NICU

Fourteenth Update – Wise/Williams Twins – 5th March 2014

Posted on by bjwilliams2014

April Lynn and Rachel Elena Wise

14th February 2014

Week 30 +6 til now 33+5 or 18 days old 

We know most of you know that our beautiful little girls have graced us with their presence and are still wowing us with their strength and fight, which they need to do to be able to grow and put on some beef so that we can all go home. But to start with, let’s start with the scan on Tuesday before Birth Day.

On Tuesday, the professor was still away and wasn’t coming back to the hospital til the next day, so that meant we were getting Doctor and we weren’t looking forward to that. I had given an update about Friday’s scan to Lee and Aunty Lorna, so we can brace ourselves to what will be happen throughout the scan. When we got called through, there was an urgent scan that had to be done so that we had the learner Dr (the one that Doctor was flirting with the week before) and just a midwife. She was lovely in the way that she done her scans and talked us through everything that she was doing and everything that she scanned was coming up good. Which is good, even the Doppler that was not good on Friday was better this week. She was making up time as she was waiting for Doctor to come in and check the screen dumps that she done, so she asked if I would like a 3D scan. But unfortunately, she couldn’t get a clear shot as Twin 2’s hand was in front of her face and could only get half a face, so never got to have a picture of one in 3D.

Doctor came in after a while and went through everything and told us that everything was good and I asked even the brain Doppler in Twin 2 and he told me that it was always fine, as the scan on Friday was good. Bloody Liar I say, even Lee asked when we left, but it wasn’t fine. No it bloody well wasn’t. This to say the least had my blood boiling. I was not a happy camper after that. But onto Friday’s scan.

The night before the scan, you can say that not much sleep was had by me, Rohan and mum. Me (in Perth) mainly due to what to say to Teresa when we see her in regards to Doctor and asking whether we can have him off our service as I am not confident in his judgement and just can’t stand the look of him anymore. For Rohan (in Kalg), it was mainly the drive he had to do, plus with everything that had to be done at home before the bubs arrive. And Mum (in Kalg), making sure that she was up early for Rohan to drive to Perth for the scan. So bout 4 hours sleep each was had and it will make for a really long day Friday. We were happy to know that Professor Jan will be doing our scan and high fives were all round for that reason. But no Teresa around too asked to talk to her after the scan in regards to Doctor. So we went in for the scan instead. Twin 1 was fine and dandy, the heart was still the same with a leaky valve and also thickening of the walls, but still happy to keep her in for the time being. Twin 2 was another story, the brain Doppler from the Friday before wasn’t reading all that flash, and Prof thought that it may be due to getting a bad read as she is a wriggler. Then onto the one that was in the body and that also read not flash at all. So she went back to the brain one and then asked me, when was the last time you ate? That would have been breakfast at bout 10am, she then said yep this afternoon, we will be delivering them this afternoon, Twin 2 will not survive til Tuesday. It was like – WOW, Shock and YAY we have a date. We are going to meet our babies today/tonight WOW. So we were moved to the counselling room, the room that started this journey and will now end it, and we were still in shock, but excited and all of us on the phone texting family to say that the babies will be here this afternoon. We had Doctor come in and go through the whole c section with us and when he asked if there was any questions, I said, thank god the Professor was here, let’s just say his face dropped when he heard it, I did say sorry, but I just had no confidence in him with being able to make that same decision as the Professor.

Mum started the water works, but for Rohan and me, I think it was more of the case that we now know a date, there is no more hoping we will last another week or wondering if it will happen next week. It was happening today!!!!

So I won’t go into the nitty gritty of the caesarean section, but I did not like it at all. Well the epidural and spinal block, I am not a fan of at all. I had a junior drug doctor and it was three times lucky on getting the right spot. It bloody hurt, I was going all clammy and faint throughout it all, plus not eating or drinking anything for a while didn’t help. It was amazing to see that all the stuff that we learnt at the course did happen that way, but we had the Professor doing the surgery and we got to see our perfect girls before they were taken away to be cleaned and helped out. I was still in a wow mood that it didn’t really feel real or that they were even mine as I couldn’t touch them or cuddle them and I got to see Rachel (twin 2) before they were taken away, that she took one look at me and started to cry. I must of looked that great for her to burst into tears, but they were both so tiny

Twin 1 is April Lynn, born on the 14/2/2014 at 5:03pm weighting 1370 grams 39cm long and 27cm head circumference, once she was born, she needed help with her breathing and was on CPAP for 3 or so days to keep her lungs inflated to help her to breath. She was to come off the CPAP for 2 hours every 6 hours, but she went so well the first time, they just never put it back on.

Twin 2 is Rachel Elena, born 14/2/2014 at 5:04pm, weighting 860 grams, 30cm long and 25cm head circumference. Even though she was the reason we had to deliver, she needed no help with her breathing and was a ninja in every way. All she needed to do was put weight on and grow to catch her sister.

How did we come up with the names, we hear you ask??? This took us half an hour to come up with after the laser surgery, I mainly wanted to have names for them, as if one of them did not make it, I wanted to be sure that they were known as a person, not as just a fetus.

Well April was for two reasons, one because they were meant to be born in April and second, the TV reporter’s name out of Teenage Mutant Ninja Turtles is also April. Lynn is because of the two strongest willed and loving people we know, other mothers.

For Rachel, well for starters, I thought that Rachel was the TV reporter from TMNT but when we googled it, it was actual the lady out of Batman, so we thought why not stick to the vigilante lady cartoon theme and stick with Rachel, plus it does sound nice with April. Elena is something we had already picked out when we were going through names that we did and didn’t like, Elena means shining light and with the journey that Rachel had done from the very beginning, she is our shining light.

So the girls had spent 10 days at King Edward Hospital, moving from the nursery 3 NICU, to Nursery 2 and then to the HDU and finally being together at last but, throughout the 10 days we were asking for a doctor to look at April’s heart as it had the leaky valve and the thickening of the walls in utero. The first time it did go on deaf ears, I think mainly due to everything else that she had going on and with the breathing and so forth, then once she was in the HDU, and the only thing to do is watch the monitors they are attached too (as well as having the baby blues) I noticed that nothing had been done with her heart and also the monitor did not look right to me to be a normal heart beat. But with some tear and asking questions, we got the nurses and coordinator to get one organised, it did take a couple of days to get one, but one did get done. The EKG was getting done as we were wheeling Rachel in, as the HDU was saving a spot for her right next door. Then we got the news that April has what is called a Severe Pulmonary Valve Stenosis, which means that the valve that opens and closes between the right ventricle and the pulmonary artery is not opening fully and that is the valve that carries the blood to the lungs to be oxygenated. The severe only due to something has to be done to correct it, if it was mild then no procedure will be necessary. So to correct this, a procedure is done when a balloon is inserted through the groin artery and blown up to stretch the valve to open it up to the correct size. This will only need to be performed once and that should be fine. If not then, it will be done again at a later date, and worst case, it will lead to surgery. So with this and so she can be monitored by a cardiology team, we were have to transferred to PMH. Just when we got them together too! But PMH were lovely enough to give us our own little room, where both the girls live now and til they put on some beef and the procedure can be done and we can then be transferred home!

With the scans that the girls get every 1, 7, 14, 28 days old, they scan their head to ensure that here is no bleeds or problems that come up from either the delivery or being premmie. Poor April cant seem to catch a break and it seems that her head scan had cysts in the white matter of her brain on both side. This is called bilateral Periventricular leukomalacia or PVL, which is a type of Cerebral Palsy that will hopefully affect her lower limbs and not the upper limbs. Thankfully it won’t affect her mentally, so just a lot of physiotherapy to be done to keep her limber. It was heartbreaking to hear this as we were told in the NICU that no news is good news in regards to these scans and we weren’t that lucky. Little Rachel scan found one cyst in her white matter but it isn’t something to worry bout at this stage.

And that is where we are at now. We have also learnt after the first week, that we cannot be at the hospital all day and into the night as it is exhausting being there and stressing about them, so we have learnt that it is ok to go home and rest, as the girls are in the best possible hands. Everyone, from Professor Jan and the Gold Team, to the NICU & SCN nurses and doctors at both PMH and King Eddy, they have been a pillow of support and comfort in knowing that are girls will be there tomorrow.

Rohan is now back home working and will be travelling up for the weekend to be with his girls and I will be in Perth from now on until the girls are coming home. It is another long journey as it probably won’t be until their due date of 19/4/14. But it will be worth it.

It is also amazing on all the different foundations that are round, with Miracle Babies Foundation, to Heart Kids, to Boulder Rotary (which I need to ask about) that are here to help and make it less stressful on us through this time. There is going to be a lot of fundraising coming throughout the years, I say, so be prepared :o)

So sorry if this is a bit all over the place, trying to put 3 weeks into an essay and not be bogged down in all the details of hospital life. We are also trying not to put photos and information on social media at this point as we will want the girls to be home before we go nuts with that. So sorry if you haven’t seen photos yet, they will be coming. If you would like one, let me know and I can email one to you.

Please also be sure that you will get to meet them in person in Perth and Kalgoorlie. There might be a chance that we will be transferred to Kalgoorlie Hospital.

Rohan and I will really like to thank everyone both on this list and beyond for all your positive thoughts and prayers and encouragements throughout this time and the whole pregnancy! I don’t think we could have done it without your support and also allowing us to vent to you weekly through this update. It was a good release and also helped us nut out all of the details, to make sure that it is correct at the time it was emailed out. Also to all the people behind the scenes, for helping with the dogs and the house, and phone calls and helping to distract us from our own thoughts, it will not be forgotten!

Lot of love Bobbi-Jo, Rohan and the Ninjas April and Rachel.

xoxoxoxo

April and Rachel at 17 days old.

ar 17 days old

Twelveth Update – Wise/Williams Twins – 2nd February 2014

Posted on by bjwilliams2014

29 Weeks

Apologies for not writing this last week, it has been a pretty full on 2 weeks with everything that has happened and I just didn’t really get the time to write one up. You could say that we had so much fun celebrating Australia Day the day before that the twins really wanted to be a part of it as well.

So for 28 weeks, the scan went well, Twin 1 heart beats were at 148 bpm and 4.7cm fluid around, all the Dopplers were good, even the brain one as it shows that the leaky valve in the heart is not affecting the baby at all. Twin 2 heart beat was at 163 bpm and 3.9cm of fluid round and all the Dopplers were also good. We think this one will be very flexible on the outside world. Currently in a position of breech – so bum first – well it is sitting on the face of the other one and the feet well they are up round the head also. We had the Professor jabbing the belly in order to get it to move, after a couple of goes, it moved its foot! Poor thing might have to get it into diving or something later on in life. It is already learnt the pike position at least.

Also got the jab in the hip for the first lot of steroid injections, man they hurt like hell! But the second one 24 hours later, even worst! And it wasn’t even in the same side! Apparently the more you get the more they hurt, but lucky no facial hair or chest hair has popped up so I think I am in the clear there.

So the saga of Saturday night – as all pregnant women know the indigestion that you get is horrendous, for me it has been waking me up at night and bout 2 Mylanta tablets later it may of settled down, well this night, it did a little but then heart palpitations and real shortness of breath came straight after it as well. This went on for round an hour, mainly because Rohan was taking my pulse as well and it was fine, so we couldn’t figure it out and what it was causing it. Then Twin 2 moved, right up under my ribs and down the side. It was like it was moving out of that position. That had put me in tears and Rohan was then ‘we are off to hospital’. I went straight through emergency at Armadale and had ecg and bloods and blood pressure and so forth taken and all of that was coming back fine. It was only my heart that was beating a bit fast. I don’t know how to spell the name but starts with T – I will call it the T-word. I had one of the midwives come and see me and the babies were doing well and regular heart beats, it was that they were moving so much that it was really hurting. I think also talking to the nurses and all of that, it helped take my mind of the heart and shortness of breath. The ED doc was thinking that I may have a clot on the lung which comes with pregnancy as the blood does become ‘sticky’ or thick due to supply a fair share to the babies and this may mean that one has become stuck in one of the arteries in the lungs. I needed to have a lung test to do this and this could only be done at Royal Perth as Armadale does not have that equipment. The midwife was still round at this time and was feeling my belly and she also seemed to think that I was having Braxton hick’s contractions as well. After she left, then I had a contraction (Well I think it was, it was only in the belly area and not in the back) but these kids were moving and causing me a lot of pain!

From that they took me up to the maternity ward, I was having proper contractions, every 5 minutes apart and after having a test done to see if I was in labour, I was. I just was not dilated or anything. The pains in the chest and shortness of breath had calmed down now and I was being shipped off to King Eddy as the Dr on the ward at Armadale (with less personality then the cupboard that was next to the bed) said that the clot may have passed now, and with the contractions being so often and so early in the pregnancy, I am better off at King Eddy. We were like yes we are better off there. I had 3 doses of stop labour pills as well throughout this, so if they wore off and I started contracting again, then these babies were coming out now. The worry part was after the first two, they were not stopping, still staying 5 minutes apart, but by the 3rd one, they slowly moved further apart and in the ambulance to King Eddy they were now 14 minutes apart. But these babies were still moving the most I have ever felt! I must say Rohan was so on to all the timing and being so calm and everything, at least I know he would be the best support person ever with this. It was also lucky that both he and my parents were at Aunty Lorna’s and hadn’t left yet, as we know have an action plan for Aunty Lorna when everyone isn’t here.

So at King Eddy’s, I was monitored for a bit and was told the golden words that these babies are not coming out today! I was moved to a ward bed and had a lovely Dr come and see me in the afternoon and it was the first time that I had someone actually examine me, and just me. He ruled out the clot in the lung but we still had to go off and do the test for it to really rule it out, but from all that we just went through, with the heart palpitations and shortness of breath, I had, we he calls it, pre-clinical pre eclampsia. He calls it that due to me having all the symptoms of it, but I am not showing it at the moment. So it could hit in 3 days or 3 weeks, I just have to be really monitored for it. So any shortness of breath or heart palpitations, then I have to tell people that I am having it. Plus it is all caused, for me at least, by the indigestion as well. But I still only had to take Mylanta. So 3 nights in hospital, and the lung test coming back negative for clots, I was released from hospital, mainly due to now being scanned twice a week; I will be monitored that way.

So enough of that, onto the scan on Friday just gone.

The scan this week was a very busy one you can say, we had Doctor doing the scan with the Professor watching and Doctor is just so fast with the scan, that we didn’t really catch much. We also had the midwives come and talk to us throughout as well, so we weren’t really paying attention, until Rohan got out the note book and wrote most of it down.

Twin 1 is now over a kilo with 1120 grams and heartbeat of 155 bpm. The walls of its heart are thickening but it is not interrupting the function of the heart at all, so they are not concern about it. There was 2.3cm of fluid round it, so either it’s growing or there is a full bladder.

Twin 2 is 740 grams and heartbeat was not taken, for some reason may be the position, even though you couldn’t even see what position it was in. The Dr just said it was in a better position than some of the singleton babies he had scanned that morning. There was also 2.1cm of fluid round. Bit all the Dopplers and blood flow were good for both of them

And then the news came that we may be having these babies at 30 weeks. (which is next week) Mainly due the Professor liking more weight behind Twin 2, but it may start to decline anytime soon and they want to be able to catch it beforehand. Also it doesn’t help that my body is now failing as well, but that means that we have got to our personal goal of 30 weeks and had the jabs, and we knew that this was coming, it is just a bit more of a shock now that it is becoming a reality. We just need to sort out our lives now, so that Rohan can be here with me at that time.

We also saw a paediatrician that explained what will be happening after the babies are born and what they will be doing through until they are ready to come home. To keep it short, a lot of test to ensure there is no infections in the stomach or gut, the lungs to be functioning well as they will be stiff when they are born due to not being developed enough, and also the brain and whether it was damaged at all from the delivery, being premature or the whole TTTS disease. They will be having tests every day for about 6-8 weeks, a lot of tubes will be coming out of them and also breathing masks will be attached to help with the breathing. This will be hard to take, but so we have them in the end, it is going to be worth it.

So another scan on Tuesday and it will be the first one without Rohan, So Aunty Lorna and Lee will be coming with me to be my support and information sponge, as lately I haven’t been taking anything in. Blame it on the mummy brain.

So til next weekend, as I will still only do the one update.

Lot of love Bobbi-Jo, Rohan and the Ninjas

xoxoxoxo

NinthUpdate – Wise/Williams Twins – 5th January 2014

Posted on by bjwilliams2014

25 Weeks

Cue music – Cue Johnny Nash – “We can see clearly now the rain has gone, we can see all obstacles in our way” Yes you read right and singing the whole song now, I bet. We have some answers to our questions and now know what is going to be happening in the next month or so, and it is the best feeling ever after the last two weeks. Positive feelings and emotions are now coming through instead of tears and worry.

So we have now worked out the system of when the Prof is going to be doing the scan with the ladies at the front desk. If our file is there with them, the Dr is going to be doing the scan. If the file isn’t there, than we have the Prof and this week, the file wasn’t there, we had the Prof and hopefully the answers we needed. It was also measurement day as well, so we also get to see how the babies are progressing and if they have put some fat on.

When the Prof Jan put the scanner on our belly, all you could see was babies’ arms and legs and bodies, it is hard to believe that they have grown so much and you don’t notice it until you really look at it. But onto the measurements;

Twin 1 is still progressing nicely, weighing in at 681 grams and a heart rate of 147bpm with 3.5cm of fluid around it and also a nice full bladder and fluid on the stomach. We also got to see glimpses of the kidney and other organs, which didn’t look like much to us, but the Prof said that they look good and in the right spots. So this little ninja is still growing along nicely having put on 179 grams in the last two weeks, now within the percentile range but only just.

Twin 2 – the biggest fighter of all, weighing in at 445 grams, with a heart rate of 135 bpm and 3.4cm of fluid around it also with a nice full bladder and fluid on the stomach. Falling a little bit more outside the percentile range, but they are both moving along on their own graph line. This also means that not much weight has been put on, with only 60 grams been put on in the last 2 weeks. The Dopplers are still the same, they haven’t gotten worse and they haven’t gotten better, so the Prof would like to see this little fighter at 600 grams before they will be delivered. But they would like for us to get to 28 weeks before they will deliver them. Hopefully we can bake them a little bit longer. Fingers crossed.

So at least we now have a time line to work towards and they have also told me to slow down on the work front and look at going on maternity leave next week. I am staying in Perth for this week and passing on the work to the lady who will be reliving me for this time. I have been told to rest and keep my feet up and lie on my sides to help with the blood flow to the babies and placenta, and also keep on drinking the lovely tasty protein shake to help with that also. Just waiting on now, is when we will be having to do the scans twice a week and if not next week, I will be going back home to say bye to Kalgoorlie for probably the next 3-4 months whilst the babies are born and in nicu and the special nursery for the however long they will be in there for and can come home with us. I meet up with a friend, before coming to Perth, who also had a premmie baby and the information she gave me is golden! We need to be ready to be scared and emotional and also demanding. It’s great to have that heads up and we will now be having a tour of the nicu and meeting with one of the paediatricians beforehand.

So Rohan has now gone home in our new bigger family car, a 2010 Ford Territory, (still thinking of a name for it, I like “twin terror”) so he can now tinker with it however he likes and also has a reliable car to drive up and back in. We didn’t trade in the other car, so I have that here with me.

Well another scan next Friday at 1.30pm and hopefully know even more from then. With all of this time off, it will give me time to rest and make up two little memory boxes. I also want to look into a good blog site, so that I can put these updates (taking out the nasties about the doctors) and everything else to this point to help other couples and families with what we have and will go through due to TTTS. A lot of stories that we have read so far is just like an essay on the whole TTTS journey on a page, instead of really getting into the emotional rollercoaster and week by week blow on how things are. When we were first diagnose with this and asked about it on facebook on alot of the twin pages, a lot of the ladies just commented and said a friend of mine had that and the babies turned out fine, or they had it, and it was all good. For me personally, I need to know more and not knowing these people, I didn’t want to dive into their personal life and ask “was it really?” I would have been happy with comments like, “we had that and the babies are fine, but get ready for the emotional/bumpy roller coaster.” But with this blog I am thinking of doing, hopefully it will give people more insight to the disease and let people know it is alright to be scared s**tless and have the unknown week to week confuse the hell out of you, but it also tests your relationships with partners, family and friends and make you want to see your babies each week and hope that there are still two heartbeats every single time.

Well time to go and find something to eat! I am starving!

“It’s going to be a bright, bright, bright sun-shiny day!”

Lot of love Bobbi-Jo, Rohan and the Ninjas

xoxoxoxo