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!
Sunday, 27 October 2013
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.
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