Author: Silvia

Today we went out for the first time. Just a little trip up Balham High Street, more for the excuse to go out than any real requirement. Stroller loaded high with equipment, Massimo fast asleep inside and off we went. It was a really strange feeling to be out and about with him and I was very conscious of people looking at us, the way that people generally look at a buggy and a baby!

We popped into a baby shop and bought a baby monitor which has been tried and tested but I just can’t trust it to let us know when Massimo’s tracheostomy needs suctioning! However maybe in time I’ll learn.

All seems to be well in the Hope-Mason household so far. On Wednesday Great Aunt Karin and Grandpa visited as well as our neighbour Bernie. On Thursday Julia, the Speech Therapist, dropped in for a cup of tea on her way to work (she walks!) then Helen, the Community Children’s Nurse, popped in to check that all was well. In the evening, Massimo had his first bath at home and a trachy tie change. It was all very stressful and a glass of wine was had upon completion and a chinese take-away was deemed to be as much as we could muster, luckily Luisa didn’t mind!

Today Pat, the Health Visitor, and Leah, a Practice Nurse came to meet Massimo. They will be coming weekly to weigh him and measure his head circumference to monitor any further increases in his hydrocephalus. The good news is that Massimo now weighs 3.92 kg (8 lbs 10 oz), the bad news is that his head has grown too much again. Helen popped in again to drop off more equipment including a syringe stand for feeding time which could just make life a tad easier. This evening Patrick and Ceri dropped by as they were in the area and this time we managed to cobble together some sort of supper for us to share, so our first dinner party is done and dusted!

On Wednesday one of Massimo’s hands discovered the other, last night they discovered his mouth and tonight he was very alert in the evening and started looking around but with his head as well as his eyes. What a clever little boy!

More pictures will come soon I’m sure, but for the moment our hands are full with catheters, nappies and such like.

As I said we are really quite amazed that we are at home with a little baby and I suspect that we have felt the same emotions that all mums and dads must feel when they come home with a newborn, but with one big difference which is that Massimo was born 82 days ago!

We “roomed in” at the hospital from Sunday at around 4pm and we were really worried that we would feel confined and bored within the four walls of the hospital but it all went really rather well. Our first night was, well….different to anything we had ever experienced before. Massimo was, and has been, as good as gold.
Continue reading “Coming Home and Settling In”

And Justin and I are delighted, exhausted, drained, confused and most of all quite disbelieving that our little bundle of joy is finally home. Now starts our big challenge. I will write more, soon!

Today we were allowed out of the unit again, but we weren’t allowed where there might be too many people (in case he catches something!) and of course it was such a horrible day today that going outside was really out of the question as it was too cold. So we ended up going for a coffee in the canteen again. This time, however, Justin and my brother, Toio, were there to witness the event and Massimo was awake and VERY interested in all the goings on. He is wearing (although unfortunately you can’t see it) the smartest Gap outfit, down to matching socks, which were bought for him by the Vi�a family and looking very dapper!

Tuesday is coming ever nearer, tomorrow we room in!

Good evening all

Today was very exciting but unfortunately not as exciting as I had thought! I had envisaged going outside in the glorious sunshine and walking at least around the perimetre of the hospital. Instead I was told that I had to stay not only IN St. George’s but on that floor! Luckily the NNU is on the same floor as the restaurant so a friend, Michelle, another mum on the unit, and I went off and had a coffee and a chinwag. We were allowed out for 45 minutes and it actually went by remarkably quickly.

When I arrived at the unit I gave him a quick nappy change, a feed and a suction then I put him straight in his buggy. As it was such a lovely day I left Massimo in his vest but I did put shoes on his feet just because they are so cute! Massimo settled quite quickly and then fell asleep. He stayed asleep the entire time we were out of the unit and probably didn’t even notice our little excursion!

As you can see I took a few pictures and although it wasn’t such an exciting outing I felt really unwilling to return to the unit.

Today we were taught how to resuscitate Max. We were given our very own ambu bag (see picture) which we will have to carry around with us at all times, along with half the hospital!

The training was very well done and, although we hope never to have to use it, we do have a good idea of what to do should the need arise. The trainer also very kindly said that she would be more than happy to come to the house and give us a refresher course or teach other friends or members of the family who might look after Massimo.

After our training we changed Massimo’s trachy ties. The operation is nearly as complicated as doing the trachy change – it involves everything that you do for a trachy change, minus the actual change, so quite stressful, but Massimo was a star – AGAIN – and remained settled throughout most of the ordeal. J was in the driving seat this time and I was in charge of holding the tube in place. It all went off without a hitch.

Having done a trachy change and the resuscitation training we are now allowed to take Massimo for a stroll in his (very smart American) stroller within the hospital grounds and I shall be doing so tomorrow. A nurse will probably come with us, at least the first time.

It is so, so exciting! I promise to take lots of pictures and post them as soon as possible.

Today was the big day. I don’t know about J, but I tried really hard not to think about it much as I used to ignore exams in the old days.

We turned up at about 1.45 as we were due to do the change at 2.00 and Helen, the community nurse, was already there getting things ready. Massimo needed a quick suction before we got going and as I moved him so that I could get to his trachy tube all hell broke loose! He started crying and crying and I really couldn’t settle him. He got himself so wound up that once he did sort out his problem (a rather large poo was on its way) it still took a while for him to calm down. A clean nappy and a little more clearing of wind later he just started looking around happily.

Helen was brilliant, very calming and helpful and she certainly helped me through it, and I think she helped J too, that is if the beads of sweat were any indication of his stress levels! A trachy tube change should always be done with two people, except of course in an emergency. Today J took the old tube out and I put the new one in. Massimo was a complete and utter star. He remained calm and settled throughout and the whole thing went off without a hitch. We now have to do it with J in the driving seat and me assisting him, but that will be next week either on Monday or Tuesday.

Tomorrow we are having our resuscitation training and once that is under our belt, along with the second trachy tube change we are all set for Massimo to come home. Helen will be organising for more equipment to arrive and we will ensure that by Thursday everything that we will need is here.

This time next week …. (hopefully!)

We went to see Massimo today to be told that he now weighs 3.707 kg (8lbs 2oz) and is on 111 mls every 4 hours. He seems to be taking after both his father and his mother in this regard as we both excel in accumulating the pounds! He is, however, looking absolutely fantastic, although his head seems to be getting quite heavy, either that or the knowledge of his hydrocephalus getting worse has influenced my perception.

Tomorrow is the big day with the trachy change. Today I feel as though I have been chasing my tail trying to get ready but I don’t feel I have achieved anything except updating this site!

Today was spent wondering around Homebase purchasing storage solutions for all of Massimo’s medical equipment and thinking about what Massimo’s needs will be once he is home and if we are ready for it all. Shopping trips will be totally different once we need to take Massimo with us, as we will need all the usual baby stuff, plus a minumum of a portable suction and catheters, a spare trachy tube of the right size, a spare trachy tube one size smaller (just in case there are problems with the first), a mountain of tissues etc. etc. etc.

Slowly but surely we are getting ready and getting excited!
He currently weighs 3.5 kg (7lbs 11oz)

Today at 14.00 there was a multi-disciplinary meeting at the hospital to discuss Massimo and his transfer from the NNU into Community Care and Paediatrics for his future care. We joined the meeting at 14.30 and we met a variety of people. I had already met most of them but there were a few new faces for J. We discussed who would look after what in terms of Massimo’s future care and we discussed what was required of us and of Massimo in order to bring him home and what the plan was for getting him and us ready for his homecoming.

We also discovered whilst at the meeting that Massimo’s head has had another growth spurt. This would indicate another increase in the level of fluid in his head and this will be checked with an ultrasound scan in the next few days. It is possible that this will happen again in the future and a plan was made that the Community Nurse will take regular head measurements to watch out for any further increases. If this continues to happen, Massimo will require a shunt to drain off some of the liquid. His condition is Communicating Hydrocephalus, i.e. there is no blockage (as in non-communicating) and therefore although there is increase in fluid but no related increase in the pressure on the brain.

The really good news, however, is that a plan has been formed for J and I to do a tracheostomy change next Tuesday, for us to “room in” over the Easter weekend, a further tracheostomy change the Tuesday after that, with a view to Massimo coming home on Tuesday 22nd April!

Of course, a lot can happen between now and then, but this is the plan and this is what we will be working towards for the next 12 days.

Today, Helen came to the house and started unloading her car. I think it took her about three or four trips … and this is just the beginning. It was really weird to see the stuff at home when we are so used to it all, but in the NNU. As I unpacked the syringes, it really dawned on me that Max is coming home. In the NNU we are not encouraged to think about exactly when babies are due to come home so the thought is kept as a vague possibility some time in the future, but the future suddenly got a lot closer!

Helen and I unpacked all the boxes and packages and went through the use of each and every item. By the time she left, Massimo’s bedroom floor was hidden under medical equipment. We will certainly need to buy some sort of storage solution for all the stuff, or else we will never know where we are.

This morning we had an appointment at 10.00 am with the surgeon who will be performing the gastrostomy on Massimo. The surgeon would like to wait for Massimo to be a little bigger before he performs the operation and suggested the week of the 20th May which is when he returns from his holidays. Massimo is due to have the ENT specialist investigate his windpipe at around that time and so it has been decided that the two doctors will organise to do both under the same anaesthetic, date to be confirmed.

This afternoon I met one of the community nurses who will be caring for Massimo when he comes home. Her name is Helen and her job will be to ensure that we are equipped with all the know-how that we will need as well as all the equipment. She is an extremely nice lady and Massimo’s homecoming date will eventually be largely up to her. She is coming round to the house tomorrow afternoon and she will bring some of the equipment we will need with with her. It is all very exciting, but we don’t yet have a date or any real idea of when Massimo will be home. It could take up to 3 or 4 weeks and it will certainly not be in the next week.

I took J’s mum to see Massimo today and when we got the to hospital, a very nice lady called Mary told us that she had been called to the NNU to teach us how to change Max’s trachy tube! Luckily J could wrap things up in the office quite quickly and come and join us within the hour. Changing Max’s trachy tube is something that we will have to do possibly on a weekly basis, but maybe less often, depending on the type of tracheostomy tube the hospital give us. Most importantly, however, we have to be able to put in a new tube should the one he is wearing get knocked out of position.

As changing his trachy tube effectively means disturbing his airway, the whole procedure has to be planned with military precision. I must say that this was one of the most stressful afternoons that J and I have had in a long time. Max was hungry, which didn’t help, but all in all he was quite settled UNTIL we started fiddling with his tube and then all hell was let loose! The worst thing was that in the 2 seconds it took Mary to take the old tube out and fit the new one in Max’s face went completely purple as he fought for breath. Poor little mite, and then he had to wait whilst we quickly changed his nappy before he got his feed. When we realised that the nasogastric (ng or feeding) tube was actually split at the top and should really have been changed before feeding, we decided that he had really had a bad enough time and that we would feed him first, let him sleep a little and then change the tube. J and I left the unit absolutely exhausted from the sheer stress of it all.

More difficult still is that next week we will have to do it ourselves – with supervision of course – but until we can change the tube with some confidence ourselves, Max will not be able to come home.

Justin and I went to the hospital and whilst J video-ed (sp?) the event, I gave Max his third bath. This time was much much more pleasant than the last. Firstly because Joydee was the nurse helping us and secondly because having done it once before I was a little more of a dab hand at it. However, when it came to washing his back the nurse assisted because, as I had said first time around, it is difficult to do alone with a trachy tube as the standard holding position would block his airway. I am sure that in time I will find my own way of holding Max so that I can bathe him alone (or Justin can) but it will have to be a “non-standard” position. So that really went quite well. Also, J and I were taught how to change the ties holding Max’s trachy tube in place. These will have to be changed nearly every day so we will have to get quite good at changing them. Of course, unlike changing a nappy, his trachy tube is vital to maintaining his airway, so just a little bit more scary.