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.

Heading Out

Sheena has started to be very helpful when its time to leave the house. She now gets her own jacket and shoes from the cupboard.

Sheena had another shocking EI playgroup last week, but I persisted through her tears of protest, and just wanting to be cuddled. I think she is resisting being made to 'work' with all the therapists. If it was free-play she'd prefer it much more, but unfortunately that is not the point of it all. One of my mothers groups was in the same centre later in the week, and she was fine after 5 minutes of wanting cuddles, and being unsure. As soon as she was satisfied that there was no pressure to 'perform', she was happy and played and socialised nicely with everyone.

No, No. Yes, Yes.

Although she can sign yes and no, Sheena doesn't really shake or nod her head, which we're trying to encourage. I found this cute book on yes and no, so that I can massively over-exaggerate the head-actions while I am reading it to her. It has quickly become a favorite as you can see from these pics. The reason she doesn't nod or shake her head isn't because she doesn't get it, its basically because she still hasn't got the body/muscle control to do the action. Meanwhile, she'll nicely do incy-wincy spider, so its a bit confusing on why one thing works and another is still to come.

Baby-meltdown morning

Sheena had a baby-meltdown at her EI playgroup this morning, and I took her home after only 20 minutes. She was crying, clingy, and very sooky. The main co-ordinator who is a Special Ed teacher was worried that we were setting a bad trend, but she had been in the other building while Sheena was having her first meltdown. With her encouragement, we gave it another try, but we lasted another 5 minutes tops. Despite her best efforts (and this lady is really experienced in working with pre-schoolers) at making it fun and interesting, she also realised that this was not Sheena's usual form, and it wasn't going to be worth the while today.

It was a big shame to have missed playgroup, because most of the other kids were away with colds, and there were more therapists than children. She was OK by the time we got home, so I don't know what was going on. Next week, I'll try to get there a bit early, and maybe she'll ease into it OK like she usually does.

Reading Role-Model

http://www.youtube.com/watch?v=JgD278miCR8
Here is Sheena and Cousin Mark bonding over a book.

We had our six monthly visit to Sheena's Paediatrician today. We had to talk thyroid problems, but Sheena's recent TSH blood test result was so mildly elevated, that we are not going to treat it yet. We'll monitor it, and start medication later if it gets worse. Sheena will flick her right leg out a little bit when she walks, but the Dr thinks this is her general low-tone rather than it being her hips out of place. As she continues to build strength this should reduce.

We had a neck xray at the hospital to see if Sheena has Atlantoaxial instability - 14% of people with Down Syndrome have atlantoaxial instability. Its recommended that it gets assessed between the ages of 2 and 4, as children get more active and before they get involved in sports. We find out in a week where Sheena fits in.

Sheena also had another speech pathology appointment today. Made for a busy day, but all worked out well. We got a long nap in, which makes the world of difference.

Cool cat

We've had a cold-snap, and I've been able to dress-up Sheena in her leopard suit. In this photo she was running around the house roaring like a lion.

She's been a little unsettled with creche recently - only late in the afternoon. I'd been blaming it on the fact that she only manages about a 1 hour nap at creche, but always has a two hour nap at home.

However, it occurred to me this week that she might be just hungry, because she's usually after a decent snack around 4pm. She starts signing for food, points to the kitchen then goes in there and sits or stands near the pantry and does the biscuit sign (for a cracker) or the sultana sign. This is all really easy for me to work out, because 1. I am her mum, and very in-tune with her, and 2. She has my full attention at home and I see her sign-language every day. Anyway after I suggested it at creche, it worked! They said she started to get a out-of-sorts at 4pm, and they gave her a snack and some milk. She was very happy when I picked her up and stayed that way until bedtime. Makes for a much more pleasant evening. Isn't it great when something so simple works and makes life happier for everyone.

I might go into creche for an hour or so soon so that I can help show the carers her main signs. We see them very clearly, but I suspect its hard for the child-care workers to determine what is her mucking about playing, versus her trying to sign something. While she's playing, she constantly signs, like "dolly", or "baby dolly sleeping", but I suspect they don't see a lot of this.

Adoration

Sheena is besotted with her big cousin Mark, who is now almost 10. She calls him Marr.

He came around to our house for an evening visit 5 minutes before Sheena's usual bedtime. Bedtime was then out of the question, and her eyes were full of wonder (like this photo) for his whole visit. It really melts the heart how much she adores him.

Meanwhile, I am rather pleased to have realised that Sheena will tolerate me holding onto her wrist when we are out walking. Up until now I've tried holding her hand, and she'll pull it away. If I persist, she'll sit down in protest. Quite the Miss Independence. Naturally this was not ideal from a safety perspective, especially if we're on a busy street, so I'm glad to have worked out that she'll still walk if I hold her wrist.

Sheena is very keen at waving hello to people at the moment, and when she sees a car, she'll do the car sign first, then wave hello to the people in the car as well. She was busy waving hello to a car driving outside the front of our house, and she got a few waves back as she usually gets. The front passenger of the car was a young woman with down syndrome which was nice to see.

Elevated TSH

Sheena had a blood test yesterday, because she's been unwell recently, then came up with an unexplained black-eye. I had been planning on taking her to the Doctor, but this was a certain visit. People with DS are 30% or so more likely to develop leukemia, so unexplained bruising, especially around the eyes is worth getting checked out. While we were having a blood test, we also got her Thyroid levels checks, as people with DS are rather prone to Thyroid disorders, and annual check-ups are recommended for this. That extra 21st chromosome likes to throw in a few issues for us parents to worry about.

So with all this, Sheena didn't go to creche, and I didn't go to work.

This morning, before 8am I got a call from the Doctor. Knowing how Doctors work, I figured this was important. Her white and red blood cells were OK (no leukemia), but she has mild hypothyroidism. Elevated TSH, but normal T3 and T4 levels. From what I have read, this means that we might have come across it early, and it probably has not been bothering Sheena. We now have to see the Peadiatrition in the next week, and probably he'll refer us onto an Endocrinologist to get her on medication. Just happy that we know about it, and can sort it out.

We think now that the 'unexplained bruising' was a knock on the side table Sheena had at Nan and Pop's house.

Beach babe

Sheena had visit to the beach, and desperately wanted to have a dip, but it wasn't going to happen as she has been a bit unwell, and it was basically too cold to swim anyway. It was her first visit to the beach since she started walking, so she

made the most of that.

Anyone in the market for a beachhouse? The one on the right is for sale

Visual Perceptions

Sheena's physiotherapist theorised that her lack of coordination in going downstairs using a good crawling pattern might be because she relies on using her sight a lot. Good theory I think.

She is making progress in her awareness of heights, and she's occasionally rummaged up the strength to pull herself up on the couch. She needs constant supervision at the moment when she's at a height, as she still needs directions to turn around to get down. I don't have the confidence that she'll do it without being told - she's just as likely to bum-off the the couch.

She had a great speech appointment this week, and impressed the Speechy with her chattiness and heaps of signs. Her healthiness makes such a difference to her developmental progress.

Sheena's Con

You wouldn't think it from a little pink princess like this, but Sheena conned me that she had thoughtfully adjusted to daylight savings slightly ahead of schedule. One day before the change in time she slept in to 9am, then didn't go to bed until 8.45pm. Of course I was very pleased, and thought that we'd smoothly transition into the new time, but that just hasn't been the case today. She woke up at a good time-adjusted time today, but then wanted her mid-day nap back in the old time zone. She was really cranky wanting her nap.

Pirate Dress Ups

I finally made it to a DS Coffee Group today that I haven't been able to go to for about 8 months. This was a school holiday catch up, so children of all ages - siblings, and children and babies with DS were there. Fortunately they had some students there as extra hands on deck to help supervise the children, and to give the parents a few moments to enjoy a coffee and a chat. The little ones played dress-ups and everything else under the sun. Sheena decided a pirate vest was the best, so we might have a tom-boy in the making.

Sheena slept for 3 hours today. Must have been worn out after the morning adventures and creche yesterday.

Otherwise, we're tracking well. I found a bowl at Toys R Us that has assisted Sheena in her spoon feeding. Its got an extra large edge that helps her load her spoon without spilling too much. It is really getting there (at last). Naturally we'd love to that to be well developed for when baby # 2 comes along soon. While on the shopping expedition, we got Sheena a pair of gorgeous new shoes. She's got small, broad, very soft feet, with very flexible ankles, so we have to find something with good support - but at the same time, are not too heavy. The shoe-shop lady seemed to know her stuff, so I am happy with what we've got. Apart from them being $65 for size 5 toddler shoes!!!

Aerobics Anyone?

I think Sheena looks ready to go for to the gym in this outfit. She has been very playful and fun now that she is back 100% healthy. It was bad ear infection, so we're glad its finally over. We're also glad not to be woken up every hour or two over night while she was unwell.

She had speech pathology on Friday, and she has a love-hate relationship with her Speechy. She loves the attention for 70% of the session but when the oral-motor stuff comes in she gets quite upset with the Speechy getting her hands on Sheena's mouth to show her the movement for various sounds. It is very hands-on, but the Speechy is smart enough to leave that bit to the end of the session, so it is mostly fun for Sheena. She thinks Sheena is very sweet and cute, and of course I have to agree :)

Some of the activities including trying to get Sheena to blow out a candle, putting Nutella on a spoon, and getting Sheena to raise her tongue so that it licks her upper lip without lifting her chin in the process, general vibrations in and around the mouth to develop her overall tone and awareness of the area. Putting pressure on her tongue so that it uses muscles to build up resistance. There is a lot more activities too, but you get the idea.

We're teaching Sheena to sign "I want more sultanas", or "I want more .....". She concentrates hard, but hasn't got the "want" worked out yet, so we usually let her get away with just signing "more", but assist her with the "I want more ....." before we give her more. She's still go a few words developing, which is nice to see.

Not so nice is Sheena's apparent claustrophobia. She freaked out massively in the lifts at the hospital like I mentioned, got distressed when we took her into a maze, and then yesterday cried for 10 minutes after I took her into a public toilet with me at the library. Hubby read that it can be just a phase like some kids have separation anxiety when they're around 1 yr old. Hopefully this is the case.

Runaway

e

After a restful Easter, Sheena has improved from her infection.

She's back to her usual self now, and is all go, go, go. I've promised myself I'll never complain about a healthy amount of energy given we were asking the Dr at one stage if she'd ever walk.

Here she is on one of her many runaway as fast as you can adventures.

Easter Time

We've had a quiet Easter. Sheena is recovering from a very bad ear infection. She picked up on Good Friday, after the Dr changed her antibiotics Thursday afternoon. You wouldn't think from her tummy in this photo that she's been off food for a week.

We did check out a fantastic new playground today, where there is lots of very modern swings, flying foxes, sandpits and slides. The swings and flying foxes had a variety of seats, some that cater to children with special needs. Sheena is still too floppy to hold herself in a swing without back support, but this playground had a few that let her swing independently. I think we'll leave the flying foxes for another year yet though.

A new look.

Just wanted to share the pigtails.

Our Horrible Wednesday

We had a horrid day. 2 hospital appointments. Sheena had a febrile convulsion 3 wks ago, so she needed an EEG to see if it was epileptic, or 'just one of those things' that baby's can have to stress out their parents. With Sheena's history the stress levels were +++++.

Her EEG was at 10.30. She hates them with a passion, and gets very stressed out and cries. Fortuntately Hubby came with me to the EEG, as I knew it would be a horrible experience. It was...

Anyway, Sheena also has developed a fear of lifts. Impossible at RCH to manage a chubby bubby, a pram and 8 flights of stairs without using a lift. Of course the lifts are crowded, so its a case of stopping at each floor, and her trembling and screaming all the way. I don't know why she is so fearful - whether its the noise, or confined space or the pressure.

As hubby was there after the 1st appointment, I walked her down the 8 flights of stairs rather than her getting more upset in the lift again after having just had the EEG.

Then, we had and early lunch, and Hubby had to go back to work. She wasn't very hungry after her EEG, but afterwards she was a ball of energy, and wanted to run up and down the corridors. I have to shadow her, because you never know where the stairs are, or if a door is going to be opened. Sheena doesn't manage stairs at all yet, so even a step could be a disaster. Of course at 7 months pregnant, the frequent pick-ups to stop her causing a raucus got rather wearing. The Starlight indoor play area was closed over the lunch hour, so I took her outside to the playground. With the temperature in the high 20s and in the the midday sun, fair Sheena (without a hat - because why would you take a hat to hospital), and her pregnant mum could only manage the sandpit for 15 minutes before we got too hot. Back inside, and more running up and down the corridors (with me now rather hot as well as bothered). The Starlight room was 20 minutes late to open, so we only had 10 minutes of relatively easy playtime with cool toys before we had to go up the dreaded lifts again to our Neurologist Appt. Another 8 floors of screaming and genuine fear. Very stressful. Now at 1.30 Sheena was tired, and happy to give me cuddles in the waiting room rather than running the corridors.

The Neurology Appointment was all good news. Sheena's EEG was perfectly clear. While she had her EEG which lasted about an hour, she fell asleep from exhaustion from crying so much, and this optimal for the test. While she lay in my lap, she did several 'jumps' in her sleep that Hubby had been worried about. Fortunately from her being monitored and videotaped, the Neurologist could rule them out as being anything sinister, and they were just normal myoclonic jerks that everyone has in their sleep.

So, an eventful day. When Sheena and I got home from hospital, we both managed to have a much needed nap.

Ap-ple

Here we are eating a big chunk of Apple, or Ap-ple in Sheena-talk. A dietition came to speak to the mum's at Sheena's EI Playgroup. After talking about eating issues with the other parents of kids that are developmentally delayed, I realised that Sheena is actually doing very, very well. She doesn't mind variety, textures don't stress her out too much, and she'd prefer bread over a muffin, actually I think she'd prefer bread over anything at the moment. This is not to say that we don't have issues on the eating front. Sheena's system is not 100% and she'll still spit-up about 3 times a day. We could opt to go down the medical line of having drugs to stop the reflux, but its not bothering her, so we're going down the regular washing line instead. Also, as I have mentioned before, we're having a long haul with the spoon feeding, but that is a fine motor/co-ordinatation issue. She can finger feed OK, and she's recently learnt to eat toast in mouthfuls herself, rather than me cutting it up for her.