Please Read!!! Pregnancy update w/St. Jude Mechanical Valve

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A

Anthony

Hi everyone. Willow is now in her 25th week of pregnancy. Now if you haven't been following our previous post read them to get up to speed.

As you already know Willow is on her second pregnancy with a St. Jude Mitral Valve. Okay, she started on Lovenox then onto Coumadin with the plan to switch to Heprin prior to delivery. Willow also has a bicorniate uterus. This means the baby can only grow in half of a uterus. When Willow had our first son he was born at 1 pound 12 ounces. He was 28 weeks. He actually stopped growing at 26 weeks. She had pre-eclampsia and the beginnings of Healt Syndrome (Organs in body shut down.) The baby was in fetal distress and so they did a C-Section and delivered him. Then they found a clott on Willow's valve and a week after a C-Section she had heart surgery to replace the valve. This was her third heart surgery. After having preclampsia the risks again are very high. So after much research Willow and I found that the reason for the clott was poor anticoagulation of lovenox. As many of you know Lovenox was band by the FDA for a short period. Willow was one of the reasons why. We think Lovenox is still the correct choice through the first trimester as long as the hospital and doctors can measure the FACTOR X's and know the proper dosage. The proper dosage is not based on weight it's based on factor X's and in a minute you will get my point on this.

Most hospitals can't. We did research and found Dr. Elkayam of USC. They have the ability to do same day results and he writes the majority of papers for the American Heart Association on valves in pregancy. To transfer to heprin or lovenox from coumadin must be done in a hospital. Willow was on lovenox for the firs 17 weeks of her pregnancy and then transfered back onto coumadin. We had and echo done at UCLA by the top cardiologist, who is also the head of the Heart Congenital Program and he gave us the thumbs up. She did not have a clott. (yeah) Because we were off lovenox and new that UCLA could monitor the coumadin and heprin for delivery we chose them for the second half of the pregnancy. We got the very best OB in the country. Dr. Tabsh. He was advisor to senior President Bush and is the head of the UCLA OB program. He then got the very best hematologist at UCLA to monitor the change over to heprin. We then requested to have Dr. Elkayam and his team as additional consultants. We probably have 20 to 30 doctors consulting on this case.

Okay UCLA is ranked #1 hospital in the west. We have the very best doctors and they admitted to us they have never handled a mitral valve pregnancy. They also can not do factor X's for same day results.

Willow started having contractions last week and was hospitalized. Because the baby could hemorage if delivered on coumadin they decided to put her on heprin. Now they thought that they could just give her shots. I told them that they needed to put her on an pump. Doctor Elkayam fealt the same way. UCLA agreed and did it. They figured a change over would be easy. Well guess what her levels have been all over the place. She is suppose to be at about 60-70 on these levels. She should never go past 90. Well last night after the change she was at 180. AAARRRGG. But then Dr. Tabsh wanted to try a different approach to the dosage and today she is finally between 60-70. Now many of them thought the change over would be easy and I was being too cautious with the pump. They now realize that the pump was the only way to go. Okay, they have given her medications to stop the contractions and the cervix hasn't opened. She still has contractions but they are much more controlled. Her blood pressure is fine.

Great news! The baby looks great. They did several ultra sounds and tests. Our baby girl shows no defects. Is coumadin right after the first tremester? Yes, yes, yes. Willow did great on coumadin. Lovenox and Heprin are much harder to monitor and control. Willow is probably going to be at UCLA the rest of her pregnancy. But the baby and her so far are doing well.

Take Care,
Anthony
 
Anthony,

So very happy to hear from you and that Willow is doing so well. Sorry to hear about the early contractions but, hopefully, things will settle down and Willow can carry a bit longer.

Please take care and give Willow our best. Still praying for you both.
 
I'm so glad you posted! You and Willow have been in my thoughts. I'm glad to read that this are going well overall. Give Willow my best and know that I'm praying for you both, your son and your baby girl.
 
Anthony, thanks for posting and the update. I'm glad to hear that Willow and your baby girl are doing good. It certainly sounds like you all have all the best doctors and I'm glad you're vocal about your experiences with the Lovenox, Coumadin, and Heparin. I'll be keeping you all in my thoughts and prayers. Don't be a stranger, and keep us posted on how things are going. LINDA
 
Anthony,
I'm very glad that your wife and baby are doing well through the pregnancy.
Please keep us updated.
Mary
 
we are keeping up. Thanks for this update. It sounds like y'all have been walking a very tight line throughout. Congratulations that your beautiful little princess is perfect.

P.S. I like the way you say 'WE' instead of 'she' - 'or my wife'. You are both in this together. Good for you.
 
Wow

Wow

I just read back through your posts - you all have had quite a journey!!

I am glad that you have doctors willing and able to help take good care of Willow and the baby(s). I wish you the best of luck - I know what a blessing those kids are - I cannot imagine and existance without mine.

Best of luck to all of you!!!

(PS - I really love the name Willow!)
 
I have been praying for Willow since your first posts..
I am so very glad that you posted and brought us up to date.
You have one amazing wife!! Willow is brave, courageous, and must have a heart of gold to be willing to do all of this to bring forth life!!
I will continue to pray for your family as things are progressing. Please keep us updated as you can:)
 
Anthony, thanks for posting. I've been wondering how she was doing. I'm also wondering about Karen7 and her pregnancy. Has anyone heard from her? It doesn't look like she's posted for well over a month and a half.

Give Willow my best, Anthony.
 
Thanks for the update Anthony. My prayers are with you all! Hoping things are progressing well.
 
hi anthony,
you sound so positive and looks like willow is being well taken care of.
you are all still in our thoughts and prayers.
please continue to let us know how things go.
all the best, sylvia
 
Hi Anthony,

Thanks for sharing your experience. Though it is too late for myself. My child is 10. Did not find much supporting evidence that excited us to go forward with a second post MVR 8-9 years ago. I do feel your story may help others make a sound decision.

All the best to Willow and family.:)
 
Willow is now going into her 25-26 week. She will be at the hospital until the delivery. The baby weighs about 1 pound 12 ounces. This is good news. The baby is growing well. The cardiologist came in today. He was pleased with Willow's anticoagulation levels and felt that Willow is fortunate to have come into the hospital earlier due to the possibility of pre eclampsia. Now they can control the contractions which will help prevent early delivery. We are all hoping to get to 32 weeks. At that point we will decide what to do. We won't take the baby past 35 weeks. So I figure we have 7 more weeks to go before a scheduled c-section. Willow is in good spirits.

I did want to mention that heprin is very hard to control. Willow is on the pump. I would be very hesitant to ever consider sub Q as an alternative. The more Willow and I talk the more we feel strongly that Lovenox is the only way to fly until the second trimester. But I wouldn't suggest it without the ability to do same day Anti X/Factor X's. Coumadin was great for Willow in the second trimester. If it wasn't for the early contractions she would stay on it until before the planned delivery. At which point she would go on a heprin pump. Monitoring Willow on an IV is not easy and Sub Q is very scary in my opinion.
Thanks for your prayers. I hope others can learn from our experiences. By the way thanks for pointing out that I am positive. God has blessed us tremendously and we will soon have a beautiful baby girl.
 
Do keep us posted on Willow and baby. Glad to hear that you found good medical care.

Our daughter (post mitral valve repair patient) is expecting her first baby in early November. So far, Mother and baby are healthy. In a few weeks, she will have another echo at UCLA.
 
Been thinking about you guys!

Been thinking about you guys!

As my husband and I prepare to have more consultations with doctors regarding me carrying a pregnancy, I've been thinking about you and Willow and that baby girl alot. My hypertension specialist told me "it's theoretically possible but don't do it." He also said I'd be hard pressed to find anyone on the East coast willing to do the approach that you two have chosen for the 2nd pregnancy. I may contact your docs to see if they have any East Coast collegagues to refer me to. Give my best to Willow.

Lisa (aka Ticky)
 
Ticky,
I'm sorry to hear that your hypertension specialist doesn't like our approach. What specifically about it doesn't he like? What approach would he take? The American Heart Association agrees with us. I have met too many doctors that are uneducated about mitral valve pregancies. Almost the entire U.S.

UCLA has been ranked number one in the west coast for 13 year. They are also ranked number 5 in the nation this year. The director of the UCLA OBGYN is our doctor. His name is Doctor Tabsh. He has been consultant to the President of the United states for OB care. Plus Dr. Elkyam of USC (Cardiology) has been doing world wide research on this. He is the only one that has the true data. Only trust the truth. The truth is not a doctors opinion. It's the facts. I'm sure Dr. Elkyam can lead you to the proper doctors. He is most likely to know the ones you should work with.

Remember proof is in the pudding. My wife is now on her 29-30 week of pregancy. She's been in the hospital since 25 weeks due to premature contractions. When we went there the hematologist said that they could stabalize Willow on heparin sub Q. Because of potential early delivery we agreed to this if they could first get her stable on an IV. The doctors preferred to keep us on coumadin but if early delivery occured the baby could hemorage on coumadin during the delivery. So we agreed to this under consultations of all involved with the arrangement that first they would need to start her on the IV. Well, they never took her off the IV. They feel like it's too risky and unstable. Surprise we figured this would happen. Yet Willow did great on lovenox with proper monitoring. However lovenox takes 12 hours to reverse. This of course isn't and option with Willow at this time. So she is in the hospital on an IV drip of heparin until the end of the pregancy. The ultra sounds show a perfectly healthy baby with zero defects.

My point is be careful who you take advice from. Our approach of lovenox the first trimester (with very close monitoring) then coumadin to the end of the pregancy is soon going to be the standard approach by the American Heart Association. Right now they recommend not ever going off coumadin. All research shows that the likelyhood of a valve clot on coumadin is minimal. But on heparin it's very high. I believe over 50% according to documented cases and research that I've read. The problem with lovenox is the hospitals inability to check it same day. (Driving drunk is never a good idea.) Why is it that hospitals give lovenox but don't have the machine to do the Anti X/Factor X's? This MUST change! A transfer to heprin should be done two weeks before scheduled delivery. 35 weeks would be an optimal time to deliver.

I am so frustred at the lack of knowledge doctors have in regards to lovenox and this type of pregancy. If a doctor says they can keep you safe on Sub Q heparin the entire pregancy they are not experienced in this. The key here is to ask them if they have ever had a successful pregnancy with valve patients similar to you. Be very careful. Willow and I have decided to write a book about our experiences. USC is going to present this pregancy as a perfect example of proper care for valve patients. Your doctor obviously has not done the research. Check valvesinpregnancy.net Read a lot on it. Send me a private message and I can get you the doctors information. RRRRRR the errogance in regards to this type of pregancy is beyond my understanding. I guess that's why they call it the "practice of medicine."

Please make sure you understand the risks involved here. This is not an easy road. You will need to check the Factor X's twice a day three times a week. Hospitalization for transfer is a must. And a supportive, brilliant team of doctors is the only way to fly.

I cannot tell you how many times doctors have tried to tell us we were doing it wrong then after research and time with us they agree completely. We've seen over thirty specialty doctors in this pregnancy. Believe me if they understood the risks they would not suggest any other approach then the one we are doing.
 
Anthony,
Good to see your post. What great news that Willow is now at 29-30 weeks! Sending you my best wishes, and please post when the little one arrives!
 
How exciting that Willow is near 30weeks!!
Sending both of you my best!!
and will continue praying!

Keep us updated as you can!
 
I'm glad to hear that Willow is doing well and has made it successfully to the 30th week of pregnancy.
However I question how many patients have the resources to undergo such a lengthy hospitalization (wages lost from the job if the mother is working, hospitalization costs (13 weeks or more), drugs and medications, and the cost for 30 specialist consultations). Perhaps that is why Ticky's physician is not in favor of it.

It is one thing when you find yourself in a pregnancy where you must take the measures you and Willow have taken to suppport the pregnancy, and another, IMHO, where you intentionally become pregnant knowing the substantial costs and risks involved.

Best wishes as you continue along your journey.
Mary
 
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