Hi Catherine,

You are definitately not alone!

I had never heard of hydrops either, the first time I heard the word used was after L had been born. I'm kinda glad I didn't hear it before then actually because all I would have done is googled it and lost all hope I think.
It's a real shock to the system to find out that what you assume will be a normal straightforward pregnancy suddenly takes on a whole new twist
I hope you have some good doctors to support you through your pregnancy. We were very fortunate to have a fantastic specialist who was really on to it, and I am convinced that without her things would have turned out very differently.
Just wanted to say hang in there, and never say never!
Keep us posted.

Thanks, Katie! I know what you mean about googling 'hydrops' - it's all doom and gloom! Having read L's story, I can honestly say that you've been to hell and back (and it may not be all plain sailing yet), but his fighting spirit will see to it that he goes on to do great things with his life. He's definitely a kid who is here for a reason and no doubt that reason will become apparent in years to come. I know that my husband and I are so lucky to have two healthy kids, but we want this one too and we'll do everything we can to save him (we know he's a boy). Lachlan's story has certainly inspired me.

Hi Catherine,

My name is Janee,( I am Shan Helena Ivy's, Mum), from forum Babies Lost to Hydrops. However the reason I am replying to you, is I am in Brisbane , Queensland, Australia. I wanted to let you know that my family and I are thinking of you and your family wishing each of you great health.

Keep positive thoughts thinking of you all

Janee Veigel

Hello, and welcome!!
I am also 22 weeks pregnany with hydrops. You can read all my posts under "Pregnany with hydrops..."
I am so glad you found this forum, as it has given me tons of support!
Have you doctors talked about any kind of fetal treatment they might be willing to do to help your baby?
Please keep in touch so we can compare notes, and experiences!

I am praying for you and your baby!
~Carrie

Janee and Nancy, I am so sorry to hear about what happened. I just can't understand this. From what I can gather, so much is known about other conditions. Spina bifida apparently happens in about 1 in 1000 pregnancies; Down Syndrome apparently happens in about 1 in 1000; cystic fibrosis, which in Australia (I don't know about other countries) is the subject of so much publicity and research, happens in about 1 in 4000. I can't for the life of me understand why so little is known and so little information is given to parents about hydrops, which apparently affects 1 in 3000 pregnancies. It is more common than cystic fibrosis, yet it sould seem that nobody apart from doctors has ever heard of it.

At this point, I have spent a lot of time researching on the internet and no doubt my doctors think I'm some sort of maniac. Regardless of the eventual outcome for my baby, I am going to pursue this on behalf of all the people who are going to go through this in the future. If this is happening to 1 in every 3000 pregnant women (and their partners), the lack of information is nothing short of appalling. I had my first child in 2001 and my second in 2004, and at no stage have I read anything about hydrops in any book about pregnancy or child health or in any hospital pamphlett. But everywhere you look, there's information about cystic fibrosis and other problems that are far less common than hydrops. Not that I'm saying for one minute that cystic fibrosis is an undeserving recipient of all that information and government funding; I'm just saying that I can't understand why hydrops ISN'T. Why are women being told that 18-week ultrasounds are 'optional' if 1 in 3000 babies have hydrops??? Parents should at least be advised that they might miss a diagnosis of hydrops if they don't have ultrasounds. Testing for cystic fibrosis is done as a matter of hospital routine straight after birth.

Sorry to get on my soapbox about this. I'm just fed up with being made by doctors to feel as though I'm the patient from hell just because I'm asking a lot of questions about treatment options and refusing to accept what I'm being told, namely that there are none of any real benefit so there's no point in trying. I'm on about shunts at the moment and madly shopping for a doctor who is willing to consider giving them a shot. I am an experienced lawyer (and the doctors know that) and I intend to use my experience and tenacity to do something about this lack of information for the sake of those who will in the future be one of the 1 in 3000.

So my next medical appointment is on Wednesday, to see a doctor who might consider placing some shunts. I'll keep you posted!!

Catherine,
I can't agree with you more!! My husband and I talk about that all the time. We are planning to try and found out how we can get pamphlett's out to doctor's offices, and hospitals. I believe it would have been so much easier for us if we were given information, and support groups when we found out. All we were told was that our little girl was going to die, and we had to decide to terminate the pregnancy or carry to full term. We let the doctors office in shock, with no information to go off, and not even a name. No one ever told me HYDROPS. All they told me was skin edema, and I was in so much shock I hardly heard them say that.
I did research for weeks, found out it was called Hydrops... and i am still continuing to find new information that I have never read. AND this forum has helped me greatly by hearing everyone's experiences.

Something needs to be done about the lack of info out there (in dr. offices)

~Carrie

Totally agree Catherine.
I was just saying to Janee that for a condition that is supposedly so rare there sure are a lot of people with stories to tell.
Yet, the NICU specialists at our hosp said they saw about 3 cases a year (in a population of 4 mill?? And they would get the majority if not all of the cases I would think). Everywhere I go, docs, specialists etc all know little to nothing about the condition.
It's like some mystery condition with no solid info, or real answers for causes etc. As I mentioned earlier apparently 50% of cases go without finding a cause.
The more information we can gather here, the better.
Which reminds me... i need to find a place that converts video to DVD so I can upload Lachlan's u/s results etc...
You are doing a fantastic job Catherine, I hope you continue to be the patient from hell!

Fight hard for your baby!! My husband won't let us do the "what ifs" for sanity reason. BUT I would find a doctor willing to help. If not shuts then at least remove the liquid even if it returns. You will never be sorry for fighting too hard. I think they try to get you to terminate your pregnancy which means they don't have the experience of helping those of us who try. I have to say even though my baby didn't make it, and as tough as these last 2 weeks have been - I do not regret trying to help my baby. I just wish I did more. I may be redundant but if your baby stops moving take action! Tell them you want to be treated like any normal pregnancy.
I too can't figure out why hydrops is such a mystery.??
Nancy

Well, more doom and gloom. The doctor I saw today essentially said that there is no hope and I need to terminate sometime over the next ten days or it will be too late to terminate from a legal point of view. He said that the baby has lung hypoplasia and ascites and he can't see any prospect of a positive outcome. He also said that no doctor here in Darwin would even attempt any sort of shunting or surgical intervention. So I told him, "Fine, I'm going to Sydney. Who's the best perinatal specialist down there? Arrange an appointment for me early next week and I will get myself onto a plane over the weekend". I gave him no choice; I think he was happy to get rid of me! Certainly he made it clear that he was not prepared to take on my case or have any ongoing involvement. I am not in denial, but I am NOT going to throw in the towel just yet. SO probably next Tuesday I'm going to see a very prominent perinatal specialist at King George Hospital in Sydney to see what, if anything, he might be able to do. I'll keep you posted!

Regardless of what I am told in Sydney, I just don't think I am going to be able to find it in myself to terminate this pregnancy. This baby moves and hiccups and is a human being. If this perinatal specialist in Sydney can't do anything, I think all I can do is to take a leap of faith and leave things in the laps of the gods. I cannot just kill this baby on the grounds that it's the 'sensible' option (at least according to the medical experts). Not that I'm criticising ANYBODY who terminates a pregnancy for any reason; I am a great believer in democracy and freedom of choice and personal difference; I'm just saying that I don't think I can bring myself to do it.

Wow, you read about these horror stories in magazines. You never think that one day it's going to be you, do you? Still, here we all are. If nothing else, I am determined to turn this dreadful situation into a positive event in the sense that the patient from hell is about to become the activist from hell. I am determined to do something about the lack of information for parents and the lack of proritisation that hydrops seems to be receiving from the medical community. I really had to fight to get that referral to Sydney today.

Hi Catherine

I am wishing you all the luck and love in the world, for this opportunity for you and your bub. I am thinking of you and I will be praying for you. Please post again and let us know how you are doing.

My doctor here is at the Mater Mothers Hospital here in Brisbane is Dr Grey, there was a story on him in the Sunday Mail approx 5-6 weeks ago, he is an amazing man, and even though we did not get to bring our baby home, the care compassion and understanding of him and his team were 2nd to none. It is a Tertiary Hospital as well, the Neo-Natal Nursery where my Shan spent her 5 days here was just unbelieveable.

Safe trip and Happy health to you and yr family

Janee Veigel

thanks for updating us Catherine.

One thing I've noticed from reading yours and the other ladies stories is how much you have had to fight to get your docs and specialists on board to attempt various treatments. I don't know if that's because your babies had different degrees of hydrops or what (Lachlan's was all around his lungs, chest and head at the time he got treatment, and was at the stage where they basically told us to act NOW or it's going to be too late).
The only time they EVER mentioned the option of aborting to us was around the 21/22 week mark when it was thought the baby may have had Downs, not because of hydrops.
Our specialists were basically of the opinion let's try everything we can to save this baby.
Bearing in mind that I'm not a medical expert of any kind (JUST a parent ;) ) lung hypoplasia would be expected if there was excess fluid and the lungs had too much pressure around them to develop properly, I'm curious as to why your (ex) doc sees this as a reason not to try anything? Surely under development would be a reason to TRY removing fluid, to give them a chance to grow??
Also, are steroid injections not an option to help lung development?
The ascites, which I'm not all that familiar with the term TBH, but what I've read they can be potentially treatable with fluid removal by needle.
Maybe I'm speaking out of turn by not having a medical background, but I just don't see any reason not to TRY.
I'm not trying to dish out false hope either, just putting my .02 in!
Good luck with your fight, I'll be thinking of you.

Well, tomorrow I'm off to Sydney. I have an appointment to see Dr Daniel Challis at 11:30am on Tuesday. He is one of Australia's most eminent maternal-foetal health specialists, and he has performed a lot of pioneering foetal surgery. I've already had a telephone conversation with one of his assistants, and it sounds as though he's prepared to spend a lot of time speaking with me and he's prepared to place some shunts and at least try to save this baby. I'm so glad I'm doing this. Even if the outcome is ultimately not the one I would like, I will know in my own mind that we did everything humanly possible to try to save this child. It is very important to me that I know that.

Thankyou all so much for your kind thoughts and well wishes, and thankyou Katie for your 0.2!! I appreciate it more than you will ever know. For those whose babies did not survive hydrops, I know I can't comprehend the hell you've been through and continue to go through, but maybe I will come back with some information that I can pass on. As I've said earlier, if nothing else of any good comes out of this I intend to at least hound the government until some priority is given to funding community awareness of hydrops and I intend to try to set up some sort of national support group in Australia. Also, it would seem that there needs to be more understanding of hydrops among the medical profession. By the time I insisted on being referred to doctors in Sydney, I knew far more about hydrops than the specialists I was seeking second opinions from. Two of them didn 't even know about pleural shunting.

I had to smile when Katie said she was JUST a parent. I'm sure that at this point Katie knows far more about hydrops than most of the doctors who have treated Lachlan. A parent is truly a powerful force, and we should never be overestimated. I'll be thinking of you all over the coming days.

Hi Catherine

Have a safe trip, and we are sending love and positive thoughts for you and your family & your baby. Let us know how you all go.

Janee Veigel

Hi Catherine,

A belated welcome to the forum! Sorry I've not had a chance to catch up with all of the posts in this topic yet..still reading through. You are not a "patient from hell" whichever doctors see you that way have issues of their own that they need to deal with!

You are a strong mother doing the right things and trying to find out the best things you can do for your baby... you are just doing what you were born to do. You can be proud knowing that.

I'll try and catch up and post some more soon....

Meanwhile I'm glad you found this place and made some new friends. It's especially amazing that you have met others going through the same experience even at the same period of gestation!

Keep in touch - we are all routing for you!

Dan

Hi Catherine

Just wishing you all the best for tomorrow remember to stay positive.
There are some doctors out there that can be really negative I could give you one example my mum was pregnant with my younger sister when she was 47 off an ultrasound 'the specialist' decided that the baby was too small for dates had too much fluid in the womb and stated she probably had trisomy 21 and would probably die shortly after birth and it would be best if mum terminated the pregnancy. Mum turned around and stated to him that a baby is a blessing from God and she would accept and love her baby regardless. She also went to another doctor. Well today susanna is a happy healthy normal 15 year old with no medical issues whatsoever. So you hang in there and keep fighting for your little one.

marita

Hello Catherine,
My name is Dottie I have a 12 year old son that was diagnosed with Hydrops when I was about 28 weeks preganat. His story is at Preganat with Hydrops and looking for help page 4. They did not give us much hope either. But my strong little man pulled through. It was a long hard road for him he went through a lot. I know that every situation is different as you have read. But don't give up hope and pray as much as possible. God has the final say and he uses every situation for good. I also agree there needs to be more information
available about Hydrops. I hope all goes well in Sydney. We will be praying.

Dottie

Well, I'm still in Sydney. The medical team down here is second to none and I'm confident they are doing everything they can to (a) find out why the baby has hydrops and (b) not let him die. So far, there seems to be no obvious cause. They've ruled out any chromosomal problems and most of the genetic syndromes associated with hydrops. They've ruled out any associated heart problem (although there is still one heart test to go, which is going ahead next Monday). Two days ago, they removed all the fluid from the baby's lung cavities and tomorrow they will see whether it has reaccumulated and place one or more shunts. There is a lot of skin and body wall swelling, and I don't know whether that will reduce. Time will tell. I am a lot more confident that I was before I came to Sydney, but I know that the outcome could still be bad. If it is, at least we'll know that we left no stone unturned. Will keep you posted!

Hi Catherine
I am so pleased that you have found doctors that are helping you and your little one it must be a relief after what the other doctor said.hang in there I am praying all goes well for you.
Marita

Hey Catherine,
It's good to hear that they are doing their best to help you find answers and making sure they do everything to save the baby. I will be praying all goes well.

Dottie

Sounds like you are in the best possible hands. I will be thinking of you guys. I think everyone here is waiting anxiously for updates!

Hi Catherine

I thought about you all day on Tuesday, I hope you felt our positive thoughts. We are still wishing you well. Your spirit sounds good. We are thinking of you and waiting for your next post.

Fingers x'd and positive thoughts coming your way from us.

Janee Veigel

OK, so I'm back in Darwin! Last Friday, the baby had two shunts put in to attempt to keep the fluid away from his chest cavity. The object is to give the lungs room to expand and develop; if this doesn't happen, the baby will be born with grossly underdeveloped lungs and will almost certainly die. I flew home to Darwin on Saturday and had a scan this morning which showed that one of the lungs is doing well and the other one is not looking great. But it's an improvement, and that can only be a good thing.

Heart problems, chromosomal problems and any other obvious causes of this hydrops have now been ruled out. On the scans, the baby has obvious head swelling but it's apparently scalp swelling and not brain swelling. So now it's just a waiting game and we take it one week at a time and see how things go. There is no way of knowing what will happen when the baby is born, and it's likely I'll have to go back to Sydney for the birth. I have absolute confidence in these doctors in Sydney and I know I am in the best possible hands. They seem to be fairly confident that the baby will now survive to birth; what happens after birth is a completely grey area.

I did ask about the likelihood of hydrops recurring in subsequent pregnancies. I'm 40 years old, so I may well not have another child after this one, but it's very important for younger parents to know about the likelihood of recurrence. I was told that the most likely chance of recurrence is if the hydrops is caused by an underlying medical condition suffered by the mother, such as diabetes or thyroid conditions. If the hydrops is caused by an underlying chromosomal problem, the mother stands no more of a chance than anybody else her age of conceiving another child with a chromosomal abnormality. If the hydrops is caused by the baby having a congenital heart problem or a congenital metabolic syndrome, parents need to talk to a genetic counsellor about it as there may be a one-in-four chance that such a problem could surface in another pregnancy. If the cause of the hydrops is unable to be determined, the short answer is that nobody knows what the likelihood of recurrence in another pregnancy is.

So I'll keep everyone posted and as I gather more information I'll pass it on. 25 weeks and counting down!

Catherine,
It sounds like good steps were taken to help your baby survive. My family and I will continue to pray for you and your family.
I know miracles happen bacause it did for my son! But I also know that every situation is not the same. No matter what happens God will use this situation for good.

Thinking of you,

Dottie

Hi Catherine
Thanks for posting. Glad you are home safe and well. Well I just wanted you to know that My family and I are thinking of you and your family and your baby.

Let us know if your up to it week by week.

Wishing you Good Health.

Janee Veigel

Glad to hear there is some improvement with one of the lungs.
It's such a long stressful waiting game, but you have made it to 25 weeks and your baby is fighting hard, so fingers crossed that you see some more improvement as the weeks go by.
Thanks for posting the info about recurrence too... I guess that too is another wait and see game for us at least!

Had a scan yesterday which showed some real improvement! The doctor said that the lungs had expanded to fill about 80% of the chest cavity and the head swelling had decreased. I know that this is only because the shunts are draining the fluid away and no doubt things are going to get hairy once he is born, but I'm thinking that any improvement before birth is cause for cautious optimism. I have to have scans every week from now until the birth, and the doctors will work out the game plan as we go. I'm thinking of you all and will keep everyone posted.

Catherine,
What great news! improvements are always a plus. I'm so glad that you are in good hands they seem to be helping you a great deal. Lung development is so important and will help when your baby is born. I will contiue to pray for you and your family. :D

Dottie

Hi Catherine
that is fantastic news I am so happy for you. Im praying everything continues to improve with your little one. Keep us posted
Marita

Thnaks for the update and brilliant news! The shunts must be working well! Anyone else going through this or trying to decide on using shunts will surely be encouraged :)

Those lungs sound ready to power some awesome screams!

Yaaaaay! Go baby! He is putting up a good fight :D
Still have everything crossed for you

Hi Catherine

That is AWESOME News

Janee Veigel

Had another scan yesterday which showed no further improvement BUT at least no deterioration. So we're another week closer to our ultimate goal and I am remaining cautiously optimistic!

I am so happy for you and your baby!! What a blessing!

~Carrie

And so to an update: I have now made it to 29 weeks! The baby looks OK according to the ultrasounds, and although there is still a fair bit of fluid in his chest cavity his lungs are taking up about 80% of that cavity. The shunts are working. I, on the other hand, look as though I am developing gestational diabetes and this morning the doctor said that he thought I might have a mild degree of polyhydramnios. I don't care how unwell I get because it will all resolve itself after I've had the baby, but polyhydramnios worries me because I have to fly to Sydney to have this baby and that means a plane trip of almost 5 hours' duration. If it all escalates and the baby has to be delivered urgently, I don't know what happens then. The baby's due date is 29 January, but I will probably end up having to go to Sydney a lot earlier than I expected to, while both the baby and I are still reasonably well. My gut feeling is that we'll be meeting this baby some time in December. Hopefully my older kids can at least finish the school year, which ends on 12 December, before we all have to go to Sydney but we'll just have to see. I'm not complaining because I know how lucky I have been so far just to get both of us to this point and if it gets harder, I'll just work harder! I don't care what I have to do. I'm thinking of you all and I'll keep you posted!

Hi catherine
It is great to hear that you and your little one are doing well we will keep praying for you.
Marita

Great news Catherine. Thanks for keeping us posted, sounds positive.

I'm glad to hear that things are going well and improving! We will keep praying!!

Positive thoughts for you and family & bub coming your way from us

Janee Veigel

Hi Catherine!

I am new to this community but I have been reading your story these last couple of days. My wife and I are really hoping that it is going well for you and your family.

We are getting close to 12 December. Do you have any updates?
Take care!

/Martin

Hi Catherine, I just came across this forum and read your story. I had Camden in May and he was born with Hydrops. I too had polyhydramnios and was flown to a larger hospital for delivery. My water broke before I knew anything about the Hydrops and I was actually flown to another hospital because the town I live in doesn't deliver babies under 34 weeks (my son was born at 32 weeks.) I want you to know there was plenty of time from the time my water broke until the time I delivered. It was close to 15 hours. I know our situations are a little different but I hope this gives you hope!

Also, my son is now 6 1/2 months old and doing very well. He had fluid around his heart, lungs, and in his skin. The doctors drained it right away and he has progressively gotten stronger ever since. I will be praying for you. Please keep us updated and let me know if you have any other questions that I could answer.
Kaysie

Arrived in Sydney on 20 December and will be staying here for the duration. According to my last ultrasound in Darwin 10 days ago, there is still some fluid in the baby's chest cavity but the shunts have made a substantial difference. For some reason, I have now also developed Rh antibodies. I will know a lot more this Tuesday (23 December), which is when I am scheduled to see the Sydney doctors. On Tuesday I will be exactly 35 weeks, and I realise how lucky I am to have come this far. I am thinking of you all and will update and post any more information I am given about hydrops on Tuesday after my appointments.

Just wanted to see how you and the baby are doing... how did your last appointment go?

~Carrie

Things seemed OK on 23 December! There is still fluid in the baby's chest cavity (which they term 'pleural effusion') but the shunts have really helped. The body wall swelling and ascites have continued to stay away. I have gestational diabetes, anaemia, polyhydramnios and God knows what else, but it's all small potatoes to me because it's all stuff that won't be an issue once the baby's born. From what I could gather, the baby will definitely be going to an intensive care unit straight after birth and will probably have to have some sort of breathing assistance (I was shown a photo of a baby with a breathing tube who was hooked up to a ventilator). The shunts get clamped off and removed straight after birth, the fluid will almost certainly reaccumulate and then it's a matter of working out what the underlying problem actually is, if they can find one. Apparently in some cases a cause is never found. So they've scheduled a caesarian for 22 January (when I will be 39 weeks - I am 36 weeks now) to give the baby's lungs to get as good as they're going to get, although they also said that there's a chance I won't make it that far because of the polyhydramnios. If I go into labour earlier, they will just have to deliver the baby earlier.

I have absolute confidence in these people. They are the best in their field in Australia, and if things don't go well I know that everyone has done everything they can to help. I can surrender to the outcome knowing that everything humanly possible has been done. There is a lot that will be unknown until after the birth, and I really hope that a cause can be found so that I can add something to the knowledge base of this forum.

I hope 2009 is a bumper year for us all. I'll keep everyone posted; I have another appointment on 6 January so will update then (or before, if there is any news).

Well, we may have an answer with respect to the cause of our baby's hydrops!! On 6 January my husband and I were able to speak with a neonatologist who is one of five neonatologists overseeing the NICU to which our baby will go straight after birth. He said that he is fairly certain that the baby has a condition called congenital chylothorax which affects about 1 in 15,000 pregnancies. It is essentially a disorder affecting lymphatic drainage and it causes fluid to build up in the pleural space. If it goes untreated, it can either resolve in utero spontaneously (which, in our case, it didn't) or it can cause fluid to build up until hydrops results. The shunts that were put in have been effective but haven't resulted in complete resolution of the problem. What the shunts HAVE done is to enable the baby to get to 37.5 weeks' gestation in reasonable shape. The hydrops has been minimised, although there is still chest wall swelling as well as some fluid still in the chest cavity.

We were told that we must expect the baby to be in the NICU for about a month after birth, and that the main problems will involve getting the fluid to stop building up and dealing with the fact that he will have next to no immune system for months. He may well need breathing support for some time. He won't be able to have breast milk or standard formula because they contain long chain fatty acids that will cause his body to keep producing all this fluid. He will have to have all nutrition via a drip. There is the possibility that he will be able to drink a special kind of formula that doesn't contain long chain fatty acids, but if he can't tolerate that then the only option will be for him to continue being drip fed until he is able to tolerate pureed or solid food. So we could be looking at a fairly lengthy hospital stay and then some ongoing feeding issues throughout his early years. On the bright side, the neonatologist did say that if the baby does have congenital chylothorax, his long term prognosis is good. Overall, the news was better than we had expected and we are very grateful.

So now we wait for the scheduled caesarian on 22 January. The baby might decide to come earlier than that due to polyhydramnios. At some point, when I work out how to do it and I have the equipment at my disposal, I'll post my scans so that people can see how things looked at 19 weeks at diagnosis and how things looked following the insertion of the shunts. I am thinking of you all and will keep you posted.

Catherine...
You have no idea how much I am praying for you and your baby. My daughter, Viviana was due on the same day as your son. You are getting all the answers I hoped, dreamed, and prayed for. I am so glad that you outcome so far is so much better than mine.

Just wanted to let you know, I am thinking of you and your baby!

Much love, and many prayers!
~Carrie

Catherine,

Please know that you and your family are in my prayers. I completely understand what you are going through. My son was born with Hydrops due to chylothorax as well. We didn't know that chylothorax was the cause until several weeks after his birth. He had chest tubes in his sides for over a month. If you are interested in my story, I posted one yesterday called Our Little Miracle Chase.

If it is Chylothorax that doesn't resolve in utero, ask your doctors about a drug called Octreotide. They used this on our son and we believe it helped heal his chylothorax. Hopefully it can resolve before your baby is born. Our son has been in the NICU for over 15 weeks and we expect him home within the next 4-5 weeks. I'm glad that you have found out a possible cause for his Hydrops. You may also want your doctors to test your baby for Noonan's Syndrome.. We are awaiting our results. Noonan syndrome is cause for Hydrops at times and causes chylothorax as well.

With the formula concern, our son was on a special formula called Monogen for several weeks (perhaps a month or so) and then transitioned to preemie formula (regular formula you can buy in the stores). The doctors were concerned because fluid could build up again when they transitioned him to regular formula, but it didn't. I hope your story has a happy ending. Please keep us posted. I am definitely thinking of you!

Colleen

hi Catherine,
great news that you have nearly reached 38 weeks gestation, that in itself is a really postive step.
Lachlan also had the chylothoraces and lymphatic drainage problems, I always assumed it was a symptom not a cause, so it was interesting to read your update. Re feeding after birth, he tolerated the transition from TPN to Monagen (short chain FA) to expressed breastmilk very well with no further fluid build up (total of about 3-4 weeks each stage, so I hope things go as smoothly in that dept with your bub too.
Good luck for the 22nd Jan, will be anxiously awaiting updates!

take care xx

Hi Catherine,

My family and I would just like to wish you and your little battler all the best for this week. We know from our own experience (and watching saving babies all too frequently lately) that you have the very best team available looking after you both.

Our thoughts, hearts and prayers are with you.

Love Carol and family

Hi Catherine!

I just read your updates and I can say nothing else then that we hope that everything goes as well as it can. Here in Sweden it's the morning of the 21 january, so I guess that your "due date" is coming up pretty fast.

Simone and I wish the best for you and your family. Good Luck!