Saturday, February 21, 2009

Where it all started...March 2006

It is a long story as to how we ended up here - so for those who want to get up to speed here is how it all unfolded.

The following posts are taken from prayer requests my sister was emailing to our friends and family at the time surrounding Ashlea & Audrey's birth.  Here we go...


Prayer request 17/3/06
Can you please pray for my sister Alison & her unborn twins (currently they are 22wks)...they have developed twin to twin transfusion/transfer (sorry don't know the exact terminology), which means one twin is getting too much in the resources department & the other not enough, which puts the survival of both twins at risk. Alison is having a procedure to reduce the amniotic fluid on twin A (the big twin) today which only really buys a bit of time & they may require surgery if it continues to progress. Please pray that the procedure is successful today & that God willing both twins can grow sufficiently for a safe delivery (often these cases require early delivery).
Please pray for Alison & Murray as they also have a 2yr old to care for at the same time.

Prayer request 21/3/06
An update - my sister had an appointment with RPA's foetal specialist today. Basically she learnt they are not good candidates for surgery (a procedure to split the placenta into 2) so will need to keep going with the amnio reduction model, which involves draining excess fluid that builds up around twin A for as long as they can. The twins will stay in utero as long as their condition doesn't deteriorate. The aim is to get to 28 weeks up to a max of 32wks but the specialist is doubtful of reaching 28wks (full term for a twin pregnancy is 36wks).

So far the twins haven't deteriorated since the scan taken last Friday & the amnio reduction procedure unstuck twin B (who was stuck owing to all the space twin A's sac was taking up) which is an answer to prayer so far. However, the same procedure punctured both amniotic sacs & put them out of running for a surgical approach to their condition.

Please pray that the twins continue to develop & not deteriorate so that they can get to 28wks+. Please also pray that Alison is able to get as much rest as possible (i.e. as close as you can get to bed rest with a 2yr old).

Twin Update 4/4/06
Here is an update on the twins...
Last week Alison had an amnio reduction & they took out 1.6L of fluid which has meant she hasn't had to have another one this week (yay) although she will probably need another one next week.
Twin B is about 700g and Twin A is about 550g, which is still a little small but still good progress
Today the ultrasound showed that Twin B had urine in her bladder, which hasn't been there for sounds like a strange thing to be happy about but one of the things with twin to twin transfusion syndrome is that the bigger twin who gets too much resources urinates all the time & the smaller one doesn't urinate at presence of urine is actually a very good thing!
The twins are at 25 weeks gestation so we are inching closer to the 28wk+ goal
Alison & Murray have been approached by RPA (the TV program) to record their story so today's appointment (and all following) involved a camera crew as well

Please pray
- that the twins continue to grow & develop & stay in utero as long as possible
- that the RPA TV experience is a good one & an opportunity to promote the gospel
- for nerves of everyone as the birth day approaches
- for logistics etc when Alison is admitted to hospital
- for Alison & Murray (& other babysitters) for keeping up some sort of routine for Emma
- for continued rest for Alison
- for wisdom for the doctors & specialists caring for Alison & the twins

Praise God
- that the twins have shown good development in the last 2 weeks & have not deteriorated
- for the kindness of so many people who have offered to help out Alison & Murray with meals, - babysitting & housework
- for well wishes from friends & family
- for the loan of a car seat so that I can help out more with Emma

Twin Update 12/4/06
Well it was an eventful day yesterday with Alison's appointment involving being admitted to the hospital for closer monitoring as well as Emma (Alison & Murray's 2 yr old) being sick with Murray & I have had a bit of car shuffling & swapping places to get to Alison's appointments & to make sure Emma is cared for.

Here are the details of her appointment:

Yesterday Alison was at 26wks and 1 day pregnant

The scan showed that things are deteriorating
- Twin B had an enlarged bladder while Twin A's bladder could not be detected on this week's scan
- Twin B's  heart was enlarged and is under a bit of stress to cope with the extra volume of blood she is receiving (although according to the doctor, is coping with her circumstances for the moment)
- the outer amniotic membrane is coming away from the uterine wall which means that there is a very high risk of Alison's waters breaking if any or no procedures are done

The outcome is that
- Alison was admitted to RPA & will stay in until the twins are delivered
- Alison will receive steroid injections (she received one yesterday) to help the twins lungs' develop
- once the steroid effect has been achieved (in a few days) she will have another amnio fluid reduction this week
- the amnio reduction may result in the twins being delivered (ie around Friday)

Please pray
- that the doctors will have wisdom in their decision making
- that they will be able to perform an amnio reduction this week & that it will relieve the pressure on the twins, especially Twin B's heart
- that this week's amnio reduction won't bring on labour (as both twins are still very small)
- for Alison & Murray's level of anxiety
- that Emma will recover from her illness quickly & won't be too disturbed by Alison being in the hospital
- that Alison (& the rest of us!) won't get Emma's gastro bug

Twin Update 14/4/06
Alison's amnio reduction today went ok. They took out about 2-2.5L of fluid, not much compared to the 10L+ of fluid built up but some none-the-less.
A great answer to prayer is that the amnio reduction has not bought on labour.

Please continue to pray:
- For the twins' continued growth & development
- For wisdom of the doctors as to the best time to deliver the twins
- For Alison & Murray's anxiety levels
- For Emma who is (still) recovering from a gastro bug
- For Murray who has just gotten Emma's gastro bug
- That Alison (& the other people who have looked after Emma in the last week) won't get sick too

Twin Update 18/4/06
Alison had another ultrasound appointment today. As the fluid had not built up too much since Friday she did not need another amnio reduction. They will leave things for the moment & reassess it later this week & possibly do another reduction then. Today Alison is 27wks & 1 day pregnant, inching closer to the minimum goal of 28wks.

Things today showed the situation stable in terms of the fluid content (i.e. lower chance of going into labour) & the twins much the same as before, Audrey's heart still showing some pressure and Ashlea still small. The ultrasound indicated that they have grown a little too.

Praise god that Emma is better & that M is recovering too (and that I haven't gotten the bug!).

Please continue to pray for:
- For the twins' continued growth & development
- For wisdom of the doctors as to the best time to deliver the twins
- For Alison & Murray's anxiety levels

Twins are coming today (21/4/06)
The twins are being delivered at 2pm today. Twin B's heart is under too much pressure and the little twin is moving less so the doctors have decided that there options out of the womb are better than in. Please pray as they are still very small and we are unsure of their chances of survival.

The twins have arrived (21/4/06)
The news you have all been waiting for, the twins have arrived (21.04.06) at 27wks 4 days gestation.

Ashlea (Twin A) was born at 3.35pm, weighing in at 570g

Audrey (Twin B) was born at 3.36pm, weighing in at 820g

The c-section went well & proved to be the least traumatic means of birth for the girls so the doctors were pleased. Both girls are in the NICU (Neo-natal intensive care unit) and are on ventilators. Audrey's heart is struggling which was what we expected and Ashlea has some blood pressure problems although her heart is pumping well. Given how sick they were it is as good an outcome as we could have hoped for.

Please continue to pray:
- for Ashlea & Audrey particularly in the next 48 hours as it is when they are most of risk of complications such as bleeds into the brain.
- for Alison as she recovers from her surgery
- for Murray as he juggles caring for Emma & getting to the hospital
- for Emma as she struggles to understand what is happening

Twin update 22/4/06
The twins are stable for the moment. Today Emma, myself, my mother, Murray's mother his sister were able to briefly see the twins in the NICU. They are very tiny to say the least but are in the good care of the NICU staff. Please continue to pray for them as they are susceptible to infections & many other sorts of complications.

Twin update 23/4/06
The girls struggled a little overnight but are stable now. The medication given to them to close their heart ducts has side effects which both twins have. Ashlea's heart duct has closed already but Audrey's has not closed yet. The girls' electrolyte balances are out & they are receiving medications to control this. They are also not urinating much which also has an effect on their electrolyte balance. Overnight they also had to turn up the ventilators. At this stage it looks as though Ashlea is more stable than Audrey as her heart duct is already closed. Please continue to pray for their health.

Twin update 24/4/06
Audrey's kidney function is improving (i.e. she is urinating), Ashlea's hasn't yet. Audrey's heart valve still hasn't closed and 2 of her toes are purple although it seems that her heart function has improved somewhat. Both girls had good heart and brain scans. Please continue to pray for their continued health.

Twin update 25/4/06
Of major concern is that she is still not urinating which means she may not survive (as she was not producing urine the last 5 wks of the pregnancy). Please pray that her kidneys will start to work & produce urine in the coming hours.

Audrey has been taken off morphine & they are trying to wean her off the ventilator. Two of her toes on her right foot are still dark owing to earlier circulation problems. On the plus side she has been weeing & pooing so since the system seems to be working she has been given some milk today (a whole 2mL!). Please pray for continued development.

Twin update 26/4/06
Ashlea (570g) needs urgent prayer, she should be urinating about 10mL a day but has only managed 1mL in the last day & 3mL the day before that. If her kidneys don't start to produce urine (in the next day or so) she will suffer kidney failure which is untreatable for such premature babies and causes death (owing to the other organs failing). Her ulrasound today showed good blood flow to the kidneys & presence of a small bladder so please pray that her kidneys will start to work properly & she will start weeing (lots!).

Audrey (820g) is going much better than her sister, her milk intake has increased to 1mL every 2 hours and the NICU staff are trying to wean her off the ventilator and hope to transfer her over to CPAP in the near future. Please pray for continued growth for her. Please pray specifically for Alison and Murray at this very stressful time with Ashlea being so ill. Please also pray for Alison's milk supply.

Twin update 27/4/06

Audrey has been off the ventilator all night & is on CPAP (which is through a nasal canula & not a breathing tube). Alison & Murray heard her first cries (described as very cute) and Alison got her first cuddle. Audrey is up to 1mL breast milk every 2 hours. Praise God for her progress so far & please continue to pray for strength against infections and other potential complications.

Ashlea has urinated 3mL today but needs to do a lot more. Please pray that she will start urinating regularly (she needs to pass 10mL per day) so that she can avoid kidney failure & also so the NICU staff can start progressing with her treatment. Ashlea was started on 1mL of breast milk every 4hrs, despite the no wee situation.

Twin update 28/4/06
In the words of her doctor...Ashlea continues to "teeter on the edge". Her situation last night was quite dire (she did not wee overnight & her ventilator needed to be upped) but today has done a sum of wee (5mL). Please pray that her kidneys start to work regularly as at the moment she is in renal failure & needs to be passing at least 10mL per day to have any hope of recovering. As her situation is so uncertain Alison will stay in hospital until Ashlea's situation is resolved (for better or worse).

Audrey continues to soldier on. She is stable on CPAP & is being given short periods each day without CPAP to help build up her lungs fitness I guess at breathing unassisted. Her heart is still enlarged but the duct has closed & it appears to be working well. Praise God for her progress & pray for continued growth & development. Please remember Alison & Murray & Emma in your prayers. It is quite a stressful & unsettling situation for all of them.

Twin update 1/5/06
Please continue to pray for Ashlea's kidney function. Although her kidneys are now producing urine her blood tests still show poor kidney function as she still needs to pass all the fluid that has built up while her kidneys weren't working. Ashlea's milk intake is still at 1mL every 4hrs but she is now also receiving IV nutrition. In the coming days the doctors will try & wean Ashlea off her ventilator so that she can go on CPAP. Please pray that she won't get any infections as she is at higher risk of complications due to the twin to twin transfusion syndrome.

Audrey continues to power on, the doctors are trying to increase her milk intake to 1mL every hour and she has been on IV nutrition for a few days. She continues to get daily cuddles with mum (she doesn't like getting in & out of the humidicrib but enjoys the cuddle side of things). Please also pray that she won't get any infections as she also is at higher risk of complications due to the twin to twin transfusion syndrome.

Alison, Murray & Emma.
Alison has come home from hospital. Please continue to pray for her recovery and for her milk supply. Please pray for the whole family as they now try to juggle life around visits to the hospital, especially in the next couple of weeks while Alison is not allowed to drive (owing to recovering from surgery). Please continue to pray for Emma who is very excited to have her mummy at home but does not completely understand the new routine.

Twin update 2/5/06
Ashlea has a bit of a skin infection under her neck & arm owing to the fluid build up from her kidney problems. She is on antibiotics at the moment to control this. At the moment she is on 1mL milk/2hrs and they are waiting for blood tests to improve (on her kidney function) before being taking her off the ventilator & onto CPAP. Please continue to pray for her kidney function & her infection and also strength against this & other potential infections.
Audrey is also on anti-biotics as she has a bit of a temperature & a fast heart beat so the doctors have put her on antibiotics to control this & ward off other potential infections. She is currently on 2mL milk/hour, possibly going up to 3mL. Please continue to pray strength against this (?) & other potential infections. Please continue to pray for Alison's milk supply.

Thank you all for all your prayers & well wishes to date.

Twin Update 3/5/06
Ashlea's milk has been stopped temporarily as her gut has not been coping so she is at high risk of NEC (necritising entero colitis) which is a gut problem where bits of the bowel can die. So now the big thing to pray for is poo. First wee now poo...such a dignified life eh!?. Please also continue to pray for her onoing issues, she is still on ventilator (her settings have gone up) and she still has skin infection. Please pray for strength against these latest complications.

Audrey is still on antibiotics for a possible infection other than that there are no other changes. Please pray for continued growth and development.

Twin update 4/5/06
Ashlea is now weeing well (praise God) and she did some poo overnight & has better bowel sounds today so she is back on 1mL of milk every 4hrs. Ashlea struggled with her breathing overnight (it was put up to 50% oxygen) but it is now back at 25% (normal air is 21%). This will mean it could be up to another week before they try to wean her off the ventilator and it also means she is back on morphine. Her skin infection under her neck is healing & the one under her arm is healed. She is still on antibiotics. Her IV fluids are at almost normal levels which is great. Praise God for small steps so far and pray for continued development & strength against infections.

Audrey continues to power on, she is on 1mL of milk every hour (the doctors play with the amounts of milk depending on how well the gut copes with it). Audrey has almost regained her birth weight which is fantastic. Praise God for her steady progress and pray for continued development and strength against infections.

Twin update 6-7/5/06
Ashlea's blood tests are finally starting to show a little improvement for her kidney function. She has shown up clear for infections so she is off antibiotics. She was a little anaemic so she was given a blood transfusion. She is back on milk (every 2 hourly). They have changed her over to a ventilator where she does more work in the hope to get her onto CPAP soon. Praise God for answers to prayer so far! Please pray that she will be stable enough to be moved onto CPAP soon.

Audrey has also shown up clear for infections so she has been taken off antibiotics. Her milk intakes are increasing which is great. Owing to the CPAP machine she sleeps like a little old man....mouth open & lots of drool...but that still is kinda cute at this age. Praise God for her stable progress so far.

Twin Update 9/5/06
Big news! Ashlea off the ventilator & is "trying out" CPAP . She has been on it for 2hrs (as at 1pm) & is not too happy about it at the moment as it is a big change for her. She's wriggling about, crying (according to mum & dad it is a very quiet cry at the moment) and her blood pressure is up but the nurses aren't too worried about this at the moment. She needs to be able to tolerate CPAP for 24hrs before it becomes a permanent change. Please pray that she will be able to cope with the transition to CPAP. Once she is stable on CPAP her arterial line will be able to be removed & Alison will be able to have a cuddle with her. Ashlea is up to 1.5mL of milk per hour (3mL per hour is considered a full feed for her size!). Her skin irritation on her neck has flared up a bit but this is improving a bit now. Praise God for her progress over the past few days! Please continue to pray for continued growth & strength against potential infections.

Audrey is now on "full" feeds, which for her size is 5mL of milk per hour. The nurses are keeping a close eye on this as she has vomited some of her feeds back up. If she is able to stay on full feeds then her IV nutrition line will be able to come out, which will mean another potential source of infection (the IV line itself) will be removed. Her current weight is 858g (up 34g since Saturday - at this size they like to see an average weight gain of 15g/day). Praise God for her steady improvement & please pray that she will be able to tolerate full feeds.

Twin update 10-11/5/06
Ashlea was struggling a bit on CPAP, her oxygen levels have had to be turned up to 46% on the first day but now it is back down to 26%-30%. Ashlea's milk was stopped yesterday as her tummy was bloating (a sign possible of NEC) but with anti-biotics it seems to be improving & today she is back on 1mL every 2 hours. Please continue to pray for her feeding as the doctors think that it will take a long time to get her feeding right. The doctors think she is at least a week off having a cuddle with Alison as she doesn't like being handled and tends to desaturate (need more oxygen) when she is handled. So no cuddles until she is a bit more stable. Please continue to pray for her feeding and for her stability.

Audrey continues to power on. She is now on full milk feeds, her last IV has gone and from tomorrow she will be starting to get extra calories added to her milk to fatten her up. Praise God for her progress! Today Audrey had her first cuddle with Murray & Alison says she has a very cute picture of this (especially as Audrey had hiccups at the time). Audrey continues to have sessions off CPAP but fluctuates each day with how much she can cope with. Please continue to pray for her development.

Twin update 13/5/06
The skin infection on Ashlea's neck has cleared up but it has now flared up on her bottom. One of the possible causes is the excess fluid that she is still carrying from when her kidneys weren't functioning, another theory is that it could be thrush from the anti-biotics she has been on. Please pray that this new skin irritation will clear up & that Ashlea will slowly but surely rid herself of the excess fluid she is carrying. Please also pray for her stability on CPAP as her blood oxygen levels often drop when she cries or is handled by the nursing staff. Ashlea had her first hour off CPAP today but needed extra oxygen once she was put back on CPAP. Ashlea's arterial line came out on Thursday so now she just has one line for her IV nutrition as well as the feeding tube & CPAP. Alison got a very brief hold of Ashlea while the nurses were weighing her. Her weight is around 800g but we suspect that a good deal of this is from the excess body fluid she has yet to get rid of. Please pray that she will gain weight, decrease fluid retention and stablise on CPAP.

Audrey is now 894g. Last night she had a big 6hrs off CPAP & today she was up to about 2.5 hrs off CPAP. She is going up to the second strength (they start them off on a lower level) of extra calories to be added to her milk. Audrey is now free of all IV lines & only has a feeding tube & CPAP. Praise God for her development and please pray that she will continue to gain weight.

Please also remember Alison, Murray & Emma in your prayers. Murray returns to work this coming week so their routine will be refined yet again.

Twin update 15/05/06
Ashlea is now up to 3ml of milk per hr which for her size is a full feed. If she is able to cope with that then her IV nurtrition line will be able to be removed. Her weight yesterday registered at 716g which shows that some of the excess fluid is starting to go (yay) but there is still a lot more to go. Ashlea had a blood tests today & her results came back good (her creatinine levels are still high but getting lower). Her next hurdle is getting off CPAP. Her one hour off has been a one off as she hasn't been able to tolerate time off CPAP without needing extra oxygen. Her oxygen requirements are also erratic, please pray for her lung development, stability, growth and strength against infection.

As usual Audrey powers on. Her weight is up to 940g (yay) and she is up to stretches of up to 7hrs off CPAP. Please pray for her continued growth and development and also for strength against infection.

Twin Update 16-18/05/2006
Ashlea weighs 696g which we are thinking is starting to be a more realistic estimate of her weight as she is looking less puffy from excess fluid. Murray got a brief hold of her on Tuesday night (i.e. lifting her up in the humidicrib while the nurses changed a blanket) and Alison got a little hold today while she was being weighed & having her bed changed (they change the humidicribs once a week). She seems to be tolerating her 3ml/hr feeds (praise God) and her IV nutrition line has been removed so she now also only has a feeding tube & her CPAP. Ashlea (as will Audrey) will have a 4wk follow up ultrasound of her head which all premie babies have. Please pray that the results will be positive.

Audrey's weight is now 954g (her next weigh in is tomorrow). When she gets to 1kg she will get a Certificate from the nursery! Her feeds have been lifted from 150mL/Kg per day to 180ml/Kg per day. She continues to have long periods off CPAP although the length of time off still varies from day to day. She is a little aneamic but given her good health otherwise the doctor's are not treating this. Her heart is still not 100% back to normal but the doctors aren't too worried about this for the moment. Audrey too is having her 4wk follow up ultrasound of her head. Please also pray that the results will be positive.

Please also remember Alison & Murray in your prayers as their new schedule is a little exhausting with Alison alternating visiting during the day & visiting at night and Murray visiting at night on the other nights.

Twin update 18-20/5/06
After having only 1hr off CPAP to date, Ashlea surprised everyone by having 5hrs off on Thursday night & since then has had more periods off CPAP. Alison has had a short cuddle with Ashlea & she continues to stabilise and have periods off CPAP she will be able to have longer cuddles. Ashlea has just started having extra calories added to her milk and if all goes well will go up to the next level of calories added (they use 2 strengths). Praise God that her lungs are working well and please pray for continued growth and good health.

Audrey has joined the 1kg club! At her last weigh in she was 1.01kg & now sports a little certificate on her crib. Praise God for her continued growth & please pray for strength against infection.

Procedures coming up to pray about - the girls' 4wk follow up head scans on Monday & coming up in the next few weeks they will also have eye tests.

Twin update 21/5/06-23/5/06

Ashlea is spending 4-5hrs of CPAP here and there which is fantastic. Alison had a 1hr skin to skin cuddle with Ashlea on Sunday so she is now alternating cuddles/days with each of the girls. Ashlea lost 20g but this could possibly be due to being off CPAP more so they are not too worried at the moment (current weight is 690g). Ashlea's brain ultrasound was good & showed no sign of any bleeding. Please pray for her to gain weight & grow.

Audrey has been off CPAP for 32hrs straight! If she is able to tolerate this she may be able to stay off CPAP which will mean she will be ready to move from the NICU to the High Dependency unit. The NICU is very busy at the moment (squeezing 9 babies into an 8 baby space) so Alison is hoping that they will be able to hold off moving Audrey across to high dependency until Ashlea can move across too - usually they like to keep twins together, please pray that this might be the case for them. Audrey had a blood transfusion today and her head ultrasound like Ashlea's showed no sign of bleeding praise God! Audrey's weight was 1.03kg on Sunday.

Procedures coming up to pray for: eye tests for both girls next Monday

Twin update 24-26/5/06
Ashlea is up to 694g and is on full milk feeds. She continues to have breaks (of up to 8hrs) off CPAP but this fluctuates on a daily basis (she tends to do better on days she has cuddles with Alison). At the moment she has a raised lump on her left forearm which is an infection of some sort, possibly staff, so she has been started on IV antibiotics today. Please pray that she will continue to to put on weight & that this infection will clear up quickly.

Audrey has graduated from the NICU to the High dependency unit! She has been off CPAP since Monday and tolerating full milk feeds. Her weight is now 1124g. Praise God for her progress.

My friend who is an ambulance office saw the girls while on a job transporting a 36wk old baby to RPA...when she spoke to one of the doctors about the girls the doctor described them as "miracle babies"...a testimony to the power of prayer!

Twin update 27-29/5/06
Thank you to everyone for your faithful prayers for Ashlea & Audrey. Today (29/5/06) the twins are 5wks, 3 days (adjusted age 33wks gestation...7wks away from their original due date).

The infection on Ashlea's arm seems to be a bit better, nothing grew from culture they took but they are continuing with anti-biotics for the moment. Ashlea is having up to 9hrs off CPAP at a time & is finally starting to gain weight (praise God + please pray for more of the same!). Ashlea had her eye test today & there was no sign of retinopothy of prematurity (ROP) which is great but there was some haziness on one of her corneas which the doctors are hoping will clear up. She will have a repeat test next Tuesday to see if there is any improvement on the haziness. Please pray that this will clear up. Ashlea will have a follow up eye test in 3wks for ROP as it is a condition that still may develop. Please pray that ROP won't develop & also that other infections won't develop either.

Audrey's eye test was good. There was no sign on retinopothy of prematurity (ROP) and both her corneas were clear praise God. She will have a follow up eye test in 3wks to test for ROP as it is a condition that still may develop. Please pray that ROP won't develop. Audrey is up to feeds every 2 hrs of 17mL (wow that sounds like so much compared to the 1mL every 4hrs she started on!) and continues to go well in the high dependency unit. She has had a couple of apneas when she has been too hot or just had a feed but with poking/prodding she has come out of these. Please pray that she will not have too many of these. The black spot on Audrey's toe (due to an earlier circulation problem) has turned out to be a scab which has fallen off. The skin underneath looks fully healed which is great, perhaps it might be a little mishapen when it grows, we'll find out later but this is a not a major concern. Praise God that she is doing so well and please continue to pray for strength against other possible complications such as infections etc.

Twin update 30/5/06 - Urgent prayer for Ashlea please
Please pray for Ashlea. She had a bad apnoea today and had a couple of vomits. Her gut is now swollen & distended and is at risk of rupturing and she is at high risk for NEC (necritising enterocolitis), her blood gases are also not good. If Ashlea gets NEC she will not recover from it as she is too small for surgery. The doctors have put her back on a ventilator to assist with her breathing, have increased antibiotics to fight against possible infections and her feeds have been stopped. Alison & Murray are on their way to the hospital to be with her. Please pray for Ashlea's health and for Alison & Murray as they deal with this new setback.

Twin update 31/5/06
Ashlea is stable at the moment. Since going back on the ventilator her blood gases have improved but her gut is still swollen so we have to wait and see what will happen. Please pray for Ashlea's health and for her the doctors, that they will have wisdom to do what is best if for her. Please also pray for Alison and Murray as it is quite a stressful time for them, particularly for Alison as she is quite exhausted at the moment and is trying to get into the hospital more often while Ashlea is so sick.

Audrey is going well, she was weighed today and her weight is 1.274kg. Praise God for her progress.

Twin update 1/6/06
Ashlea's gut was worse today, an x-ray couldn't tell if it was a blockage so they called in a surgeon to have a look at her. When the surgeon was examining her she did a poo which is good! There is no sign of active infection so they are not sure what is causing the blockage so we are hoping lots more poo will follow so her gut will return to normal. Ashlea had 2 blood transfusions today and is still on the ventilator with a lot of support (fluctuating between 25-70% oxygen) and if she gets past this set back will need to be weaned off the ventilator (again). Please continue to pray for her health and praise God for the poo! (& please pray for more of it) ;-)

Audrey is powering on as usual praise God!

Twin update 2-4/6/06
Ashlea was extubated (i.e.her breathing tube was removed) & she has been on CPAP since midday Saturday. She has been started back on small amounts of milk, 1mL every 2 hours. Praise God for her improvement since Tuesday & please continue to pray for her health (especially her breathing & feeding).

Audrey is going well, she now weighs 1342g and is up to 20mL every 2 hours. Soon they will be able to start trying feeding without the feeding tube. Praise God for her progress.

Twin update 5-6/06/06
Ashlea is still on CPAP but she is not having any breaks. She is up to 4mL/hour so hopefully she will be up to full feeds in the coming days for her TPN line (IV nutrition line) to be removed. Her eye has been rechecked (a follow up of last week’s appointment), there is no change in the haziness since last week so please pray for improvement of this. Please also pray that she will get bigger & stronger so that she can progress.

Audrey is 1362g or 1372g (Al wasn’t sure which one), she had a blood test today & may have a blood test soon. She will be assessed by the physio this week (to check for signs of favouring one side etc). Praise God for her continued growth and development.

Twin update 7-8/6/06
Tomorrow the twins will be 7wks old (5 weeks 3 days off their due date)

Ashlea is back on full milk feeds but she has not had extra calories added back to her milk yet (she seems to be coping with milk okay). Her TPN (IV nutrition) line has been removed which is great. As mentioned last update her eye haziness hasn't improved but it hasn't gotten worse, this will be checked again next Wednesday. Her kidney function seems to have plateaued (her creatinine levels are 195 at the moment & normal function is under 50) please continue to pray for this as it is an ongoing issue for her. She had a skin to skin cuddle with Alison & without CPAP today. The amount of oxygen she needs through the CPAP has been less and less which is great. Praise God for her progress & please continue to pray that she will fatten up!

Audrey is about 1.4kg and has feeds of 21mL every 2 hrs. Her oxygen saturation probe has been removed so the only things that are being monitored are her heart rate & her breathing rate. Praise God.

Twin update 9-10/5/06
Murray had his first skin to skin cuddle with Ashlea today. Ashlea is now 886g and is having regular breaks from CPAP although it is now structured by having 8hrs off CPAP followed by 4hrs on CPAP. She has had no significant apneas which is fantastic and is about to have her milk feeds increased. The ongoing issues are on her chart are: respiratory distress, renal impairment and a hazy cornea. Please pray for these ongoing issues and praise God for her progress so far.

Audrey continues to power on. She is now 1468g, 40cm long and growing. She is now up to 22mL milk/hour. Praise God for her continued progress.

Next week Ashlea & Audrey will have their eyes retested for signs of ROP (retinopothy of prematurity). Please pray that the girls will not develop ROP as its treatment requires laser treatment and being put on a ventilator for the procedure.

Twin update 11-15/6/06
Tomorrow (16/6/06) the girls will be 8wks old, 4.5 weeks off their due date.

Ashlea is now 886g and now that she has reached 35wks gestation she has had her caffeine ceased (premie babies have caffeine on a regular basis to help the babies remember to breathe), please pray that she won't have any apneas as a result. Her eye test came back better this week with the haziness appearing to improve - praise God. She is also clear for ROP (retinopothy of prematurity), please continue to pray for this as ROP can still develop. Ashlea is being started on extra calories (half strength), please pray that she will be able to tolerate this as she really needs fattening up. She is having about 16-20hrs off CPAP every day (at a maximum of 12-15hrs at a time to avoid exhausting her), please continue to pray for her development.

Audrey now weighs over 1500g! Her physio assessment went well and her eye tests were also clear of ROP. She has also had her caffeine ceased and could potentially be home at 1800g assuming she has no apneas, maintains her temperature and is on all sucking feeds. Audrey is still in a humidified crib & is only just starting to try non-feeding tube feeds (aka breast feeding) but it could be as little as 2-3 weeks and she could be at home! Praise God for her progress & please pray for the logistics ahead when Alison & Murray will have one newborn at home & the other at the hospital.

Twin update to 16-20/6/06
The girls will be 9wks old on Friday, which will be 3.5wks off their due date.
Alison had a double cuddle with the girls.

Ashlea's main concern is her eye. Her eye is still cloudy at the centre which if it does not clear up she will have vision loss in that eye. There is a possibility of having a corneal graft a possibility in 1-2 yr if it doesn't improve although she will need to have light coming through the eye for her sight to develop. They will recheck it on Monday. Her weight is now 912g and she is on full calories so her other big prayer need is to gain lots of weight. They are trialling her off CPAP, so far she has been off CPAP for 40hrs, if she does well they will keep her off CPAP for good, if not they will put her back on. Please continue to pray for her eye, her weight and her breathing.

Audrey is now 1750g and they are trying to establish feeds with her which is a little difficult since she seems to sleep during the day and stay awake at night! Please pray that she will settle into a feeding routine and preferably a night sleep, daytime awake cycle.

FYI - the girls are 2 months old today (still not at their due date of 17th July 2006!)

Twin update 22-24/06/06
Ashlea is over 1kg! On Friday she weighed in at 1.014kg. She is also completely off CPAP. Her creatinine levels have also been improving (i.e. her kidney function is also getting better). Praise God for her weight gain, her improved breathing and improved kidney function. Please pray now as they try establish non-tube feeding pattern. She will have the cloudiness in her eye reassessed on Monday, please pray for this also.

Audrey is now off all monitoring! The last of her monitors, heart rate & respiratory monitors were removed. She now weighs 1.85kg and now just needs to establish proper feeding routines (without aid of a feeding tube) before she can come home. Please pray that she will start to get into regular feeding patterns.

Here is the first photo of the whole family all together...


Twin update 25-28/6/06
As of Monday night/Tuesday morning both girls are now in the Special Care Unit (the next level of care down from High Dependency). Praise God for the many answers to prayer we've had so far & the girls' steady progress.

Ashlea is now 1.082kg. At the moment her biggest concern is her eyes which have shown no sign of improvement. Her right eye is still immature as the hyaloid artery has not yet regressed (something that usually happens around 32wks) and there is a small amount of retinopothy on the outer third of her eye, however the doctor thinks this should improve of its own accord. Her left eye is still hazy so the doctors are not able to assess whether she has any retinopothy in that eye. Please continues to pray for her sight & her weight. Otherwise she is quite stable (praise God!) and she had her 2 month old immunisations yesterday (NB Audrey had hers last week).

Audrey is now 1.99kg. Audrey had her first real bath today & she loved it! Alison thinks she will love the life of luxury as she loved being bathed & pampered, especially the hair washing & baby massage bit! Attached are some photos of Audrey having her bath. Audrey needs to establish feeds in order to go home, please pray for this as she is a bit lazy & laid back and so doesn't get much milk!

Mini Twin Update 30/6/06 Quick prayer request
Ashlea has had another massive apnoea & has been moved back to intensive care & is back on a ventilator. Please pray for her breathing & her oxygen levels etc to improve.

Twin update 30/06/06 – An update on Ashlea
Thank you for's the latest on Ashlea's health...
She has Metabolic Acidosis, which means her system is too acidic. The doctors think it is possibly caused by a problem with her kidneys losing alkalinity over time. They are treating her with BiCarb to try and fix the problem. Her creatinine levels are also up which is also a sign of diminished kidney function. She is also anemic and so will have another blood transfusion overnight. At the moment Ashlea is on a ventilator but is not being sedated so she is still quite alert and & not seeming too impressed about the whole intubation thing. It looks like the apnoea may be caused by a combination of the acidosis/kidney, anemia and also that she was getting too cold when she was having a hearing test (as premie babies can't regulate their body temperature). Please pray that the bicarb treatment will improve her condition and that the doctors will have wisdom in deciding her treatments.
Please also remember Alison, Murray, Emma & Audrey in your prayers.

Twin update 2/7/06
Please pray for Ashlea as she is doing worse today, her blood gases are worse, her electrolytes are all over the place and she is not breathing above the rate of the ventilator (which she was doing yesterday). Please pray for her and for Alison & Murray as this latest set back is quite stressful for them.

Twin Update 3/7/06
Ashlea is still battling her acidosis. Her doctors are pretty sure that the problem lies with her kidneys which are not producing bicarbonate. It is now pretty certain that her kidneys will fail at some stage in her life, a kidney specialist will be coming to assess her on Friday to try and gauge when that time will be. If it is long term then they will continue aggressively treating her condition, if it is short term then her treatment plan will change to that of palliative care. Please pray that her condition will stay stable for her assessment on Friday, as at the moment she is still having apnoeas (where breathing rate drops) and bradycardias (where the heart rate drops). Please pray that the doctors will have wisdom as to how to treat her best. Please also pray for Alison & Murray at this time also.

Audrey is doing well, she is maintaining her own body temperature and just needs to be able to suck all her feeds (for a 48hr period) in order to be released. At the moment she has a good go at it but usually doesn't get much milk. Please pray that she will improve in that area.

Twin update 7/7/06
Today the girls are 11 wks old (their due date is still a week and a half away, 17/7/06)

There is good and bad news. The kidney specialist seems to think that Ashlea will need a new kidney in 2-4 years (6-8 yrs max. at best if she is well cared for). This means that she will require ongoing treatment including sodium, bicarb, EPO (something that helps create more blood cells, a drug often used as a performance enhancing drug!) and extra extra calories (as these types of babies have no appetite & don't grow) and will probably have a feeding tube for quite some time to assist with feeding. Ashlea had a brain ultrasound today & on Monday Alison & Murray will be meeting with a doctor who will discuss her best possible outcomes (mental, physical, intellectual etc).

Short term (on a day to day basis) she is doing better, she was diagnosed with a serious infection which has meant she is being cared for in isolation - her crib has yellow tape line around it & everything that goes inside the tape area gets labelled as infected/contaminated & is not allowed out. Fortunately the infection seems to be responding to the antibiotic treatment and she is back on full milk feeds. She is more active today & has had improved blood gases so they may try weaning her off the ventilator soon.

Audrey has had a good breast feed today and is getting closer to having all sucking feeds (i.e. and going home). She is now 2.26kg and is doing well. Praise God for her progress.

Please continue to pray for Alison, Murray & Emma.

Twin update 10/7/06
Ashlea, aka “the comeback queen” (to quote her mum), is rolling about in her crib as if nothing happened last week! She's off the ventilator and off CPAP (ie breathing by herself), is on full feeds and is being upgraded to extra (extra) calories as per her kidney specialist's instructions and today weighs in at 1.235kg. Now that the doctors are aware of what her kidney needs are they are keeping a close eye on her & don't expect any more major apneas. Praise God for his healing.

Today Alison & Murray met with the doctor about developmental outcomes of other babies in similar situations. The development outcomes of the 10 babies born in the unit at 27wks with severe growth restriction in the last 20years:
1 normal baby
1 intellectually normal with cerebral palsy
1 normal intelligence but was uncoordinated and had poor motor skills
6 babies with mild – moderate developmental delay/intellectual impairment
1 baby with major developmental delay/intellectual impairment

At this stage we don't know which case Ashlea falls into, we will have to wait and see (and pray). In addition to the above she (and Audrey) have a 20% chance of cerebral palsy that comes with twin to twin transfusion syndrome. Please pray for her ongoing health and development.

Audrey is now up to 2.37kg and is having 4 sucking feeds per day. She needs to get up to 6 sucking feeds (either bottle or breast feeding) and maintain his for 48 hours in order to go home. This may be as early as this weekend or next week! Her eyes and ears were tested & all is ok. Praise God for her progress and please pray for the transition into home life (especially for Emma). 

Twin update 13/07/2006
Tomorrow the girls will be 12wks old (3 days off their due date).

Ashlea is out of intensive care and back in special care. She is up to 1.3kg and having double extra calories and seems to be tolerating it. She is having blood tests & urine samples taken quite frequently to check her bi-carb and sodium levels etc. She had a physio assessment today and appears to be favouring one side over the other at the moment.

Audrey's big news is that she will be coming home on Monday (on her original due date). She is now 2.4kg and also had a physio assessment today & did very well.

Twin update 19/07/2006
Ashlea is 1.42kg today. She had an eye test on Monday, the situation is unchanged from her last test. The haziness/cloudiness is still there on one eye & the doctors have serious concerns about the amount of vision she will have in that eye. There is still retinopothy in the other eye which is less concerning as about 80% of these cases correct themselves. Her next eye assessment is next Monday. Please pray for her vision. Ashlea is on bicarb, calcium & extra calories to keep everything in check for her kidneys and is also having blood tests twice a week to monitor this. She had a physio assessment today, which showed her to be immature for age a favouring of her right side. They will move her crib so that everything will happen on the left hand side to encourage movement that way. Her next physio assessment is next Tuesday. Please pray that she will continue to grow & develop, particularly to fatten up & stay healthy kidney wise.

Audrey is home, praise God! According to Alison she is still a bit of a night owl but otherwise doing well, she even squeaks cutely (well according to what I hear of her on the other end of the phone!). Please continue to pray for her feeding & settling into a routine. Her next follow up is on 31/8/06. Emma has been quite good with Audrey's arrival & has enjoyed having a cuddle with her and is very interested in her & has been heard to say "I like baby".

Twin update 26/07/2006

Ashlea is now 1570g. Her eye test went well, the retinopothy in her right eye is regressing and her left eye still hazy. Her next eye assessment won't be for another 2 months. Yesterday she had another apnea because she is aneamic so she is back on antibiotics (48hrs) and will be given EPO (a red blood cell creating hormone) instead of a blood transfusion to encourage her body to create more red blood cells. EPO takes a few weeks to take effect so please pray that she won't have any apneas in the next week.

On the weekend Audrey's weight was 2.5kg. Audrey is doing well at home, she has been feeding round the clock although she still prefers to be up during the night! Please pray that she might sleep better at night so Alison can get more sleep.

Twin update 01/08/06

On Sunday 30/7/06 the girls were 100 days old (adjusted age 13 days old)

Ashlea is still a bit anaemic, she had another grade 1 apnea last Friday but has since responded ok (NB Grade 2 apneas are worse than Grade 1 apneas). Please continue to pray for her kidney health as the doctors & nurses try to keep everything in balance. From tomorrow they will trial her in an open cot to see if  she can maintain her body temperature. After that they will try to establish sucking feeds for her, which currently she doesn't have much stamina for.

Audrey is being a good baby...she is now 2.85kg.

Twin update 5/08/2006
Ashlea had a blood transfusion on Thursday & looks lots pinker now. Please pray that the EPO hormones that help the body to produce more red blood cells will start to work (she was given these last week). Please also pray for the ongoing stability of her kidneys as each blood tests usually results in some tweaking of different levels. She is in an open cot now & seems to be going ok at maintaining her body temperature as long as she is kept rugged up.

Audrey is doing well. Praise God

A pic from a few days ago...


Twin update 10/08/2006

Ashlea had a proper bath this past week and shall we say that she was not exactly a fan of the experience! Ashlea is now up to 4 sucking feeds per day, inching closer to the coming home criteria of needing to have all sucking feeds (6-8), gaining weight & maintaining body temperature. Her monitors have been taken away (a little bit scary) and now the doctors think that she might be 10-14 days away from coming home (yay! praise God!). When that time comes Alison & Murray will have to have a big meeting with the hospital staff to go through all the logistics of how to care for her & keep her well, such as managing her daily medication & various tests, possibly finding a new doctor & paediatrician closer to home, when to start seeing the kidney specialist etc. Please pray for Alison & Murray as they prepare for this time as it will be a big change for them.

Audrey is going well, she is now 3.02kg & 51cm long and is sleeping & eating well. To quote her mum "She really is a very good baby".

Twin update 15/08/06
16wks 4 days actual age (corrected age 4wks 1 day)
Both girls have given mum half smiles in the last few days!

Ashlea has passed hearing test, praise God. She is also now 2kg exactly! Her sucking feeds are all over the place so please pray that she will be able to improve her feeding. She has been a bit a bit warm the last few days but the doctors are not to concerned about this. Please pray for her continued growth and development.

Audrey is doing very well, she is now 3.15kg. Praise God for her growth & please pray for her continued development.

Twin update 21/08/06
Age = 4months (122 days)
Adjusted age = 5wks (35 days)

The doctors have discovered that Ashlea has a hernia which will need to be operated on. A surgeon on call from either Westmead children's hospital or Randwick children's hospital will come to assess her today so that surgery can proceed at their hospital. For ease of transportation, we are hoping & praying that the surgeon is based at Westmead rather than Randwick. Please pray for this new procedure as it will involve being intubated/ventilated again & being under a general anesthetic. Please pray for Alison & Murray during this time also. Please also pray for Ashlea's general level of stimulation & development as she is not getting as much interaction as she would if she was at home.

Audrey continues to power on, she has started to smile more regularly & is looking very cute.

Mini twin update 28/08/06
The surgeon came today to assess Ashlea. The surgeon was from Westmead hospital which has been an answer to prayer. At this stage the plan is for her to be transferred to Westmead hospital on Sunday for surgery on Monday 28th August 2006 and back to RPA on Tuesday.

Twin update 24/8/06
Ashlea is now 2.2kg. Please pray for her upcoming surgery that it will go smooth and that there will be no complications and that she will have a quick recovery. Please pray that there will be no issues resulting from the anesthetic and being ventilated. Once she has recovered her next hurdle is for her to improve her feeding so that she can come home (she needs to have all sucking feeds for 48hrs).

Audrey is now 3.3kg and is being very cute and smiling lots.

Mini update 25/08/2006
Another quick twin update regarding Ashlea
A staff member at RPA has been diagnosed with whooping cough. All the prems who have been there in the last 5 weeks are getting a week long course of anti-biotics. Please pray that Ashlea does not get whooping cough! She has had 1 immunisation against it and would most likely already have shown symptoms if she were going to get it. It shouldn't effect her surgery plans.

Twin update 28/08/2006
Ashlea is 2.37kg and shows no signs of whooping cough, praise God! She continues to be on antibiotics just in case. Ashlea's surgery today went well, she had hernias on both sides which were sewn up. She seems to have recovered well and was extubated straight away, breathing on her own (only requiring a little bit of oxygen). Tomorrow morning she will see the kidney specialist & will have a kidney ultrasound while she still is at Westmead and in the afternoon she will be transferred back to RPA. Please pray for her continued recovery and her feeding so that she can come home. Please also pray that they will be able to get a good discharge plan together to ensure her continued health & development.

Audrey is now 3.51kg and 51.5cm long. Audrey is also on antibiotics to avoid any whooping cough infection, otherwise she is doing very well.

Twin update 30/08/2006

Ashlea is coming home on Friday (01/09/2006)! She was transferred back to RPA on Tuesday after her successful hernia operation on Monday. Before they left Westmead they also saw the kidney specialist and things have improved since she last saw Ashlea, which means hopefully a transplant is further away than first thought (may be as far away as 5-10yrs). Once discharged from RPA she will have weekly appointments with the specialist at Westmead's renal treatment centre where she will also see a dietitian (so that she gains weight). Her other (regular) developmental follow ups will be done by RPA.

Thank-you to everyone who has been praying hard for Ashlea and Audrey over the past months, please continue to pray for them as they continue to grow and develop.

Twin update 8/9/06 – Ashlea’s homecoming - take 2!
Yes you read the email subject right...since coming home last Saturday, Ashlea's feeding was so erratic that she went back into the hospital on Monday so they could monitor her feeding and trial her on a drug for reflux (Zantac). On Tuesday the renal clinic gave Alison & Murray a recipe to mix up all her medications in her milk which greatly simplifies her feeding schedule (each feed previously involved measuring up about 4 or 5 different medications & trying to coax Ashlea into taking each of them). Today Alison is getting feeding tube lessons so that if Ashlea fusses too much with a bottle her milk will be given to her via a feeding tube (which will stay in until her feeding improves). So homecoming mark 2 should be in the next couple of days. Next week they also go to the feeding clinic at Westmead. Please continue to pray for Ashlea's feeding.

Audrey continues to do well. Twins Day 126

Twin update 11/09/2006
Just a quick note to let you all know Ashlea is home again - she came home this afternoon.

Twin update 13/09/06
Corrected age 8wks

Ashlea is now 2.67kg and 45cm long. Please pray for her feeding as she takes 30mL (of an 80mL feed) before either fussing or conking out so she is very dependent on her feeding tube at the moment. Please pray that she might improve enough to have the feeding tube removed. Please also pray for her overall development as she is behind where an 8wk old baby would be. Please also pray for Alison as she ferries Ashlea (and often Audrey & Emma as well) to various appointments. Ashlea has her 2 month (corrected age) follow up appointment tomorrow, a renal appointment next Monday, an eye follow-up the following Monday, a paediatrician appointment the Wednesday after etc etc.....

Audrey is now 3.94kg and 53cm long. She also has her 2 month follow up appointment tomorrow. Developmentally she is on par with a normal 8wk old, although somewhat smaller than the average 8wk old. Praise God for her good health and growth.

Please also pray for Alison & Murray as having 2 babies and a toddler is a lot more work than 1 baby & a toddler.

Twin update 26/09/06
Adjusted age: 10wks + 1 day
Non adjusted age: 22wks, 4 days

RPA goes to air....
We have a TV airing date! RPA starts on channel 9 on Thursday 5/10/06 and Alison & the girls' story will appear from 12/10/06 for 4 episodes. Be sure to keep an eye out for them!

Ashlea seems to be settling in at home feeding with both a bottle and a feeding tube, she does however like to pull out the tube which is a bit of a worry! Please pray that the tube will stay in as Alison has already had to replace it twice!

Ashlea had an eye follow up appointment today but in the absence of the professor they didn't get much information and have to wait to see him on the 12th October. Please continue to pray for the development of her eyes as there seems to be more cause for concern with both eyes but particularly the left eye.

Ashlea (and Audrey) will start seeing a paediatrician soon who will oversee her whole progress and receive the reports from all her appointments, which will be quite a task! In God's great planning the paediatrician they are booked in to see turns out to be a Christian friend that I used to go to church with several years back (I used to house/dog sit for her & her husband!). Please pray for Ashlea's continued development and treatment.

Audrey is now over 4kg and is very smiley and cute and is doing all the newborn things. She has discovered her fist and is very good at getting most of it in her mouth!


1 comment:

n0thingbuteverything said...

What an incredible journey you went on when your girls were born. It's so hard to imagine them so tiny and vulnerable now they are so big and strong looking ;-).

Loving your blog and looking forward to reading more!