All Settled In

Well Jacob and Lilian are now very well settled into our local hospital, and all four of us have had a very busy few days.

The babies biggest change is that they are now old enough to regulate their body temperature as a full term newborn would so they no longer need incubators! They are now in 'Babytherms' which provide some warmth from the mattress, but other than that they are pretty similar to normal hospital cots.

Both babies are being 'cycled off' CPAP and have a set time off the CPAP every twelve hours. Lilian is on 3 hours today and Jacob 2 hours. Lilian had built up to 4 hours a couple of days ago but the final hour was a little hard for her so the Doctor's decided to leave her at 3 hours for a few days. During the time off they are put onto a similar machine to high flow, but with a much lower air pressure.

Jacob is being fed 3-hourly, so he now matches Lilian. They both seem to have lost weight but it's difficult to say for certain as they have been weighed in different hospitals using a number of different scales. The Doctor's aren't too concerned with this as the babies look a healthy weight and all their figures look good. Jacob has had fortifier added to his milk though, like Lilian already has, as there have been some changes made to top-up fluids he was getting, so they want to be sure he can grow while feeding solely on milk.

Jacob's longline has been removed as our local hospital have stopped his TPN. He currently has a Cannulla in one of his hands for a drip of Sodium Chloride, which is to replace the salt he is losing. The Doctor's are looking to add this via his feeds in future (as all his other medications are now administered) so that they can remove his Cannulla too - it will be so nice for him to have both his arms free, and may stop him from potentially injuring the staff and Mummy and Daddy when he waves his arms around!

Here are some pics of the babies in their new environment - I managed to catch Jacob while he was being cycled off CPAP so he only has nasal prongs providing 'Low Flow' which is just a tiny amount of oxygen.

Jacob

Lilian

An Early Two Month Birthday Present

On Wednesday morning we were given the news that the babies were going to be transferred to our local hospital, however by lunchtime we were told only one transport team was available to take one of the babies, and a few hours later that team were called away to an emergency transfer - such is the nature of these things. Although we hadn't allowed ourselves to get carried away with the idea of a move, it was extremely disappointing to be told we were leaving and then have the plans change at the eleventh hour.

By some miracle; beds were still available at our local hospital the next day and a transport team was available to take both babies in separate journeys. Cue a very stressful couple of hours until the Central Team arrived (this team are the East Midlands equivalent of Embrace). Jacob was taken first as he was being fed 2-hourly, and had just been fed, and the journey and handover times can run to around 2 hours. Usually a parent is permitted to travel with a baby but as I couldn't be a passenger on the way back in case they got called away to an emergency. However, the staff reassured us that he would be okay and would call as soon as Jacob arrived at our local hospital.

His journey was successful and the team came straight back for Lilian. Due to all the procedures and checks that have to be followed it was getting quite late by the time Lilian arrived at our local hospital, but we managed to get to the hospital in the evening to see that they had both settled into their new home with ease and were sound asleep.

Things are a little different here, but we are sure that we will adjust pretty well and we are so very happy to both be living in our house together while still being able to see the Twins more (for daddy anyway).

Eight Weeks Old Today

Just a quick one today...

We still haven't been able to transfer due to the lack of beds in our local hospital, but the Senior Consultant here reassured us that they are doing all they can to get us moving.

Jacob and Lilian have far more patience for a move than Mummy and Daddy and are both doing extremely well. Jacob and Lilian are both on High Flow and have had the amount of oxygen they are in reduced. Both are finding it easier to spend longer periods of time on their backs, as their lungs are now stronger and are able to work against gravity much more effectively!

They both had their first immunisations yesterday - these are due at 2 months of age but can be held off for preterm babies that are unwell. Since Jacob and Lilian are doing so well, the Doctor's decided they should have the immunisations as planned. Their future immunisations will be reviewed when they are due. They both had a little grumble during the jabs but recovered quickly - tough little cookies!!

Jacob's Surgeon visited Jacob and Mummy yesterday to review Jacob's Stoma, which he was pleased with. He confirmed the message we had received that Jacob can transfer hospitals was correct, but has asked for Jacob to return here for his reversal Surgery as the Surgical team already know him and would like to complete the Surgery themselves. Mummy and Daddy have the final say as to whether Jacob returns here or goes to the Specialist hospital in our local area for his Surgery, but we believe Jacob would benefit from having the same Surgical team.

Still not moved

Well we are still in the North :( (no offence Northerners!) as our local hospital still does not have any cots in the appropriate unit for Jacob and Lilian, we have been told that the unit coordinators here will try every day to get them moved and that if the wait gets too long (we have no definition of what 'too long' actually means for them!) the coordinators at this hospital will ask the Consultants here to make a referral to the Consultants in our local hospital, as this usually results in a move fairly quickly.

In the meantime, Jacob has gone back onto Flat CPAP as he was going into a little too much oxygen on High Flow and seemed to be a bit tired. He can still transfer hospitals on Flat CPAP so that is not a problem, and he is keeping his oxygen requirement very low which is very encouraging. It's not unexpected that he would return to CPAP as he seemed to progress to High Flow a little too quickly in our opinion - he likes to get used to one change at a time!

Jacob's weight is increasing nicely and his feeds are being increased in line with his new weight. At the moment he still has his TPN to ensure he continues to gain weight but they are keeping the level he receives of that the same (so it works out as being effectively reduced due to his weight gain). His Stoma losses seem to be under control finally so there are no worries about having to reverse his Surgery before he is really suitable for it.

Lilian is very much enjoying her second go at High Flow, She is staying in around the same amount of oxygen she was using on Flat CPAP which is excellent considering she is now having to do more work herself. Her feeds have been moved to 3-hourly with a view to moving her to breast / bottle feeding in the not too distant future (no more pesky gastric tubes for her to pull out 4 times a day! - the Nurses will be pleased!).

Lilian still has a little way to go but the plan would be to get her onto Low Flow next - this provides very little breathing support, and if the Doctors think it necessary, either of the babies could be discharged while they are still on this, so this is not a barrier to them coming home at all. With the progress Lilian is making it is anticipated that she may even be promoted to Special Care before she is transferred home (this could make finding an available cot easier than trying to get 2 HDU cots), however this is still a good couple of weeks off.

A Change of Scene

Both Jacob and Lilian are doing really well, so the Doctors have decided to give them both a try at High Flow today. We'll see how they get on.....

We were given the fab news on Monday that the Surgeons are happy for Jacob to move to our local hospital. The specialist hospital in our area can then do his reversal Surgery when necessary. It is now just a waiting game to get transferred as unfortunately our local hospital has no spare cots on their High Dependency Unit. Fingers and toes crossed for at least two babies to get promoted to Special Care so that we can move home!

High Flow piccies......

Jacob's Handsome Face

Lilian's Beautiful Face

A Look At The Last Few Days

The good news is that Jacob has joined his Sister on the High Dependency Unit (HDU) which is a massive step forward for him! He has been there since Tuesday evening and is doing well.

There's recently been a switch in Doctors looking after Jacob and Lilian (the Senior House Officers and some Registrars, but not the Consultants) on the unit as they have to rotate every 6 months to different hospitals, which has slowed progress for the twins as new people learn the ways of our twins.

As a result of this Jacob was put back on BiPAP on Thursday because his gas result wasn't too good (although it was later confirmed that it is a perfectly normal result for him!), he had also spent nearly all day on his back (his least favourite position, and the hardest position to breathe in due to gravity acting on their chests) so we don't feel that Jacob going back on BiPAP is truly representative of how he is getting on. Ever since then he has kept his oxygen requirement low and as a result was put back on Flat CPAP around 3pm today.

Lilian is still on Flat CPAP after being put back on it a few days ago but is continuing to do well, so we are hoping she will get a chance on 'High Flow' again soon. Lilian has had Fortifier added to her feeds to help her gain more weight. Her feed volumes can't be increased as she is already on full feeds for her weight, but her weight gain is not as rapid as it should be and her progression on her growth chart was starting to plateau. We're pleased to report though that the addition of the Fortifier has helped her to gain a more acceptable amount of weight.

Jacob is now gaining weight continuously over his weigh days and as a result the Doctors are happy to reduce his TPN amounts and increase his milk. The increase in milk isn't having a negative effect on his Stoma losses either which is really pleasing!

Today it was officially confirmed by the Surgeons that they are happy for Jacob to be released to our local hospital once he is stable on Flat CPAP. He will then need to go to another specialist hospital near our local hospital for his Stoma reversal surgery as, unfortunately, our local hospital do not have the surgical expertise required to reverse it themselves.

We're keeping everything crossed that we can take that long-awaited journey down the motorway and get the babies back nearer home.

This Time Six Weeks Ago.......

........I was being raced down to the Labour Ward as my contractions had restarted, and the Neonatal staff had all started assembling themselves and their equipment ready for Lilian and Jacob's birth (they were stood down shortly after when my contractions stopped AGAIN!).

On the one hand the time has gone very quickly, on the other, i don't remember living anywhere but the hospital!

Jacob has progressed back onto Flat CPAP (cuddles with Daddy yesterday clearly was all the push he needed), and we are really pleased with him. Fingers crossed he continues to remember to breathe for himself and he should be ok to continue as he is.

It has been decided that Jacob's medicines (vitamins, bowel medicine, caffeine, sodium, etc) should now be given via his TPN bag rather than orally as the Surgeons think this will help reduce his Stoma losses. There is still no news though on when they might want to reverse his Stoma.

Lilian has continued as she normally does. After a couple of dodgy gas results the Registrar decided to put Lilian back on Flat CPAP. The Nurse looking after Lilian was surprised that this decision was taken as the gas result is in line with Lilian's other results and her saturation levels had been fine all day. We're hoping that this means she will be back on High Flow soon though.

The Difference Between Jacob and Lilian

Jacob and Lilian have both been stable over the past few days. So stable in fact that Lilian has been moved from Intensive Care to the downgraded High Dependency Unit (HDU), this means that she and Jacob are now in different Nurseries on the Neonatal Unit (*sadface*), but we have to take it as a positive that Lilian is managing better on her own and needs less medical intervention.

Lilian had a good cuddle with Mummy yesterday, and then it was decided that as she was tolerating her re-location so well she would be tried on 'High Flow' instead of her CPAP. This is the middle ground between having the breathing support of CPAP and having no support at all, so she is doing really well! She has now been on 'High Flow' for around 24 hours and spends a lot more time with her eyes open and nosing around the Nursery at the other babies! She now no longer has to wear all the kit she needed for CPAP so we get to see more of her beautiful face.

As she's now a big girl, she has to start getting used to wearing clothes and she has a pretty little vest to wear in her incubator!

Lilian's High-Flow Kit and first outfit!

Jacob also had a cuddle with Mummy yesterday (and hopefully today too) and it seems to be having some benefits for him - he has been very stable with his breathing but hasn't made any progress with it so unfortunately he is still on BiPAP. He has however, gained a massive amount of weight! Some of which is due to fluid retention so he looks a bit puffy, but most is genuine weight gain which has pleased his Doctors. His Stoma is functioning at varying rates, and this is something that the Doctors want to control a bit more, and the Surgical team are in frequent contact with Jacob to make sure they remain happy with how he is doing (one of the surgical consultants advised a few days ago that they may look to reverse Jacob's Stoma sooner rather than later if he continually loses too much from it. At the moment this is the last option they will choose but it's not impossible that Jacob could be back in Surgery sooner than originally anticipated).

Jacob looking a little fuller-faced

I was advised today that technically Lilian is ready to move to our local hospital, but as we have been told all along, they do not want to split Lilian and Jacob up, so Lilian will remain where she is. I was also told that they do not think Jacob would be ready to move for at least another couple of weeks, and due to the Surgical team keeping an eye on his stoma losses (and our local hospital being unable to provide the relevant level of surgical expertise), it is looking more likely that Jacob may not transfer to our local hospital at all, and simply be discharged from here when he is well enough.

This puts around another 2 months on our stay up here, which has been a bit of a blow as we fully expected to phase their return home via our local hospital, and get re-settled living at home before we brought them home. However, the Consultant's parting words on ward rounds were '.....but, there's a different Consultant on tomorrow so they may say something completely different'......... welcome to the uncertainty of our world!