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.
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