A few people have thanked us for keeping the blog updates coming, but the first thing I want to do today is thank YOU. Yes YOU! The one reading these blog updates. Why am I thanking you? Because, if you are reading this blog you are following Albert's progress, you are likely to be praying for him, and you have respected the fact that it is difficult for us to retell our very emotional story over and over again each day. So thank you!
Friday, 7 March 2014
Thursday, 6 March 2014
After two full days away from the hospital, lecturing at Notre Dame, I was very happy to be at Albert's bedside again this morning! As I held my hand to his tiny head and prayed the Novena to the Holy Family, two of the nurses mistook my quiet prayer for distress and came over to comfort me. When I smiled and showed them the text of the prayer as I prayed, they stood respectfully for the minute or so it took to finish, then one moved off to another patient, the other stayed to ask a few questions about our family, how the children were coping and whether we pray with them too. It lead to a gentle discussion about memories of bedside prayers with parents and how important such memories are, before she was called away by a one of the beeping monitors at another child's bed. It struck me that it is the tiny things that make a difference. That small prayer might be more effective, in representing the faith to that nurse, than any lecture I could give, or even the most amazing TV advertisement.
Albert is still holding at 0.2 litres of oxygen via the low-flow and is still being fed mostly through a tube. He has not managed even half a feed over the last two days, which represents a backward step in terms of his feeding and weight control. As I mentioned a few days ago, the doctors are playing a delicate balancing game with Albert's feeding and fluid intake. He needs to gain weight, but he needs to avoid too much fluid intake which will put pressure on his weak heart and liver again. His daily weight chart shows that he lost 10g yesterday and 20g today. These are small amounts, and the doctors will measure this sort of loss/gain over a week rather than days, but it would still be nice to see some progress in the right direction. His feeds have been increased from 46ml to 53ml and we will see how his liver and growth respond tomorrow. We know this is a long haul and it may take weeks for Albert to learn how to feed properly, but it still makes me a little less happy that he has not managed a full oral feed for a few days. He did 'finish' a bottle today, but he was spitting most of it out towards the end. Two thirds went down at best.
Thank you once again for your prayers for Albert. Please pray that he progresses in learning to feed, and that his body copes with the feeds and begins to strengthen him.
at 1:38 pm
Wednesday, 5 March 2014
First things first, Albert is stable and the paediatrician is pleased with his present slow progress. He has regained the weight he lost recently and we are hoping that this weight gain is general growth rather than more liquid build up. He still looks very lean, none of jowls and chubbiness we saw early on when he was full of liquid, so we are hopeful. Some important blood test results are due back some time this week (we hope). They will give us a clearer picture of his progress.
A very good sign of Albert's recover is the fact that he is increasingly alert and quite capable of declaring himself unhappy with his surroundings. Given the volume of his cry, I would guess that his lung capacity must be improving. He is still on life support (oxygen and feeding tubes) and still has an occasional breathing difficulty but the paediatrician is content to be patient with Albert's progress. It seems that we should expect at least 2-3 weeks more of special care in hospital before Albert can be considered for release. 2-3 weeks, that is, provided that his progress is steady and we have no medical setbacks.
I have not seen Albert personally for two days now due to work commitments, which is grinding away at my fatherly instincts in a horrid way, but I am able to call the special care unit any time and check on his progress, and I routinely ask my wife to describe her visits.
On a side note, I had just sent my latest submission to the Catholic Leader when I came across this excellent article, written by the parents of a newly born baby who happens to have Downs Syndrome. It says the things I wanted to say, but did not have the words. A taste:
We ask that you don't be weird around us or shy to ask us any questions. While we've got a lifetime of learning ahead of us, we have educated ourselves on the topic in preparation to be great parents and we have a network of resources surrounding us, as well, that can help educate us all. There are no dumb questions, but there are insensitive ways of saying just about anything. Our skin is incredibly thick about this matter, so don't worry, tip-toe or walk on eggshells around us, we'll know that whatever you say is coming from a good place.
We don't, however, need to hear how "sorry" you are for us. Feeling sorry for us is a "you" problem. We aren't the least bit sorry, so you shouldn't be, either. We aren't sorry that this completely random genetic variation took place in our pregnancy. We aren't sorry that this type of child may, in fact, be more work, more challenging and more challenged than others. We aren't sorry that our dreams and fantasies of our family are now a little different than they once were. And we certainly aren't sorry that we made the decision to choose life and accept whatever lied ahead. We aren't sorry for anything because that would mean that we are choosing to miss out on all of the magic that this will be in our lives.
at 9:22 am
Monday, 3 March 2014
I am happy to say that Albert continues to make slow but steady progress in several areas. His breathing is steady at 0.2 litres of oxygen via the low flow, but he has the occasional lapse where his lunges suddenly pump much harder than usual to keep up with oxygen requirements. He has to be able to calmly manage without oxygen for a few days before they even consider releasing him.
The other major factor is his feeding. The doctors are presently playing a delicate game. On the one hand his eagerness to feed and, on the other hand, the inability of his heart and liver to cope with too much fluid at once. The result is that Albert is always hungry, which has the very positive and helpful side effect of making him eager to learn how to feed. Albert must learn how to feed before he will be released from hospital. His weak heart and lungs, his general weakness and a general lack of muscle tone which is typical of Trisomy 21 all contribute to the problem. In light of all these weights he is carrying, Albert is making slow but pleasing progress in feeding.
Which is an excellent segue to the rather mundane news I am just bursting to share! Today I got to feed Albert! I used a bottle of course, but my sheer delight seeing him suck and swallow a full 40 ml feed is indescribable. His eyes remained focussed on my face for the entire feed (except when Susie spoke and his eyes flicked in her direction briefly), and he often paused his sucking to make a the deliberate and definite sound all our babies have made as their first attempt at verbal communication. It is difficult to describe how wonderful those minutes were. I am still floating.
Slightly more sobering news is that the doctors believe it will take about 2-3 weeks of present progress, with no dramatic backwards steps, for Albert to recover to a stage they would consider releasing him to come home. Rushing him has already caused one rather dramatic problem so we are happy that the medical staff are taking the necessary time for Albert to grow in strength. He needs to become strong enough to undergo open heart surgery. The surgery will be a good thing, but it is no small thing to open a babies chest and bypass his heart. He needs every bit of strength he can pull together for that time. The specialists and doctors are very clear that, once the heart is repaired (and he recovers from the procedure), Albert will be back to full strength. We will, of course, need to keep up a constant regime of tests to look for the kind of health issues that are more likely in a Trisomy 21 child, but we will take that as it comes.
In the meantime we continue to pray for the patience and strength to grow as a family and be the home Albert will come home to very soon.
at 3:44 pm
Sunday, 2 March 2014
First things first, Albert had an uneventful night and all indicators are stable. He still needs the oxygen and feeding tube but all other tubes are now gone. Today's delight was that Albert had his first bath ever! Unfortunately I missed it (too many of our children have colds to take in today) but it is a delight to hear a description of his obvious enjoyment of the experience. Even this small joy gave us such great pleasure that the family have pestered my poor wife to describe it all again and again, and to show them the photos.
Unfortunately it was all too brief. In order to be bathed he had to be unplugged from the oxygen. His tiny chest was heaving hard after only a couple of minutes, reminding us that he may be stable, but he is still very, very weak. He was fine after a couple of minutes back on the oxygen.
Over the past fortnight we have had so many reminders of how blessed we are to live in this country, with the health care that is available. It is difficult to imagine how Albert, and perhaps even Susan, could have been with us without the health professionals and their remarkable equipment. It gives us a much greater appreciation of those missionary groups who do so much to take the most basic medical care to third world countries.
On a practical note, I have no Internet for a few days. An unplanned and unacknowledged fault in a local exchange has shut down all cable and broadband services in my suburb. (I am typing this post on a laptop tethered to an iPhone hot-spot.) The company is working on it but they predict we will have no net for 2 days. I will still try to post updates but please be patient. :)
at 5:26 pm
Saturday, 1 March 2014
Albert has fed normally via the tube, is still receiving oxygen (0.2 litres) and attempted a breastfeed late in the morning. His vitals are all holding steady and, if his cry is any indicator, has slightly increased in strength.
I took the seven children to see Albert before his feed so they could see him when he was awake, and Albert obliged them with a wonderful demonstration of his improving lungs. Though Albert may have been mildly offended that he was the only one in the room who was not smiling widely at the sound.
I will continue to post any news and some reflections on the the experiences along the way, but I hope very much that I will have nothing to report for some time.
I want to thank those who prayed the Novena for Albert over the first nine days of his life. We are constantly grateful for your prayers, no matter what form they take. In case anyone is interested, we intend to continue with a new Novena, this time to the Holy Family. It is our dearest wish and prayer that Albert be welcomed home soon into his family home.
Novena to the Holy Family
Most loving Jesus, by Your beautiful virtues of humility, obedience, poverty, modesty, charity, patience, and gentleness, You blessed with peace and happiness the family which You chose on earth. In Your mercy look upon my family. We belong to You, for we have received Your many blessings over many years and we entrust ourselves to Your loving care.
Look upon my family in Your loving kindness, preserve us from danger, give us help in time of need, and grant us the grace to persevere to the end in imitation of Your holy Family, so that having revered You and loved You faithfully on earth, we may praise You eternally in heaven.
Mary, dearest Mother of Christ, you nurtured your son in his life on earth, pray for us that your example may inspire us to nurture the family entrusted to us.
Glorious patriarch, Saint Joseph, your gave your wife and foster child your loving protection and help, may your powerful prayers to Jesus inspire us to protect and teach our children to follow the same Jesus Christ, Our Lord.
Lord Jesus Christ, being subject to Mary and Joseph, You sanctified family life by Your beautiful virtues. Grant that we may be taught by the example of Your holy Family, and may after death enjoy its everlasting companionship.
Lord Jesus, help us ever to follow the example of Your holy Family, that in the hour of our death Your glorious Virgin Mother together with Saint Joseph may come to meet us, and we may be worthy to be received by You into the everlasting joys of heaven. You live and reign forever. Amen
at 2:52 pm
Friday, 28 February 2014
To all of you who prayed so hard yesterday, THANK YOU! Albert seems to have made good ground over night and we are now about where we were a few days back, perhaps even a nose in front in some things.
Now to details. The exhausting struggle overnight had set Albert back slightly to 0.5 litres of oxygen via the low flow, with the occasional burst of CPAP to top him up. This morning he was already back down to 0.3 litres, but he did require a quick burst of CPAP after the effort of a feed left him a bit short of breath. It should give you some idea how weak Albert is that 5 minutes on the breast and 5 more sucking a bottle teat left him too weak to breathe without extra assistance.
In an effort to reduce the load on Albert's liver, last night the doctors temporarily reduced his milk intake by approximately half. This tactic, combined with the diuretic, seems to have achieved what we were hoping for. Albert has managed to rid himself of several hundred grams body weight by way of his nappies overnight and this morning, exactly the result we were hoping for. I am delighted to say that his skin has lost its sickly tinge, his eyes are alert and follow our faces as well as any baby his age, his heart is far less laboured (but still enlarged due to pumping so hard), his breathing is back to his regular struggle (still working hard, but as good as it has been so far) and his liver has returned to almost back to normal size. He is still slightly behind in oxygen requirements but, after last night, we are delighted to see him as well as he is today!
The poor little fellow has been poked and prodded so much it is difficult for the doctors to find a place to put another cannula that has not already been used recently (and often still bruised). The hand in the picture is the least affected, yet you can still see a series of small marks across the back of his hand where the cannulae have been.
The paediatrician at the local hospital thinks that things may have been taken a little too fast over the past week and that what Albert needs the time to slowly adjust to the improvements. He gave me a guestimate (my word, not his) that we still have weeks of hospital visits ahead of us, but not months. Overall it was a huge relief today to leave the ward today with a sense of a small light at the end of this particular tunnel.
The aim for the weeks ahead is to get Albert home. Once he is home, the aim is to allow him to slowly grow strong enough to cope with open heart surgery in a matter of months. Assuming the surgery repairs the holes in his heart, Albert's real progress can begin.
Once again, thank you for all your prayers!
at 3:55 pm