Hopeful Hearts

Hi,
Firstly, thanks for all the great posts on here. I learn heaps from reading this forum. I haven't started a post for awhile but wanted to give an update, share my story and ask as couple of questions. This is my story to date:
8 weeks - Had some bleeding and found out I was having twins. Twin B measured a week behind and I was told I would lose it by 12 weeks.
12 weeks - Both still kicking on but Twin B was identified as having an omphalace (umbilical hernia) and was still measuring behind. Told that Trisomy 18 was likely and that I was still going to lose her in utero or just after birth. Was told by "Dr" I should terminate Twin B for the sake of Twin A.
13 weeks - Had a CVS (not because we were considering termination, but because I needed to be prepared for what was to come). Told Twin B may also have a heart defect.
14 weeks - Results of CVS. No chromosonal disorder detect!! Found out Twin B was a girl. Yay! Di/Di twins. Decided to switch perinatalist as mine was completely unprofessional and put us through hell on a whim!
18 weeks - Both girls (yep the other one is a girl too!) ultrasound showed both were growing in relation to each other, but Twin B definately had a VSD (or hole in the heart).
20 weeks - Further examination of Twin B's heart showed that there were further complications. We were sent to see a cardiologist.
21 weeks - The cardiologist told us Twin B had multiple heart defects the main being that half her heart was underveloped and basically working off one pump. We were told we need to deliver at a different hospital so she can be transfered straight next dorr to a children's hospital where she will undergo heart surgery. She will have heart surgery 4 times before she is four and we were given a 75% chance of survival.
22 weeks - Names for our girls Penelope Jane (Twin A) and Rosemary Kathleen (Twin B).
Scans every two weeks since have shown that both are developing (other then the heart) well and that they are stiill measuring a week apart.
29 weeks - Steriod shots. Visit to the cardiologist for a second look - can't give us a final diagnosis until she is born. Went to the hospitals and was taken through NICU. Told I wouldn't be able to see Rosemary until at least 10 hours after my c-section. :angry:
30 weeks today - YAY!!! Didn't think I would make it this far. :banana:

I just wanted to share my story to date to let others know that there is always hope. I didn't think I would have both my girls at 12 weeks but here I am at 30. I am still very scared about what is to come and those first few weeks after they are born. I feel like as long as I am carrying them they will be safe. (At the same time I kind of want them out as I feel like a whale and don't think I can get any bigger!)

Just wondering....
Is there anyone else around whose twin/s have been diagnosed with a heart defect in utero?
Secondly, I was told (by a lactaion consultant) I should start hand expressing colustrum at 34 weeks if ok with my ob to have on hand for Rosemary when she is moved to the children's hospital. Has anyone expressed prior to delivery or have you been told to or know anything about this?
Lastly, please keep my girls in your prayers. I just want to hold them both in my arms and bring them both home to play with their big sister. :itwins:

Thanks for listening. Just needed to share my story as I am feeling a bit alone at the moment. :hug:

Kittymumxx

 

Oh, kittymum, I can't even begin to imagine what you are going through, but I just wanted to send you hugs :hug: and I will pray for the best possible outcome for both your sweet girls. I wish I had answers for your questions. Great job keeping them cooking as we all know the more time spent with mom, the better off they will be. Hold on to hope and try to keep your thoughts positive. Please keep us updated and know that we are thinking of you. :hug: :hug:

 

Wow! What an amazing story. I am so happy you have made it this far and that you have good medical care to monitor Rosemary's heart condition as well as can be. By the way, I love the names you picked out! : ) As far as the expressing of the colostrum, I didn't know you could express before delivery because I thought that would cause contractions. Maybe someone in the breastfeeding forum would know or have some references for you.

Take care!

 

Wow- what a rollercoaster! I'm so happy you've made it so far in your pregnancy. I'll keep your girls in my prayers!

 

I most definitely will be praying for your family.

 

QUOTE(kittymum @ Feb 15 2009, 11:04 AM) [snapback]1190488[/snapback]
Just wondering....
Is there anyone else around whose twin/s have been diagnosed with a heart defect in utero?
Thanks for listening. Just needed to share my story as I am feeling a bit alone at the moment. :hug:

Kittymumxx


First off .. my prayers are with you and your girls ! What a roller coaster of emotions. I'm sorry its been so hectic for you .. but very happy to see you've made it to 30 weeks !

Second .. YES .. I had one of my twins diagnosed with a heart defect in utero. Jayden was diagnosed with Tetralogy of Fallot at about 20 weeks and were referred to a pedi cardiologist. I had to deliver my twins in Boston's Brigham and Womans because its right next door to Boston Childrens Hospital where they had a team ready to examine and evaluate Jayden right away.
He had open heart surgery at 12 weeks and at 4 1/2 is doing great ! He does, however, have only one working ventricle and will need replacement surgery at some point .. but you would never know it to see him right now.
I'm not sure what your baby has been diagnosed with .. but I can tell you I know how scary it is. Please keep positive .. there is so much they can do for these children !

 

Thanks for sharing your story. You have sure been on a whirlwind of a ride. :hug:

 

wow, you have been on a roller coaster for sure. Sorry to hear about baby b i send all my best wishes to you and your family

 

I haven't been following your pregnancy, but just read your thread. Congratulations on finding a Peri who's more competent than your original doc! :hug:

We just had a guest who's son is 5 and heart is being pumped by one valve and has undergone many many surgeries for it as well. They have no idea how long they will have their son around, but they are just enjoying him and helping him live his live to the fullest! He is an active little boy who's happy and full of life! I hope you have a good outcome for your family!! :hug:

 

So glad that things seem to be going as well as possible right now for your little girls. None of my babies (so far) have been diagnosed with a heart defect in utero, although I always get very careful ultrasounds as I was born with a heart defect (ASD... similar to your little one's VSD, except in a different part of the heart). Just wanted to give you any assurance I could - I had open heart surgery when I was little, but am now 32. I don't even need to see a cardiologist anymore... except for every "major life event." My prayers and thoughts are with you for happy, healthy little girls. Also, glad you found a better doctor early on!

 

Hi there, Well I see where your little girl gets her strength from. :FIFblush: It is an awesome testiment how far you have come along. I believe that the story does not end there...I believe your little girl will have a full recovery- possibly no heart problems will be detected when she is born. I have had my share of concerns which in turn caused me to run straight to the alter. I was told to purchase this book titled Supernatural Childbirth. Instead of hearing & dwelling on the stuff that causes one to worry. This book has confessions to make over your belly for each stage in pregnancy. I know you are almost at the finish mark of your pregnancy- but who knows what can supernaturally happen. God Bless. :grouphug:

 

What a lovely positive story to hear.

I would for sure check about expressing the colostrum as I was always told that could induce labour so check with ur doctor 1st.

 

Many prayers and positive thoughts.... what an inspiring story!

 

:hug: My thoughts are with you. What a story. :hug:

 

Wow- you are so brave! I am so happy for you that your girls are growing and you are now 30 weeks! I have no info to share but I wanted you to know that you are in my thoughts and prayers! Keep up the great work!

 

My little boy has Pulmonary Stenosis, which was diagnosed after birth...not nearly as major as VSD, but everytime I go to the cardiologist, we meet another fantastic family with a teenager sitting there who had undergone several surgeries and were now perfectly healthy, they were just in for a routine check up...piercings, black t-shirts and all.

 

You and your family will definitely be in my thoughts. I hope you can find some great support to help you through all of this. Sounds like you are coming right along and doing a great job! keep us posted.

 

Thanks for sharing the story with such great detail and cheers to not giving up :drinks:

 

I have heard of hand expressing colustrum prior to delivery. It is actually quite tricky to do and not everyone will be able to. I think nipple stimulation will only kickstart labour if it is for a prolonged period of time (like on and off over a couple of hours) but I would definitely check this out before trying. Best wishes for your 2 little girls. Will you call them Rosie and Penny? (2 of my fave names BTW)

 

HI girls,

Thanks for your kind responses and thoughts. I was very reflective when I wrote this as I was so proud to have made it to 30 weeks. At times I didn't think I would make it this far!

I am glad to hear that other "heart baby's" are doing well. (eg. Moodyzblu and faerieprncs). Rosie (yes, we will be calling them Rosie and Penny) has a number of complications (VSD, underdeveloped right ventrice, possible pulmonary stenosis and transposition of the great arteries). I am more and more positve every day we move forward that I will be bringing them both home. I can now see some light at the end of the tunnel where at the start of this I could only see gloom. I want other pregnant mums that are told there babies may not make it to have hope and trust in their little ones. I know my girls are strong little fighters and this is only the beginning of many, many years to come. I am just hoping I have the strength and energy to cope with a newborn, a critically ill newborn and a two and a half year old! I think my greatest fear is how I am going to meet the needs of all my girls, not just Rosie.

I am currently doing some more research on the colustrum expressing. I am hesitatant as I have read it can spur labour. I will talk to my ob and see what he says and keep you posted. Thanks for your answers to this.

I will keep you all updated. Every day is a milestone here so you will will surely hear me celebrating as we make it a week further down the track.

Thanks again for being such a supportive and informative community. I don't not feel so alone knowing you guys are experiencing the ups and downs of a multiple birth!

:hug: Kittymum xxxxxx

 

My prayers are definitely with you and your lil ones! I admire your strength through this and how you didn't just take your 1st peri's advice. Just watch as your little Rosie grows up to be somethin extra special! Keep up the good work girl!