Busy gaining weight to avoid heart surgery

This blog is more about Sheena's baby brother who is now three weeks old - but he has been the big deal of late.

He is out of hospital, with a strict regime to gain weight over the next month, in the hope that he will grow, but the holes in his heart won't, thus reducing the symptoms.

He is on lasix (diuretics), and captopril (to reduce this blood pressure), and polyjoule (a syrup to be given after each breastfeed which is very high in calories). He gets weighed 2 times a week by a nurse that comes to our house. We have to keep him away from anyone with a virus, and basically reduce anything that is going to make him work too hard. We have to keep him especially rugged up, and avoid big changes in temperature as much as possible to avoid him wasting energy trying to keep warm.
The final decision after 4 echo's was that Roy has Swiss cheese VSD's, or multiple vsd's ranging in size from 3.5mm to 1mm. Each hole on its own is considered small, but because he has several it caused the heart failure. The doctors are hoping, that by waiting one month the holes will spontaneously close or significantly reduce. There is a strong case for this because:
1. The holes are relatively small and if they were in isolation they would probably not have caused him any bother.
2. They're in the more muscular part of the wall which apparently means they can close more readily
3. Being in the muscular part of the wall, surgery would be very difficult at this point, as its hard to locate them through the various muscle fibres.
4. The only surgery they could do now is to put a band on the pulmonary artery, so it is not a complete solution, but would stop the heart failure problems.

Here is Roy's journey from hospital to home again. He was in for 13 days.


1. Initial few days in the high dependency room on the cardiac ward. Plugged into lots of monitors.
2. A precious wee cuddle with dad before going back under the lamps to get rid of the jaundice.
3. Back under the lamps again, but with less tape on his face as the oxygen prongs are no longer needed.

4. Off most of the monitors, still looking rather sick though.
5. Two days before discharge. Still have nasal gastric tube, and still alternating BF with NG feeds.
6. Back home again, feeling free and happy.

Sheena and Roy - 2 weeks in.

I have been spending pretty much all of my time in hospital with Roy for the past 9 days. The day goes really fast with all the other stuff that goes on, so anyone that has phoned or emailed, I apologise if I am really slack at getting back for now. Phones aren't allowed on the ward which makes it difficult.

Sheena Update:

Yesterday I had my first visit home for about 8 hours, and had a proper play with Sheena. Of course I've seen her here and there, but its usually only been a brief hour while hubby comes to visit, and it just awkward entertaining a 2 year old in hospital. We're never taken her up to the cardiac ward as we don't think its the place for her, but there is a play room and outdoor playground to keep her entertained.

So our afternoon and dinner was great fun with Sheena. Sheena was in great form, and her "conversations" are getting much better. She will now go, "blah, blahh, day, da, ba, ma nann nann" as though she's trying to tell me something very important but can't find the words to make any sense of it. Thank goodness for sign language to fill in the gaps. There is a lot more inflection in her voice making it quite different to normal babbling. Very sweet. She is also getting much stronger - particularly her legs. Everyone that sees her regularly has noticed the change in that.

She is handling being with her dad 80% of the time, and with her Nan and Pop the remaining time very well. She's used to spending most of the time with me, but the fact that she's coping so well makes it easier on everyone. She is off her food much more than usual, but I am told by my girlfriends that this is not unusual for a 2 year old anyone.

Roy Update:

Roy is nice and stable, and his work of breath is more under control now. He still is working more than he should, but its much improved. He still gets poked daily for bloods, but is down to just an nasal gastric tube, and is now fully dressed, and much easier to cuddle than when he was in the heated cot while they watched his chest, and had an ecg going all the time. We've been moved from the high dependency room to the regular room on the ward, so its a bit quieter, with less beeps going off all day and night.

His diet is closely monitored, and he alternates BF's and NG gravity feeds. Each BF involves a weigh in before hand, and then after, so that they can calculate exactly how much he is taking in, and if isn't exactly 100mls, they top him up with some EBM so they can ensure he's getting the planned amount set out by the dietitian. It is all rather medicalised, but its important, as they need to track if he's gaining calories or if is fluid retention which the diuretics should be controlling anyway.

The plan for Roy at this point is to have surgery next week. We don't know when but the surgeons meet on Monday to schedule the week based on each child's case. Roy is a priority case given his age, and that he's still in hospital. His obs are stable, however, so even if we're told its Wed for example, it could easily be put off if a more urgent case comes up in the meantime.

Thanks everyone for your interest and best wishes.

Big Sister Sheena

Sheena is now the proud big sister of Roy. Roy arrived via C-section weighing 4kgs - 500gm bigger than Sheena was.

Unfortunately Roy has only spent 2 days at home with Sheena despite being 13 days old already. They detected a heart murmur, which he was coping with fine while at the maternity hospital, and was discharged with a plan to follow up in the next few weeks as an outpatient, expecting that the holes would spontaneously close (as was the case with Sheena). However after 2 days home from hospital, Roy went into heart failure, and he's been in hospital since. It looks like surgery is the path we're on at the moment. There is still a chance that they'll send him home first beforehand, but his work of breath is still really labored, so he is staying put at the moment.

Sheena is being a bit naughty at home with Dad at the moment, but that is to be expected given she's 2 and testing the boundaries without mum around to say No. I have been in hospital with Roy, so I am missing Sheena a lot, but see her every second day for an hour or so. Cardiac wards are not good play areas for 2 year olds, so its hard to do much more than that at the moment.