So Jacob finally had his Surgery on 5th November after Daddy begged and pleaded with the hospital to not cancel his Surgery a second time. Well done Daddy!
Jacob's initial Surgery should have taken place on 1st November, but when we got there (an hours journey) we were told to go home as the surgery was cancelled... Jacob's Surgeon came to speak to me and my Dad to explain the situation, which was quite simple: He had the Surgery slot, and a bed on the unit was available, however there were no beds available in the ICU (Intensive Care Unit) and the Surgeon was not prepared to risk doing Jacob's surgery without guarantee that the right level of care be available to him if he were to have difficulty coming back off the ventilator. Disappointing, but fair enough.
So the 5th rolled around and we headed back to the hospital (this is the specialist hospital where Jacob had his initial Surgery when he was just a few days old), and Daddy stayed at home with Lilian as taking a baby on oxygen to a hospital full of children with bronchitis is not a good idea.
It was all-systems go when we arrived, a Doctor came to examine Jacob and pointed out a potential Hernia that the Surgeons asked for permission to operate on while they carried out Jacob's Stoma reversal, the anesthetist came to explain how they would manage Jacob through his Surgery and how they would put him to sleep. The Surgeons then came round to talk us through the risks and answer any questions we had.
Bang on time, Jacob was called to theatre and it was time to say goodbye. It had been explained earlier, that parents cannot accompany babies to theatre as they are taken straight through to the actual theatre before they are put to sleep, so I had to say goodbye on the ward and then watch him disappear through the theatre doors.
So off we went for some lunch and to take our mind off the Surgery. No sooner had we left then I got a phone call from one of the Surgeons explaining that they had spotted another potential Hernia that they wanted to operate on!
A tense 3 hours later a very relieved Mummy got a phone call from the Surgeons again to say that all had gone well with Jacob's Surgery and he had come back off the ventilator successfully! A short while later Jacob was back on the ward and very groggy.
He's been home nearly a week now and seems to be calming down now that he realises there are no stoma bags involved in nappy changes anymore! He also seems to be able to control his hunger a little more (he's still a very hungry boy though!), which is great. All we need to do now is get him to sleep through the night like Lilian - come on Jacob we all love a lie-in!
In around 4 weeks time we will be heading back to see Jacob's Surgeon for an outpatient appointment to check on Jacob's progress and how he is healing. Fingers crossed this will all go smoothly and we will never have to go back there again.
As a side note, the babies were weighed today and Lilian is now a hefty 10lb 6oz! Jacob is catching her up now he has been able to gain weight again after his Surgery but currently weighs 8lb 12oz. They've come a long way indeed......
Monday, 18 November 2013
Sunday, 27 October 2013
Result
So after 16 weeks and 6 days in hospital, 16 weeks of sleepless nights, heartache and frustration, Jacob and Lilian were finally discharged from hospital on Monday 21st October 2013! We couldn't be happier with them being home and look forward to more... sleepless nights, heartache and frustration ;)
Over the last few days we have been extremely busy with looking after our babies and getting to grips with home oxygen and medications (both are so simple now we have had a go, but a lot of parents we have spoken to at the hospital have said that they found the whole thing daunting at first - we were just relieved to be getting them home we didn't care what 'extras' that came with).
In the very near future we will be back in hospital for Jacob's reversal surgery, but we hope to be back home very soon. Unfortunately, we don't get rid of hospitals that easily! The twins have got an extensive list of appointments and referrals that will be keeping us on our toes for the next few years (we're still aiming for everything to be back to 'normal' by a corrected age of 2 (October 2015)) but we will just have to see.
For family and friends, once Jacob has recovered from his surgery we would love to introduce you to the babies! We shall be in touch.....
For families on your own preterm journey, we hope that this blog has helped give you an idea of what you can expect over the coming weeks / months. We're told our babies were uncommonly old before they were discharged (2 weeks and 5 days after their due date), so rest assured that chances are your baby/babies will be discharged much closer to their due date. Nearly everyone we have met along the way have had their babies home around 2 weeks before their due date, it just depends on what issues the babies have had along the way.
To all our friends and family who have supported us along the way we would like to thank you all, it has meant a lot to us. For all of the medical staff who have cared for our babies we would like to extend our enormous appreciation in delivering our babies to us safe and sound, you will all be in our hearts forever.
So is this the final post on Our Impatient Twins? ... Most likely not, we do have the surgery and follow up meetings which we hope to continue to put up to aid other parents who may find this story reassuring or helpful in any way, but for now we will just be enjoying the long-awaited alone-time with our babies!
Over the last few days we have been extremely busy with looking after our babies and getting to grips with home oxygen and medications (both are so simple now we have had a go, but a lot of parents we have spoken to at the hospital have said that they found the whole thing daunting at first - we were just relieved to be getting them home we didn't care what 'extras' that came with).
In the very near future we will be back in hospital for Jacob's reversal surgery, but we hope to be back home very soon. Unfortunately, we don't get rid of hospitals that easily! The twins have got an extensive list of appointments and referrals that will be keeping us on our toes for the next few years (we're still aiming for everything to be back to 'normal' by a corrected age of 2 (October 2015)) but we will just have to see.
For family and friends, once Jacob has recovered from his surgery we would love to introduce you to the babies! We shall be in touch.....
For families on your own preterm journey, we hope that this blog has helped give you an idea of what you can expect over the coming weeks / months. We're told our babies were uncommonly old before they were discharged (2 weeks and 5 days after their due date), so rest assured that chances are your baby/babies will be discharged much closer to their due date. Nearly everyone we have met along the way have had their babies home around 2 weeks before their due date, it just depends on what issues the babies have had along the way.
To all our friends and family who have supported us along the way we would like to thank you all, it has meant a lot to us. For all of the medical staff who have cared for our babies we would like to extend our enormous appreciation in delivering our babies to us safe and sound, you will all be in our hearts forever.
So is this the final post on Our Impatient Twins? ... Most likely not, we do have the surgery and follow up meetings which we hope to continue to put up to aid other parents who may find this story reassuring or helpful in any way, but for now we will just be enjoying the long-awaited alone-time with our babies!
Saturday, 12 October 2013
Promotion
So Jacob and Lilian were promoted to 'The Nursery' yesterday afternoon, and have quite literally got closer to the exit - admittedly it's the fire exit, but hey ho! The babies are now considered to be 'low dependency' which seems a little ironic for young babies needing medical care, but compared to where they have come from, this is a huge relief!
We finally had our 100 day meeting when the babies were 106 days old (Wednesday just gone). We've had the health, risks, and future needs of Jacob and Lilian explained to us in a lot of detail - most of which we won't go into, but we thought it was important to touch on the 'big things'.
They both have Chronic Lung Disease because they required breathing support after 36 weeks (corrected age - their gestation if I had still been pregnant). This means that they have very inflamed lungs due to the need to force air into them for so long. They will have this condition until their lungs recover (which they will at some point). It is expected that they would have grown out of this condition by around 2 years old if not sooner but it all depends on if they go on to need breathing support again (for example, if they get re-admitted to hospital with a cold / flu, it could mean they need to be ventilated, or need CPAP again which would damage their lungs again and setback the recovery).
It's possible Lilian may need Keyhole surgery to close her PDA (the duct that bypasses the lungs in a foetus) as it was not fully closed the last time they looked at it, although they have committed to checking again before discharge. Jacob will have the same tests done, but his is believed to be closed so shouldn't require anything further.
Jacob has been booked in for his reversal Surgery on 1st November back in the hospital they were born in. We won't know until the day if he can be admitted due to bed availability, and won't know if the Surgery is definitely going to happen until he's in theatre (the joy of 'routine' surgery!) as his reversal is not considered to be a priority.
The babies Consultant and another Consultant on the unit talked us through where we stand with Jacob's surgery and the babies current condition. With their input and backing we have decided to get Jacob and Lilian home before Jacob goes for his reversal surgery. There are pros and cons to all the options we considered, but we felt getting them home would be the best as it's the most likely to keep them away from the risk of infection. It is the hospital policy that Lilian cannot accompany Jacob for his surgery whether she has been discharged from hospital or not, and with them now being older than their due date (41 weeks + 2 corrected) they could both be sent to Children's wards (our babies are too old for neonatal! :( ) which is a concern for us and their Consultants as Children's wards would leave them exposed to much more infections (hello flu season) which they wouldn't be exposed to amongst neonates.
As we've all agreed to aim for the discharge of the babies as soon as possible, this means that they will both be coming home on oxygen. This will restrict the amount of visitors they can have for a little while, again mostly due to the time of year they are being sent home, but also because being on oxygen we, as their parents, have to be extremely cautious about what and who they are exposed to - we have been advised that parents with other children tend to find that their babies are readmitted to hospital, but parents with no other children are able to keep illness away much more effectively, and generally don't get readmitted to hospital.
They will both have 'sleep studies' to determine the optimum amount of oxygen for them to come home in and then it's time to get it all fitted at home.
We're thrilled to be getting them home soon, and can't wait for them to meet family and friends (although we must be cautious about visits!).
We finally had our 100 day meeting when the babies were 106 days old (Wednesday just gone). We've had the health, risks, and future needs of Jacob and Lilian explained to us in a lot of detail - most of which we won't go into, but we thought it was important to touch on the 'big things'.
They both have Chronic Lung Disease because they required breathing support after 36 weeks (corrected age - their gestation if I had still been pregnant). This means that they have very inflamed lungs due to the need to force air into them for so long. They will have this condition until their lungs recover (which they will at some point). It is expected that they would have grown out of this condition by around 2 years old if not sooner but it all depends on if they go on to need breathing support again (for example, if they get re-admitted to hospital with a cold / flu, it could mean they need to be ventilated, or need CPAP again which would damage their lungs again and setback the recovery).
It's possible Lilian may need Keyhole surgery to close her PDA (the duct that bypasses the lungs in a foetus) as it was not fully closed the last time they looked at it, although they have committed to checking again before discharge. Jacob will have the same tests done, but his is believed to be closed so shouldn't require anything further.
Jacob has been booked in for his reversal Surgery on 1st November back in the hospital they were born in. We won't know until the day if he can be admitted due to bed availability, and won't know if the Surgery is definitely going to happen until he's in theatre (the joy of 'routine' surgery!) as his reversal is not considered to be a priority.
The babies Consultant and another Consultant on the unit talked us through where we stand with Jacob's surgery and the babies current condition. With their input and backing we have decided to get Jacob and Lilian home before Jacob goes for his reversal surgery. There are pros and cons to all the options we considered, but we felt getting them home would be the best as it's the most likely to keep them away from the risk of infection. It is the hospital policy that Lilian cannot accompany Jacob for his surgery whether she has been discharged from hospital or not, and with them now being older than their due date (41 weeks + 2 corrected) they could both be sent to Children's wards (our babies are too old for neonatal! :( ) which is a concern for us and their Consultants as Children's wards would leave them exposed to much more infections (hello flu season) which they wouldn't be exposed to amongst neonates.
As we've all agreed to aim for the discharge of the babies as soon as possible, this means that they will both be coming home on oxygen. This will restrict the amount of visitors they can have for a little while, again mostly due to the time of year they are being sent home, but also because being on oxygen we, as their parents, have to be extremely cautious about what and who they are exposed to - we have been advised that parents with other children tend to find that their babies are readmitted to hospital, but parents with no other children are able to keep illness away much more effectively, and generally don't get readmitted to hospital.
They will both have 'sleep studies' to determine the optimum amount of oxygen for them to come home in and then it's time to get it all fitted at home.
We're thrilled to be getting them home soon, and can't wait for them to meet family and friends (although we must be cautious about visits!).
Thursday, 3 October 2013
Babies Reunited
Yesterday Jacob and Lilian were put into a twin cot and can now touch and smell each other for the first time in over 3 months! They seem to be making up for lost time by repeatedly doing the following; hitting each other, holding hands, and pulling on each others oxygen tubes! Jacob even managed to wee on Lilian - nice, son, nice!
The past week has seen Lilian back on high flow, but gladly, now back on low flow and doing well. Other than that there isn't much to report. Today is the babies 100 day meeting so we hope to find out more about when we can expect them home today. All children that spend 100 days in hospital must have a meeting of medical professionals in charge of their care, along with health visitors and parents to discuss how they can get those children home as soon as possible, and what support will be needed to achieve it.
The past week has seen Lilian back on high flow, but gladly, now back on low flow and doing well. Other than that there isn't much to report. Today is the babies 100 day meeting so we hope to find out more about when we can expect them home today. All children that spend 100 days in hospital must have a meeting of medical professionals in charge of their care, along with health visitors and parents to discuss how they can get those children home as soon as possible, and what support will be needed to achieve it.
Saturday, 21 September 2013
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!
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!
Sunday, 15 September 2013
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.
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.
Saturday, 14 September 2013
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.
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.
Sunday, 8 September 2013
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.
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.
Sunday, 1 September 2013
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.
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.
Wednesday, 28 August 2013
All Settled In
Well Jacob and Lilian are now very well settled into our local hospital, and all four of us have had a very busy few days.
The babies biggest change is that they are now old enough to regulate their body temperature as a full term newborn would so they no longer need incubators! They are now in 'Babytherms' which provide some warmth from the mattress, but other than that they are pretty similar to normal hospital cots.
Both babies are being 'cycled off' CPAP and have a set time off the CPAP every twelve hours. Lilian is on 3 hours today and Jacob 2 hours. Lilian had built up to 4 hours a couple of days ago but the final hour was a little hard for her so the Doctor's decided to leave her at 3 hours for a few days. During the time off they are put onto a similar machine to high flow, but with a much lower air pressure.
Jacob is being fed 3-hourly, so he now matches Lilian. They both seem to have lost weight but it's difficult to say for certain as they have been weighed in different hospitals using a number of different scales. The Doctor's aren't too concerned with this as the babies look a healthy weight and all their figures look good. Jacob has had fortifier added to his milk though, like Lilian already has, as there have been some changes made to top-up fluids he was getting, so they want to be sure he can grow while feeding solely on milk.
Jacob's longline has been removed as our local hospital have stopped his TPN. He currently has a Cannulla in one of his hands for a drip of Sodium Chloride, which is to replace the salt he is losing. The Doctor's are looking to add this via his feeds in future (as all his other medications are now administered) so that they can remove his Cannulla too - it will be so nice for him to have both his arms free, and may stop him from potentially injuring the staff and Mummy and Daddy when he waves his arms around!
Here are some pics of the babies in their new environment - I managed to catch Jacob while he was being cycled off CPAP so he only has nasal prongs providing 'Low Flow' which is just a tiny amount of oxygen.
The babies biggest change is that they are now old enough to regulate their body temperature as a full term newborn would so they no longer need incubators! They are now in 'Babytherms' which provide some warmth from the mattress, but other than that they are pretty similar to normal hospital cots.
Both babies are being 'cycled off' CPAP and have a set time off the CPAP every twelve hours. Lilian is on 3 hours today and Jacob 2 hours. Lilian had built up to 4 hours a couple of days ago but the final hour was a little hard for her so the Doctor's decided to leave her at 3 hours for a few days. During the time off they are put onto a similar machine to high flow, but with a much lower air pressure.
Jacob is being fed 3-hourly, so he now matches Lilian. They both seem to have lost weight but it's difficult to say for certain as they have been weighed in different hospitals using a number of different scales. The Doctor's aren't too concerned with this as the babies look a healthy weight and all their figures look good. Jacob has had fortifier added to his milk though, like Lilian already has, as there have been some changes made to top-up fluids he was getting, so they want to be sure he can grow while feeding solely on milk.
Jacob's longline has been removed as our local hospital have stopped his TPN. He currently has a Cannulla in one of his hands for a drip of Sodium Chloride, which is to replace the salt he is losing. The Doctor's are looking to add this via his feeds in future (as all his other medications are now administered) so that they can remove his Cannulla too - it will be so nice for him to have both his arms free, and may stop him from potentially injuring the staff and Mummy and Daddy when he waves his arms around!
Here are some pics of the babies in their new environment - I managed to catch Jacob while he was being cycled off CPAP so he only has nasal prongs providing 'Low Flow' which is just a tiny amount of oxygen.
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| Jacob |
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| Lilian |
Saturday, 24 August 2013
An Early Two Month Birthday Present
On Wednesday morning we were given the news that the babies were going to be transferred to our local hospital, however by lunchtime we were told only one transport team was available to take one of the babies, and a few hours later that team were called away to an emergency transfer - such is the nature of these things. Although we hadn't allowed ourselves to get carried away with the idea of a move, it was extremely disappointing to be told we were leaving and then have the plans change at the eleventh hour.
By some miracle; beds were still available at our local hospital the next day and a transport team was available to take both babies in separate journeys. Cue a very stressful couple of hours until the Central Team arrived (this team are the East Midlands equivalent of Embrace). Jacob was taken first as he was being fed 2-hourly, and had just been fed, and the journey and handover times can run to around 2 hours. Usually a parent is permitted to travel with a baby but as I couldn't be a passenger on the way back in case they got called away to an emergency. However, the staff reassured us that he would be okay and would call as soon as Jacob arrived at our local hospital.
His journey was successful and the team came straight back for Lilian. Due to all the procedures and checks that have to be followed it was getting quite late by the time Lilian arrived at our local hospital, but we managed to get to the hospital in the evening to see that they had both settled into their new home with ease and were sound asleep.
Things are a little different here, but we are sure that we will adjust pretty well and we are so very happy to both be living in our house together while still being able to see the Twins more (for daddy anyway).
By some miracle; beds were still available at our local hospital the next day and a transport team was available to take both babies in separate journeys. Cue a very stressful couple of hours until the Central Team arrived (this team are the East Midlands equivalent of Embrace). Jacob was taken first as he was being fed 2-hourly, and had just been fed, and the journey and handover times can run to around 2 hours. Usually a parent is permitted to travel with a baby but as I couldn't be a passenger on the way back in case they got called away to an emergency. However, the staff reassured us that he would be okay and would call as soon as Jacob arrived at our local hospital.
His journey was successful and the team came straight back for Lilian. Due to all the procedures and checks that have to be followed it was getting quite late by the time Lilian arrived at our local hospital, but we managed to get to the hospital in the evening to see that they had both settled into their new home with ease and were sound asleep.
Things are a little different here, but we are sure that we will adjust pretty well and we are so very happy to both be living in our house together while still being able to see the Twins more (for daddy anyway).
Tuesday, 20 August 2013
Eight Weeks Old Today
Just a quick one today...
We still haven't been able to transfer due to the lack of beds in our local hospital, but the Senior Consultant here reassured us that they are doing all they can to get us moving.
Jacob and Lilian have far more patience for a move than Mummy and Daddy and are both doing extremely well. Jacob and Lilian are both on High Flow and have had the amount of oxygen they are in reduced. Both are finding it easier to spend longer periods of time on their backs, as their lungs are now stronger and are able to work against gravity much more effectively!
They both had their first immunisations yesterday - these are due at 2 months of age but can be held off for preterm babies that are unwell. Since Jacob and Lilian are doing so well, the Doctor's decided they should have the immunisations as planned. Their future immunisations will be reviewed when they are due. They both had a little grumble during the jabs but recovered quickly - tough little cookies!!
Jacob's Surgeon visited Jacob and Mummy yesterday to review Jacob's Stoma, which he was pleased with. He confirmed the message we had received that Jacob can transfer hospitals was correct, but has asked for Jacob to return here for his reversal Surgery as the Surgical team already know him and would like to complete the Surgery themselves. Mummy and Daddy have the final say as to whether Jacob returns here or goes to the Specialist hospital in our local area for his Surgery, but we believe Jacob would benefit from having the same Surgical team.
We still haven't been able to transfer due to the lack of beds in our local hospital, but the Senior Consultant here reassured us that they are doing all they can to get us moving.
Jacob and Lilian have far more patience for a move than Mummy and Daddy and are both doing extremely well. Jacob and Lilian are both on High Flow and have had the amount of oxygen they are in reduced. Both are finding it easier to spend longer periods of time on their backs, as their lungs are now stronger and are able to work against gravity much more effectively!
They both had their first immunisations yesterday - these are due at 2 months of age but can be held off for preterm babies that are unwell. Since Jacob and Lilian are doing so well, the Doctor's decided they should have the immunisations as planned. Their future immunisations will be reviewed when they are due. They both had a little grumble during the jabs but recovered quickly - tough little cookies!!
Jacob's Surgeon visited Jacob and Mummy yesterday to review Jacob's Stoma, which he was pleased with. He confirmed the message we had received that Jacob can transfer hospitals was correct, but has asked for Jacob to return here for his reversal Surgery as the Surgical team already know him and would like to complete the Surgery themselves. Mummy and Daddy have the final say as to whether Jacob returns here or goes to the Specialist hospital in our local area for his Surgery, but we believe Jacob would benefit from having the same Surgical team.
Sunday, 18 August 2013
Still not moved
Well we are still in the North :( (no offence Northerners!) as our local hospital still does not have any cots in the appropriate unit for Jacob and Lilian, we have been told that the unit coordinators here will try every day to get them moved and that if the wait gets too long (we have no definition of what 'too long' actually means for them!) the coordinators at this hospital will ask the Consultants here to make a referral to the Consultants in our local hospital, as this usually results in a move fairly quickly.
In the meantime, Jacob has gone back onto Flat CPAP as he was going into a little too much oxygen on High Flow and seemed to be a bit tired. He can still transfer hospitals on Flat CPAP so that is not a problem, and he is keeping his oxygen requirement very low which is very encouraging. It's not unexpected that he would return to CPAP as he seemed to progress to High Flow a little too quickly in our opinion - he likes to get used to one change at a time!
Jacob's weight is increasing nicely and his feeds are being increased in line with his new weight. At the moment he still has his TPN to ensure he continues to gain weight but they are keeping the level he receives of that the same (so it works out as being effectively reduced due to his weight gain). His Stoma losses seem to be under control finally so there are no worries about having to reverse his Surgery before he is really suitable for it.
Lilian is very much enjoying her second go at High Flow, She is staying in around the same amount of oxygen she was using on Flat CPAP which is excellent considering she is now having to do more work herself. Her feeds have been moved to 3-hourly with a view to moving her to breast / bottle feeding in the not too distant future (no more pesky gastric tubes for her to pull out 4 times a day! - the Nurses will be pleased!).
Lilian still has a little way to go but the plan would be to get her onto Low Flow next - this provides very little breathing support, and if the Doctors think it necessary, either of the babies could be discharged while they are still on this, so this is not a barrier to them coming home at all. With the progress Lilian is making it is anticipated that she may even be promoted to Special Care before she is transferred home (this could make finding an available cot easier than trying to get 2 HDU cots), however this is still a good couple of weeks off.
In the meantime, Jacob has gone back onto Flat CPAP as he was going into a little too much oxygen on High Flow and seemed to be a bit tired. He can still transfer hospitals on Flat CPAP so that is not a problem, and he is keeping his oxygen requirement very low which is very encouraging. It's not unexpected that he would return to CPAP as he seemed to progress to High Flow a little too quickly in our opinion - he likes to get used to one change at a time!
Jacob's weight is increasing nicely and his feeds are being increased in line with his new weight. At the moment he still has his TPN to ensure he continues to gain weight but they are keeping the level he receives of that the same (so it works out as being effectively reduced due to his weight gain). His Stoma losses seem to be under control finally so there are no worries about having to reverse his Surgery before he is really suitable for it.
Lilian is very much enjoying her second go at High Flow, She is staying in around the same amount of oxygen she was using on Flat CPAP which is excellent considering she is now having to do more work herself. Her feeds have been moved to 3-hourly with a view to moving her to breast / bottle feeding in the not too distant future (no more pesky gastric tubes for her to pull out 4 times a day! - the Nurses will be pleased!).
Lilian still has a little way to go but the plan would be to get her onto Low Flow next - this provides very little breathing support, and if the Doctors think it necessary, either of the babies could be discharged while they are still on this, so this is not a barrier to them coming home at all. With the progress Lilian is making it is anticipated that she may even be promoted to Special Care before she is transferred home (this could make finding an available cot easier than trying to get 2 HDU cots), however this is still a good couple of weeks off.
Thursday, 15 August 2013
A Change of Scene
Both Jacob and Lilian are doing really well, so the Doctors have decided to give them both a try at High Flow today. We'll see how they get on.....
We were given the fab news on Monday that the Surgeons are happy for Jacob to move to our local hospital. The specialist hospital in our area can then do his reversal Surgery when necessary. It is now just a waiting game to get transferred as unfortunately our local hospital has no spare cots on their High Dependency Unit. Fingers and toes crossed for at least two babies to get promoted to Special Care so that we can move home!
High Flow piccies......
We were given the fab news on Monday that the Surgeons are happy for Jacob to move to our local hospital. The specialist hospital in our area can then do his reversal Surgery when necessary. It is now just a waiting game to get transferred as unfortunately our local hospital has no spare cots on their High Dependency Unit. Fingers and toes crossed for at least two babies to get promoted to Special Care so that we can move home!
High Flow piccies......
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| Jacob's Handsome Face |
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| Lilian's Beautiful Face |
Monday, 12 August 2013
A Look At The Last Few Days
The good news is that Jacob has joined his Sister on the High Dependency Unit (HDU) which is a massive step forward for him! He has been there since Tuesday evening and is doing well.
There's recently been a switch in Doctors looking after Jacob and Lilian (the Senior House Officers and some Registrars, but not the Consultants) on the unit as they have to rotate every 6 months to different hospitals, which has slowed progress for the twins as new people learn the ways of our twins.
As a result of this Jacob was put back on BiPAP on Thursday because his gas result wasn't too good (although it was later confirmed that it is a perfectly normal result for him!), he had also spent nearly all day on his back (his least favourite position, and the hardest position to breathe in due to gravity acting on their chests) so we don't feel that Jacob going back on BiPAP is truly representative of how he is getting on. Ever since then he has kept his oxygen requirement low and as a result was put back on Flat CPAP around 3pm today.
Lilian is still on Flat CPAP after being put back on it a few days ago but is continuing to do well, so we are hoping she will get a chance on 'High Flow' again soon. Lilian has had Fortifier added to her feeds to help her gain more weight. Her feed volumes can't be increased as she is already on full feeds for her weight, but her weight gain is not as rapid as it should be and her progression on her growth chart was starting to plateau. We're pleased to report though that the addition of the Fortifier has helped her to gain a more acceptable amount of weight.
Jacob is now gaining weight continuously over his weigh days and as a result the Doctors are happy to reduce his TPN amounts and increase his milk. The increase in milk isn't having a negative effect on his Stoma losses either which is really pleasing!
Today it was officially confirmed by the Surgeons that they are happy for Jacob to be released to our local hospital once he is stable on Flat CPAP. He will then need to go to another specialist hospital near our local hospital for his Stoma reversal surgery as, unfortunately, our local hospital do not have the surgical expertise required to reverse it themselves.
We're keeping everything crossed that we can take that long-awaited journey down the motorway and get the babies back nearer home.
There's recently been a switch in Doctors looking after Jacob and Lilian (the Senior House Officers and some Registrars, but not the Consultants) on the unit as they have to rotate every 6 months to different hospitals, which has slowed progress for the twins as new people learn the ways of our twins.
As a result of this Jacob was put back on BiPAP on Thursday because his gas result wasn't too good (although it was later confirmed that it is a perfectly normal result for him!), he had also spent nearly all day on his back (his least favourite position, and the hardest position to breathe in due to gravity acting on their chests) so we don't feel that Jacob going back on BiPAP is truly representative of how he is getting on. Ever since then he has kept his oxygen requirement low and as a result was put back on Flat CPAP around 3pm today.
Lilian is still on Flat CPAP after being put back on it a few days ago but is continuing to do well, so we are hoping she will get a chance on 'High Flow' again soon. Lilian has had Fortifier added to her feeds to help her gain more weight. Her feed volumes can't be increased as she is already on full feeds for her weight, but her weight gain is not as rapid as it should be and her progression on her growth chart was starting to plateau. We're pleased to report though that the addition of the Fortifier has helped her to gain a more acceptable amount of weight.
Jacob is now gaining weight continuously over his weigh days and as a result the Doctors are happy to reduce his TPN amounts and increase his milk. The increase in milk isn't having a negative effect on his Stoma losses either which is really pleasing!
Today it was officially confirmed by the Surgeons that they are happy for Jacob to be released to our local hospital once he is stable on Flat CPAP. He will then need to go to another specialist hospital near our local hospital for his Stoma reversal surgery as, unfortunately, our local hospital do not have the surgical expertise required to reverse it themselves.
We're keeping everything crossed that we can take that long-awaited journey down the motorway and get the babies back nearer home.
Tuesday, 6 August 2013
This Time Six Weeks Ago.......
........I was being raced down to the Labour Ward as my contractions had restarted, and the Neonatal staff had all started assembling themselves and their equipment ready for Lilian and Jacob's birth (they were stood down shortly after when my contractions stopped AGAIN!).
On the one hand the time has gone very quickly, on the other, i don't remember living anywhere but the hospital!
Jacob has progressed back onto Flat CPAP (cuddles with Daddy yesterday clearly was all the push he needed), and we are really pleased with him. Fingers crossed he continues to remember to breathe for himself and he should be ok to continue as he is.
It has been decided that Jacob's medicines (vitamins, bowel medicine, caffeine, sodium, etc) should now be given via his TPN bag rather than orally as the Surgeons think this will help reduce his Stoma losses. There is still no news though on when they might want to reverse his Stoma.
Lilian has continued as she normally does. After a couple of dodgy gas results the Registrar decided to put Lilian back on Flat CPAP. The Nurse looking after Lilian was surprised that this decision was taken as the gas result is in line with Lilian's other results and her saturation levels had been fine all day. We're hoping that this means she will be back on High Flow soon though.
On the one hand the time has gone very quickly, on the other, i don't remember living anywhere but the hospital!
Jacob has progressed back onto Flat CPAP (cuddles with Daddy yesterday clearly was all the push he needed), and we are really pleased with him. Fingers crossed he continues to remember to breathe for himself and he should be ok to continue as he is.
It has been decided that Jacob's medicines (vitamins, bowel medicine, caffeine, sodium, etc) should now be given via his TPN bag rather than orally as the Surgeons think this will help reduce his Stoma losses. There is still no news though on when they might want to reverse his Stoma.
Lilian has continued as she normally does. After a couple of dodgy gas results the Registrar decided to put Lilian back on Flat CPAP. The Nurse looking after Lilian was surprised that this decision was taken as the gas result is in line with Lilian's other results and her saturation levels had been fine all day. We're hoping that this means she will be back on High Flow soon though.
Friday, 2 August 2013
The Difference Between Jacob and Lilian
Jacob and Lilian have both been stable over the past few days. So stable in fact that Lilian has been moved from Intensive Care to the downgraded High Dependency Unit (HDU), this means that she and Jacob are now in different Nurseries on the Neonatal Unit (*sadface*), but we have to take it as a positive that Lilian is managing better on her own and needs less medical intervention.
Lilian had a good cuddle with Mummy yesterday, and then it was decided that as she was tolerating her re-location so well she would be tried on 'High Flow' instead of her CPAP. This is the middle ground between having the breathing support of CPAP and having no support at all, so she is doing really well! She has now been on 'High Flow' for around 24 hours and spends a lot more time with her eyes open and nosing around the Nursery at the other babies! She now no longer has to wear all the kit she needed for CPAP so we get to see more of her beautiful face.
As she's now a big girl, she has to start getting used to wearing clothes and she has a pretty little vest to wear in her incubator!
Jacob also had a cuddle with Mummy yesterday (and hopefully today too) and it seems to be having some benefits for him - he has been very stable with his breathing but hasn't made any progress with it so unfortunately he is still on BiPAP. He has however, gained a massive amount of weight! Some of which is due to fluid retention so he looks a bit puffy, but most is genuine weight gain which has pleased his Doctors. His Stoma is functioning at varying rates, and this is something that the Doctors want to control a bit more, and the Surgical team are in frequent contact with Jacob to make sure they remain happy with how he is doing (one of the surgical consultants advised a few days ago that they may look to reverse Jacob's Stoma sooner rather than later if he continually loses too much from it. At the moment this is the last option they will choose but it's not impossible that Jacob could be back in Surgery sooner than originally anticipated).
I was advised today that technically Lilian is ready to move to our local hospital, but as we have been told all along, they do not want to split Lilian and Jacob up, so Lilian will remain where she is. I was also told that they do not think Jacob would be ready to move for at least another couple of weeks, and due to the Surgical team keeping an eye on his stoma losses (and our local hospital being unable to provide the relevant level of surgical expertise), it is looking more likely that Jacob may not transfer to our local hospital at all, and simply be discharged from here when he is well enough.
This puts around another 2 months on our stay up here, which has been a bit of a blow as we fully expected to phase their return home via our local hospital, and get re-settled living at home before we brought them home. However, the Consultant's parting words on ward rounds were '.....but, there's a different Consultant on tomorrow so they may say something completely different'......... welcome to the uncertainty of our world!
Lilian had a good cuddle with Mummy yesterday, and then it was decided that as she was tolerating her re-location so well she would be tried on 'High Flow' instead of her CPAP. This is the middle ground between having the breathing support of CPAP and having no support at all, so she is doing really well! She has now been on 'High Flow' for around 24 hours and spends a lot more time with her eyes open and nosing around the Nursery at the other babies! She now no longer has to wear all the kit she needed for CPAP so we get to see more of her beautiful face.
As she's now a big girl, she has to start getting used to wearing clothes and she has a pretty little vest to wear in her incubator!
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| Lilian's High-Flow Kit and first outfit! |
Jacob also had a cuddle with Mummy yesterday (and hopefully today too) and it seems to be having some benefits for him - he has been very stable with his breathing but hasn't made any progress with it so unfortunately he is still on BiPAP. He has however, gained a massive amount of weight! Some of which is due to fluid retention so he looks a bit puffy, but most is genuine weight gain which has pleased his Doctors. His Stoma is functioning at varying rates, and this is something that the Doctors want to control a bit more, and the Surgical team are in frequent contact with Jacob to make sure they remain happy with how he is doing (one of the surgical consultants advised a few days ago that they may look to reverse Jacob's Stoma sooner rather than later if he continually loses too much from it. At the moment this is the last option they will choose but it's not impossible that Jacob could be back in Surgery sooner than originally anticipated).
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| Jacob looking a little fuller-faced |
I was advised today that technically Lilian is ready to move to our local hospital, but as we have been told all along, they do not want to split Lilian and Jacob up, so Lilian will remain where she is. I was also told that they do not think Jacob would be ready to move for at least another couple of weeks, and due to the Surgical team keeping an eye on his stoma losses (and our local hospital being unable to provide the relevant level of surgical expertise), it is looking more likely that Jacob may not transfer to our local hospital at all, and simply be discharged from here when he is well enough.
This puts around another 2 months on our stay up here, which has been a bit of a blow as we fully expected to phase their return home via our local hospital, and get re-settled living at home before we brought them home. However, the Consultant's parting words on ward rounds were '.....but, there's a different Consultant on tomorrow so they may say something completely different'......... welcome to the uncertainty of our world!
Tuesday, 30 July 2013
Five Weeks Old Today
As the twins see another week go by (can't believe it's gone so fast!), we have had the good news that they had their first eye tests this morning and they were normal! Their next test will be in around 2 weeks time. Click here for more information on the eye tests. This was something that we were quite worried about as it's very common for issues to be found in pre-term babies. Although they're not guaranteed to have no issues with their eyesight it's certainly a great start.
The babies had their tests first thing this morning, so in preparation they had their oxygen increased as babies don't tend to react very well to the testing procedure, however Lilian and Jacob seem to have had no issues at all and have reduced their oxygen requirement back down again. In order to let Jacob recover the decision was made that they would delay putting him back on flat CPAP. Hopefully he can go back on this tomorrow.
Other than that both Lilian and Jacob are very well, and we are very pleased indeed.
The babies had their tests first thing this morning, so in preparation they had their oxygen increased as babies don't tend to react very well to the testing procedure, however Lilian and Jacob seem to have had no issues at all and have reduced their oxygen requirement back down again. In order to let Jacob recover the decision was made that they would delay putting him back on flat CPAP. Hopefully he can go back on this tomorrow.
Other than that both Lilian and Jacob are very well, and we are very pleased indeed.
Lilian Leading The Way
Now, we were told early on that we shouldn't compare Lilian and Jacob to each other as despite being twins, they are separate babies (also because boys usually don't do as well as girls, particularly in a pre-term situation) it wouldn't be fair to look at them in this way. However, the Doctor's have encouraged some healthy competition / leading the way between the two (and for the large part the twins seem happy to comply!).
Lilian is being an absolute superstar and is practically behaving in a textbook 'best scenario' way; she is tolerating her whopping 180ml-a-day feeds at 2-hourly intervals and is well on course to start her 3-hourly feeds, which the Doctor's hope to start in the next couple of days. She has gained weight (62g to be precise - taking her up to 1036g overall), which is making her stronger and ready for the next challenge! She has been tolerating flat CPAP so well that in the next week or so they are looking to take her off CPAP completely, she will then just have a supply of oxygen!
Jacob on the other hand has had a bit of a setback over the past couple of days. He was de-saturating quite frequently (his blood saturation levels were dropping) on Saturday evening and as a result the Doctor's took some blood gases; the results of which were quite bad so they decided to put him back on full CPAP (which we now know is called BiPhasic CPAP! or BiPAP for short) and give him suction to clear out his throat. Judging by how well he did on the BiPAP after the suction it was believed that he must have just had some secretions stuck which was causing him difficulty. To be sure, an x-ray was carried out which was clear. Though it was decided that he would stay on BiPAP on Sunday and again today so as not to keep chopping and changing what is happening with him.
Jacob has unfortunately also lost weight, which he should not be doing at this point so it was decided that he would have his food intake increased, but due to his stoma losses being so high, he couldn't have increased milk feeds. It was then decided that they would have to reduce his milk feeds to 100ml a day and give him 80ml a day of TPN (food made especially for them that goes into their body through a long-line). So we're hoping this enables him to put on weight so that he can get stronger.
This set back for Jacob is very frustrating and we hope that our little man can get back on track after doing so well to this point, and catch up to his little sister.
Oh and in case you were wondering, we managed to get a family photo over the weekend! Which we are chuffed to bits about - we're not posting it on here though for privacy reasons.
Lilian is being an absolute superstar and is practically behaving in a textbook 'best scenario' way; she is tolerating her whopping 180ml-a-day feeds at 2-hourly intervals and is well on course to start her 3-hourly feeds, which the Doctor's hope to start in the next couple of days. She has gained weight (62g to be precise - taking her up to 1036g overall), which is making her stronger and ready for the next challenge! She has been tolerating flat CPAP so well that in the next week or so they are looking to take her off CPAP completely, she will then just have a supply of oxygen!
Jacob on the other hand has had a bit of a setback over the past couple of days. He was de-saturating quite frequently (his blood saturation levels were dropping) on Saturday evening and as a result the Doctor's took some blood gases; the results of which were quite bad so they decided to put him back on full CPAP (which we now know is called BiPhasic CPAP! or BiPAP for short) and give him suction to clear out his throat. Judging by how well he did on the BiPAP after the suction it was believed that he must have just had some secretions stuck which was causing him difficulty. To be sure, an x-ray was carried out which was clear. Though it was decided that he would stay on BiPAP on Sunday and again today so as not to keep chopping and changing what is happening with him.
Jacob has unfortunately also lost weight, which he should not be doing at this point so it was decided that he would have his food intake increased, but due to his stoma losses being so high, he couldn't have increased milk feeds. It was then decided that they would have to reduce his milk feeds to 100ml a day and give him 80ml a day of TPN (food made especially for them that goes into their body through a long-line). So we're hoping this enables him to put on weight so that he can get stronger.
This set back for Jacob is very frustrating and we hope that our little man can get back on track after doing so well to this point, and catch up to his little sister.
Oh and in case you were wondering, we managed to get a family photo over the weekend! Which we are chuffed to bits about - we're not posting it on here though for privacy reasons.
Thursday, 25 July 2013
One Step Closer
Today the Nurses surprised me with the news that both Jacob and Lilian had been put onto flat CPAP and had been handling it well. They have both continued to do well throughout the day so we couldn't be more pleased!
As the babies are doing so well I was allowed to hold them both yesterday (one after the other, not together!), and again today. So long as the Nursery is relatively quiet over the weekend the Nurses have told us we can have them both out together when Daddy comes to visit, so we may be able to get our first family photo! Fingers crossed for a quiet weekend!
Thursday's and Sunday's are weigh days and we're pleased to hear that they are both gaining weight! Jacob has gone on to some medication to help him to reabsorb as much water as possible before he loses it from his stoma, and they have had to increase the dose today as he is not responding to it as well as anticipated.
They are both really starting to show their personalities now and Lilian is certainly enjoying giving the Nurses the run-around! No sooner has she got a new gastric tube inserted (feeding tube), than Lilian pulls the tape off her face and the tube out of her mouth! She certainly does not like to be woken up either - she was enjoying a heavy sleep earlier today and wimpered all the way through the Nurse's checks and her nappy change. As soon as she was back on her belly she was out like a light again!
Jacob is largely very content and laidback. He enjoys his interactions with the Doctors and Nurses and even lay very still for his new Canulla to be fitted today (such a brave little boy), although if there's even a hint that you're going to change his nappy he wriggles away from you so that you can't reach him through one side of the incubator!
All in all a good few days.
As the babies are doing so well I was allowed to hold them both yesterday (one after the other, not together!), and again today. So long as the Nursery is relatively quiet over the weekend the Nurses have told us we can have them both out together when Daddy comes to visit, so we may be able to get our first family photo! Fingers crossed for a quiet weekend!
Thursday's and Sunday's are weigh days and we're pleased to hear that they are both gaining weight! Jacob has gone on to some medication to help him to reabsorb as much water as possible before he loses it from his stoma, and they have had to increase the dose today as he is not responding to it as well as anticipated.
They are both really starting to show their personalities now and Lilian is certainly enjoying giving the Nurses the run-around! No sooner has she got a new gastric tube inserted (feeding tube), than Lilian pulls the tape off her face and the tube out of her mouth! She certainly does not like to be woken up either - she was enjoying a heavy sleep earlier today and wimpered all the way through the Nurse's checks and her nappy change. As soon as she was back on her belly she was out like a light again!
Jacob is largely very content and laidback. He enjoys his interactions with the Doctors and Nurses and even lay very still for his new Canulla to be fitted today (such a brave little boy), although if there's even a hint that you're going to change his nappy he wriggles away from you so that you can't reach him through one side of the incubator!
All in all a good few days.
Tuesday, 23 July 2013
Four Weeks Old Today
Both Jacob and Lilian have been stable over the past few days.
Jacob has been having a slight issue with his CPAP prongs staying up his nose - to avoid damage to their nose, the babies have to switch between wearing a mask over their nose and prongs that fit up their nose for their oxygen supply. So he tends to get quite unsettled when he has in prongs in as they keep falling out of his nose and cause him to drop his breathing rate.
As a result of this they tried Jacob on 'flat CPAP', which is the next stage we are aiming for. This type of CPAP does not force the air in as their current version does, so they have to remember to breathe for themselves, and the CPAP then just supplies the oxygen levels. Unfortunately, Jacob isn't quite ready for this yet though and had to be put back on full CPAP.
Lilian is doing really well and is hopefully going to be tried on 'flat CPAP' by the end of this week. At the moment she is a little stronger than her brother, and as such, they think she will take to this quite well.
Now for something exciting...
Over the past couple of days we have been advised that the hospital have been in touch with our local hospital to discuss the possibility of transferring the babies back home. We have been advised not to get ahead of ourselves as anything could change at any time, but in theory, if both babies get settled on flat CPAP they could be transferred in as little as 2-3 weeks.
There is the added complication that the Surgeons may not let Jacob travel, they usually like to finish their own treatments/surgery and Jacob still needs his reversal Stoma surgery. This is something the Consultant's are checking on for us.
Both babies have to be settled on flat CPAP as the transfer team (Embrace) cannot support the level of CPAP the babies are currently on. The actual transfer date could also be difficult to pin down until the last minute as the Embrace Ambulance has to be ready, the babies have to have the go ahead from the Surgeons and Consultants, and our local hospital must have 2 cots available all at the same time - and as we have witnessed on the Neonatal ward, a cot does not stay empty for long!
Jacob has been having a slight issue with his CPAP prongs staying up his nose - to avoid damage to their nose, the babies have to switch between wearing a mask over their nose and prongs that fit up their nose for their oxygen supply. So he tends to get quite unsettled when he has in prongs in as they keep falling out of his nose and cause him to drop his breathing rate.
As a result of this they tried Jacob on 'flat CPAP', which is the next stage we are aiming for. This type of CPAP does not force the air in as their current version does, so they have to remember to breathe for themselves, and the CPAP then just supplies the oxygen levels. Unfortunately, Jacob isn't quite ready for this yet though and had to be put back on full CPAP.
Lilian is doing really well and is hopefully going to be tried on 'flat CPAP' by the end of this week. At the moment she is a little stronger than her brother, and as such, they think she will take to this quite well.
Now for something exciting...
Over the past couple of days we have been advised that the hospital have been in touch with our local hospital to discuss the possibility of transferring the babies back home. We have been advised not to get ahead of ourselves as anything could change at any time, but in theory, if both babies get settled on flat CPAP they could be transferred in as little as 2-3 weeks.
There is the added complication that the Surgeons may not let Jacob travel, they usually like to finish their own treatments/surgery and Jacob still needs his reversal Stoma surgery. This is something the Consultant's are checking on for us.
Both babies have to be settled on flat CPAP as the transfer team (Embrace) cannot support the level of CPAP the babies are currently on. The actual transfer date could also be difficult to pin down until the last minute as the Embrace Ambulance has to be ready, the babies have to have the go ahead from the Surgeons and Consultants, and our local hospital must have 2 cots available all at the same time - and as we have witnessed on the Neonatal ward, a cot does not stay empty for long!
Saturday, 20 July 2013
Over to Jacob
Both babies had a good day yesterday, and I was very pleased to see Lilian still on CPAP in the morning. She was even on an oxygen rate of around 40% first thing! She is doing so well!
Jacob came off his Morphine and during ward rounds it was decided that he was definitely ready to give CPAP a go. No guarantees he would stay on it, but at least we're moving forward. So at around 11:30am Jacob was extubated and got his second taste of freedom!
Both of the little ones managed to stay on CPAP all of yesterday and are still on it today so it is looking like that is how they will remain unless (touching wood) we have a set back.
With Daddy back from being at work all week, he got to hold Jacob today for around an hour, which was a huge boost for him and it really seemed to help Jacob to become more stable on his new breathing set up.
Lilian has also been doing well today and is continuing to be stable on the CPAP and it looks as though she just needs to concentrate on staying stable and growing.
So while things are going well and our days are filled with Kangaroo Care and the most excitement in our days involves changing dirty nappies/stoma bags; we have deiced that we will cut down on the number of updates to perhaps once every two days.
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| Lilian all tucked in |
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| Jacob enjoying the freedom |
With Daddy back from being at work all week, he got to hold Jacob today for around an hour, which was a huge boost for him and it really seemed to help Jacob to become more stable on his new breathing set up.
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| Jacob enjoying his cuddle and gripping Daddy's finger |
Lilian has also been doing well today and is continuing to be stable on the CPAP and it looks as though she just needs to concentrate on staying stable and growing.
So while things are going well and our days are filled with Kangaroo Care and the most excitement in our days involves changing dirty nappies/stoma bags; we have deiced that we will cut down on the number of updates to perhaps once every two days.
Friday, 19 July 2013
A Very Busy Day Indeed
After a late night cuddling Jacob, a very bleary eyed Mummy got the news on ward rounds that Lilian was to get her second bash at CPAP. The Consultant thought she was now ready to give it another go, so at midday she came off her ventilator.
She had quite a sluggish start with fairly bad blood gas results for the first 2 hours, but had good stats other than that, so the Doctor's advised that she had one last hour to improve her gas results or they would put her back on the ventilator.
Clearly inheriting someone's stubborn side (ahem!), Lilian decided she was not having the tube back in her lungs any time soon and by the time Mummy went to see Lilian and Jacob this afternoon she had spent 6 hours on CPAP and was only using 61% oxygen (compared to 100% the first time she tried CPAP). I couldn't have been more pleasantly surprised! So proud of Lilian!
The Consultant had also suggested that Jacob may be ready for his first post-op go at CPAP. As she didn't want to overwhelm the nurses (and me) with having both Baby D's giving CPAP a try at the same time; it was suggested that Jacob start on CPAP tomorrow if he remains stable over night.
Not wanting to miss out on any attention, Jacob has been reducing his oxygen and pressure needs throughout the day (I learnt that the medical equipment beeps at very good readings as well as low readings!).
Jacob seems to be able to have more normal bowel movements now (as normal as they can be when you have a stoma) so he has had a bag put over his Stoma and Fistulla to collect any waste. This should help to keep everything away from his wound, allow the Nurses to see exactly what he is passing, and hopefully, make him easier to clean come nappy-changes!
Evening update:
Lilian has been on CPAP for 12 hours now and is down to around 55% oxygen so she is doing fab!
Jacob is looking really good too so he is on course to have his morphine stopped at 6am and then go onto CPAP.
She had quite a sluggish start with fairly bad blood gas results for the first 2 hours, but had good stats other than that, so the Doctor's advised that she had one last hour to improve her gas results or they would put her back on the ventilator.
Clearly inheriting someone's stubborn side (ahem!), Lilian decided she was not having the tube back in her lungs any time soon and by the time Mummy went to see Lilian and Jacob this afternoon she had spent 6 hours on CPAP and was only using 61% oxygen (compared to 100% the first time she tried CPAP). I couldn't have been more pleasantly surprised! So proud of Lilian!
The Consultant had also suggested that Jacob may be ready for his first post-op go at CPAP. As she didn't want to overwhelm the nurses (and me) with having both Baby D's giving CPAP a try at the same time; it was suggested that Jacob start on CPAP tomorrow if he remains stable over night.
Not wanting to miss out on any attention, Jacob has been reducing his oxygen and pressure needs throughout the day (I learnt that the medical equipment beeps at very good readings as well as low readings!).
Jacob seems to be able to have more normal bowel movements now (as normal as they can be when you have a stoma) so he has had a bag put over his Stoma and Fistulla to collect any waste. This should help to keep everything away from his wound, allow the Nurses to see exactly what he is passing, and hopefully, make him easier to clean come nappy-changes!
Evening update:
Lilian has been on CPAP for 12 hours now and is down to around 55% oxygen so she is doing fab!
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| Lilian with her new kit on for CPAP |
Jacob is looking really good too so he is on course to have his morphine stopped at 6am and then go onto CPAP.
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| Jacob has found his mouth.....but there's a tube in it! |
Thursday, 18 July 2013
GroundHog Day
Well i feel like i'm living the same day over and over at the moment, but i shouldn't complain, as at least we're not going backwards .
The Babies have been largely stable over night, they've both had a couple of little niggles, but nothing major to be concerned about.
Lilian is believed to have a chest infection based on a blood test that the Doctor's did. The bloods themselves are inconclusive so we need to wait for the cultures to be certain, but the blood did seem to suggest an issue so Lilian has been put back on antibiotics for now. They increased Lilian's feed through the night to 150ml a day, and as she is tolerating it with no further issues with being sick, they are increasing the feeds to 165ml, and so long as this continues well she will go up to 180ml tomorrow.
Jacob is having a few less than great results on his gases, and every now and then his blood saturation levels drop for no apparent reason but other than that he is ok. They are looking to up his feeds slightly today as he seems to be tolerating what he has had so far and his stoma is functioning well.
Evening update:
Both Jacob and Lilian were both doing well so the consultant suggested we do another Kangaroo Care. Jacob got a nice 2 hour cuddle with Mummy and looked like he'd settled himself in for the night! Unfortunately he did need to go back in his incubator though. Hopefully Lilian will get her turn soon.
No pictures today.....
The Babies have been largely stable over night, they've both had a couple of little niggles, but nothing major to be concerned about.
Lilian is believed to have a chest infection based on a blood test that the Doctor's did. The bloods themselves are inconclusive so we need to wait for the cultures to be certain, but the blood did seem to suggest an issue so Lilian has been put back on antibiotics for now. They increased Lilian's feed through the night to 150ml a day, and as she is tolerating it with no further issues with being sick, they are increasing the feeds to 165ml, and so long as this continues well she will go up to 180ml tomorrow.
Jacob is having a few less than great results on his gases, and every now and then his blood saturation levels drop for no apparent reason but other than that he is ok. They are looking to up his feeds slightly today as he seems to be tolerating what he has had so far and his stoma is functioning well.
Evening update:
Both Jacob and Lilian were both doing well so the consultant suggested we do another Kangaroo Care. Jacob got a nice 2 hour cuddle with Mummy and looked like he'd settled himself in for the night! Unfortunately he did need to go back in his incubator though. Hopefully Lilian will get her turn soon.
No pictures today.....
Wednesday, 17 July 2013
It's Official
Well there's not too much to report again today really.
They were going to try to increase Lilian's feeds from around 120ml a day to 180ml but she has been a little sick after a few feeds so they're not going to push her. Other than that she is much the same as yesterday, tiny little bits of progress and slightly wobbly stats (not jumping around so nothing to worry about, but could be more stable).
Jacob is well too. The Canulla in his hand has finally 'gone' although unfortunately it went during a blood transfusion so he very nearly ended up with a second blood bath! Luckily they caught it early so that didn't happen. So he now has a hand free! (His longline is in the other hand / arm), and his new Cannula is in his foot. His blood saturation levels drop slightly every now and then for no apparent reason but he quickly recovers them, which is slowing the progress with him but it's better than a lot of things that could be happening right now.
Jacob's feeds have been increased to 1.3ml every hour! Yay proper feeds! So we just need to see how he goes with that, hopefully he can tolerate them. His stoma has been working well so far so it looks like he is digesting the milk.
Today Mummy got to register Jacob's and Lilian's birth so they are now all official!
They were going to try to increase Lilian's feeds from around 120ml a day to 180ml but she has been a little sick after a few feeds so they're not going to push her. Other than that she is much the same as yesterday, tiny little bits of progress and slightly wobbly stats (not jumping around so nothing to worry about, but could be more stable).
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| Beautiful Lilian fully awake and looking at Mummy! |
Jacob is well too. The Canulla in his hand has finally 'gone' although unfortunately it went during a blood transfusion so he very nearly ended up with a second blood bath! Luckily they caught it early so that didn't happen. So he now has a hand free! (His longline is in the other hand / arm), and his new Cannula is in his foot. His blood saturation levels drop slightly every now and then for no apparent reason but he quickly recovers them, which is slowing the progress with him but it's better than a lot of things that could be happening right now.
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| Look Mummy, free hand.... |
Jacob's feeds have been increased to 1.3ml every hour! Yay proper feeds! So we just need to see how he goes with that, hopefully he can tolerate them. His stoma has been working well so far so it looks like he is digesting the milk.
Today Mummy got to register Jacob's and Lilian's birth so they are now all official!
Monday, 15 July 2013
Lilian's time to shine
Both Lilian and Jacob had a good night and a good rest from the sound of things.
Lilian had maintained good stats (and had a very good gas result i'm told!) so the Consultant this morning decided she was ready to try CPAP. She was put on it about 10:15am and she will stay on it as long as she is able to comfortably sustain her own breathing. As was the case with Jacob it is expected that she will swap between being on it and back on the ventilator, but at least she is moving forwards. Well done Lilian! They have withheld a couple of her hourly feeds while they moved her onto CPAP so that she wasn't overwhelmed by everything happening at once.
There's not too much to report on Jacob as not much has changed particularly, which is actually very nice to hear! He will continue on with his minimal feeds (0.7ml every 2 hours) as he seems to be keeping them down - just need your stoma to function now little man! The Consultant advised that although there was a leak with the blood transfusion yesterday, Jacob did manage to get the full amount of blood he needed so there is no need to top him up. He may still need further transfusions as part of his care though, but at least there's no more messing for now!
Evening update:
Lilian spent 90 minutes on CPAP in the end as her stats were at the low end of acceptable and the Doctor's didn't want to work her too hard and end up letting her drop her numbers. The good news is that she's had a go, the Doctor's were pleased with her, and they will try her again in a few days. It also means that she got a new breathing tube inserted when she want back on the ventilator and the Nurse found that the old one was partially blocked with secretions so her numbers had actually been fantastic before she went on CPAP and the Doctor's expect her to be even better now with a clear tube.
Lilian had maintained good stats (and had a very good gas result i'm told!) so the Consultant this morning decided she was ready to try CPAP. She was put on it about 10:15am and she will stay on it as long as she is able to comfortably sustain her own breathing. As was the case with Jacob it is expected that she will swap between being on it and back on the ventilator, but at least she is moving forwards. Well done Lilian! They have withheld a couple of her hourly feeds while they moved her onto CPAP so that she wasn't overwhelmed by everything happening at once.
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| Jacob having a big stretch |
Evening update:
Lilian spent 90 minutes on CPAP in the end as her stats were at the low end of acceptable and the Doctor's didn't want to work her too hard and end up letting her drop her numbers. The good news is that she's had a go, the Doctor's were pleased with her, and they will try her again in a few days. It also means that she got a new breathing tube inserted when she want back on the ventilator and the Nurse found that the old one was partially blocked with secretions so her numbers had actually been fantastic before she went on CPAP and the Doctor's expect her to be even better now with a clear tube.
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| Lilian with her fresh breathing tube |
A Lot More Eye Action
The good news is that Jacob and Lilian have both been stable again overnight!
Jacob restarted his feeds at 4am and by 7pm seemed to be tolerating them well (we need his stoma to function now though so that we know everything is ok). He's had a new Cannula put in his hand as he needed another transfusion (routine stuff). However, I was scared to death during my last visit as Jacob was covered in blood. It turns out that one part of his Cannula was quite loose and the transfusion blood had leaked rather than it being Jacob's blood - what a relief!
Lilian is now on full feeds and weighs around 930g! So she's now around the 2lb mark. She hasn't gone onto CPAP yet as her stats (her gas in particular) weren't as good as the Doc's wanted them to be this morning but they have improved throughout the day. They will review again in the morning as she has minimal oxygen and ventilation so she needs that push sooner or later. As Lilian is now on full feeds her Morphine has been stopped completely (hooray!) and her top-up feed IV has been removed so she only has the breathing / feeding tubes in her now and then sensors on her body. Her Cannula is being left in her hand for the time-being in case they need it but we're hoping that will be out soon too.
Both babies seem a lot more 'with it' and are spending more time with their beautiful eyes open! Both of them just have dark eyes at the moment as it's too soon for them to have colour. I like to think they're having a good gawp at Mummy and Daddy but in reality they won't be able to see very much, but all in good time i'm sure they will.
Sorry no pics today - frantic evening what with Jacob's'blood bath'.
Jacob restarted his feeds at 4am and by 7pm seemed to be tolerating them well (we need his stoma to function now though so that we know everything is ok). He's had a new Cannula put in his hand as he needed another transfusion (routine stuff). However, I was scared to death during my last visit as Jacob was covered in blood. It turns out that one part of his Cannula was quite loose and the transfusion blood had leaked rather than it being Jacob's blood - what a relief!
Lilian is now on full feeds and weighs around 930g! So she's now around the 2lb mark. She hasn't gone onto CPAP yet as her stats (her gas in particular) weren't as good as the Doc's wanted them to be this morning but they have improved throughout the day. They will review again in the morning as she has minimal oxygen and ventilation so she needs that push sooner or later. As Lilian is now on full feeds her Morphine has been stopped completely (hooray!) and her top-up feed IV has been removed so she only has the breathing / feeding tubes in her now and then sensors on her body. Her Cannula is being left in her hand for the time-being in case they need it but we're hoping that will be out soon too.
Both babies seem a lot more 'with it' and are spending more time with their beautiful eyes open! Both of them just have dark eyes at the moment as it's too soon for them to have colour. I like to think they're having a good gawp at Mummy and Daddy but in reality they won't be able to see very much, but all in good time i'm sure they will.
Sorry no pics today - frantic evening what with Jacob's'blood bath'.
Saturday, 13 July 2013
18 Days Old Today
This morning I managed to catch ward rounds again and the Consultant advised that Lilian is doing really well. She has reduced her oxygen and ventilation again and has been tolerating full feeds! She has also showed real signs of weight gain and growth rather than just being puffy from the drugs so they are planning on giving her a top-up blood transfusion today and then giving her loads of Caffeine so she's ready for CPAP. All being well with today she will then be taken off the ventilator and put onto CPAP tomorrow! Fingers crossed for Lilian.
Jacob has been a bit poorly as they re-started him on his feeds but he is bringing them back up again. They are looking out for signs of his tummy being Distended, but they don't believe it is at the moment. They are a little unsure how to proceed with him so currently the plan is to withhold his feeds until later today / early tomorrow, in the meantime keep an eye on his tummy. If it looks Distended then they will scan it, it could be that the other part of the gut the surgeons were concerned about has either shrunk so his feed can't get through, has got worse, or simply that his gut is still too immature to tolerate feeds. The consultant believes it is the latter and we are keeping everything crossed that this is the case - we can't stand the thought of him needing further surgery. Only time will tell what he needs though so unfortunately it's a waiting game.
On a lighter note, Mummy got to hold Lilian for the first time today - should have been Daddy, but the sheer heat (28C outside, but waaaayyyy hotter on the neonatal unit!) is making him really uncomfortable and he didn't want to make Lilian uncomfortable too. Lilian behaved much in the same way as Jacob, although she didn't need so many staff to get her out of her incubator. She settled quickly on Mummy's chest and had a good hour-and-a-half nap on Mummy!
Both babies have now started their Kangaroo Care! This has a laundry list of benefits for the babies, and is very nice for us parents too.
Jacob has been a bit poorly as they re-started him on his feeds but he is bringing them back up again. They are looking out for signs of his tummy being Distended, but they don't believe it is at the moment. They are a little unsure how to proceed with him so currently the plan is to withhold his feeds until later today / early tomorrow, in the meantime keep an eye on his tummy. If it looks Distended then they will scan it, it could be that the other part of the gut the surgeons were concerned about has either shrunk so his feed can't get through, has got worse, or simply that his gut is still too immature to tolerate feeds. The consultant believes it is the latter and we are keeping everything crossed that this is the case - we can't stand the thought of him needing further surgery. Only time will tell what he needs though so unfortunately it's a waiting game.
On a lighter note, Mummy got to hold Lilian for the first time today - should have been Daddy, but the sheer heat (28C outside, but waaaayyyy hotter on the neonatal unit!) is making him really uncomfortable and he didn't want to make Lilian uncomfortable too. Lilian behaved much in the same way as Jacob, although she didn't need so many staff to get her out of her incubator. She settled quickly on Mummy's chest and had a good hour-and-a-half nap on Mummy!
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| Lilian starts her Kangaroo Care |
Both babies have now started their Kangaroo Care! This has a laundry list of benefits for the babies, and is very nice for us parents too.
Friday, 12 July 2013
Surprise.......
Well today started very well indeed, we were invited to ward rounds to hear that both Lilian and Jacob are both doing well.
Jacob's Morphine has been halved from what he was on yesterday and we have been advised that he doesn't seem to be suffering for it, so that is excellent! He is now only on Morphine too! Unfortunately, Jacob's feeds of my milk had to be stopped as he was bringing some of it back up. We were told this is completely normal though, especially with him having feeds before his surgery and then being nil-by-mouth for 10 days. They are hoping to re-start him on feeds tonight.
Lilian is being as good as gold and reducing her need for oxygen and ventilation! Hopefully by early next week we will see her on CPAP! Her Morphine is hopefully finishing in the next day or so which means that Lilian will be drug free! Also she should be up to full feeds tonight so she will no longer need the glucose feeds they have been giving her. This means that her long line can come out tomorrow if she stays well over night too.
The lovely Sister looking after Jacob today had to move him into another incubator as his was 'buzzing' (and it's not supposed to! - Although everything was working correctly), so she arranged for me to hold Jacob for the first time! It took 3 Sisters (1 who specialises in ventilation for pre-term babies) to get him out of his incubator safely and onto Mummy's chest, but he was a very good little boy and kept all his stats up (and even improved them once he'd settled in for a cuddle). :) Which means I got to spend about 45 mins cuddling our little man this evening!
We've been told that we should be able to get Lilian out tomorrow for a cuddle as she needs a lot less ventilation, and therefore less extra staff to support getting her out. Daddy is looking forward to this very much as it's his turn for a cuddle tomorrow before he has to return to work on Monday :(
Jacob's Morphine has been halved from what he was on yesterday and we have been advised that he doesn't seem to be suffering for it, so that is excellent! He is now only on Morphine too! Unfortunately, Jacob's feeds of my milk had to be stopped as he was bringing some of it back up. We were told this is completely normal though, especially with him having feeds before his surgery and then being nil-by-mouth for 10 days. They are hoping to re-start him on feeds tonight.
Lilian is being as good as gold and reducing her need for oxygen and ventilation! Hopefully by early next week we will see her on CPAP! Her Morphine is hopefully finishing in the next day or so which means that Lilian will be drug free! Also she should be up to full feeds tonight so she will no longer need the glucose feeds they have been giving her. This means that her long line can come out tomorrow if she stays well over night too.
The lovely Sister looking after Jacob today had to move him into another incubator as his was 'buzzing' (and it's not supposed to! - Although everything was working correctly), so she arranged for me to hold Jacob for the first time! It took 3 Sisters (1 who specialises in ventilation for pre-term babies) to get him out of his incubator safely and onto Mummy's chest, but he was a very good little boy and kept all his stats up (and even improved them once he'd settled in for a cuddle). :) Which means I got to spend about 45 mins cuddling our little man this evening!
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| Cuddles with Jacob |
Thursday, 11 July 2013
Our Little Addicts...
So both Jacob and Lilian are being weaned off the morphine today, this has to be done slowly as they have both been on it since their birth. Jacob has always been on more because of the surgery though we are very happy that the doctor feel that they are in a small amount of pain and discomfort that they can come off it.
Jacob has started Mummy's milk again and so far there are still no signs of any badness in his tummy (fingers and toes crossed), though I am really not looking forward to dealing with the poo coming our of his stoma, it's hard enough cleaning it when its just a little goo on there.
One thing I will say; I am seriously desensitised to surgical wounds now after cleaning Jacobs stoma for the past week, it was really hard to see the results of such major surgery on my little man at first and especially when you start wiping the exposed intestine to keep it clean... (looks sooo painful!)
We have had the great news that Lilian is going to be given the chance to try life off the ventilator! They have been turning down the oxygen and pressure in her ventilator with the hope that by the weekend they can try a Nasal cannula for the 'CPAP' like Jacob had for a short while before the surgery.
Lilian is also going onto full feeds tonight so she will be existing solely on Mummy's milk which we think is awesome!
Sorry no pictures again today, though should have some tomorrow.
Jacob has started Mummy's milk again and so far there are still no signs of any badness in his tummy (fingers and toes crossed), though I am really not looking forward to dealing with the poo coming our of his stoma, it's hard enough cleaning it when its just a little goo on there.
One thing I will say; I am seriously desensitised to surgical wounds now after cleaning Jacobs stoma for the past week, it was really hard to see the results of such major surgery on my little man at first and especially when you start wiping the exposed intestine to keep it clean... (looks sooo painful!)
We have had the great news that Lilian is going to be given the chance to try life off the ventilator! They have been turning down the oxygen and pressure in her ventilator with the hope that by the weekend they can try a Nasal cannula for the 'CPAP' like Jacob had for a short while before the surgery.
Lilian is also going onto full feeds tonight so she will be existing solely on Mummy's milk which we think is awesome!
Sorry no pictures again today, though should have some tomorrow.
Any Progress Is Good Progress!
Bit of a late update from yesterday.....
Jacob has been doing really well again. The surgeons came to see his stoma and are really pleased with it so the doctors on the neonatal unit are happy for him to start milk feeds again, we have been advised that it could be a little stop and start for the first few days as he gets used to it again.
They have removed his arterial line from his belly button, he bled as expected though it stopped quickly which is a good sign. The removal of this is all part of getting him ready for milk feeds; as his belly button wound can get infected from the stoma when it starts to pass the feeds he is given, this also makes it easier to use the stoma bag that will be needed to collect his poo.
They are also looking to wean him off the morphine which is great as it is a big step in getting him off his ventilator again.
Lilian has also had a very good day; she was having a long line put in earlier (Jacob has had one of these for a while) so that her belly button line can come out too. Her feeds are coming along well and she isn't showing any signs of becoming ill like Jacob did, that is great news and another weight off our minds.
She is starting to look less puffy too which is nice to see, this is a good sign as it means that her organs have started to keep up with what is being put into her. They will be starting to increase her feeds tonight so she can start to properly grow and progress, great to hear that the doctors are talking about growth finally!
Jacob has been doing really well again. The surgeons came to see his stoma and are really pleased with it so the doctors on the neonatal unit are happy for him to start milk feeds again, we have been advised that it could be a little stop and start for the first few days as he gets used to it again.
They have removed his arterial line from his belly button, he bled as expected though it stopped quickly which is a good sign. The removal of this is all part of getting him ready for milk feeds; as his belly button wound can get infected from the stoma when it starts to pass the feeds he is given, this also makes it easier to use the stoma bag that will be needed to collect his poo.
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| Jacob almost exposing himself to us all... |
Lilian has also had a very good day; she was having a long line put in earlier (Jacob has had one of these for a while) so that her belly button line can come out too. Her feeds are coming along well and she isn't showing any signs of becoming ill like Jacob did, that is great news and another weight off our minds.
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| Lilian snuggled up |
She is starting to look less puffy too which is nice to see, this is a good sign as it means that her organs have started to keep up with what is being put into her. They will be starting to increase her feeds tonight so she can start to properly grow and progress, great to hear that the doctors are talking about growth finally!
Tuesday, 9 July 2013
Two Weeks Old Today
We are over the moon to hear that both Jacob and Lilian have been very stable and that their oxygen has been reduced down - Jacob is now on the level of oxygen he was on before his surgery so he is certainly feeling a lot better!
We've been able to help clean Jacob's Stoma as part of his 'Cares' which is a little daunting since you're cleaning his gut sticking out of his belly! It's looking pretty healthy (it's red/pink, compared to the end looking black as it did a few days ago) so everyone seems pleased with it. The Docs are checking with the surgeons if they can finish his antibiotics completely, but there is one that he has finished today so he's coming down on his drug intake - seems to be enjoying his morphine though so he's not in a hurry to give that up!
Lilian has been a very good girl today too - we even seem to have found a comfortable position for her on her left side which stops her from wriggling around so much. The consultant advised us on ward rounds that they expect to take out her lines into her belly button tomorrow as she is doing well enough to not need them anymore.
We've been able to help clean Jacob's Stoma as part of his 'Cares' which is a little daunting since you're cleaning his gut sticking out of his belly! It's looking pretty healthy (it's red/pink, compared to the end looking black as it did a few days ago) so everyone seems pleased with it. The Docs are checking with the surgeons if they can finish his antibiotics completely, but there is one that he has finished today so he's coming down on his drug intake - seems to be enjoying his morphine though so he's not in a hurry to give that up!
Lilian has been a very good girl today too - we even seem to have found a comfortable position for her on her left side which stops her from wriggling around so much. The consultant advised us on ward rounds that they expect to take out her lines into her belly button tomorrow as she is doing well enough to not need them anymore.
Monday, 8 July 2013
In True Twin Fashion
Lilian followed in her big brother's footsteps today and opened her eyes for the first time! - She's not one to be outdone!
We managed to catch the Consultant on ward rounds today and he was very happy with both Jacob's and Lilian's progress. Both have had a very stable night last night and that continued during the day today.
Lilian's feeds have been increased and they are happy with how her tummy looks (we had been very anxious that she would need the same surgery as Jacob). As her stats have been so good they are going to reduce the amount of ventilation she is on to prepare her for coming off it eventually. They have also decided that with her stats being good they no longer need the lines that had been attached through her belly button as they can still keep a good eye on her via her other lines.
Lilian is still looking a little puffy which is making Jacob look very small indeed, but it has reduced since yesterday which was good to see. There was also talk of her last antibiotic finishing today so at least that's one more drug finished!
Jacob hasn't changed much from yesterday which is fantastic news as he seems to be on the road to recovery from his surgery (and it was only a week ago!). The surgeons came to visit him today to take a look at his stomach. The wound is leaking a bit but the surgeons have confirmed that this is quite normal for Stoma operations and are not concerned by what they have seen.
Jacob has a few more days to go on his 'nil-by-mouth' but will then hopefully begin feeding on milk again. His stats have been very good today too and they are looking to reduce his ventilation too - he's had a taste of breathing for himself and he wants it back - good little man!
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| Look at those puffy lil' eyes! |
Lilian's feeds have been increased and they are happy with how her tummy looks (we had been very anxious that she would need the same surgery as Jacob). As her stats have been so good they are going to reduce the amount of ventilation she is on to prepare her for coming off it eventually. They have also decided that with her stats being good they no longer need the lines that had been attached through her belly button as they can still keep a good eye on her via her other lines.
Lilian is still looking a little puffy which is making Jacob look very small indeed, but it has reduced since yesterday which was good to see. There was also talk of her last antibiotic finishing today so at least that's one more drug finished!
Jacob hasn't changed much from yesterday which is fantastic news as he seems to be on the road to recovery from his surgery (and it was only a week ago!). The surgeons came to visit him today to take a look at his stomach. The wound is leaking a bit but the surgeons have confirmed that this is quite normal for Stoma operations and are not concerned by what they have seen.
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| Raise your hand if you're adorable... |
Jacob has a few more days to go on his 'nil-by-mouth' but will then hopefully begin feeding on milk again. His stats have been very good today too and they are looking to reduce his ventilation too - he's had a taste of breathing for himself and he wants it back - good little man!
Sunday, 7 July 2013
Beautiful Surprise
We were pleased to hear that the twins had a good night again and have had a pretty good morning too, and shortly after Jacob was taken off his photo-therapy (and therefore the eye visor) we saw this:
Jacob is still quite heavily sedated with painkillers to make sure he stays comfortable - it's a week tomorrow since his surgery. Although he is a very chilled out little boy even without the drugs! He's had another blood transfusion today to keep his stats at a good level.
The Nurses have been in contact with the surgeons today to discuss Jacobs wound from the earlier surgery, it may be that the wound between the Stoma and the Fistulla could 'break down' and will need a special dressing until the skin grows back. This is a fairly common occurrence and so they are not concerned though apparently the appearance could be very distressing to us...We've been told that he is not likely to need to go back to surgery as a result of this though, which is reassuring.
Lilian is just as fidgety as ever, stretching her long legs and bringing her hands up to her face! She even managed to pull out her feeding tube this morning with all her moving around, the Nurse told us not to worry about this though as babies regularly do it when they get that bit stronger. Definitely seeing that Lilian has a mind of her own!
Lilian has started to look a little 'puffy' around her face and neck today, we have been told that this is due to her kidneys not yet working 100% and all the drugs / fluids being given to her. When her kidneys do work fully the swelling around her face and neck will reduce significantly.
The nurse advised that both twins are quite sensitive to any change in their care so the Doctor's have decided to err on the side of caution and medicate them to maintain their current stats rather than allowing anything to drop and then having to take more action to stabilise them.
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| Our little man has opened his eyes!!! |
The Nurses have been in contact with the surgeons today to discuss Jacobs wound from the earlier surgery, it may be that the wound between the Stoma and the Fistulla could 'break down' and will need a special dressing until the skin grows back. This is a fairly common occurrence and so they are not concerned though apparently the appearance could be very distressing to us...We've been told that he is not likely to need to go back to surgery as a result of this though, which is reassuring.
Lilian is just as fidgety as ever, stretching her long legs and bringing her hands up to her face! She even managed to pull out her feeding tube this morning with all her moving around, the Nurse told us not to worry about this though as babies regularly do it when they get that bit stronger. Definitely seeing that Lilian has a mind of her own!
Lilian has started to look a little 'puffy' around her face and neck today, we have been told that this is due to her kidneys not yet working 100% and all the drugs / fluids being given to her. When her kidneys do work fully the swelling around her face and neck will reduce significantly.
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| Lilian looking a little 'puffy' |
Saturday, 6 July 2013
Additional Sources Of Information
Today we took a look at the Bliss site (link to the right), and the TAMBA and the Tommy's websites (links also to the right) to find out more about pre-term babies, and specifically pre-term twins. We've found some comfort in the fact that so many twins (or at least one of them) end up in neonatal care after their birth. Knowing that medical professionals see this sort of thing so frequently helps us to feel more confident in the treatment of Jacob and Lilian.
The links have been added to this blog if you'd like to read more about pre-term babies, we found all the sites to be really informative, particularly Bliss giving an overview of what all the different equipment is used for on the neonatal unit.
The links have been added to this blog if you'd like to read more about pre-term babies, we found all the sites to be really informative, particularly Bliss giving an overview of what all the different equipment is used for on the neonatal unit.
Another Pleasing Day
Not much to report again today as both Jacob and Lilian have been stable overnight. Jacob had a slight issue with needing more oxygen when lay on one side so they did an x-ray to check there was nothing serious causing it. They found that his ventilator tube had just slipped slightly meaning he could breathe easier facing one way, rather than the other. They have now pulled the tube back slightly and the oxygen levels have remained very good regardless of which side he is lying so that's all resolved!
Lilian has been very good and not caused / had any issues overnight or during the day today. She's been happily wriggling away in her incubator and grabbing onto all the wires and tubes as if to tell us she's ready to go it alone! (A little too soon yet, but great to see that she's keen!).
After these few good days it is very easy to forget just how fragile and vulnerable they are, but for the time being; long may it continue!
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| Jacob keeping it chilled showing no signs of breathing issues |
Lilian has been very good and not caused / had any issues overnight or during the day today. She's been happily wriggling away in her incubator and grabbing onto all the wires and tubes as if to tell us she's ready to go it alone! (A little too soon yet, but great to see that she's keen!).
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| Lilian getting ready for a big kick, HiiiiYA! |
Friday, 5 July 2013
10 Days Old Today!
Just a quick one today...
Well both Jacob and Lilian had a nice settled night and have steadily been clearing their lungs over night and this morning so we couldn't he happier right now. Both are teasing us with the hint that they are going to open their eyes any moment.
Here are some photos...
Well both Jacob and Lilian had a nice settled night and have steadily been clearing their lungs over night and this morning so we couldn't he happier right now. Both are teasing us with the hint that they are going to open their eyes any moment.
Here are some photos...
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| Chilling with his Canulla removed from his head! |
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| Having a lie-in with Teddy |
Thursday, 4 July 2013
Jacobs Turn Again
So Jacob started the day copying his Sister by blocking his ventilator, though after that small drama he settled in basking under the glow of his photo-therapy (a little jaundice is no problem at all). He has also had the oxygen supply turned off in his ventilator so he is breathing normal air now, you really wouldn't know he had surgery just three days ago...
Lilian had a very uneventful day today, more cleaning of her chest, improving breathing and generally being no bother at all to anyone. Just the way we like it!
Just a short one today, a welcome relief indeed.
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| Jacob glowing in his photo-therapy |
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| Lilian all snuggled in for the night |
Just a short one today, a welcome relief indeed.
Wednesday, 3 July 2013
Little Lilian's Turn To Get Some Attention
Jacob had a pretty stable night so is doing as well as can be expected. His pain score has gone right down but they're keeping his morphine high to give him a rest, and his numbers are pretty stable which is very good for his recovery (keep it up, Jacob!).
Lilian is having a bit of a rough day with the secretions in her lungs, she decided mid afternoon to cough up too much of it and blocked her ventilator. A few minutes of frantic work by the nurses saw a fresh tube inserted and she was back as before. They've done more scans to check the position of the new tube, and found nothing more serious with her chest or stomach than the normal secretions.
She had been feeding OK to this point though her breathing issue has lead to them stopping the milk so that they can concentrate on getting her breathing back to normal.
We were so pleased to get to another milestone today - a pooey nappy from Lilian! It's the small things..... Don't think she was too impressed with mummy cleaning her bum but she will make a mess! With that lovely image in your mind i'll leave it there.
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| Jacob resting under his cover |
She had been feeding OK to this point though her breathing issue has lead to them stopping the milk so that they can concentrate on getting her breathing back to normal.
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| Lilian causing trouble and looking so innocent! |
Tuesday, 2 July 2013
Bumps in the Road
Yesterday we had the first (of hopefully few) bumps in the road; Jacob had to have surgery after an x-ray highlighted some air in his gut, this happened so fast as the doctors wanted to ensure that they looked into what the cause was before he started showing signs of being less well/stable. He returned from surgery having had a small portion of intestine removed and a stoma in his stomach (the intestine exits the stomach and the lower intestines are not used) which more surgery will be needed to repair when he is better or stronger.
Lilian must have sensed the extra attention that her brother was getting and so decided to scare us by having breathing difficulties at the same time, a quick x-ray showed that her right lung had partially collapsed though they took measures to ensure that her oxygen levels stayed high and were not too concerned.
Jacob has been stable since his surgery however his pain
score is quite high so his morphine has been doubled and paracetamol has also
been given. The Doctor’s and Nurse’s are going to keep a close eye on him to
manage his pain and make sure he remains stable. After speaking with the surgeons they have confirmed that he does have NEC which has hit us like a tonne of bricks, our little man is very ill indeed and the next 72 hours are filled with even more uncertainty as to how bad he will get. The stoma cannot be repaired until he is 3 times his current weight so it will be in weeks if not months before he can start to really recover properly.
Lilian has been stable since her ‘episode’ yesterday
afternoon.
Her oxygen levels from the machine have now been reduced to below what they
were before her ‘episode’ so she is doing better. She is not going to be given Ibuprofen for
her heart vessel (the one that they only need while they are a foetus) now as
she is off the Dopamine (her blood pressure is stable – go Lilian!) they have
decided it is better to start her on some milk instead. The Docs have advised
that there are strict guidelines about how they will go about feeding her, but
that they will also keep a close eye on her because of Jacob needing Surgery.
The Docs were keen to say that as the babies are twins they
will watch them closely for similar things happening to them both, but that it
is no indicator as they are two different babies.
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| Jacob recovering |
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| Lilian dozing |
Lilian was having her head and heart scans earlier so should
have some updates on those later. It’s possible that Jacob won’t have his scans
today as they want to avoid disturbing him as much as possible to get his pain
score down. I spent a long time 'containment holding' Jacob today to try to help settle him and had a good chat with him (at him!) which was great especially when he seemed to wriggle at all the right places!
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