Albert is stable and about the same as yesterday overall, with one notable exception, which I will outline below.
The good news is that Albert had a red hot go at breastfeeding late yesterday, lasting over an hour (70 mins) before he tired too much to continue. It is impossible to measure how much milk he received so the nurses simply hold off the feeds and wait for familiar signs that he is becoming hungry again and take a guess. Albert showed signs of hunger related grouchiness only about half an hour before his usual feeding time (3 hourly intervals) so it seems he must have taken a good part of a normal feed! This is a good sign indeed. Unfortunately he did not repeat the effort this morning. He was so busy examining Susan's face in detail that he forgot to suck or swallow at all, and had to be fed through the tube. In spite of the lack of feeding effort, it was rather nice for Susie who had not yet seen him so observant and alert in response to her.
One of the problems seems to be the feeding tube. It is harder for Albert to get used to the habit of feeding naturally when the natural taste and tactile sensations which would normally stimulate his response to normal breastfeeding are being confused and even interrupted by the tube going into his mouth and down his throat. Frequently his attachment is frustrated by the tube getting in the way or creating a distracting sensation which puts him off his game. We tried the tube down his nose a few days ago, which allowed better access for breastfeeding, but the tube frustrated his already laboured breathing and he was unable to cope even with increased oxygen. Since removing and replacing the tube causes some discomfort, we try to keep that to a minimum. As with everything else to do with Albert at present, it is a delicate balancing act between his various needs.
Whatever the progress in feeding method, there are some signs that the doctor's tinkering with intake volume is moving things in the right direction. Albert had a very small increase in total milk intake, and some additional calories and proteins fortifying that milk. This afternoon the nurses weighed him and saw an increase of 100 grams from yesterday! One hundred grams is a large increase in one day, even for a healthy baby, so the nurses will be weighing him again in a few hours to double check the increase has been measured accurately. I doubt that the scales have a large enough margin of error to make this anything less than good news, albeit a little too early to be popping corks.
I had to rely on Susan's observations, and a quick call to the Ward this afternoon, for my news of Albert today. Things have been getting to me a bit too much lately and I found I just could not face another morning sitting watching my boy at the centre of various tubes, flinching at the sound of every alarm indicating that a machine has lost track of a baby's vital signs. (This happens quite a lot in these wards. Most of the time it means a baby has kicked off a probe or grabbed a tube, and the alarm simply means the device needs to be reattached. Nevertheless, three or four times in the last two weeks, it is the same sound that has brought the medical staff into an urgent struggle to restore Albert's vital signs to normal.) I stayed at home and worked on my lecture notes for this semester, praying at intervals for Albert, and for various dear friends who are suffering in their own struggles here and around the world.
We have completed the Novena to the Holy Family and I intend to post a new novena later today, with the update on the second weigh in. Stay tuned.
UPDATE: Albert had his second bath early this evening. He seems to love them already. He was weighed a second time, confirming his 100 gram weight gain since yesterday! This gain is so positive that the paediatrician has reduced his milk fortification to every second feed. Rapid growth would put unwelcome pressure on Albert's heart and lungs, so we are aiming for a steady weight gain.
Monday, 10 March 2014
Albert is stable and about the same as yesterday overall, with one notable exception, which I will outline below.
Sunday, 9 March 2014
Today Albert was angry. If you did not know him as we do, you might not have noticed because his feeble lungs can barely squeeze out a decent noise. On the Albert scale of noise this one was right up there. I could almost hear him saying "If I could make a fist right now, you would have a black eye." He was in the middle of a beautiful sleep when we arrived this afternoon. We could see him twitching away in REM sleep and all his vitals were nice and steady. Then I picked him up and held him, and we began singing to him again. His face twisted into disapproval and he made it clear he did not approve of this development.
After a few minutes he settled down with Susie for another attempt at feeding and the doctor came to update. As I mentioned yesterday, Albert is struggling to put on weight. The doctors usually look for an increase of about 170g per week in healthy newborn babies. Apart from those days where he had a rapid increase in weight due to fluid build up during heart and liver failure, and an equally rapid decline when it was corrected, Albert has hovered at about his birth weight for two weeks. In other words, he has not put on any weight since he was born. Since the moment his umbilical cord was severed, his energy and effort have been almost completely taken up by his labouring heart, lungs and liver.
Since his liver and heart failure a week ago, Albert has only been receiving less than a third of a normal feed for a baby his age. A normal feed would be approximately 150mls per feed, but Albert was receiving 45mls, only recently increased to 53mls per feed. The ideal solution would be to simply increase Albert's milk and fluid intake, but overnight the paediatrician decided that his liver is still far too weak to cope with an increase. He instructed the resident doctors to increase the calories in Albert's current intake, without increasing his liquid intake. The nurses will now 'fortify' Susan's milk by adding a gram of a special supplement to each bottle. His present feeds would yield around 20-21 calories. This supplement will add approximately 5 calories per feed without increasing the volume. The doctors will check back in two days to see if this 25% increase in calories has enabled Albert to grow. It is possible to double this increase if necessary, and this seems to be the next step if Albert fails to respond in the next two days.
The children were happy to visit Albert again today, but it was a long way down from the euphoria of first holds yesterday. The younger children were restless and bored, wanting to know when they could play with Albert. The middle children began to speculate on how fast the trolley his bed is resting on could go down the hospital halls (I interrupted a debate about the correct speed to take the corners) and the older three were weary of trying to keep the youngest two in check. We left early to give Susie a chance at a peaceful feed. We are all exhausted, on edge and trying to not let it affect the way we treat each other. Some rather silly games and jokes in the car on the way home released some of the tension and we are spending a quiet Sunday afternoon in our respective corners with books, computers and Lego.
at 5:27 pm
Saturday, 8 March 2014
First things first, Albert is stable and there are no immediate causes for alarm today. He still needs a little oxygen to maintain his blood oxygen saturation levels and he still mostly feeds through the tube. His oral feeding, both from breast and bottle, has gone back backwards slightly this week overall, and he lost another 25g overnight. When the paediatrician examines him later today he will decide how we can get Albert back on the road to healthy growth and development. One option is to increase the calories of the feeds he is taking now without increasing the liquid volume and the other is to simply increase his liquid intake. Albert's latest blood results show him to be a little dehydrated from the reduced feeds, so it is likely that his liquid intake will be increased until we see more positive weight gain, but with a close eye on his liver function. The paediatrician is concerned with his lack of progress, but he said we have a few more tricks up our sleeves before it becomes a critical concern. He said we really need to see signs of progress within the next week.
Some excellent news today was that the delightfully bossy head nurse (bossy in a motherly sense) has been harassing our specialists in what they thought were their safe offices in various parts of Sydney, and has arranged for Albert's blood tests to be taken in his present Ward and transported to them, rather than make him travel. She also secured a postponement of the appointment with the Cardiologist, among others. This means Albert can stay where his is and focus on gaining strength.
This morning we took the children to hang out with Albert for a little longer than before. It is a testimony to the patience of the nurses and the behaviour of our children that more than one of them is allowed in the Special Care unit at a time. The first time we visited it was a special exception since it was the first time the children had laid eyes on their younger brother. They were so well behaved that the nurses have welcomed them all back ever since! :) After each of them had a short cuddle, I took my turn with Albert and began to softly sing the simple tune, 'A Little Black Sheep', that I have used to sing them all to sleep as babies and toddlers. The children spontaneously joined their voices to mine, so gently that I did not even notice until a nurse wandered in to see what the sound was. It was another of those moments that left me speechless. I realised how much the simple tune means to all of them. For the first time in years my mind went back to a time I lay in my bunk, as a primary school child, listening to my father play the tune on his guitar in the hallway outside our bedroom doors, to encourage us to sleep.
I don't think I can relate the impact of today with words, so I will simply post the pictures that show the beauty of the situation.
David, enjoying a giggle with Dad at Albert making faces.
Anastasia, who was so excited to hold Albert she barely handed him back before dancing a small jig of joy in the corner.
Matilda, who has held our last four children in the same quietly competent manner.
at 3:16 pm
Friday, 7 March 2014
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!
at 2:07 pm
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