Posted by: katedaphne | March 19, 2009

Piling on

Okay ladies, pls give me strength. This has been a long week and today has been awful.

First (but least important) I hurt my back somehow Sunday and all week have been in major pain (as in, severe enough pain to make me throw up, can’t stand, sit, or lie down, etc). Awful. OB gave me a muscle relaxer + extra strength tylenol. Tethered to the couch, the heating pad, and the drugs.

So this week has been a pain, but today was supposed to be good, Level II u/s, find out the sexes, etc.

Well — we are having two girls. Yay!!

BUT — Baby A  (literally baby A, and also A is her first initial) has a very serious congenital heart defect. I am still trying to wrap my head around what it is, what it means, etc. Mike and I are both super freaked out, obviously. We were sent from the peri directly across the street to All Children’s to see a fetal cardiologist, who was able to see us immediately.

The problem is called Latrial Isomerism, and Polysplenia Syndrome. As far as I can tell, some of her organs are flipped right-to-left. Her heart is on the right, her stomach on the left. Should be the reverse. And somehow she may end up with multiple spleens. Stomach is unlikely to be an issue — if it is, it will cause obstructed bowels, which will need to be corrected with surgery soon after birth. The extra spleens are not a big deal either, apparently. But the heart — the right side is not correctly formed, and she has only one ventricle, the left. So far her heart has full function, she got 10/10 on the cardio vascular profile score, so that is very good. Upon birth she will need immediate medication and open-heart surgery, to ensure blood is pumped to the lungs properly. Then at 6 months she will need another surgery, and at 2 years or so another one. (I have the names of all these procedures written down, and lots of confusing diagrams of hearts and veins and shunts, etc. It will take a while to fully understand, let alone be able to explain…)

Each surgery has about a 3-4% mortality rate, IF she is born full term and at a “good weight”, ie, 5.5 pounds or more. If she is premature or too small her chances get substantially worse. Altogether he predicts an 8/10 chance of her coming out of it all pretty well, just like a normal kid.

On the plus side, there appear to be no other issues, no Downs, etc. And Baby M (her first initial)  is just fine. So my first job is to GESTATE. I need to keep these babies in as long as humanly possible, and birth them as large as possible. Doc said to eat 100 grams of protein a day. (!) I will talk to the nurse again tomorrow and try to figure this out. Oh, and I have physical therapy for my back tomorrow too.

We kinda thought 7 IVFs would be enough for any couple to go through — but there is always more. Mike said this afternoon, “you never know what any day is going to bring,” and “life is so precious.” All these IVFs have made us pretty good at handing doctors and hospitals, so I guess we can handle this too. For myself, I am glad it is a problem that has a name, and a known plan of action, and doctors who fix this all the time. The unknown (and so much of IF is unknown) is much harder for me.

We thought we were going to be done with being medical anomalies and were just going to be regular normal people for a while. Yeah, right.

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Responses

  1. Oh Kate, this is just not fair. So many of the women that I’ve watched go through hell to get pregnant have wound up having issues with their pregnancies and/or new babies. How much are we [infertiles] supposed to endure??

    It sounds like you are handling this very well. I will be sending prayers and lots of good thoughts to you and your little girls. I know you will do everything within your power to keep them “baking” as long as humanly possible! As far as extra protein goes, maybe try some Ensure or Boost with extra protein. Perhaps for breakfast or snack? They (especially the Ensure) are actually pretty tasty and may help you get some of that extra protein in without having to devour an entire cow a day. 😉

    Thinking of you and wishing/hoping/praying for everything to be okay!

  2. I will keep all four of you in my prayers and will send up extra-special ones for Baby A. I wish that today had brought nothing but shiny, happy news, but I do feel some relief knowing that her prognosis is good. Still, I can only imagine how worrisome this must all be. Know that I’m thinking of you and your cuties.

  3. Pumpkin Seeds are super high in protein, maybe you could snack on those throughout the day?

    My first thought, as I sit here with tears, is that this is not fair. Enough is enough, but you are correct. IVF does toughen you up. It was the only way I could get them operating on my sons head for 8 hours.

    You are all in my thoughts and prayers. Thank goodness this is fixable and you have a plan. Now go order a side of beef and get eatin’!

  4. That IS a lot to deal with!

    It sounds like your docs have a great plan and you’re in good hands. Wishing all of you the very best.

  5. Oh dear dear dear. What a shock. I suppose it’s good to know so that you can do something about it when she’s born, but its an awful thing to have to know at all.
    You are in my thoughts.

  6. HANG IN THERE!

    I was born with a Congenital Heart Defect (CHD) known as Tricuspid Atresia, which involves the right side of the heart not being correct formed. I’m 42.

    I will not lie to you – you will have to walk a hard road. EVERY time the phone rings, your breath will catch. But a CHD can be survived, and the patient CAN do well. Most of us need lifelong medical care – tests, blood draws, visits to the Cardiologist – but we learn to deal with it.

    I don’t know where you live, but it sounds like you have good doctors. You need to find a GOOD heart hospital – that means a major medical center – and a surgeon who can do this surgery. The surgeon who did your grandfather’s bypass is NOT the surgeon you want. Bypass surgery has nothing to do with Congenital Heart Surgery, so bypass surgeons do not touch your child. NEVER.

    I write a blog about living with a heart defect – Adventures of a Funky Heart!, located at http://tricuspid.wordpress.com/. Head over there, do some reading and learn, and my contact information is on the About the Author page. Contact me if you wish.

    Much love and best of luck;

    Steve

  7. Oh Kate, this is quite a shock. I’m so sorry that you have yet another worry. It sounds like things are very likely to turn out very well, but I’m sorry to hear that the road will be bumpy between here and there. My thoughts and prayers are with you, Mike, A, and M.

  8. I should have read your post last night just throw in one more person sending you all good thoughts and lots of strength. i’m sure Little Miss A is going to be one strong little girl just like you. I worked in a pediatric office (quit after being so jaded and hateful towards welfar and idiots having all these kids while we were spending thousands and couldn’t have 1) one little girl had a completely backwards heart among other things and although she did have alot of surgies to endure she was one of the most good natured likable kids around. I am sorry that you have one more huge worry on your plate when its your own child its just unimaginable but it sounds like you are taking it in and dealing with it, its good to have a name for things and know that there is some sort of plan. Gestate away and eat eat eat!

  9. I have no experience with this, but I can point you to a blogger who has a little girl with Downs, and I know that Sarah Joy has some real challenges with her heart function.

    Perhaps he can? (and you can tell him I sent you).

    http://joewalker.blogs.com/

  10. Here from LFCA…I’m thinking about you and your family. I’m also sending out a lot of hugs.

  11. Here from LFCA. I’m so sorry for everything you’re going through. My brother was born with a major CHD (aortic stenosis) and they didn’t expect him to make it out of his teens, and thought that he’d have to have his valve replaced fairly early in life. He’s now 27, and still has his original heart valve. It sounds like your doctors really have a plan for her. I’m be thinking about you and hoping everything goes well.

  12. Wow, this is such a shock. I’m so sorry that what should have been such an amazing day was tempered with difficult news. It sounds like there is a great plan in place, but I’m sorry that you have to deal with all of this in the first place. Sending you my thoughts and hugs.

  13. Shit. I am so sorry you have to deal with this (after all you’ve managed to endure, plus with a bum back). 8/10 are still hopeful odds, but the whole process is so terribly anxiety inducing.

    You’re right, though: Now your goal is to gestate and give both A and M the best shot you can. 100 grams? You’re going to be mainlining tofu or something!

    I’m sending growy vibes to both your little ones!

  14. (Came through LFCA) I’m so sorry you got this difficult and distressing news on what should have been a happy and reassuring day. I am wishing both babies a calm, healthy and long stay inside you, and wishing Baby A and you smooth sailing through what are sure to be difficult months or even years ahead. May everything turn out the best possible way. Sending you both all my best thoughts and support.

  15. Oh hun…I’m thinking about you.
    ((HUGS))

  16. (((HUGS))) I had the same thoughts about isn’t what I have been through enough when I had my miscarriage. There is always more…always something.

    I wish you, your families, and your little ones the best possible outcome!

    (here through LFCA)

  17. Oh, hon,

    You know my background professionally, I have some idea of what you’re facing for the next few years. I can only imagine just how scary things are right now. If one of my twins had been in a similar situation, I don’t think I would have coped.

    You’re amazingly tough, and I just hate that bad luck of this kind of rare can get you after all you’ve already been through.

    If there’s ever anything I can do…

    J

  18. First off, congrats on your two girls!

    I’m sorry things are perfect with your little A girl. This should never happen to anyone, let alone someone who’s worked this hard and this long. It sounds like you have a very good medical staff behind you. Your doctor sounds quite optimistic about your little one and that is a good sign. Time and more scans will tell you more.

    You’re right. Your job now is to grow those little girls in you for as long as you can!

  19. Oh Kate. Honey. I am so sorry that one of your girls is going to have such a tough beginning. You will get through this. You are one tough bitch and your daughter is going to have some hella fantastic parents helping her fight.

  20. I’m here from LFCA! First, congrats on the girls! Pink stuff is absolutely awesome to buy.

    Secondly, I wanted to let you know that I had a daughter at the end of January and she was born with a brain/skull defect (called an encephalocele) where part of her brain was, well, outside her body. It was previously undiagnosed so it was a shock to us.

    Anyway. That’s not the point of my comment. What I wanted to tell you is that she had to have surgery right away, too. Same mortality rate and all. I know it’s not the same diagnosis, but the fear is.

    If you need someone to talk to about all those scary feelings and stuff, please don’t hesitate. I’m holding you all in my heart today.

  21. Here from LFCA. I’m so sorry about the less than fantastic news. Sending many hopes and positive wishes that you are able to keep those girls in there for a good long while still and that baby A will have the best possible outcome.

  22. Oh, Kate, I’m just catching up. Wow, this is a lot to take. Congratulations on finding out about your two little girls, and I’m sorry for the worrying you have to go through now. All I can say is that, with all that you have been through, you are an incredibly strong woman and you will dig deep into those reserves and deal with this. Many prayers to you and Baby A that all goes according to plan.

  23. My husband and I have had our fair share of bad luck. Up until we “won” the free IVF, I had never won anything in my life. I had even told my husband that if we didn’t have bad luck we wouldn’t have any luck at all. When we found out about the staff infection in his stump I wanted to scream “Not again!” When I talked to other people about it they told me that things would be ok. I wanted to tell them they didn’t know ANYTHING about the hell that our lives have been the last few years and to shut the F*** up if they couldn’t say something compassionate. I was so angry about the unfairness of it all. I don’t have any great moral to my story. I’m not emotionally retarded so I’m not going to promise you everything will be ok. I haven’t been through the type of struggles you have so I can’t say I know your pain. Pretty much the only thing I can offer is sincere empathy at getting the sh*t end of the stick – again. I’m sorry.

  24. Oh hun, I am so sorry that you are having to go through this! I, too, just recently had twin girls (in September) and both of my girls were born with heart defects. One looks as though it is healing on it’s own (a VSD), but my baby B has a mal-formed heart valve that will require surgery later in life. I’ll never forget how MY heart stopped when I got that news. But, it is what it is and we have made peace with it – you will too.

    Sending you ((hugs))

  25. Oh, man. Not fair doesn’t even begin to touch it. The universe has screwed this up royally, but there’s no complaint department that I know of (anyone else?). But (digging for some silver lining at the bottom of the bucket of sh*t, here) at least the docs know of her condition, at least it’s treatable, and at least her odds are really pretty good. It’s a long road for all of you, but it could be so much worse. As you know in spades, with all you’ve been through already.

    You know, I don’t think there’s any such thing as “normal”, not really. There’s just different levels of “eventful”. Some people’s lives are just more boring than others…… I’m hoping you get a whole lot of boring soon.

    Take it easy, eat your buns off and hang in there. I’ll keep all of you in my thoughts.

  26. I just found your blog through LFCA. I am so sorry to hear that your Baby A has LAI. My daughter Molly who was born and died last year also had LAI, but she also had a lot of other rare and severe congenital heart defects that led to her premature death. Anyway, I wrote about her diagnosis, prognosis and short life extensively on my blog last year, which you can check out if you want. I also started a Carepage for Molly that helped me to connect with other “Heart Families” who were extremely helpful and supportive on our journey with our baby girl. You can search on CarePages by key terms and find other families with babies/children with LAI. I hope this helps. You and your family, especially your twins will be in my thoughts and prayers.


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