The World's Biggest Rollercoaster

As i'm sure you can imagine, and as we have been told time and time again, this experience is a real rollercoaster. Just as soon as you allow yourself to relax slightly, something big happens.

On Sunday night Jacob and Lilian were promoted to the High Dependency part of the neonatal unit, and are now both in normal cots.

This is where the fun started........

Over the past few days Jacob has gone from trying a bottle every now and then, to having his feeding tube completely removed (on Doctor's orders!) and having every feed by bottle. He was doing tremendously, but seems to have picked up a bit of a cold bug and after 48 hours of taking a bottle every 3 hours, he became too tired to feed himself at every mealtime. He's currently taking about 2 out of 3 feeds by bottle and the third one goes through his tube.

Due to Jacob's cold his oxygen has come up slightly. He had been able to manage in a round 0.03 litres of oxygen and remain very stable at his best, but is currently using around 0.08 to 0.2 litres. This still isn't a massive amount, and so long as he remains under 0.5 litres, he could come home on any of those other amounts of oxygen. It's just a shame to see him needing more when he had moved beyond this stage and the Doctors were hoping to try him in air at the beginning of the week.

Although Jacob's 'setback' is par for the course, a real concern this week has been Lilian.

Lilian has started to have Apnea 'episodes'. This is where she stops breathing for a period of time, and depending on how long the episode lasts and how well she can cope, depends on the kind of intervention she needs. The first few times she did this were relatively minor and were pretty much over as soon as they began. However, Wednesday and Thursday she had a couple of more prolonged episodes which meant that she needed help from the Nurses to stimulate her and get her breathing again.

The Doctors and Nurses have reassured us that this is very common is preterm babies, and as Lilian was a little aneamic, this was making the episodes more likely. It was decided that due to her aneamia she needed another blood transfusion on Thursday and she has perked up somewhat since and managed a full bottle this morning (she had barely opened her eyes since being moved to HDU, and certainly hadn't touched a bottle), although her Apnea episodes haven't gone away just yet. We've been advised that she will grow out of it, but for the timebeing we have to get used to seeing sights that we didn't think we would be seeing again now that they are out of intensive care. Just to make things worse for Lilian, she also seems to have a cold so is having to cope with a lot at the moment.

Due to the babies sniffles (and the sniffles of other babies on the unit), and routine infection control, tests have been carried out to make sure that the babies have nothing more than a cold, and the results were as pleasing as they could be  - they have the common cold!

A few thoughts on stomas

A Nurse asked Mummy yesterday how she felt about cleaning Jacob's stoma, as she couldn't imagine doing it for her own child.

Mummy's answer was this; Jacob was so young (6 days old) when he had his operation that he still didn't look like a baby, because of that his stoma didn't seem real so even though it was a little daunting to clean it the first few times it never really registered what it was we were doing.

Now after doing it for so long; it's just routine for Jacob's cares to clean his stoma / change his bag so we think nothing of it (except of course how upset he gets during the process). If he was to only just be getting a stoma now at this age, we think it would take a lot more getting used to, and we're not sure we would be quite so laid back about it.

I have posted this as the question really surprised me and made me think just how distressing the whole act of caring for a baby with a stoma actually is, and how what we have been doing for the last three months really isn't normal - although for us it has become our lives.

To those who might be reading this who are starting out on a similar journey with their own premature babies, both myself and Mummy would like to reassure you that what seems extreme now will soon become routine and anything that happens can be handled if you just take it one day at a time.

We really look forward to a time (hopefully in the next few weeks) where Jacob will not have his stoma and caring for both of our babies will be more 'normal' and less like a surgical procedure, we can then move onto the next challenge in Jacob and Lilian's lives, which we hope will be coping with caring for them without nurses support at home.

Awards

So, both Lilian and Jacob have received awards for completing their first full bottles! Well done babies!

Both babies are doing so well. Jacob is now out of his babytherm and into a cot. Jacob is now only on low-flow breathing support. He has been off CPAP completely for over 48 hours now and we are so pleased with the progress he has made. Low-flow is the lowest support they can receive with their breathing, and they can come home on this if everything else comes together for them before they are ready to come off all breathing support. He no longer needs the leads on his chest that were monitoring his heart rate and respiration, as he is now stable enough to just have his blood saturation levels monitored! So so proud of our superstar little boy!

Lilian is being tried completely off CPAP as she has been doing well with her 10 hours off, 2 on cycle. We're amazed at the progress Lilian has made with her breathing in the last couple of days and she is such a strong and determined little girl - keep it up sweetheart! If she can stay off CPAP she can move into a cot too in a couple of days.

The Approach Of The Expected Arrival Date

Although Jacob and Lilian weren't due to be born until next month, we are nearly upon their expected arrival date (anytime from Wednesday onwards as twins rarely go full term) but, instead of preparing to go and have our babies any-day now, we have been enjoying their company already and have seen them change rapidly over the last 11 weeks  (on Tuesday!).

Both have made great improvements with their breathing. Jacob is now spending 10 hours off CPAP and 2 hours on twice-daily, and Lilian is spending 8 hours off and 4 hours on. Some of the Nurses feel it's pointless putting Jacob back on for such a short period of time as it disturbs him quite a lot - plus he is fighting it now! But, the Doctors feel that he still needs to have a little rest between stints so that we don't push him too far and risk setting him back.

Jacob has been fantastic over the last couple of days, and has learnt how to take a bottle! Last night he took 25mls with Daddy! He should now be ready to move on to standard teats, which will help him to take in more milk (and probably drain the bottle!), at first, the babies use premature teats as the milk flows much slower so it teaches them to suck and then swallow, but the downside to this is that they don't get much milk before they are too tired.

Lilian has also been fantastic and has already moved on to standard teats for feeding. She's working so hard with her breathing though that she wasn't awake enough to have a bottle yesterday. This isn't something to be concerned about though, particularly as we know she has learnt to co-ordinate her sucking/breathing/swallowing to successfully feed from a bottle.

A Quick Update

Just a quick one tonight - both babies are doing extremely well. Jacob is spending around 7 hours off CPAP twice a day which is fab and Lilian is managing around 6 which we are so pleased with as Lilian finds breathing for herself harder than Jacob. She also fights the CPAP more when she is on it so her recovery is never as full as Jacob's.

They have both had a massive gain in weight and now weigh 2040g (Jacob - 4lb 8oz) and 2020g (Lilian - 4lb 7oz) which is fantastic! As a result they are both being rewarded with much bigger feeds each day. The weight gain means they are getting stronger, and that is most evident in their ability to breathe without support for so long.

Their general development is coming along too and they are both starting to develop the ability to suck and swallow so we now try them with a bottle feed once a day. Jacob isn't quite sure what to with his bottle at the moment, he pushes his tongue against it a few times and then falls to sleep! Lilian on the other hand happily put away 10ml all by herself this evening! She was then a little to tired to feed for herself any longer so she had the rest of her milk via her feeding tube.

All in all it's been a very pleasing few days.