Saturday, October 22, 2011

Not the post I wanted to write (very long)

Once again, I apologize for not updating earlier; it’s been a really difficult week.


Last Thursday (9ish days ago), I arrived at my ultrasound and appointment with the perinatologist, ignorant, at best. I expected the standard detailed ultrasound, confirmation of genders, and had then planned to spend the remainder of the day with relatives visiting from out of town. That’s not what happened.


The ultrasound started as usual, lots of measuring little bones, counting bones in tiny pinkies, looking at the organs, and yes, confirming genders.


Baby A is a BOY!

Baby B is a GIRL!


Thinking back, I do remember noticing some blood flow irregularities on Baby A’s scan, but each time I’d start to concentrate on what I thought I saw, the tech would move the transducer, begin to talk about other organs, etc. I did say something about the lack of space, which she said was due to a contraction. She followed that by saying it wasn’t a big deal. I was surprised by the clarity of the ultrasound. She said they are the newest and best machines in the world, and went on to say how lucky the hospital is to have three of them, words that would later haunt me. An hour later, it was time to do the first cervical length ultrasound. It was like an IVF appointment all over again. She had to redo it later, since I was having another contraction.


My perinatologist entered the room, started scanning me again, looked at the hundreds of images the tech had taken, then said that he was “concerned about Baby A’s heart.” At first I wasn’t worried, then more people entered the room, and my doctor said he would explain what was happening, and draw me some pictures. A nurse walked over and asked if there was anyone she could call. Then I knew, it was serious. The tears started to fall. Pictures were drawn, more scanning, then the recommendation of an emergency amniocentesis, on both babies. I called my parents to let them know what was happening, and ask for prayers.


More people entered the room, supplies were brought in, and I was prepped for the amnio. Having worked in surgery for so long, I carefully watched my doctor sterilize my stomach. Good technique. The amnio hurt (probably the 1000s of heparin injections and subsequent scar tissue), but was over fairly quickly. In addition to the amnio, he ordered several blood tests. They are testing for “anything and everything” at this point. There were questions about whether Cystic Fibrosis runs on either side of our families, to my knowledge, it doesn’t. They are testing that too.


Then it was time for more discussions. It all seems like yesterday, but also so long ago, so I’ll try to remember what was said.


I will not be allowed to deliver at my chosen hospital, or with the high risk OB I want, and have worked with during both pregnancies. The baby will need open heart surgery within days, if not hours of birth. This followed by weeks, maybe months, in intensive care. I’ve been referred to a pediatric cardiologist, and he will do additional testing, and provide more information. I see him on November 1. They didn’t want to schedule anything sooner, since the babies are still so small.


I’m not going to identify the defect, until it’s confirmed by the pediatric cardiologist. When I ask the perinatologist what could have caused it, he said there’s a higher risk in IVF babies, twins, and sometimes just really bad luck, and that we’ll never know which one it was. I’ve also learned that there’s a higher rate of this defect in Caucasian males, versus females. My doctor spent over four hours with me, which was nice, though this is definitely a very serious condition, because four hours with a perinatologist is unheard of.


The following Monday, I had an appointment with my high risk OB. She walked into the room and just hugged me. The appointment was a lot of hugs, and a lot of tears. I’ve lost weight, and she said that while she understands that I don’t have an appetite, it’s dangerous to lose weight, especially with multiples. She suggested liquid protein shakes, anything to get some calories.


When I told her that the perinatologist said I wouldn’t be able to deliver with her, she confirmed it. I have to be at a university hospital with a pediatric cardiothoracic surgeon. She said if the baby were to be born in this area, they’d fly him to the other hospital (a 4+ hour drive).


Even though I’ve always known her to be very pro breastfeeding, she recommended that I not even try this time. I had so many problems with Kate, and with a critically ill baby, it will just be too much stress. Plus, there’s no way to run in and out of the intensive care unit to feed the other baby.


During the appointment, she asked if I’d started searching for a nanny, yet. She said that if I write something up (job description, situation), she’ll make sure it’s posted in the NICUs. She said even if we don’t get an active NICU nurse, they usually stay in touch with former coworkers, and someone might be looking for a part-time job. She said especially in this situation, who better than a NICU nurse as our nanny.


Obviously it’s for the “team” at Children’s and the University to decide, but she thinks they’ll want me to move to the hospital at 34 weeks. Again, it’s up to the other specialists, but I’ll probably start regular appointments with the “team” before Thanksgiving. Wonderful, 4+hour drives, in the Midwest, in the winter.


My high risk OB does an ultrasound every other week. I told her that I just wanted her to do the scan, and tell me that she doesn’t see what the perinatologist saw. She said his machine is much better, and that he sounded “very sure” of the diagnosis when he called her. Again, a lot of hugs, a lot of tears.


Preliminary amniocentesis results (FISH)


The initial amnio results were scheduled to be back on Monday, but I had to wait until Tuesday. The MFM nurses were out (one had a family emergency) and my doctor was in another city learning to do “in utero transfusions on twins.” On Tuesday I met the genetic counselor to discuss the results. The initial amnio tests chromosomes 13, 18, 21, X, Y. So far, everything has come back normal, and there is definitely both a boy and a girl. The genetic counselor said the results (minus the gender results) could still change, but generally they don’t. We should have the remaining results next week. My doctor ordered an additional test called 22q; it’s not back, either. For now, it looks like this is ‘just’ a life-threatening heart defect.


I will keep you updated as I get more information. Prayers and good thoughts are very much appreciated. I’m still in shock.

30 comments:

  1. Oh, C, I'm so sorry to read this. I'll be praying for you and both babies. *hugs*

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  2. *big hugs* I have no idea what to say, except that I am thinking of you and your family. I'm also hoping for the best you can get.

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  3. I'm so sorry that you're having to go through this. **hugs** It sounds like you have the very best of care and I have faith that this will make a huge difference. I'll be keeping your family in my t&p's.

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  4. Prayers and hugs are coming from Mozambique to you and your family. It sounds like you have some great professionals and people on your team there. Hang in there, get your rest, and eat so those babies can be as strong as absolutely possible!

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  5. I am so sorry. Sending lots of hugs and prayers your way.

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  6. I have been following along, especially since I have a Kate :). First, congratulations on your BOY and GIRL! Secondly, words cannot express the sadness I feel for you. Nobody should have to deal with this. You should be enjoying your pregnancy. So again, I am sorry. My prayers are sent for you, Kate and your twins...

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  7. I'm so sorry this is happening. It sounds
    Like a nightmare. I'm
    Glad you had your favorite docs there with you. I hope you have support there and people to count on. Please eat your favorite food in large quantities. Does this mean you are twenty weeks?
    Big hugs to you. I'm so sorry you have to deal with this. Take care:) not sure which midwest city you're traveling to but if it's Chicago give me a holler. Xxxoooxx

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  8. Oh wow, how scary! Thinking of you during this time!

    www.brandysheaif.blogspot.com

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  9. Oh my dear friend...my heart goes out to you and you'll be in my thoughts and prayers constantly. Please, please, please try and be positive, i know it's almost impossible but do all you can. The little fighter is doing his best. Much much love, Fran

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  10. oh C, I am so so sorry to read this news. sending you all my thoughts as you wait for more news and a confirmation of the diagnosis. I'm really sorry you're facing this enormous challenge.

    Mo

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  11. Just a "random" twin mama here, sending your family my prayers.

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  12. I'm so sorry to hear of all that you're currently going through and will continue to go through for quite a while to come.

    It's clear that you're in the best possible hands.

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  13. I'm so sorry to hear this news but I'm so glad that you have such great doctors looking out for you. I'll be praying for you and your little ones.

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  14. Keeping your family in my prayers. I can't imagine having to go through all this. I pray that all will be well. Sounds like you are in good hands with your dr's. ((Hugs))

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  15. I am so sorry to read this and hear about what you're going through. You and your precious babies are in my prayers.

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  16. I am glad you have a good team but so sorry that you have to deal with all of this. I have been thrilled for you throughout all of this and I will be thinking of you often in the days to come. I hope that there is a good resolution in all of this for your little guy. Sending you much love from DC.

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  17. I am so sorry to read your news. So many prayers to you and your little ones. I will be rooting for your little guy.

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  18. I'm so sorry to hear this news.. I'm thinking of you all xxx

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  19. That is very scary and I am a NICU nurse. If you feel strongly about breastfeeding, you can always pump and give a bottle to the healthy baby while they give the Breastmilk to your son via his feeding tube when he is able to begin feeds. It will be more time consuming obviously as you aren't just putting both babies to breast, bit it is the best food for the babies and I wanted you to know you had another option. No pressure from me either way-trust me. Our son didn't nurse well and I pumped for 10 months. Not sure I will be as dedicated with our second. As for the cardiac defect, you really do want a university with a pediatric cardiac surgeon. I am praying hard for you and your babies. Please take it easy and find some relaxation techniques you find useful as this is going to be a roller coaster ride. Big hugs for you.

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  20. I'm so sorry to read this. My daughter was misdiagnosed at birth with one genetic disorder and then a few days later with another (which happened to be the 22q deletion). She had neither issue, as it turned out just a random case of craniosynostosis (non-syndromic). When she was correctly dx at age 14 months (misdiagnosis and being overseas held things up), they did a genetic work-up and absolutely nothing was wrong with her that plastic /neurosurgery couldn't fix.

    I can't imagine how stressful this situation is, but so glad the tests are being completed now and so glad you have such a good team. Thinking of all of you!

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  21. I am so sorry you're going through this. I'm keeping you and your family in my prayers.

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  22. So sorry to hear this. We're keeping you in our thoughts and prayers.

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  23. Here from LFCA.
    I'm so sorry to hear this news. Big hug!

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  24. Oh, dear, that's not good news. I'm so glad you have a competent team of docs to help you through this, as well as the personal support system (including your bloggy friends here!).

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  25. I'm delurking just to tell you I'm thinking of you and your family and saying lots of prayers.

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  26. I am very sorry to hear this. I am thinking of you and your family. Lots of hugs.

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  27. Here from LFCA and just wanted to reach out from one heart mom to another. My little guy (now 19 months old) was born with Transposition of the Great Arteries and multiple VSD's. My heart goes out to you - especially as you're dealing with your cardiac diagnosis with the additional aspect of twins. I will keep you in my thoughts. My blog is no longer active, but if you want to talk to one who's a little further down the road, you can e-mail me at callie303 gmail . com.

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  28. Oh sweety I'm so sorry and scared to be reading this, but I know one thing from your blog, and it's that you are a strong woman. You have been through a lot and I know you will go through this as well.. It seems like you're in very good care, and that they are taking all precautions incase you'll need the extra care.
    I'm happy that the amnio came back normal, and I'm still kind of hoping that what the perinatologist saw was a mistake since your high risk OB couldn't see it. Assuming what he said is right (which I pray it isn't) you are very lucky to have caught it at such an early stage! Imagine others who aren't seeing a high risk OB or a perinatologist, they would have completely missed this and ended up with a much worse prognosis!
    I'm sending you lots of thought and prayers and hope your little one's heart becomes stronger and beats everyone's expectations!

    Lots of virtual hugs and kisses xoxoxoxo Stay strong, we're here for you!

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