grow slowly and thankfully life has been a little boring (comparatively) in the last two days. He is still getting three breast feeds a day with top up tube feeds afterwards and full tubes feeds in between. Steve Cooper told us today that we are aiming for 150 – 200g weight gain per week.
William's kidney function is still too borderline to increase his captopril further but he is in no overt heart failure at present and seems to be coping on his current dose.
Yesterday he did get his chest wound sutures out and so that represented one more step in the right direction. It seems like it will still be a while before we can stop his continuous monitoring though.
We have discussed how we can continue to make our life work at this point and it seems that I will go down to Nowra and work a few days during the week before coming back to Westmead. It is four weeks today since we left our home to embark on this phase of our journey. It will be good to try and regain some stability for Olivia and Thomas with at least a few nights at home in the coming weeks.

3 May 2006

3 May 2006
William continues to make good progress. His weight was up today, teaching us again that examination of the minutiae every day can be misleading. Today he is about 75g over his birth weight. He still has a long way to go but we are going to get there.
I have left Sydney overnight to do two days consulting and give the kids a night at home.

Weight Loss

2 May 2006
William lost weight today. The cardiac team, headed by Dr Gary Sholler this week, reinforced that weight gain was crucial and if breast feeding was not going to give him sustained weight gain, we might have to revert to full tube feeding for a while. Steve Cooper had said the same thing yesterday and there have been a few other suggestions that formula feeds may be the way to go. There is certainly wisdom in the idea as the time taken for Liza to breast feed, then give a top up feed then express and clean up all the equipment amounts to 90 minutes to two hours. This has to happen every three hours so it doesn't leave much time in the day.
Nonetheless we both feel that it is early days yet and tomorrow is another day. We are adding extra calories to the feeds and hopefully will see a week of sustained weight gain very soon.
After such a positive day yesterday this was a bit of a downer. On reflection tonight though, if this is our major concern, then we are still in a reasonably good position. Only three weeks ago our worries were taking a very different focus.

May Day

1 May 2006
Today was Liza's birthday and the best present she got was William doing very well on the breast this morning. She began using a nipple shield to help him attach well and he latched on and sucked strongly for a good ten minutes or more, probably taking over half his allocated feed by himself. Liza was so happy with the change! William will still need to be topped up after breast feeding and tube fed every second feed so that he can build up his strength but it is an encouraging progression.