After two years and nine months, numerous artificial inseminations and hormone pills and injections we found out I was pregnant. We couldn't be more happy! Nine months later with only a few weeks of morning sickness and no heartburn Leah was born by c-section at 38 weeks on 9 September 2008. A healthy baby girl weighing 3kg. The most beautifull baby.

The first time I saw her I was overwhelmed with love for her. Perfect in every way, ten toes and ten fingers, or so we thought...

After holding her for 20min she was taken away to NNICU, she was not getting enough oxygen and turned a little blue. They placed her on a Cipap machine that placed positive pressure in her lungs while she was breathing on her own. We felt so helpless as she was lying in the crib, not being able to pick her up and comfort her. In the days that followed we were given the worst news parents could ever get. Leah was born with numerous defects, never picked up on any scan during pregnancy. She was born with only a right kidney, her left lung was collapsed, she had a narrowed trachea (Congenital Long Segment Tracheal Stenosis), her left pulmonary artery developed incorrectly and she had a few heart problems (PDA, ASD and Cor-Triatiam). We were told by the dr that they last saw this type of stenosis 15 years ago and that the baby was transferred to London to be operated on. They had no answers or solution. They are not able to do the operations necessary to save Leah's life. Our whole world and all our dreams for our little girl came down in pieces...

A specialist, Dr Colyn, was called in to do an Echo on Leah. She confirmed what the dr's had found. The only difference is that she had hope for Leah. She referred us to Sunninghill Hospital from Wilgers and Leah was transferred there on Saturday 13 September 2008. We were met by a team of Cardiac Thoracic Surgeons, Prof Rob Kinsley, Dr Pete Colsen, Dr Hendrik Mamorare and Dr Greg Martins and also a Paediatric Cardiologist Dr Raymond Dansky. The doctors had seen similar cases like these and had hope for Leah. Even the slightest bit of hope is all we wanted.

They will have to operate on Leah, but have decided to send her home as soon as she is coping to breath on her own. She needs to pick up as much weight as she can. The bigger she gets the better, as it will make her stronger for the operation.

Leah was kept in NNICU (Neo Natal Intensive Care Unit) for about 10 days on oxygen and tube feeding. She was sent home but was back in hospital after a week. She wasn't eating well and therefore not picking up any weight. Another week in hospital and we were back home.

The next two months at home wasn't always easy. Leah still wasn't eating well, she was throwing up and was turning blue at stages. We were told to come back in January 2009 for a follow up and to do an Echo on Leah. Then they will decide when to operate. But that all changed on 4 December 2008 when Leah just stopped breathing at home. At first you don't realize what is happening, but when you don't see your baby moving or breathing at all, panic sets in. After about 1 min she came too and we took her to the emergency room at Wilgers Hospital. They gave her some oxygen and her pink colour came back. After this she was placed on oxygen at home. She had to be on the machine for 12 hours during the night. As the days went by, we had to give her oxygen during the day as well. As soon as she would cry, her trachea would go into a spasm and close up. No air could get in.

Leah stopped breathing twice more after this incident, while she was on the oxygen. The first time was on 15 December 2009 when we were at the physiotherapist. They had to give her CPR. This was so frightening. When she came too, we immediately phoned the peadiatrician (Dr Danksy) and told him we are on our way. On arrival the dr did an Echo and said that Leah needs to be admitted right away. On admittance in the CT-ICU (Cardiac Thoracic Intensive Care Unit) she started crying and stopped breathing again. Again they had to do CPR and used the green bag. That day we realized that Leah is really sick and that she needs the operation to save her life.

On tuesday 16 December 2008 at 8:00 she was taken into theatre and operated on. They operated the following:

1. Congenital Long Segment Tracheal Stenosis : Narrowed Trachea operated by doing a Slide Tracheoplasty
2. PDA : Hole in the heart
3. ASD: Hole in the heart
4. Cor-Triatiam : Membrane in heart chamber

Leah was quite swollen but did very well after the operation. Prof Kinsley said that everything went fairly well. He considered taking out the left lung, but decided against it. They will monitor the lung to see what they have to do.They did a CT-SCAN and found that there is still a segment of stenosis they didn't operate on which goes in spasm and makes air entry difficult. She was taken into theatre again on Friday 19 December 2009. Again the operation went fairly well and the collapsed left lung was looking much better. Only time would tell how she would heal and manage after the operation. The doctors have said more than once that the road ahead will be very long. How long could not be sure. Previous cases we heard off took 18 months. What the outcome was, we don't know. We have done a lot of research and it's not really positive news. The survival rate of baby's in South Africa, with Leah's problem, is minimal. There is a hospital in London, GOSH (Great Ormond Street Hospital), who treats about 10 - 12 baby's with this problem a year. We have contacted them via email and the dr has also been in contact with Prof Kinsley. There isn't really anything else they could have done.

On 29 December 2008 the stats on the ventilator went up and they found that the stitches on the last operation did not heal completely. This meant that the wound went open and air was leaking out. She was taken into theatre on 30 December 2008 to correct this by using a Bovine Pericardium Patch.

The operations healed and she was waking up at times. Looking around and following our voices. She was also moving her arms and legs. During this time she was on continuous ventilation with the settings turned up and down as she was coping or not, she was on a list of medications and getting tube feeding. She started picking up weight and growing in length.

For the next two months she was taken into theatre 9 times to do a Bronchoscopy and Balloon Dialatation on the trachea and bronchus. Numerous CT-SCANS were also done to see how she was healing on the inside and if the Tracheal Stenosis which was the biggest problem operated on, has healed. Leah has also received blood transfusions a few times.

But then on 5 March 2009 she was taken back into theatre one again. This time they had to operate on the following:

1. Tracheal Stenosis into left bronchus : Operated by doing Pericardium Patch (found around the heart)
2. Re-do Cor-Triatiam
3. Placation of Diaphragm

During Leah's stay in hospital from 15 December 2008 she's been on the ventilator, getting tube feeding and numerous medications and antibiotics. We could never have imagined that Leah would have been in the hospital for so long. No one can prepare you for seeing your baby lying in a bed with multiple tubes and drips connected to her, you not being able to even pick her up because of the ventilator. On 12 April 2009, 117 days since she was admitted, my wish came true. I was able to hold her for a few minutes. It made my day and gave me hope. It was so special and I didn't want to put her down. The time went by so quickly.

The next step for Leah was to come off the ventilator. This will be a very carefully planned extubation which will have to take place in theatre incase something goes wrong. The worst that could happen is that the trachea will collapse. If this happens there will be no oxygen going in and the dr's will have to put the ventilator tube back in. We are not sure if they will do any more balloon dialatations.

On Tuesday 28 April 2009 they extubated Leah ........ and the trachea stayed open!! The doctors watched in disbelieve as Leah was breathing on her own, awake and fully aware of what was going on around her. All the nurses came to see how she was doing and was also amazed at how well she was doing. I was able to hold her again on the thursday. She's lost a lot of weight and is now weighing 4.30kg. She was struggling to breath and not doing to well. They had to put the ventilator back on. They decided to take her into theatre that evening for a bronchoscopy to see if there is another narrowing of the trachea, there was and they had to do another balloon dialatation. After that a hole appeared in her lung. She deteriorated during the night and had to be taken into theatre at 04h00 on friday morning. They had to operate and close the hole. This was a big shock to us as we thought we were on the way out of the hospital.

Leah's After Care

Leah's tube went down to just above the carina where it splits into the 2 bronchi to the lungs. The ventilator tube was used as an internal stent, helping the trachea to stay open. This was strapped so tightly to her nose as it was not to move. The long term tubing and strapping has caused scabs on Leah's nose and has also made the one nostril a little bigger. The nose is made of cartilage and should heal with time, if not surgery would be needed when she is a little older.

The ventilator tube went through the vocal cords, this causes her to make no sounds at the moment while she is intubated. When they extubate there is most likely to be no sounds when she cries. It will come back with time and may also sound course. Leah has forgotten how to suck and will need to get special physiotherapy with a speech therapist. She will also need a physiotherapist to help her with movement as her muscles are very weak. She's been lying on her back for over 4 months. One can say that Leah is a newborn again and has to learn everything all over again. She will also be introduced to food.

Driving up and down from Pretoria to Johannesburg everyday has become routine. It is part of our daily plans and not one day has passed that I haven't visited her. It is a 70km drive from Pretoria to Sunninghill Hospital and the petrol account is quite high every month. The visiting hours are very strict, we can only see her between 10:15 - 11:00, 15:00 - 16:00 and 19:30 - 20:00. This time is so little and goes by very quickly.

So far most of the bills have been paid by the medical aid, but you do get x-rays, blood gas tests and CT-SCANS they don't want to pay. And then off course they don't pay the full anesthesiologist accounts, which means we have to pay that ourselves. Just the day to day accounts (x-rays, gasses, blood transfusions, etc) is already at R500 000,00 for this year. That excludes last years bill. We don't know what the hospital bill is standing on, but know that it is between R8 000 - R10 000 per day for Leah to lie in the bed she is in.

Update: 11 May 2009 (Day 145)

Prof Kinsley has been in contact with Dr Elliot from GOSH in London. According to him Leah's case is very severe and the only way to get her to breath on her own would be to put a permanent stent in. Before they can do this a Bronchogram (same as an angiogram) needs to be done and sent over to Dr Elliot together with all Leah's files. Dr Elliot has said that he will review Leah's files and then decide if he should come to South Africa or if Leah needs to be sent there. We truly believe that he will be able to help us. Leah is not absorbing any of her feeds at the moment and her tummy is very extended. They have placed a deudenal tube in (a tube through her nose that goes through the tummy into the deudenum) and they then give 2ml milk every hour. It is partially digested milk helping with the absorbsion. She is on full ventilation and under constant sedation. She is not allowed to wake up and move around. They want the ventilator tube to be an internal stent to the trachea, thus meaning that the tube can't move. Due to the poor nutrition Leah's hair is not growing and she is not really picking up weight. They are also giving VitD drops that she needs because she is not in contact with the sun. On the x-rays you can see her teeth and we are sure that they will appear one of these days.

We can only keep on praying to God and ask for another miracle!! That He will heal her completely!!

Update: 5 June 2009 (Day 170)

Leah is doing well and is waking up allot. I was able to hold her yesterday and she looked very comfortable and relaxed. She was looking around as if she noticed that she was not in the crib. Leah is now on 60ml of milk every 3 hours and is weighing 4,77kg. She is still on ventilation but on very low rates and 30% oxygen. They are weaning her slowly from the ventilator.

We are not sure what the team of specialists want to do next. They have said that they might do another Bronchogram and then try and extubate. After extubation they will put her on CIPAP and we believe that the trachea will stay open and not spasm. They are still in contact with Dr Elliot in London, but have not yet decided what to do.

We pray to God to show the specialists what to do!!

Update: 1 July 2009 (Day 196)

A lot has happened in last month. On 11 June 2009 Leah had a big setback. The docter was busy changing her lines when all of a sudden blood came flowing out of her nose and mouth. They had to immediately try and stop the bleeding. She lost about 170ml of blood which had to be replaced. They got a general surgeon, Dr Loveland, to come and do a gastroscopy on Leah. He found that she had a few ulcers. The one had burst and caused the bleeding. He prescribed some antibiotics and "Gaviscon" to protect Leah's tummy.

The nurse said afterwards that Leah nearly went to Heaven!

It felt like our whole world came falling down. Everything was going so well. She was absorbing and the settings on the ventilator was so low she could almost be extubated. Dr Loveland said that Leah would be fine as long as she doesn't have another big bleed.

On 29 June 2009 Leah was taken into theatre to do a bronchoscopy and balloon dialation. The bottom part of her trachea collapsed again and she was struggling on the low ventilator settings. It looks like the two bronchi are also narrowed. We are not sure what they want to do, maybe a stent or just time for the trachea to heal and harden?

Today 1 July 2009 Leah is doing well after mondays bronchoscopy and dialation. She is absorbing 4ml Infatrini milk every hour and her ventilator settings are back to where it was. She is coping on these settings. Being on the low ventilator settings forces Leah to breath more on her own, strengthening her muscles and lungs making her stronger for when they want to extubate her again.

Update: 12 August 2009 (Day 238)

Another month has passed since I last updated the site and allot has happened during this time. Leah lost allot of weight and was weighing 4,17kg. She was so thin and we were very concerned for her health. We made an appointment with all the surgeons to discuss how we feel. Another dr was called in, Dr Steve Ponde. He will be looking after Leah, doing tests to find out why she is not absorbing and why she has such an enlarged liver. He placed Leah on an arterial feed called TPN. This is high in everything she needs to pick up weight again. He also changed the milk she is on from Infatrini to Neocate which is an elemental feed. She was doing well. Absorbing her feeds and slowly picking up weight again. Her airway pressures were good and they started weaning again. We were so happy and really thought that there was light in the tunnel.

But over the next two weeks things changed. She had very high airway pressures, she stopped absorbing and she got very swollen (edema) all over her tiny body. She looked like a little oros "girl". On the weekend of 18 July Leah wasn't doing very well at all and Dr Colsen said he thinks she needs to go in for another Balloon Dialation. The airway pressures went to 62, her carbon dioxide levels in her blood went to 109 and she was so swollen severely. Puffy eyes and fingers!

Dr Colsen took Leah in for the Balloon Dialation on monday 20 July. He said afterwards that the trachea and the two bronchi collapsed down again. The airway is soft and floppy. Best described as a balloon that's inflated and then deflated. My heart skipped a beat as he said that. We were really hoping that the cartilage rings would have formed by now. The plan is to do the stent.

Leah also went for the following tests:

1. CT-Scan (Which shows that the airway and bronchi are open on inspiration but close down on expiration. She will need further intervention ie. the stent);

2. MRI on brain (Which shows her brain is under developed, may be due to poor feeding and lack of proteins and not enough stimulation. We weren't told what the full prognoses is and what the outcome would be. Dr Aduc is doing further testing);

3. MRI on spine, liver and pancreas (All clear);

After all of the above Leah started absorbing again and was on 8ml Neocate per hour. She got 16ml TPN per hour and was losing all the excess water she had. Her carbon dioxide levels normalized and her airway pressures came down to 36 - 45. Which is very good for Leah. That was until the next weekend. On monday 3 August they took her in for another Balloon Dialation. It went very well and Dr Colsen feels happy.

I also saw a geneticist, Dr Nerine Gregersen. She will be doing some test on Leah as well. The tests will include a chromosomal test and a test to see if Leah maybe has a syndrome that caused all the defects that she has. Leah is struggling to eat, has an enlarged liver, only one kidney, had the heart defects and also the tracheal stenosis.

On friday 7 August Leah had another ulcer bleed. This time not so serious and Dr Martin was there in no time to treat Leah with cold saline. They phoned Dr Banieghbal to come and have a look at Leah. He feels that she might need to get a PEG (tube to feed Leah with). He will discuss this with Dr Ponde on monday.

Today Leah is doing much better and is very calm. She is however not getting any feeds at the moment, this is to give the stomach a rest. She has lost all the excess water and picked up some weight with the TPN (feed given intravenously) she is getting. Her new weight is 5,97kg. She looks around when you speak to her, lifts her legs and arms and even smiles some times.

We haven't received any feedback on any of the blood or genetic tests that have been done. They take between 2 - 4 weeks. We are waiting in anticipation to hear what the outcome is.

On the stent: We are still waiting for the company to come back to us on which stent to use for the stenosis that Leah has. Prof Kinsley has been in contact with Dr Elliot from Great Ormond Street Hospital in London and it looks like he might be coming over to do the operation on Leah when necessary.

No matter what the results say, we still trust and believe that God will do a miracle on Leah. He is in control and only He can decide what the outcome will be!

Update: 31 August 2009 (Day 258)

The last few weeks Leah have been quite stable and there wasn't any big changes. The TPN (feed given intravenously) was stopped and Neocate feed was started. Today Leah is on 55ml of milk every three hours and the big news is that it is not given in the duodenum but in the stomach. They haven't fed her in her tummy since she had the stomach ulcers. This really is a miracle!

She is still on the ventilator and is doing well. Her airway pressures range between 30 - 45 when she is coughing. She is stable and wakes up. A bit swollen (eedema) but nothing serious.

She was also taken out of the crib she has been lying in and put in a bed. She is now a big girl!!

We are still waiting on some of the results from the tests the geneticist, Dr Gregersen, requested. The one chromosomal test to check if all the chromosomes are there and correct, came back with no bad results, everything is 100%.

Leah is turning one on 9 September 2009 and we have decided to also christen her on this day to make it even more special and memorable. We will post all the photos of this special day after the function.

Update: 11 September 2009 (Day 269)

On 9 September 2009 we celebrated Leah's 1st birthday. It was such a wonderful and special day and we would like to thank each and every one who shared this special day with us. Those who took the day of to be there with us, thank you!!

Thank you for all the the gifts, cards and money that was given to Leah on her birthday. We will keep them all and tell her who gave her what.

Leah was also christened on her birthday. It was such a blessed day and I could feel God's presence around us. He is such a great God and we thank Him for this special day. For sparing her precious life until now and all the miracles!!

Update: 24 September 2009 (Day 282)

Leah is doing very well after the recent balloon dialatation she had on sunday 20 September 2009. She is fully awake and looking around. She is on a new milk called Alfare and is getting 35ml every 3 hours. She is absorbing the milk and will now slowly start putting on weight. After a few weeks she of absorbs ion the milk will be changed to either Infatrini/NAN or S26.

We have spoken to Prof Kinsley about Leah and the stent. We have decided not to do this operation now. The operation is very difficult and there could be a lot of complications. The stent could either not be removed or it would get stuck to the trachea. The other thing that made us decide not to do the operation now is because she might not make the operation.

For now Leah will be kept stable. The plan is to do another balloon dialatation in 3 months with a size 10 and then in another 3 months time another balloon dialatation with a size 12. The trachea is malacia which means it is very soft and not staying open. Hopefully in time the cartilage will form and get hard so that the trachea can stay open.

She is getting physio everyday on her arms, legs and body and we also arranged for a speech therapist to come and work on Leah.

On thursday 10 September 2009 a Golf day fund raiser was held in Ellisras for Leah by Esorfranki Civils. Please see below for photos.

Update: 28 Oktober 2009 (Day 315)

Its been a while since I last updated, apologies for that.

Leah went in for two dialatations and also had a bronchogram. This is similar to a angiogram where they put contrast in the airway down into the bronchi's and lungs. They then take a number of x-rays to see where and if there is any narrowing's down to the lungs. They found that the stenosis (narrowing) is in the bottom part of Leah's airway, just before it splits into the two bronchi going to the lungs. The bronchi are open.

Prof Kinsley and his team then decided that it is time to do the stent in the part where the stenosis (narrowing) is. They have contacted the company that make the stent's as well as the reps to order the stent most suitable for Leah. We are not sure when it will be done, hopefully in the next 2 weeks.

It still is a very dangerous procedure as the stent needs to be placed in exactly the right place for it to be successful. Dr F Spiro from Radiology will be doing the procedure and Prof Kinsley with the rest of the surgeons also be there.

I had the chance to hold Leah yesterday, what a great feeling it is to hold my little girl. She was so calm and almost fell asleep in my arms. She was weighed and is a full 6,188kg. She is getting 90ml Alfare milk every 3 hours and is absorbing.

She is still on the ventilator and getting sedation to calm her down. The ventilator will be weaned of as soon as the stent is put in. It might take a while for them to get her off the vent, but all in good time. God has been so great and wonderful. Healing Leah in every way. We have seen miracles on her and the biggest miracle is about to happen. We trust in God that the procedure will go 100%. He has promised us that He will heal the sick and we believe it with all our hearts!

Praise God for His glory!!

Please pray for all the other little babies in the unit that also had heart surgery. Baby Tiffany had her 2nd operation 2 weeks ago and baby Jayden who has been in the unit for over 3 months now. May God heal them and make them all strong. Give them the the strength to fight and go home to be with their families.

Update: 5 November 2009 (Day 323)

The last few days has been the hardest ever since Leah was admitted in the hospital on 15 December 2008. On thursday and friday Leah had a very large bleed. This time it was not from the ulcers in her stomach, but Oesophageal Vericies. This is little veins that burst and bleed. The doctors say this happens when the liver functions are not what it should be. They think the liver is not functioning correctly and that it could develop cerrosis. This is not good at all as the liver is then going into failure. This will lead to other organza failure.

We had a very long discussion yesterday with some of the surgeons and the peadiatricians about what the future holds for Leah. Our worlds came down when they told us that they are thinking of not putting in the stent. Putting in the stent will be such a difficult procedure. If it is placed incorrectly, Leah could die. The area of placement is so small and narrow, were talking about millimeters. Putting it too low, block's of the bronchi and cuts of the airflow to her lungs. Putting it to high there will be a piece of the stenosis not stented open that can collapse and close the stent from the bottom. This will also cut of the airflow to her lungs.

After our lengthy discussion we felt that doing the stent is still and option Just leaving her and waiting for what ever to happen is not an option. She went in for a CT-Scan at 15:30 yesterday to get the correct measurements for the trachea. This will now be sent of to the company overseas who will specially design and make a stent for Leah. Dr Spiro have sent a list of questions to them and have received all the answers. Hopefully now we can go forward. We are not sure how long it will take to make the stent and then get it, but our team of surgeons know that this is what we want as parents and we really believe that this is what God has planned for Leah. He has promised to us in scriptures from the Bible that he will heal her. He confirmed that He has planned a future for Leah.

We also had prophecies from friends in our cell group: "Seeing Leah getting dressed in a school uniform, putting on a matric farewell dress". They also see a small river flowing and breeching out and as far as this river goes it is getting bigger and branching out. The meaning of this is how Leah is touching peoples lives, spreading Gods word through this website and bringing more and more people back to God.

Jeremiah 29:11 "For I know the thoughts and plans that I have for you, says the Lord, thoughts and plans for welfare and peace and not for evil, to give you hope in your final outcome"

James 5:14-15 " Is anyone among you sick? He should call in the chruch elders (the spiritual guides). And they should pray over him, anointing him with oil in the Lord's name. And the prayer (that is) of faith will save him who is sick, and the Lord will restore him, and if he has committed sins, he will be forgiven"

The message for Leah given to us by God. Luke 2:10 "But the angel said to them, Do no be afraid; for behold, I bring you good news of a great joy which will come to all the people"

They will be doing a liver biopsy on Leah tomorrow to check if the liver functions are worsening.

We put all our faith in God. Trust in in Him and holding on to his promise to us: that He will heal Leah!

An update on the other babies: Tiffany is doing well and has been sent up to Peadiatric ward. She should be going home soon. Jayden is still in the ward on the ventilator and the same. Please keep on praying for all 16 patients in the CT-ICU ward.

Update: 17 November 2009 (Day 335)

Hi everyone. I know you have all been waiting in anticipation to hear what the results of the liver biopsy said... well it was never done! The doctor felt it was too dangerous to do another biopsy within 2 months of the last one and that the results would not be any different. I was very relieved and took this as a sign from God that there is nothing wrong with the liver. Praise God!!

On monday however a MRI (brain scan) was done. The results was not what we were hoping for. It showed that the brain was very small and very under developed. The doctor also said that this would never recover and that Leah would be a paraplegic. Again she spoke about Cerebral Paulsey. At first I was very shocked and sad, but then realized that God was in control of everything and for Him nothing is impossible. He will cure Leah in every way possible and let her brain grow again.

On this day the stent was also ordered. That's what they said.... We have not yet heard anything back from the company overseas that will be making the stent. Again its taking long, but I trust that God will send the stent at the right time.

Yesterday Leah had another bleed from the Oesophageal Vericies. She had to get 120ml blood transfusion. The doctors are waiting for a machine to use to treat these vericies. The only problem is that this conditions is very rare in babies. They have the machine for adults but not for babies at Sunninghill. Hopefulle we can get one from another hospital (borrowed). Lets pray for this to happen soon.

Leah is stable and sleeping most of the time. She is still on 90ml of milk, alternating between Alfare and Isomil. She is still having water retention in the abdominal area which makes the tummy swell up. They are draining 100ml everyday. You cant drain to much as Leah will loose too much proteins, etc. She is already getting an albumin infusion to replace what she is loosing.

We received a text with the promise from God that He will heal Leah: Joel 2: 21- 27 " Fear not, O land' be glad and rejoice, for the Lord has done great things!"

	Baby Connor with his mom Haileigh and dad Isac. He had two major heart operations and is doing very well. He turned 1 today! Happy Birthday!!

An update on the other babies: Tiffany has gone home after her surgery and is doing very well at home. Baby Jayden is also doing better. They have taken him off all the medicine he was on and is also weaning the ventilator. Lets pray for him and all the other babies that are still in the unit with Leah.

Update: 23 November 2009 (Day 341)

Sadly I have to give you the news that baby Jayden passed away on saturday. Our hearts go out to his parents and family who was at his bedside everyday praying for him. He is now in a much better place where there is no pain and suffering. May God comfort his parents in this time, give them strength. Loosing a child is the worst thing that could happen to any parent, but God can and will heal all broken hearts. In Heaven one day we will all be together again.

We have some news on the stent.... Doctor Spiro is away till 17 December 09 after which he will put in the stent. We should in the next few weeks receive the stent that was ordered for Leah. Dr Spiro ordered a Nitinol Covered Y shape stent, which is most suited for the problem area Leah has.

Leah is doing well and the bleeding has stopped. We got the machine on friday to treat the vericies and the doctor was amazed at what he saw. There was only one vein that was bleeding. He seems to think that the problem is the reflux Leah has. The acid caused her esophagus to bleed. She will be seen by the doctor again in 2 weeks time to make sure that their is no more bleeding.

Leah is still getting 90ml of milk and it she is absorbing. They have started antibiotics for an infection Leah has, but nothing serious.

I will keep you updated as soon as we have more news!

Update: 9 Desember 2009 (Day 358)

In 6 days time Leah will be in hospital for a full year! I cant believe it. It doesn't feel that long. Leah has come a long way and with all the ups and downs she's had, she has grown in every step.

Today she had a another small bleed, but nothing to serious. When the doctor did a scope last week there wasn't any vericies, nothing! Praise God for the heeling!! They have replaced the blood that she had lost, 50ml. Most of the swelling that was around the face and tummy has gone down. Everyday fluid was drained and now they can hardly get any fluid. Praise God for this!!

We got confirmation that the stent has been made and is on its way. They have said that it will be done on or just after the 17th of December. That's next week. I am very excited but at the same time so anxious. We have waited so long for this. I know everything will be fine and that God is already preparing Leah for the procedure.

She has grown in length, a full 4cm and is weighing 6kg. This is a more correct weight as there is not a lot of fluid retention. She is getting 100ml of milk with some extra carbohydrates (Fantomalt). Leah is also more awake. Looking around, lifting her legs and grabbing the ET-Tube.

A good friend made some very nice animal toys that is now hanging from the roof over Leah. She cant stop looking at these things. Christmas is near and I have placed a big colorful christmas tree outside Leah's room.

As soon as the stent arrives, I will put an update for all of you to see.

Update 4 January 2010 (Day 384)

Hi everyone. We trust that everyone had a wonderful Christmas day and that 2010 will be a year of health and where all our dreams come true. May we all be blessed with God's presence in our lives everyday.

I am sure that you are all very excited to hear about the stent..... Where do I start. The procedure was booked for 17 December and we were all very anxious and excited. The stent was sent off from overseas and we were tracking it on the internet. On 15 December the stent left Heathrow airport on its way to Jhb OR Thambo. The 16th was a public holiday and nothing happened. Thursday morning 17 December we rushed to the hospital only to run into the doctor coming to tell us that the stent is not yet at the hospital and that the procedure was postponed. I felt sad but also relieved. I wasn't really upset or cross. Everything happens with a reason and God has a bigger yet better plan with Leah's recovery.

The doctors then said that the procedure will be done the next week as soon as they get the stent out of customs. We had to pay TAX at customs to release the package and wait for it to be delivered. The stent was delivered on Monday 21 December. Another setback came when the doctors opened the package.... Inside they found the stent.... But it was wrong. It wasn't in a collapsed form, it wasn't made of Nitenol and they wont be able to put it in. They were so cross and upset. Thinking of every possible way to put the stent in. They couldn't come up with anything.

Again we weren't upset. We truly believe that if the stent is necessary God will send it at the right time. Maybe the stent isn't necessary. God will heal Leah completely without another operation or procedure.

Leah went in for another balloon dialation. The doctor wanted to check the airway and see what it looks like. The bottom end of the trachea has improved a little bit and is a little bit stronger. But still closes when she goes into spasm. The bronchi looks good.

The sedation Leah gets, called Dormicum, runs on a continuous infusion through a line called a central line that goes directly into her heart. For some or other reason this line came out and the doctors decided to not put it back. 3 days of hectic withdrawal symptoms followed with allot of crying, eye rolling and pulling out the ET-tube. This was a day that none of the nurses want over again. They had to get Leah's airway open without any tube being inserted and had to bag her with all they had. They did with God's helping hand guiding them, and pulled Leah through it. I want to thank all of the nurses who were there that day that helped.

Leah is now back on the continuous infusion, which is now being weaned of slowly. This is much better. She has no more withdrawals and is very calm. She is a bit swollen again from the water retention and a drain was put in again to drain the exess fluid. She is responding a lot better and is even following movement. Her milk was reduced to 50ml every 2 hours, for what reason I dont know.

All I know is that God is busy working on Leah in a way that will have all of us standing in awe. Leah is in His hands and He will heal her completely. We thank Him for the healing that He has done.

The plan for now is to keep Leah stable, calm, getting her of the sedation and slowly weaning the settings on the ventilator. The doctors want to get hold of the reps in SA and to order the correct stent. How long it will take, I don't know. Another month or so. Time will tell.

May you all have a wonderful year!! Thank you for every sms, email and/or telephone call. We really do appreciate it. No words can tell you all what it means to know that there are so many people out there thinking of us. Standing by us during this time. You are all the wings we are carried on. Keeping us afloat and standing. On a bad day I receive sms's that lift me up, cheer me up. You are all so dear to us and each have a special little place in our hearts. And those people that make donations that we don't even know, thank you for you're generosity. May you all be blessed with everything your heart desires. God sees your greatness and will reward each and everyone for that.

We also want to thank all the nurses in the CT-ICU for everything they do for us. Always being there for us, there friendlyness and there love for us and most importantly for Leah. You all take such great care of Leah and we know that she has a special place in each ones heart. Thank you!!

Thank you to the team of doctors working on Leah. Giving her the best care. Its been a long year for all of you. At times you don't know what to do, what to say to us, but still you are all involved and not giving up. Always listening to what we have to ask or say. We know that you have only the best at heart for Leah and we know that.

Lots of Love

Jaco, Janine & Leah

Update 26 January 2010 (Day 406)

Good news, the new stets have been ordered and should hopefully be coming this week. We are very excited!! They have now ordered 3 separate stets One to go into the bottom end of the trachea (airway) just before it splits into the lungs and one stent to go into each bronchus. As soon as the stets arrive at the hospital, they plan to do the procedure it.

Since last time, Leah had two balloon dilatations which went well. The last one was yesterday. Leah had a bit of bleeding in the airway, but is doing fine. They are still weaning the sedation and have come down more than half. This is very good and Leah is awake allot more. She still gets boosters when necessary.

She smiles allot when she sleeps or looks at the toys hanging above her. We have also found that if you blow on her tummy or hand she starts laughing from the tickling it makes. This makes us really happy as it shows that Leah is registering what we do. God really is great.

Another interesting thing that happened, was that we met with the people at Discovery, our medical aid. They met Leah for the first time last week tuesday and crumbled when they saw her. In the meeting we discussed that the stent should be done and thereafter Leah needs to be weaned of the ventilator and sent home. They also want a 24hr nurse to help me with Leah and then when we are settled in the nurse will help me as necessary.

The best news is that they are 100% behind us and wants to help us in whatever way they can. They will also be paying for off this and anything medically that I may need at home. Isn't it great!! God really sends people on your path that will help you.

Unfortunately I don't have any photos today, camera charger broken and I haven't had time to get a new one. Next time.

Have a good week.

Lots of Love

Update 23 February 2010

Today is a very sad day, our precious angel, Leah, passed away yesterday morning at 11:20. Her little body just couldn't fight any more....

It was a very long road we had to walk, 17 months of ups and downs, but every day God walked it with us. And everyday we had with Leah was special and will be treasured forever. God gave us strength to get up everyday and be positive. Faith, believing with everything in you that God will awnser our prayers.

Leah was doing fairly well since the last update. Smiling at us and filling her mouth with teeth!! Yes, she got 3 moloars at ones. On thursday 18 February 2010 the long awaited stents arrived and the procedure was done at 14:10 - 16:20. The three stents were placed and we were all relieved and excited. It felt like a big mountain was lifted from my shoulders when she came out of the procedure room.The most difficult procedure was done and the team of doctors were overwhelmed with joy. They have placed stents in a baby, never tried before. Ventilation was a bit difficult and Leah had to be kept fully sedated. This was because of the fiddling in the airway and the contrast they had put in the airway and lungs to see what was going on on the screens and show them where to go. On friday Leah was stable but the airway pressures was very high and they couldn't get them down. On saturday morning they were still struggling, she was critical and still sedated.

Sunday morning they phoned to say that the stent in the left bronchus had moved into the big stent that was placed in the trachea. Due to this, the right stent started moving as well. Blocking the airflow to both bronchi. After a lot of struggling with the ventilation and keeping Leah stable it was decided to remove the 2 smaller stents. Leah went to theatre and they were removed. We all prayed so hard, but still when she came out the airway pressures were very high. The doctors just didn't know what was going on. It was very hard seeing her struggle, wanting air in her lungs and changing color due to the lack of oxygen. We stayed at her bedside till late that night.

Nothing could prepare me for the phone call I have dreaded to get, it came on monday morning 7:30. When they phoned me and said we need to come now, I knew. Leah was slipping away. We prayed and prayed and spoke life over her. The whole time we were with Leah I just said to God not to take my little angel...

The doctor struggled for a while and then it just happened, her heart just stopped....

God had a different plan for Leah. He had planned her life in advance and new that today would be the last day for Leah on this earth. She is now in Heaven playing at His feet with all the other little ones He had come to fetch. God is building His Kingdom and Leah is now part of it. Psalm 139:13-18. She doesn't have any pain anymore, no more ugly tubes, lines and plasters. She is now perfect just as God created her.

We will always miss you our baby girl. You will always be in my heart and in everything I do. We will see you in Heaven again, soon my angel. Then mommy & daddy can hold you again and play with u.

We love you so so much!!!

Rest in Peace Mommies little pookeloo.

XXXXX

Memorial Service

Date: Thursday 25 February 2010

Time: 11:00

Place: NG Kerk Moreletapark Pretoria

Directions: www.moreleta.org

What the stents looked like : X-Rays

Leah's Memorial Service : 25 February 2010

We couldn't have asked for a more beautiful day to have a service for Leah. Since we woke up it was drizzling and later on turned into a full rainfall. It was so so beautiful!! God was crying with us and at the same time blessing us with His presence. Everything was perfect.

We want to thank everyone that helped on the day to get everything ready, everyone that was there to be with us and all the flowers that we received. I will treasure all of this for the rest of my life.

We know that God is with us and that He will help us to get through this rough patch. Leah is now in Heaven, healed completely, laughing and playing.

Memorial Leaflet

11 MEI 2010

It's almost been 3 months since Leah passed away and it feels like forever... Time goes by so quickly. It is still so unreal and we still cant believe that the stents didn't work. We had waited so long for that, but yet in the end God had another plan for Leah and for us. After the funeral we went on a short holiday to Cape Town which was very nice. We went down the coast from Cape Town, Gordon's Bay, Pringle Bay through Hermanus all the way down through the Baviaanskloof to Jeffreysbay and back. We had great weather and some great times. In everything we thought of Leah and she will forever be in our thoughts.

18 August 2010

Its been a while since I have last updated the website, time goes by so fast. Its almost 6 months since Leah passed away. Some days it still feels so unreal and you become so sad and angry at everyone and everything and other days you get yourself not wanting to think about it. Dreaming of her is the saddest part of this, it feels so real and you don't want to wake up from the dream. You just want to keep seeing her, holding her in your arms...

But life has to go on, however difficult it is for us. Its fine when you work and keep yourself busy with work, but its the weekends that's the worst, not knowing what to do with yourself. We always had plans for the weekend, going to the hospital for the day to visit our little angel....

On 9 September it would have been Leah's 2nd birthday. She would have been a big girl by now telling us what she wants and running around.

We have decided to every year from now do something in memory of Leah. This year we are going to the JHB General Hospital for the day and we will be visiting the Cardiac and Lung unit for the day. This is a children's ward where they are all very sick and are either waiting for their life saving operations or have already had their operations.

We will be spending the day there taking some presents for them and also some balloons, sweets, cooldrinks and of course a clown will be doing face paintings and jokes.

We are so excited and we cant wait!!!!! Will post all the photos for you to see.

Then I know there are some that are wondering about the Bible project. We have received some payments which we are so thankfull for. I have discussed this today with the church and they will be helping me to find the people in need of Gods Word. I will keep you updated of all the up and coming events that we will be doing in memory of Leah.

Thank you for everyone who still emails and sms to find out how we are doing, We really appreciate it so much.

Lots of Love

Jaco & Janine

30 September 2010

Hi everyone. Trust that you are all still doing well.

We have some awesome news to share with you all... I found out a few weeks back that God has blessed us with another little life growing inside of me. We are so overwhelmed with you and know that this is miracle. I am 10 Weeks today and the due date is 21 April 2011. We cant wait!!

About the birthday party. Unfortunately due to the strike they had we were unable to have the party and JHB General. I am busy organizing another date for this and promise to put everything on the web for you guys to see.

We will be placing Leah's ashes in the wall of remembrance on sunday 24 October 2010 and I will put some photos on. It is something we need to do as part of the mourning process. Part of healing...

Please say a little prayer for a little girl of almost 2 years. She was also in hospital with Leah and is currently very ill. Her lungs are not working as it should and she is on constant oxygen at home. No operation is possible and only our prayers can heal this little girl.

May you all have a blessed day.

Janine

xxx

23 February 2011

A year has past since our precious angel passed away. Feels like yesterday that she was born and this whole story unfolded in our lives. What a year its been. Ups and downs filled with emotions of sadness and then off course the joy of finding out I am expecting again. God really is good for us, bring good from something so sad.

I am now 31 weeks pregnant and expecting a little boy, Jayden. The expected date is 21 April, we cant wait. We are so excited to see him and hold him for the first time. And then also scared to bring home a baby to take care of and look after. Im sure God will show me what to do in raising this gift He is giving to us to raise as a child of God.

I know a lot of people want more updates, but there just isnt always something to say or do, Leah is no longer here. All I can share is my sadness and the longing to see her again. I know one day we will see her again and be able to her. We cant wait for that.

Some photos below of what has happened, placing of ashes, first christmas and then her 1 year memorial.

First Christmas:

1 Year Memorial:

Thank you to everyone who smsed, emailed and facebooked us yesterday, we really appreciate every single one.

Lots of Love

Janine

Congenital Long Segment Tracheal Stenosis : The trachea (windpipe) is the airway tube leading from the throat to the lungs. It is not made up of solid tissue, but rather a series of C-shaped rings of cartilage linked together, a bit like vacuum-cleaner tubing. Normally, the cartilage gives the trachea its structure When a child has tracheal stenosis, the rings are often fixed and O-shaped so do not allow for growth. If a child has "long segment" tracheal stenosis, more than two-thirds of the trachea is affected. Some children only have a few affected rings (short segment stenosis).

Infants usually present with noisy breathing and sometimes respiratory distress. They may have recurrent chest infections. Very occasionally breathing can be so difficult that the children have to be rushed to hospital. Long segment congenital tracheal stenosis is extremely rare. In the UK there is about 10 - 12 cases each year usually between the ages of 6 months and one year, but occasionally when the children are just a few days old.

The risks of this type of surgery relate not only to the problems of the airway but also for other anomalies that the children may have. More than half of the children with long segment tracheal stenosis have congenital heart defects and it is the severity of these defects which has more to do with the risk of the operation than the long segment stenosis. Almost all children survive the surgery but a number with very severe disease will not be able to make it through the early post-operative period. At present most children will survive to 6 months of age and thereafter anybody we have treated is alive and doing well (UK information). Some children also have very soft airways beyond the narrowing and these may take many months or even years before the airway hardens up completely and so occasionally a tracheostomy is needed to help with breathing until this happens.

Dr's don't know if this procedure is a cure and they don't know the very long term outcomes. Children treated who have survived the the surgery have gone on to lead near normal lives with the exception of occasionally requiring more interventions such as bronchoscopy and occasionally stenting. If the narrowing does recur then first we can stretch that narrowing with a balloon through a bronchoscope, or we can place a stent also via a bronchoscope, and very rarely an operation might be necessary (tracheal transplant).

Tracheostomy : This is a surgical procedure on the neck to open a direct airway through an incision in the trachea.

Slide Tracheoplasty : This is the operation of choice to correct the problems associated with tracheal stenosis. The advantage of a "slide tracheoplasty" over other operations is that it uses the body's own tissues to correct the tracheal stenosis, so there is no risk of rejection. The aim of the operation is to widen the airway, and so reduce breathing problems.

The procedure of slide tracheoplasty involves mobilizing the airway, then cutting the narrow trachea across at the mid point of the narrowing, and then making cuts on the front of the lower segment and on the back of the upper segment until normal trachea is reached, and then sliding the two over each other and joining the tow long incisions together. You can imagine doing this by touching your two index fingers together and imaging this is the point of division of the trachea and then sliding them one on top of the other up to the main knuckle. It is clear that if you were able to do this with the trachea you would significantly widen the airway even though the shape change little.

PDA : Patent Ductus Arteriosus : Every baby is born with a ductus arteriosus - an open passageway between the two major blood vessels, the pulmonary artery and the aorta. The pulmonary artery carries venous (blue) blood from the heart's right side to the lungs where it picks up a fresh supply of oxygen. The aorta carries the oxygen-rich (red) blood from the heart's left side to the rest of the body. Normally the ductus between the arteries closes a few hours after birth. If it does not close, some blood that should have gone through the aorta and on to nourish the body goes back to the lungs. Failure of the ductus to close is quite common in premature infants but it is fairly rare in full-term babies. If the ductus is large, a child may tire quickly, grow slowly, catch pneumonia easily and breath rapidly. In some children, symptoms may not occur until after the first weeks or months of life. If the ductus is small, the child seems well. If surgery is required, the surgeon does not have to open the heart to correct it and the ductus can be closed by simply tying it. If there are no other defects, this restores the circulation to normal.

ASD: Arterial Septal Defect : When there is a sizeable defect between the atria, a large amount of oxygen-rich (red) blood from the heart's left side leaks back to the right side. Then it is pumped back to the lungs, even though it is already been refreshed with oxygen. This is inefficient working of the heart because blood that has already been tot he lungs is returning there, and blood that needs to go to the lungs is being displaced. Many children with this defect have few symptoms, if any. Closing the atrial defect by open-heart surgery in childhood can prevent serious problems later in life. In addition, the child's long-term outlook is excellent.

Cor-Triatiam : Division of the left atrium by a fibromuscular diaphragm - cor triatiam - is generally considered to be the result of an abnormal development of the junction of the pulmonary veins with the left atrium. At about the end of the first foetal month, a protrusion - the common pulmonary vein - grows out from the sino-atrial region of the primitive heart and later connects with the four pulmonary veins. The common pulmonary vein is then incorporated with the left atrium, becoming part of its dorsal wall, and thus the individual pulmonary veins will drain directly into the left atrium. If the common pulmonary vein remains and its opening to the true left atrium is small - as it very often is - emptying difficulties will arise and the common pulmonary vein is dilated to a "third atrium". The diaphragm is then made up of the wall of the common pulmonary vein and the wall of the left atrium.

When the diameter of the opening is only about 2-3mm, symptoms will arise during the first year of life. If the opening is larger, symptoms are less severe, the debut comes later or may fail to appear and the malformation is found by accident. During infancy, symptoms are primarily caused by the pulmonary venous stasis but are often interpreted as being produced by respiratory tract infections. Heart failure and cyanosis are often seen. Heart failure and cyanosis are often seen. Heart murmurs, when present, are not characteristic. ECG shows right ventricular hypertrophy.

Normally the human heart has four chambers of which are the atria. These two are separated from each other by a partition (septum) called the atrial septum. The other two chambers, known as ventricles, are also separated by a septum. In cor-triatiam there is a small extra chamber above the left atrium of the heart. The pulmonary veins, returning blood from the lungs, drain into this extra "third atrium". The passage of blood from the lungs into the heart is slowed by this extra chamber. Cor-triatiam may eventually lead to features of congestive heart failure and obstruction over time.

ECHO : Echocardiogram : An echocardiogram is a graphic outline of the heart's movements. During this test, high frequency sound waves, called ultrasound, provide pictures of the heart's valves and chambers. This allows the technician, called a sonographer, to evaluate the pumping action of the heart. Echo is often combined with Doppler ultrasound and color Doppler to evaluate blood flow across the heart's valves.

Why do an Echo: Assess the overall function of your heart; Determine the presence of many types of heart disease; Follow the progress of heart valve disease over time and Evaluate the effectiveness of medical or surgical treatments.

Pericardium Patch (Bovine) : Bovine pericardium contains a high amount of layered structural protein with elastic properties that allow conformity to challenging anatomy. Designed to provide optimal assistance in pericardial closure, the bovine pericardial patch utilizes proven heart valve tissue which has demonstrated exceptional resilience and long-term durability. It provides dependable suture retention as well as ideal handling characteristics.

Balloon Dilatation : Flexible fibre optic bronchoscope and a lucent, tapered endotracheal tube for tracheal dilatation. The fibre optic bronchoschope is passed through a special T-Connector into the endotracheal tube and used to guide the tube under direct vision through the structure. The balloon is blown up to the required size to stretch the trachea and then pulled out.

Bronchoscope : A thin tube-like instrument used to examine the inside of the trachea, bronchi (air passages that lead to the lungs) and lungs. A bronchoscope has a light and a lens for viewing, and may have a tool to remove tissue. An instrument is inserted into the airways, usually through the nose or mouth, or occasionally through a tracheostomy. This allows the practitioner to examine the patient's airways for abnormalities such as foreign bodies, bleeding, tumors or inflammation. Specimens may be taken from inside the lungs: biopsies, fluid or endobronchial brushing.

Placation of Diaphragm : This is when the diaphragm has moved up and nees to be pulled down.

Stenting: You get different types of stents, silicone and metal, and each one has their pro's and cons. Airway stents are used to treat patients with tracheal stenosis, who are symptomatic and in whom tracheal surgical reconstruction has failed or is not appropriate. However airway stents are often associated with complications such as migration, granuloma formation and mucous hyper secretion, which cause significant morbidity, especially in patients with benign tracheal stenosis and relatively normal life expectancy. Benign tracheal stenosis is most often caused by prolonged intubation and/ tracheostomy.

Silicone Stents - Dumon Type : Tracheal and Bronchial stents are the original patented design, used successfully worldwide to treat tracheal obstructions and stenosis. The stents are made from implant grade silicone suitable for long-terms placement and feature an exclusive surface treatment to ensure non-adherence. The material is flexible enough to allow for traumatic insertion and placement, yet will seek its original shape following placement, providing the force necessary to correct extrinsic compression of the trachea. The patented stud design aids in preventing migration by naturally fixing the stent between the cartilaginous rings of the trachea. The stents are specially beveled to maximize airflow while helping to prevent crusting and granulation tissue from forming.

Indications for use: Trachiobronchial Tumors, Tracheal Stenosis with scarring, Bronchial Stenosis following surgical resection and anastomosis and Bronchial Stenosis following pulmonary transplantation.

Contact Details

Janine Marx (+27) 082 347 7837 rentalsv@mweb.co.za Jaco Marx (+27) 082 373 0674 outdoorpaint@mweb.co.za FAX: 086 663 6831

Special Thanks

Van Rensburg Inc for registering Leah's Trust and not sending us an Invoice to pay. Piet, Werner and all the ladies in the office, thanks guys for always being there for us.

Ocean Basket The Willows for closing their restaurant on 24 June 2009 in order for us to have a fundraiser for Leah. Thanks to Fats, Andreas and Neil for their hospitality and friendly service. The fundraiser was a great success!! Thanks to Sarah and Antoinette for organizing the evening.

Family in Ireland: Pat, Tanya, Auntie Hermine and all the ladies in Cashel County Tipperary for baking cakes and making beaded necklaces into the late hours of the night and then selling them at Feehan's Pub. Thanks to everyone in Ireland for their contribution to raise funds for Leah. We don't personally know most of you but would like to thank you for your generosity.

Website by Creative Storm: We would also like to personally thank our best friend, Jacques, who has designed this wonderful and beautiful website for Leah. He always makes time for me to update the website. Always being patient and letting me add as much info as I like to the website. We really appreciate it from the bottom of our hearts!!! www.creativestorm.co.za

Ocean Basket Fund Raiser: 24 June 2009

Golf Day Fund Raiser : 10 September 2009

We would like to thank Mark Green from Esorfranki and all the other sponsors that were at the Golf Day on 10 September 2009. Thank you all from the bottom of our hearts for the funds that you raised for Leah's Trust. The Golf day was really a BIG SUCCESS!! Thanks again!!