Below is a history of our Updates on Ezekiel since his birth. These updates were posted on facebook therefore if you are on facebook you may not wish to re-read them. From now on any new updates will be posted on our homepage as an individual post.
Friday 7 May 2010, 9:42pm
- Oh such simple things are so pleasing at times. After 14 months of having to stay up (or sometimes get back up) to give Ezekiel his midnight medications we are now allowed to change the time to around 10pm. I am so going to enjoy that extra couple of hours sleep! Whoop whoop! It will probably take a few days to adjust. The Dr's were so happy with E. He has put on 700gms in a month. That is a lot for him as he can only have small amounts of feeds. He is now 9.9kgs. Once again Dr Henning said it is unbelievable how well he is doing compared to what they thought 12 months ago. Thank you God. xx
Thursday 22 April 2010, 1:59pm
Guess what! Ezekiel finally said "Mum", Ezekiel finally said "Mum", Ezekiel finally said "Mum". I have been waiting soooo long for him to finally say "Mum". Yay.
Monday 12 April 2010, 9:38pm
It seems that Ezekiel is now a full time crawler! Now I've just got to stop him from licking the floor and everything will be hunky dory.
Sunday 4 April 2010, 11:21pm
We are off to the big smoke (Adelaide) in the morning......mixed feelings of excitement and nervousness. Can't wait to see family but not exactly looking forward to all Specialist appointments. Ezekiel should be ok, just not sure what will happen with mine....Trusting in God.
Wednesday 24 March 2010, 1:30pm
Yay, we have made it to Mainly Music two weeks in a row. That's a record! Ezekiel seems to be getting stronger and more able to go out but we still have to be careful though. Right now I am going to have a nanna nap, feeling a bit run down so I'm not going to push myself so hard.
Wednesday 17 March 2010, 2:47pm
Ezekiel had to have another feeding tube put in, which was followed by at least 45 minutes pure screaming. He hasn't been feeding properly so we need to top him up after each feed so that he doesn't get dehydrated etc. On another note, coincidentally it is exactly a year since Ezekiel left hospital to come home the first time. What a wonderful but hard year it has been.
Monday 8 March 2010, 6:35pm
- Oh my goodness, oh my goodness Zeekie-boo's 1st tooth is starting to show! We can just see a glimpse of white and feel it. Poor boy, but I'm so excited. This week, if he went to full term, he would have been 1 on Thursday! I hope he has it by then. What a milestone.
Saturday 20 February 2010, 1:55pm
Ezekiel has got a little bit of carpet burn on the back of his head from his backward crawling. Maybe he will think twice about it next time....
Wednesday 3 February 2010, 5:21pm
A barium meal, chest x-rays, overnight ward oximetry, renal appointment, pulmonary appointment, 4 injections, blood tests and a nuclear medicine scan later we have finally left the hospital. What a fun 24 hours for Ezekiel and most of that on his 1st birthday! Despite all this our little fighter is still marching on and as happy as ever.
Monday 1 February 2010, 10:06am
At Keith, on our way to Adelaide for specialist appointments. Only a few hours until we get to see my brother, sister and the kiddies. Yay! One more sleep and then my baby is 1 years old.
Sunday 31 January 2010, 4:24pm
I think Ezekiel is going to be a bum shuffler and not a crawler. He turns a full circle on his bum so quickly. Better watch out he might end up tying himself up with his oxygen cord. Also it looks like he could be getting his first tooth! Although probably not before his 1st birthday. Two nights to go.......
Saturday 30 January 2010, 10;01pm
We had an awesome party for Ezekiel and I felt a lot better too. Thanks everyone for your well wishes and for those who came. Now we have 2 more sleeps until we go to Adelaide for the usual appointments. Can't wait to see my brother and his family. Xxxxxxx
Sunday 24 January 2010, 2:34pm
8 days, 7 hours, 25 mins and 40 secs until my baby turns 1! What a milestone. Can't wait until his party. Xx
Thursday 14 January 2010, 11:43am
Home again from Adelaide. Feeling blah. The Dr's are reasonably happy with E's progress, still waiting on some results. We will be going back monthly from now on.
Monday 11 January 2010, 9:58pm
Off to Adelaide in the morning for Ezekiel's Renal checkup's on Wednesday and also to get my results from my bone marrow biopsy. Praying for good news once again.....feeling a bit nervous though.
Thursday 31 December 2009, 9:07pm
2009 - what a year! Unbelievable the miracle of Ezekiel, huge stretching & growth, new friendships, new life, the loss of a dear friend & our grandpa but most importantly God has been there through it all. Praying that 2010 will be a year of new hope, new beginnings and new dreams for everyone. Xx
Thursday 24 December 2009, 10:44pm
Merry Christmas everyone! We pray that you all have a safe, enjoyable and memorable day with your loved ones, with many more to come! All the best for 2010. (So excited that Ezekiel is home and well with us for Christmas! Thank you God). xxxx
Saturday 12 December 2009, 7:38pm
Home, sweet home. Ezekiel is home from hospital. Sorry for the late notice. We got home at lunchtime but have been flat out organising things..... also had to go back to the Paediatric Department this afternoon to get his nasogastric tube replaced! Anyway we are home and that's so awesome. Praise the Lord.
Thursday 10 December 2009, 8:27pm
Our 7th night away from home and my comfy bed! Come on Ezekiel you need to get better so we can go home pretty please.
Tuesday 8 December 2009, 7:00pm
All I want for Christmas is my two......nah, all I want for Christmas is a healthy boy (and husband). Still waiting for results on Ezekiel.......
Monday 7 December 2009, 7:50pm
Poor little E.Z is sicker. They can't understand why he has gone downhill again so quickly and have started to run more tests again. They are also talking about doing some chest physio tomorrow to help break up the secretions. I just pray that he doesn't get worse tonight otherwise he will get sent to Adelaide again.
Friday 4 December 2009, 8:58pm
Ezekiel is back in hospital again with respiratory problems :-(
Friday 27 November 2009, 10:50am
Can you believe this? Apparently my boy has polycystic ovarian syndrome.....that's a new one on me. I would have thought after 9 months of changing nappies that I would know that Ezekiel is a boy and doesn't have ovaries. Why do Dr's find the need to try to re-diagnose his condition every time we see someone. I have all the paperwork and notes, he has ARPKD. Next they’ll be operating and looking for ovaries!
Thursday 19 November 2009, 8:25pm
All the Dr's were happy with Ezekiel's progress. Finally all good news this time. If he keeps going as he is, he won't need to have his kidney/s removed for a while or at best only when he has a transplant. We don't have to go back to Adelaide now until the beginning of January. Although my Dr wants me to go back mid December but hopefully my results will be good enough to have my appointment delayed so that it’s in line with E’s. Thanks for your prayers.
Monday 9 November 2009, 7:30pm
Ezekiel has just been hospitalised again! Went downhill really quickly.....looking like another viral chest infection/bronchiolitis. He loves to keep me on my toes. xx
Thursday 5 November 2009, 7:59pm
Ezekiel is learning to sit finally. See video 'learning to sit'.... Pretty good for a baby that was never meant to live and at best be in hospital for the first 2 years of his life. Not to mention the Dr's expected that he wouldn't be able to move his arms and legs and would need physio for the first year to get them moving! God is good.
Monday 2 November 2009, 9:34pm
- Ezekiel is now 9 months old as of today! (- 5 weeks)....he also rolled right over onto his stomach for the 1st time on Friday and sits up for a fair while before he starts to topple over! He is sooo cute.
Sunday 27 September 2009, 7:57pm
Just to let you all our family and friends know; Ezekiel will be going back to Adelaide on 13th October for further reviews as his last tests weren't very positive. We were excited on our last trip as it seemed to us that Ezekiel's progress was good. He was putting on weight finally and able to take more fluids without any problems but when the results came back it was hard to be excited.
Basically the ultrasound reports showed that his kidneys are grossly enlarged, much larger than normal for this disease, which is stopping his lungs from growing bigger and developing and also pushing down on his bladder and bowel. The first concern is that he is not getting enough oxygen whilst sleeping so he will be undergoing oximetry tests etc to see if he requires oxygen at home. His lungs were never fully developed which already makes it harder for him to breathe and with the kidneys pushing up, when he sits, he often wheezes.
Blood tests also showed that his phosphate levels were too high and he has now been put onto a special formula for patients with kidney failure. Since starting the formula three weeks ago the levels have started to come back within the normal range, praise God. We were also blessed that with the severity of his condition he was issued a healthcare card. This now means that we can afford this formula which is prescription only. Instead of the total cost being $1065.00 for 16 cans (1 can lasts 4-5 days) it was reduced to the concession price. Honestly we don't know how anyone could afford that.
The next concern is that the ultrasound also showed that his liver is now being affected by the polycystic kidney disease. This is common for the disease but they didn't expect this to happen for a couple of years. They will discuss this further when we return to Adelaide.
Lastly the Renal Specialist has indicated that in regards to his kidneys the options are not looking good. He doesn't want to go into all the details until we go back but has basically indicated that they may need to remove a kidney/kidneys due to the size. Amazingly they are still functioning, despite the odds, however the size is now a major concern. Removal may lead to dialysis and an earlier than anticipated kidney transplant. This is not usually done on an infant and usually only once a child is at least 2 years old. Originally they said he wouldn't survive, and then they said at best that he would be in hospital for first 2 years of his life waiting for transplant etc. But God has had his hand on him right from the start and we are believing that Ezekiel is a fighter.
Thank you once again for all your support and prayers. We will update you once we know more.
Venita & Allan
Monday 3 August 2009, 10:52pm
It's official! Ezekiel has finally hit the 6kg mark, is now 6 months old and he is also 63cm long! He also had his 6 month immunisations today. Can't wait to see what the Specialists in Adelaide have to say this time.......
Friday 31 July 2009, 2:22am
We can't wait for Ezekiel to hit the 6kg mark. It seems to be taking forever! Today he weighed in at 5.9 kilos - only 100 gms to go! He will officially be 6 months old on Sunday so maybe he will be 6kgs by then. (wishful thinking) Well hopefully by the time we go back to Adelaide for his checkups he might be 6kg.
Thursday 23 July 2009, 1:03pm
Ezekiel has now officially graduated from his bassinet to his cot! I think he had a better sleep than us as we kept on checking on him. We were a bit nervous.........it's hard not to be overprotective because he's been through so much. xxx
Saturday 4 July 2009, 5:46am
Ezekiel is 5 months old now and it's exactly a year ago that we got the positive pregnancy test! Unbelievable! (Actually it is - I am living it) Mwah EZ - Mummy loves you. xxxx
Saturday 27th June 2009, 10:28am
It looks like we are going home today! The Dr is just finalising some things. When we get home it will be best not to visit for a couple of days. Please note if you have been sick or near anyone who has been sick you CAN NOT visit. Please respect this as his immunity is low and he can't afford to catch any more viruses etc.
Friday 26th June 2009, 11:34am
E was retrieved from the Mt Gambier Hospital on 14/6/09 by the W&CH Paediatric Intensive Care Team due to bronchiolitis. His lungs couldn't cope because they are small due to his prematurity and he was put on part life support again!
Wednesday 24th June 2009, 9:53pm
Wishes she could flake out in bed just like Ezekiel and be waited on hand and foot. Been a hard two weeks.
Tuesday 23 June 2009, 9:57pm
I am back sleeping on the ward with E. Looking like a good night and not too many more to go hopefully.
Monday 22 June 2009, 10:04am
I am tired but at least Ezekiel is getting better every day. We can actually see progress.
Saturday 20th June 2009, 9:39pm
I am back to sleeping at the hospital again. Shouldn't complain though. Allan did the last two nights which was awesome. Ezekiel has started to really pick up. He may be discharged sometime next week.
Friday 19th June 2009, 11:01pm
Ezekiel is starting to look like our little boy again, not just a lifeless sick baby like he was on Sunday. Hopefully he will smile again soon. He is still exhausted but is looking around more & seems to be more comfortable. His breathing is still hard and he still requires a lot of suctioning to remove the secretions and is still being tube fed most of the time.
Thursday 18th June 2009, 10:36pm
Finally Allan is here. Yay. Now I feel like I can take a bit of a break. E is doing well today. He had a bad night & nearly ended up back in intensive care. The Dr & intensive care nurse spent a few hours with him on the ward sorting out more problems during the night.
Wednesday 17th June 2009, 11:45pm
I am really, really scared at the moment. Probably silly but I am. Don't want to say all the details on here exactly but please continue to pray for protection over Ezekiel. xx
Wednesday 17th June 2009, 9:14pm
Ezekiel is about to be transferred from the Paediatric intensive care unit to the ward. So he is hopefully going to keep improving. He will be closely monitored overnight so please pray for no change. He will be on the ward for a while now just hope it's not too long.
Tuesday 16th June 2009, 11:05pm
Ezekiel is no longer intubated & is only on oxygen. He is much the same as before so hopefully he won't get worn out with his breathing again. He had another episode while trying to feed, choked, vomited & went blue so they had to suction him. Very scary.
Tuesday 16th June 2009, 10:18am
Ezekiel is looking brighter today. The oxygen is now down to 50% but he is still partly intubated to make his breathing easier. He is still working hard but looks like he is picking up.
Monday 15th June 2009, 4:39pm
Ezekiel is still partly intubated and in intensive care. They have been tossing up whether to put him on full life support most of the day but so far he is still holding up, but is very weak. Thanks everyone for your prayers.
Monday 15th June 2009, 3:39am
Ezekiel is in Paediatric Intensive Care. He is doing ok but has just been intubated. He is breathing on his own but was getting too worn out. Hopefully he can start to improve with some sleep.
Sunday 14th June 2009, 4:13pm
Ezekiel has just arrived in Adelaide. The Retrieval team from the W&CH Paediatric Intensive Care Unit flew down to pick him up. Please keep him in prayers. We will miss you all. X x x
Saturday 13th June 2009, 10:41pm
Ezekiel may finally be on the improve. He's having his first decent sleep. He has only slept about 7 hours since Wednesday morning. It's looking like he won't need to be transferred to Adelaide. Thank God. Please keep praying. X x
Thursday 11th June 2009, 8:33pm
My poor baby is back in hospital again. He is such a little fighter but I wish he didn't have to keep fighting all the time. He deserves a break. Please keep praying for him. X x x
Wednesday 29th April 2009, 9:55pm
I am so proud of my little man. He had his first return flight to Adelaide today, with Angel Flight, to visit the specialists. He slept both ways and didn't make a single noise.
Monday 20th April 2009, 10:53pm
A QUICK UPDATE ON OUR MIRACLE, EZEKIEL
We are sorry that we haven't made any posts lately. As you already know Ezekiel first left hospital just over a month ago. Although two days after returning home he got two hernia's and he had to return to hospital in Adelaide for a couple of days to get them operated on. The surgery was not the usual scenario and proved to be more difficult. Basically the Surgeon had just repaired the hernia's and they were waking Ezekiel up and another type of hernia popped out. This meant the Surgeon had to go back in again to repair the third hernia and while repairing this he found that Ezekiel was missing the muscle wall along the bottom of his stomach and so he had to bring the muscles down from his sides and tie them together. This discovery was another miracle in itself, although at the time we were worried as the surgery was only meant to take an hour and it was 3 and a half hours! God was in control. This setback has caused Ezekiel discomfort and he is still in pain when using his bowels however this should improve over time.
Aside from this, Ezekiel is going really well. He is on medications four times a day, for his kidney function and blood pressure, which are keeping his condition stable. We are due to return to Adelaide for a checkup next Wednesday 29th April. At this appointment we are expecting to find out a bit more about the long term plan for Ezekiel. For this trip we have been blessed as "Angel Flight" will be picking us up from the Mount Gambier airport and flying us to Adelaide for the day. This should be a lot more comfortable and easier for Ezekiel as we can be back home again the same day.
Well anyway this was meant to be a short note; basically to say thank you very much for all your prayers, support and the presents you have given us. We are currently working on a little project that we will be sending out to thank everyone for their support - it is taking a little longer than planned but we will finish it as soon as possible. Can we please ask everyone to send us a quick email (not wall-to-wall to ensure privacy) with their postal addresses so that we can send this out to you and ensure we have the right addresses.
Thank you once again,
lots of love and God bless,
Allan, Venita and Ezekiel.
Sunday 19th April 2009, 9:26pm
I got my very first real smile from Ezekiel today......Finally!!!! Only been 11 weeks of waiting. He is the most gorgeous thing ever and I'm not at all biased.
Tuesday 17th March 2009, 4:09pm
Ezekiel got discharged from hospital this afternoon! It's all a bit scary as all the responsibility of looking after him, feeding, medications etc falls onto my shoulders now. But I am so excited and it's a real adrenalin rush to have him with us alone. We are staying at the Ronald McDonald House tonight and leaving for the Mount in the morning.
Tuesday 10th March 2009, 6:36pm
EZEKIEL’S PROGRESS TO DATE
Once again it is time for another update on Ezekiel. Ezekiel has spent the last week and a half in the Rose Ward. This ward only looks after babies 12 months old and less. The Dr's want Ezekiel to get used to the Rose Ward and for the Nurses to become familiar with him as he will have ongoing visits to this ward.
Ezekiel is continuing to progress well and the Dietician has stated that he is above average in his growth (approx 3700 gms). Up until now Ezekiel has been on a high calorie intake in small amounts to help him grow. This has now been reduced to a lower calorie formula along with breast milk. He has four hourly feeds and sucks really well now. He is easily settled and sleeps between feeds.
Ezekiel's kidney function remains stable, the best it can be for this disease. We are still believing for a full healing of Ezekiel from this disease. Another concern at the moment is his liver as this can be affected as well. Initially it showed as normal however on further testing some changes have been evident. We need to pray that there will be no more changes. Dr's have indicated that the liver may remain stable for some time but can cause a lot of problems in years to come.
The Dr's are still working on his medications. They were hoping to ween him off the Lasix (which helps him pee and not retain extra fluid) before going home. However on the two attempts to reduce his dose to once a day he has filled up with fluid so he will still require the Lasix when going home. His blood pressure is stable at the moment due to blood pressure medications which he will be on for quite some time.
As for coming home it is looking like at least another week in Adelaide and then they will consider transferring him to the Mount Gambier Hospital. It seems like the last couple of weeks they keep saying "one more week" etc and then the next week the same thing but hopefully this time it will be close. I guess we can't complain as there are so many sick babies here that have been in hospital much longer. We are thankful that he has come this far but we are still keen to be home. Venita has now been in Adelaide for 40 days and 40 nights and to think that Ezekiel was only meant to be due tomorrow (11/3/09).
Your prayers and thoughts have been much appreciated. May God bless you all,
Lots of love from
Allan, Venita & Ezekiel.
Tuesday 24th February 2009, 5:28pm
EZEKIEL’S PROGRESS
We are really sorry for the delay in posting this update. We have been kept busy with Ezekiel and in between, running around with the activities of daily living. The Dr's are still very happy with Ezekiel's progress.
The Renal Specialists are very happy with his progress and his kidneys are functioning much better than expected. If his kidneys keep functioning well, along with the help of medications, they should be able to sustain him for the first few years of his life, after which he can have dialysis/kidney transplants. The goal now is to work on his feeding/nutrition so that he can gain weight and grow, not just retain fluid. Once this is worked out, along with his medications, the Dr's believe he will be able to come home. Praise God. They will then work closely with the Dr's/Paediatricians in the Mount to keep an eye on his progress, along with regular visits to the W&CH.
Since the meeting with the Renal Specialists; Ezekiel has continued to progressively amaze everyone. He improves each day. He has started to gain weight and is learning to suck feed from bottle & breast well. He is slow to feed and tires easily, so because of this he is being tube fed twice a day to give him a rest. His feeds have gone from 2 hourly to 3 hourly and today to 4 hourly. This will hopefully make him hungrier and more awake at feeding time to encourage him to suck feed/demand feed. The Dr, again today stated, that once he is feeding well we will be able to take our little miracle home. Yay.
Allan had to leave on Sunday to return to work which was very sad. Mum (Wilson) has come up to stay with Venita while Allan is away.
Once again thanks for all your prayers and messages. We are sorry we didn't get our latest news to you sooner. Can you please continue to pray that Ezekiel continues to feed well so we can return home, Allan will be safe at work and that Venita continues to get well. At the moment Dr Hague is still waiting for some test results on Venita as there is still some underlying issues that need to be sorted out.
Thank you everyone for everything. We love you all.
Allan, Venita & Ezekiel.
Sunday 8th February 2009, 8:23pm
EZEKIEL’S PROGRESS
Hope you are doing well. Just another update on Ezekiel's progress so far. He is doing exceptionally well and the Dr's are happy with his progress. So far he definitely has been strengthened by God - true to the meaning of his name.
Last night was exciting as he finally looked at us - previously we had only seen his eyes open very slightly once. Finally there was a connection that we hadn't had before. Venita got to change his nappy for the first time too!
We will be having a meeting on Monday or Tuesday with the renal specialists to see what their opinions are etc as they have been monitoring him very closely the last few days. He is able to be fed 15mls of milk every 3 hours now and it seems that his kidneys are able to tolerate it so far. He has been getting fed through a feed tube however today the Dr's have said we can try him suck feeding from a bottle. We got to have a go at 3pm today however he hasn't quite got the hang of breathing and sucking at the same time. So over the next few feeds hopefully he will begin to get the hang of it.
Please be encouraged to keep on praying. Thanks again for all your messages and support.
We will let you know more soon.
Allan and Venita
P.S. Ezekiel says thanks as well!
Thursday 5th February 2009, 7:43pm
EZEKIEL ZACHARIAH COUTTS
Hi just another quick note to let you know that Ezekiel is doing really well and the Dr's are amazed at his progress so far. Today Allan and I had our first hold of him after 4 days. It now makes him seem more real to us as the past few days has been quite a blur.
Ezekiel is no longer on life support and is breathing on his own. The next stage now is to see how his kidneys will function. He can only be fed 2mls of milk per hour as his urine output is so low. Hopefully we will know some more next week.
Thank you everyone for all your support and prayers. We are sorry we haven't been able to get back to everyone personally but we will update you again when we can.
Tuesday 3rd February 2009, 9:32pm
BIRTH OF EZEKIEL ZACHARIAH COUTTS
Back again briefly. Just to let you know that I've been in the Women's & Children's Hospital since Friday. Due to complications with both of our health, I had to have an emergency caesarean on Monday 2nd February 2009. We have blessed with our little miracle boy; Ezekiel Zachariah Coutts.
Date of Birth: 2nd February 2009
Time: 10:21am
Weight: 2980 gm (6 pound, 9 oz)
Length: 46cm
5 weeks early
Ezekiel is in the Neonatal Intensive Care Unit due to failure of his lungs initially and will enter another specialist care unit shortly due to his kidney problems. Already he has exceeded the Dr's expectations however he still requires a major miracle. Major points to pray for are:
1. he will be able to come off the ventilator in the next day or so
2. that he will start to pass fluid through his kidneys
3. that toxins won't build up in his body
4. that he can be fed so that he can be nourished
5. Venita to recover quickly from pre-eclampsia, swelling and caesarean etc
We thank God for everything he has done so far. Also thank you to everyone for your continued prayers and support. We will update you with more information when we can. For those of you who can communicate by facebook, please do so as we have been overwhelmed by phonecalls.
God bless
Allan, Venita and Ezekiel.
Tuesday 27th January 2009, 7:53pm
PLEASE PRAY FOR OUR BABY
As most of you would be aware I am now nearly 34 weeks pregnant. Right from the start this pregnancy has been a miracle as my Dr and Specialists believed I wouldn't be able to get pregnant due to medical reasons. But God intervened and unexpectedly we found out that I was pregnant on 3rd July 2008. We couldn't believe it as I was only weeks away from having to possibly have more surgery and discuss IVF at the Women's & Children's Hospital in Adelaide.
God has had his hand on our baby right from the start as twice we thought I was losing him/her however both times scans showed the fetal heartbeat which was a relief. During the first 3-4 months I was quite sick with morning sickness and many migraines however the excitement of being pregnant outweighed it all.
At out 18 week scan we were so excited seeing our baby on the screen, it's heart beating, arms, legs and it's lips sucking in amniotic fluid. It was the cutest thing however the next day our Dr rang to say that the kidneys didn't appear normal. I couldn't believe it, our baby looked perfect to us and we knew no different.
I was called in to see the Obstetrician who explained what he thought was wrong with the kidneys. He explained that it would be a serious problem and that a lot of couples terminate their pregnancies because of this condition. There was no way we were even going to consider this as our baby was already a miracle! Anyway this then began an anxious wait over the next 14 weeks as we had to have ultrasounds every 3-4 weeks to check the progress of the kidneys. Our scans were sent to the Women's & Children's Hospital for review and the first couple showed no difference however the week before Christmas the scans revealed changes in the kidneys.
Once again I was called in to see the Obstetrician and our baby was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD). He indicated that this is a lethal condition and our baby could die shortly after birth. He also wanted to doublecheck that we still wanted to continue the pregnancy. Of course we did, we weren't going to give up without a fight. We were then referred to the Women's & Children's to see a few different Specialists so they could tell us what to expect of our baby.
On the 14 & 15th January 2009 we spent two whole days at the W&CH hearing horrible stories of what to expect. Further scans showed that there is no amniotic fluid left at all which means the kidneys are not functioning. This now means there is concern as to whether our baby's lungs will be fully developed when he/she is born. Will he/she be able to breathe and if not he/she could die within a few hours of birth. Then after this hurdle if the kidneys don't begin to function on their own toxins will build up in the baby's system which can be fatal. That is only the start of it! The stories get worse but I won't go into those. If by some miracle the kidneys do start to partially function we have been told that our baby will be in the W&CH for the first two years of it's life.
Our baby needs a miracle to survive. If you are able to pray, please pray. We know that God is working in this situation and no matter what happens he will get us through.
Allan and I will be going to Adelaide on 23rd February 2009 where we will stay for a week and then I will be having a caesarean on the 3rd March 2009. We have been told this is the best chance for our baby to live as he/she could die if made to go through labour. Our biggest fear is that our baby will die before our family gets to see him/her. Our family is travelling up and will be waiting to see the baby as soon as they can. Please pray that they all get to meet our precious miracle.
However we are not going to give up! Thank you to every one for their support, prayers and encouragement. Below you will see that we are having a different kind of Baby Shower and if you would like to come please do so.
I will keep everyone updated on here as much as I can however there may not be any more posts until after our baby is born.
Venita
