Triumph & Tragedy for Preemie Twins
On the 14th October 2014, my sister Laura, gave birth to a beautiful set of twins - Temperance Adara and her brother Dorian Leigh. They were born at 25 weeks and 2 days and weighed just 400g and 420g respectively.
Here is their story, and the story of their incredible twins.
Laura's pregnancy was going very smoothly (not even any morning sickness) until things went horribly wrong on Tuesday, 7th October 2014. The journey that followed was incredibly tough for her and her husband Chris, and their twins.
Here are some photos from the twins' early days...
Dorian (Oct 14, '14)
Temperance (Oct 14, '14)
(Chris) Daddy's hand in comparison to little Temperance... (Nov 8, '14)
Dorian compared to Daddy's hand... (Nov 9, '14)
Temperance
Dorian
An absolute rollercoaster ride of emotions followed for Laura & Chris, as the bubs had good days and bad...
Both bubs were highly critical even before they were born. Laura was admitted to hospital with pre-eclampsia just 1 week before her twins were delivered by emergency caesarian and was told that the blood flow to baby B was reduced. She was told to make a decision about her pregnancy, to make a choice of whether to deliver immediately and risk both babies due to their early gestation and apparent small size or to continue with the pregnancy in the hopes that baby A would continue to grow but likely to lose baby B in-utero. Such a difficult and heartbreaking decision for my sister and Chris to make!
Laura had five ultrasounds and twice daily fetal heartbeat checks in the days before the twins' birth - each day praying that they would hear two heartbeats. After the third ultrasound, the doctors told my sister that the blood flow to baby B was now reversed and that this twin was unlikely to be born alive and may not even have a heartbeat the next day...
The constant rollercoaster of emotional highs and lows was taking its toll on Laura as her condition continued to worsen. The day of delivery, Laura and Chris were told that the blood flow to baby A was also compromised and that they would need to decide to deliver the twins or push to make 26 weeks for baby A (chance of survival between 25 weeks and 26 weeks increased by 30-40%). The decision to deliver that day was made easier with the knowledge that Laura herself was not likely to make 26 weeks. All three of them were now at risk.
So, at 11.59am baby A was delivered - a little boy, weighing a mere 420g and only 29cm long; and at 12.00pm baby B was delivered - a little girl, weighing even less at just 400g and only 27cm long. Both babies were alive and were quickly rushed into a separate room where they were wrapped in glad wrap to preserve their warmth and immediately intubated to keep them both alive. They were then taken up to the Newborn Intensive Care Unit of the Mater Mothers Hospital in Brisbane, where they would spend the next 15+ weeks.
The twins chances of survival were very low as a result of their size and gestational age. It would be a miracle if they survived even the first 24hours.
The journey that followed was each day on a knife's edge, not knowing if one or both of them would survive the day, the night, and sometimes the hour.
The situation for Laura and Chris was made worse with Chris having to return to work in Toowoomba, leaving Laura and the twins in Brisbane, and only returning each weekend. Our parents stepped in to provide Laura with support during Chris' absence, staying with her Monday to Friday.
The twins started out in separate rooms within the NICU. Laura and Chris would have to scrub up to visit one baby and then repeat the process to visit the other one. It was incredibly draining having to go between the two rooms and trying to share their time with them both.
On day 7, Laura was given the news that Temperance had suffered a grade 4 bleed on her brain and would not survive the night. Dorian had also suffered a brain bleed. Dorian's was a grade two, considered quite normal for pre-term babies and usually recoverable. He was still just as critical. It was a very scary night for my sister as she watched her little ones fight for their lives.
On day 8, Dorian was extubated and was put on a machine that supported his own breathing (NIPV then CPAP bubbler). Over the following weeks, he would experienced regular apneas and bradycardia where he would stop breathing and his heartrate would slow dramatically. This was very scary as at any time, he may not have recovered.
Temperance suffered as a result of her brain bleed. She started retaining fluid and swelled dramatically all over her body. She was given daily doses of diuretics to help pass the excess fluid. Her oxygen requirements became unstable and she was given morphine to settle her and ease the pain of her condition.
Each morning, Laura was thankful that the night had passed without a phone call from the hospital bearing bad news. A small positive to start each day...
As the days progressed, there were many small milestones amidst the difficult journeys of the twins - their first poos; wees that wet their bedding; starting to take Laura's breastmilk at just 1ml over 4 hours!; opening their eyes for the first time :); and first cuddles!
And then on the morning of 29 October, Laura did receive a phone call. Temperance had a perforation of her bowel. She would not survive if left untreated yet due to her prematurity and tiny size, she was not expected to survive the surgery either. Another heartbreaking decision but Laura and Chris felt she deserved the chance to live and opted to operate. The surgeon was quite certain that Temperance would die on the operating table, and if not then, in the following days. This amazing little girl was given no chance of survival, yet after just 1 hour in surgery, the surgeon gave Laura and Chris the good news that she had made it! The next 48hours however would be highly critical and again they were told it was unlikely that she would survive. Her stomach was so swollen with the oedemia that they had difficulty stitching it together.
Temperance now had a colostomy bag and would have this for the next couple of months while she grew. And grow she did. Each day she continued to impress the doctors with her amazing strength and determination to live. She had defied the odds so many times already!
Temperance received almost daily platelet transfusions and just as many blood transfusions during those early weeks. Dorian also required regular platelet and blood transfusions but not as many as his sister.
Laura got to have her first cuddle with Dorian on November 5th when he was 23 days old. It was a very exciting moment and one she was able to repeat only once or twice a week until he was more stable.
Finally on November 15th, Dorian was moved into the same room as Temperance! It was a big moment for Laura as she could now see both babies, regardless of which one she was with.
And then just three days later, Temperance was moved to an isolation room due to having contracted a simple cold (Rhinovirus) which for her was potentially life threatening. She would need to be isolated for seven days and additional precautions were needed for handling her to ensure that she was not compromised any further. This extended to Laura's contact with her as well, and she had to visit Dorian first to make sure she didn't pass it onto him as well.
Two days later, Temperance was moved into a shared isolation room and was given a chance to try breathing with the NIPV support. She was unable to manage it without steroids to boost her lungs and was re-intubated. The doctors would start the steroids within 24hours and try again to extubate after four days.
Chris got to have his first cuddle with Dorian on Sunday 23rd November. He looked so tiny in his daddy's big arms!
While Temperance was in isolation, she also contracted Pseudomonas infection in her endotrachial (ET) tube - a water-born bacteria with resistance to many antibiotics. She would remain in isolation until she was discharged and the additional handling precautions would continue while she had the ET tube in. The Rhinovirus also returned in mid December.
Dorian was moved into the isolation room with Temperance on December 1st. They were unable to put another baby with Temperance but felt it was beneficial to both the babies and Laura that Dorian be moved in with her.
Despite the seriousness of their conditions, both babies continued to meet milestones as the weeks progressed, most notably:
Dorian reached 1000 grams on November 26th, had his oxygen changed over to hi-flow on December 16th and was put into an open cot on December 17th, had his first big bath on December 19th and his first nuzzle at Laura's breast the same day, he hit 2kg on December 28th, changed his oxygen supply to low flow on January 6th and came off oxygen all together on January 19th.
Temperance reached 100 grams on December 5th; her Head scan of her brain bleed showed significant improvement on December 22nd with no visible damage as a result of the seriousness of the bleed, she was put into an open cot on January 4th, hit 2kg on January 8th and had her very first big bath on January 27th.
Temperance commenced her second course of steroids on December 14th and responded very quickly. Unfortunately, she again didn't last on the CPAP or NIPV and was re-intubated after only 9 hours on December 19th.
One of Laura's most exciting days occured on Christmas Eve when she got to have cuddles with Temperance for the very first time! She had waited over 10 weeks for this incredibly special opportunity... it was the best Christmas present she could have asked for!
The twins were 100 days old on January 20th, 2015 and had their very first cuddle together! A huge milestone for two miracle babies.
In addition to the monitoring of their bloods and other developmental stages, preemies like Laura's twins have to have their eyes checked for Retinopathy of Prematurity - a condition that affects premature babies eyes as a result of requiring high levels of oxygen during such early stages of development. In some cases the disease can leave a baby blind, and in other cases, can clear up with no permanent effects.
Their eyes were checked from 32 weeks (corrected) gestation and it was confirmed that the disease was present in both and would need to be monitored for deterioration. For Dorian, his eyes reached stage 2 but got no worse. For Temperance, her eyes continued to deteriorate and were being monitored very closely week to week. By Christmas, the opthamologist advised that she would need treatment to slow the deterioration or she would require laser surgery to ensure her retinas didn't detach. She was given a new treatment therapy whereby they injected a hormone into her eyes to stunt the growth of the blood vessels on January 2nd, 2015. It was not a guaranteed fix and her eyes would continue to be monitored closely.
The issue with this treatment was that it could take 4-6 weeks to be sure that her eyes wouldn't flare up again and if they did, and she needed laser surgery, she would need to be intubated to have it done. This delayed the doctor's next attempt to extubate Temperance as they now had to wait for confirmation from the opthamologist that she wouldn't need the laser surgery. It was during this waiting period that Temperance appeared to be in the best condition to attempt to extubate and having to wait was very frustrating for not only Laura and Chris, but the doctor as well.
Unfortunately, due to the ET tube causing Temperance quite a lot of distress and her condition not improving relying on the machines for her oxygen , Chris and Laura made the decision to commence Temperance on her third and final dose of steroids on Friday, January 23rd. This was their final chance to get their baby girl on the road to breathing on her own, and ultimately on the road to home. It was a difficult decision for them to come to, knowing that if it didn't work, Temperance would not be re-intubated... It was their little girl's final hurdle - and a giant hurdle at that.
Here are some daily updates that Laura provided to family and friends -
"We have a little poo! Woohoo! It wasn't much but hopefully its a start :) Doc also thinks her gut is healthier than originally thought as she is also tolerating her feeds. ... Dorian had some blood in his stool overnight but doc not concerned - going to give him some antacid and antibiotics as well as platelets and blood. Will resume feeds later today once all done." (Mon, 27/10/14)
"Needing a miracle today - Temperance is going to theatre for a perforation in her bowel. Extremely high risk and surgeon is not hopeful of her survival but won't survive without trying the surgery..." (Wed, 29/10/14)
"...Temperance has been stable and is looking better for the fluid loss - not so puffy. Insulin stopped this morning ... might try to weigh her today but that will depend on how stable she stays. But heart rate, BP and oxygen requirements have been stable. Dorian is also doing very well still. Has lost a little weight since his last measure (40g) so they've added an extra additive to make him grow more ... His breathing requirements are still about 26% which is good." (Mon, 03/11/14)
"So Temperance is looking better again today - even Luke thinks she looks less fluidy. Needs more platelets again as she is chewing through them. They are checking for a virus that can cause this but it could just be her recovering. BP is still up - mid forties now. Going to start feeds on 1ml/4hrs today and see how she goes :) ... Happy to hold mummy's hand today - didn't want to know about me yesterday! Our boy is being well behaved today and even held my hand for a while too! Feeling special today :) LOL! ... his oxygen is about 38% but has been up and down all night." (Wed, 05/11/14)
"...Been an uneventful night and day. Both bubs much the same. Temperance had platelets this afternoon so see how many days they last. Not tolerating her feeds terribly well but continuing with them as its not more than half being aspirated over the 12hours. Dorian still travelling along and having his gas monitored daily but no call to change his ventilation just yet." (Sun, 09/11/14)
"...Temperance has had both arterial lines taken out of her legs and is going up to 5ml feeds today. If this goes ok, they will cut back and/or stop the nutrient IV. ... Possibly over the weekend they will start her on some caffeine so that they can put her onto NIPV maybe Monday...Dorian hasn't quite settled on his CPAP but that can take a couple days. He is otherwise good. He looks fatter today so will see tomorrow how much weight he has gained since Tuesday night." (Fri, 14/11/14)
"Temperance - platelets down to 17 and hemoglobin down to 90. No transfusions today as doc wants to see if her body is starting to produce these herself. Sugars also low but fully fortifying feeds at 8ml now which will hopefully bring this up and get her growing. Hoping to be on CPAP by end of week. Doc wants to get tube out as been in 5 weeks, so see how she goes and may be reintubated if needed. Very active but looking healthy. 770 grams now. Dorian doing well and growing heaps! Looks bigger every day! 830 grams now :)" (Tue, 18/11/14)
"You won't believe it but our little girl is now 990 grams!...blood cultures came back and she has some blood infection and her tube swab also showed infection but the antibiotics she was on from Sunday night have brought her CRP down from 141 to 44...Her platelets are down to 22 again so they will do another blood test tomorrow. They also dropped her MAP from 14 to 13 today but increased her oxygen to 40%...No change with the young man. He's just plodding along :)" (Tue, 02/12/14)
"Both bubs being immunised tomorrow. Will get panadol for any upset and temperatures. Can cause more apneas so Dorian may (may!) have to be re-ventilated if he plays up. Still quite a lot of secretions from Temperance's nose and ventilation tube today. Luke is going to stop her antibiotics Mon/Tue, give her a week off, then give her more steroids to take her off the ventilation again. He wants her off for Christmas! All going fine otherwise." (Thu, 04/12/14)
"Temperance has been back in high 80's with her oxygen since this morning. No desats which is good but haven't dropped any settings either. Luke is away sick today so one of the other docs is looking after them. She is happy to leave her where she is for now (MAP 18 ampl 28). Platelets were down to 11 so had them earlier. CRP done yesterday actually shows her infection markers increased to 66 so thats not real good. still on antibiotics though. More blood tests tomorrow including CRP. Still tolerating her 17ml feeds and stoma working fine. Dorian is doing well with his feeds at 20ml and his CPAP at 7. Weighing 1310g now which is fantastic ;)" (Mon, 08/12/14)
"Temperance having more platelets today as they are down to 15 again. In mid 50's with her oxygen at the moment and wide awake! She has the most adorable face <3 Had some extra blood taken to do some testing for liver function as she is looking a little bronze coloured today. Also had chest xray this morning and will have eyes tested later today as well. Dorian is in a little more air since first thing this morning but still only about 25%. he has been quiet and sleeping. Grandad is giving him his 9.30am feed :)" (Thu, 11/12/14)
" So the little miss has got the rhino virus back so we are on contact control againl. Poor darling just can't catch a break! At least it explains the nasal secretions still happening. Found out too that she will be isolated for the remainder of her hospital stay due to the Pseudomonas infection. She is currently in about 40% oxygen and still satting high. Morphine drip will be stopped. Following steroids yesterday Luke is aiming to get her map down to 10-12 by Thursday to extubate her. While her tummy looks larger , Luke's opinion is that it is a surgical hernia and nothing to worry about. Dorian is now on hi flow! Whoohoo! i can see my little boy's face... and what a cutie he is! Plan for him this week, providing he copes with hi flow, is change to 3hrly feeds, start breastfeeds (suckling at least) and move into an open cot! luke was quite impressed with them both after being away the last week which is always good to see :)" (Tue, 16/12/14)
"Both bubs had a quiet night and both weighed. Dorian now 1702g and Temperance 1470g. No changes to Temperance's oxygen so still needing between 40-55%... Dorian had a bath this morning and a first go at sucking at my breast! He did very well with both lol. He is handling his 3hrly feeds very well also. Temperance has been on cpap for the past 2hrs. She is holding her own with sats in the 90's and she has just had the oxygen turned down from 100% to 80%. Her gas at midday was not real good (CO2 at 69.9%) but Luke giving her her best chance and will see how she goes." (Fri, 19/12/14)
"...Dorian very well. Still on high flow at 4L/min. Feeds now up to 47ml 3hrly! Had hiccups this morning which was really cute! That was after his feed and cuddle. Temperance still stable. Oxygen down in high 20s and map reduced to 13. Early blood gas good - CO2 49%. Doc today said he is surprised by her. She hasn't given up when a lot of babies would have, after what she's been through. Ultrasounds from yesterday were good. Temperance's head shows improvement again and no problems evident with her liver. Her colour actually looks a little better today - not so jaundiced." (Tue, 23/01/14)
"So Temperance went up to 60% oxygen yesterday afternoon and she is still in 50% oxygen this morning. They've done an xray on her to check her lungs as her blood gas this morning wasn't so good...She looks quite good this morning though. A little pale but her tummy is much smaller and almost normal colour. Weighed her again overnight and she was 1500g. So 30g loss with is probably just fluid. I think she's longer too! Dorian's oxygen was reduced to 20ml this morning but up to 50ml again after his 8.30am feed as he was desatting a bit. Canula put in after his blood gas showed his hemoglobin to be down but his full blood count was find so not sure if he will get a top up or not. Getting weighed before his bath this morning so see if he cracks the 2kg mark!" (Sun, 28/12/14)
"Kids ok today. Temperance being put into an open cot today as she is too old for the humidicrib now and getting too hot having to be wrapped up to settle her. I get cuddles while they do the swap!! Oxygen at 40%, MAP at 14 and amplitude at 28 currently. Still working on getting her pressures back down to where they were before Friday. Weighed overnight and it came in at 1910g but going to re-weigh her today as that seems very wrong! A gain of 322g - I don't hink so!! Dorian is all good. Still on flow of 5L and feeds of 44ml. Had cuddles with daddy last night and loved it :)" (Sun, 04/01/15)
"Luke just told Dorian he's starting to look like Chris lol! Luke really happy with Temperance at the moment and would love to give her steroids now to extubate her but he hasn't gotten definite confirmation from the opthamologist that the injections have worked. He has informal advice that there is improvement but isn't sure when they will be back to check her again. He says she is in the best shape with low oxygen and good weight gain to extubate so is a little frustrated that he can't in case they say she has to have the laser surgery. Oh well... He's going to start Dorian on low flow again today and they are going to start trying bottle feeds with him!!" (Tue, 06/01/15)
" Bathed, weighed and cuddled the little miss last night! Another 110g gain so now 2166g! She was very good with her cuddle :) And her sponge bath. No changes today with either of them. Tried another nuzzle with Dorian. Getting better but still not getting much just yet. All in good time." (Sat, 10/01/15)
"Things not so good here this weekend. Temperance has had a bad couple of days (since Friday) and is now back in 100% oxygen, map of 18 and amplitude of 42. Her sats are quite poor even at the increased pressures which is a worry. We have gotten her sedated and on morphine to keep her calm and hope that we can get her settled again. Xray again is no worse so doctors have no idea why she has gotten worse. Going to have an ECG to check her heart...Found out yesterday we have to wait 4-6 weeks for her eyes to see if they flare up again. Not what we had hoped to hear which is why we pushed to have her partially sedated so that she can get through the waiting period with the tube still in. Going to talk to the opthamologist about prognosis to see if we just start the steroids and hope for the best. She is back to 2hrly feeds to assist with pressure on her lungs with a full belly. In better news, she is still growing. Last weigh on Thursday night was 2480g. Dorian has been good. Hasn't been interested in breastfeeds the last two days but has been sucking well with bottle feeds. Try him again today." (Sun, 18/01/15)
"Temperance has gone downhill again overnight. Back into 100% oxygen and map of 19. Xray showed tube a little high so adjusted it in slightly further and some small areas of collapse on right side. Giving oral morphine again to help settle her. Sats mid 80's to low 90's....They've started Temperance on antibiotics again while they wait for a culture fom her ET tube and a blood sample...Dorian doing well. Another breastfeed after his bath and weigh. Up to 2830g now. Physio is very happy with his development." (Thu, 22/01/15)
I live thousands of kilometres away from Laura & Chris and so the above texts were my daily connection with these precious babies and the fight they were going through. It was so heartbreaking to be so far away and unable to see them and my sister as she went through such a devastating time of highs and lows. I was lucky enough to be able to spend time with them over Christmas and to visit the hospital to marvel at my new niece and nephew. So tiny and fragile and yet so strong and resilient.
Tragically on 29th January 2015, Temperance lost her fight for life, after a very long and difficult journey. The outcome no-one wanted or prayed for, nor prepared for. She was surrounded by love in her mummy and daddy's arms as she slipped away. A beautiful little girl who will be remembered and cherished forever.... now at peace, a little angel up in heaven.
But out of every tragedy there is good, and after 109 days in hospital, my nephew Dorian was finally able to go home with his Mummy & Daddy...
Laura and Chris brought their precious Dorian home on Monday 2nd February 2015. Finally, after almost 4 months living in Brisbane, Laura was back in her own home, about to start her new life as a mummy with her gorgeous son Dorian. It was a terribly bittersweet homecoming for my sister, returning home with only one of her precious twins and knowing she had a funeral to plan for their beloved daughter.
Temperance was farewelled in an emotional funeral service on Friday, February 13, 2015. A final farewell to a beautiful baby girl taken too soon but who is now at peace.
I've started this website to help raise funds for my sister and her family. I can't be there to lend a helping hand, to give a comforting hug or be a shoulder to cry on but perhaps I can help to raise some funds to take the pressure off; to allow Laura to be able to stay at home and care for her amazing son who because of his prematurity isn't able to attend daycare for the first 12 months due to the chance of contracting even a simple cold which could be life-threatening for him; and to buy some time for them as a couple and a family to grieve for their little angel they've lost, while they now begin the next phase of their life.
