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.
Tuesday, 30 July 2013
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!
Monday, 1 July 2013
The Story So Far
Over to me for a little overview of the days so far......
Day One
After a total of about 3 hours sleep, we were desperate to get back to the babies to find out how they were and anything additional the Doctor's could tell us. All the information we received today was that the doctors expect all babies to do well in their first 24 hours, and this isn't an accurate idea of the real situation. We were also told that the following 3-4 days we could expect the babies to show signs of getting worse, and the best we could hope for at this time would be for them to be stable, even if their 'obs' were slightly below ideal, rather than them being up and then down.
Our babies managed a stable first day, so we were relieved that they were behaving as expected as it was the most we could hope for at this point.
Before leaving the babies for the evening, the nurse looking after them for the evening kindly let us give the babies a kiss. I can't begin to describe how much this meant to us, it was a real boost to do something normal with our babies, who even now at Day 6 we have not been able to hold.
Day Two
The babies remained stable over night and the news from the Doctor's during rounds was that Jacob and Lilian were both doing as well as could be expected. Lilian was doing slightly better than Jacob in terms of her 'Obs' (slightly better blood pressure etc.), but we were told this is common as pre-term boys usually don't do as well as girls.
During the day we were invited to help care for our babies to begin bonding with them. This involves doing their 'Cares' which means we get to swab their mouths with sterilised water and then with my breast milk, and changing their nappies. With the babies being so small we were shown how to 'containment hold' them to provide them with a feeling of security while we care for them. This involves putting light pressure from one hand over their head/face and gathering their feet together and putting light pressure on them too. This gives them boundaries and something to push against as they would have experienced in the womb.
Day Three
The magical words 'the babies had a good night' were uttered again this morning (those simple words mean so much and can never be said too often!). Jacob was started on some of my expressed milk today to see how he gets on. Lilian wasn't yet ready for milk as she was still on medication to keep her blood pressure up.
As part of their treatment, tests were carried out today, these tests found that Jacob has a bug on his skin. Lilian was also found to have a bug on her skin. Her routine blood tests also showed that the bug was in her blood and we were advised she may need a Lumbar Puncture to check for any further issues in relation to the bug (namely for infection in the fluid around the brain / spine). It was expected that she wasn't suffering from an infection from the bug though as her 'obs' were consistent with her being as well as she could be.
Day Four
Jacob had a very good night, as he remained very stable. The Doctor's have decided they are going to take him off his ventilator later to see how he gets on breathing for himself, he was taken off at around 6pm, though we were told he would likely go back on it before the morning. He was started on caffeine at this time too as we were advised that the most common problem for pre-term babies when they come off ventilation is that they forget to breathe. Jacob has started digesting the milk I am expressing for him which should help with the development of his gut.
Lilian had a Lumbar Puncture during the night and we were told that she coped very well with it, and that the initial signs were very good and suggested no issues. We will get the results in the next few days and she is still in a very stable state.
The babies have been coping so well so far and we are so proud of them. We, as I'm sure you will understand, have a constant fear of anything changing. The Doctor's have been very good at managing our expectations and we think that that has helped to keep us sane so far.We are well aware that anything could change anytime and are so appreciative of anything that isn't negative.
Day Five
Jacob was put back on his ventilator last night as he was working a little too hard. He was off for about 5 hours which the Doctor's were very pleased with. He is back on minimal ventilation again already, so this is really positive, but they have told us that they wont take him off again for a few days just to give him a rest. They will be increasing his feeds to every 2 hours as of today as he is digesting well. Jacob's antibiotics are also being stopped today, as there aren't any signs of his blood having an infection.
Lilian had a very good night, and had her dopamine reduced but she was struggling to maintain her blood pressure so it was put back up. The Doctor's are looking to reduce her Dopamine as soon as possible as she needs to be weaned off this before she can start to take my milk. One of Lilian's antibiotics is being stopped today so she will only be receiving one antibiotic as of today (she will need this for the next 14 days).
Day One
After a total of about 3 hours sleep, we were desperate to get back to the babies to find out how they were and anything additional the Doctor's could tell us. All the information we received today was that the doctors expect all babies to do well in their first 24 hours, and this isn't an accurate idea of the real situation. We were also told that the following 3-4 days we could expect the babies to show signs of getting worse, and the best we could hope for at this time would be for them to be stable, even if their 'obs' were slightly below ideal, rather than them being up and then down.
Our babies managed a stable first day, so we were relieved that they were behaving as expected as it was the most we could hope for at this point.
Before leaving the babies for the evening, the nurse looking after them for the evening kindly let us give the babies a kiss. I can't begin to describe how much this meant to us, it was a real boost to do something normal with our babies, who even now at Day 6 we have not been able to hold.
Day Two
The babies remained stable over night and the news from the Doctor's during rounds was that Jacob and Lilian were both doing as well as could be expected. Lilian was doing slightly better than Jacob in terms of her 'Obs' (slightly better blood pressure etc.), but we were told this is common as pre-term boys usually don't do as well as girls.
During the day we were invited to help care for our babies to begin bonding with them. This involves doing their 'Cares' which means we get to swab their mouths with sterilised water and then with my breast milk, and changing their nappies. With the babies being so small we were shown how to 'containment hold' them to provide them with a feeling of security while we care for them. This involves putting light pressure from one hand over their head/face and gathering their feet together and putting light pressure on them too. This gives them boundaries and something to push against as they would have experienced in the womb.
Day Three
The magical words 'the babies had a good night' were uttered again this morning (those simple words mean so much and can never be said too often!). Jacob was started on some of my expressed milk today to see how he gets on. Lilian wasn't yet ready for milk as she was still on medication to keep her blood pressure up.
As part of their treatment, tests were carried out today, these tests found that Jacob has a bug on his skin. Lilian was also found to have a bug on her skin. Her routine blood tests also showed that the bug was in her blood and we were advised she may need a Lumbar Puncture to check for any further issues in relation to the bug (namely for infection in the fluid around the brain / spine). It was expected that she wasn't suffering from an infection from the bug though as her 'obs' were consistent with her being as well as she could be.
Day Four
Jacob had a very good night, as he remained very stable. The Doctor's have decided they are going to take him off his ventilator later to see how he gets on breathing for himself, he was taken off at around 6pm, though we were told he would likely go back on it before the morning. He was started on caffeine at this time too as we were advised that the most common problem for pre-term babies when they come off ventilation is that they forget to breathe. Jacob has started digesting the milk I am expressing for him which should help with the development of his gut.
Lilian had a Lumbar Puncture during the night and we were told that she coped very well with it, and that the initial signs were very good and suggested no issues. We will get the results in the next few days and she is still in a very stable state.
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| Lilian still going strong |
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| Jacob without his ventilator |
The babies have been coping so well so far and we are so proud of them. We, as I'm sure you will understand, have a constant fear of anything changing. The Doctor's have been very good at managing our expectations and we think that that has helped to keep us sane so far.We are well aware that anything could change anytime and are so appreciative of anything that isn't negative.
Day Five
Jacob was put back on his ventilator last night as he was working a little too hard. He was off for about 5 hours which the Doctor's were very pleased with. He is back on minimal ventilation again already, so this is really positive, but they have told us that they wont take him off again for a few days just to give him a rest. They will be increasing his feeds to every 2 hours as of today as he is digesting well. Jacob's antibiotics are also being stopped today, as there aren't any signs of his blood having an infection.
Lilian had a very good night, and had her dopamine reduced but she was struggling to maintain her blood pressure so it was put back up. The Doctor's are looking to reduce her Dopamine as soon as possible as she needs to be weaned off this before she can start to take my milk. One of Lilian's antibiotics is being stopped today so she will only be receiving one antibiotic as of today (she will need this for the next 14 days).
Information, Or Lack There Of...
So we had done our part; Jacob and Lilian had been born and the doctors were now doing their best to keep them safe, so soon we would be joining them and would find out how they are so we can start to relax right? Not exactly...
The Doctors and Nurses have been amazingly supportive and great in explaining everything that they do know; in this circumstance it is limited to how the babies are doing at that very moment rather than how they will be. We were told that premature babies are usually stable in the first 24 hours and that it is the following days that the bumpy ride is likely to begin. With all of this uncertainty; the word 'stable' has very quickly become the best word in the world to me and one I really can't get enough of.
An example for extent of the uncertainty is that the first time our babies will open their eyes could be any at moment or a few weeks from now, I personally can't wait to see their beautiful eyes looking back at me!
As new parents of premature babies; all that we can do is try to take in as much of what the doctors are saying about how the twins are doing, and count every new day without problems as a good day.
With our next few posts we hope to get everything 'caught up' with what has happened to this point so we can start with the updates as they happen.
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