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    Feeling Better About Everything

    Filed Under from the heart, life changes, new things, plans, pregnancy, small happinesses 

    I must admit that on the day we learned about our baby’s heart condition, I just about had a nervous breakdown. For several hours, I felt like my whole self was being gulped down by the fear of giving birth to a baby, only to watch her die shortly after. But the DH and I turned to each other and I let him know all my worst thoughts, and of course we comforted each other. After most of the tears were shed, we both set down and started doing the research.

    And now we are feeling optimistic. Worried, yes. Unsure of the hospital experience, yes. Would rather our baby-to-be not have a deadly, congenital heart defect, yes. But, within 24 hours, we’d learned a lot more about HLHS, and figured out the best facilities to go to, the best surgeon for this condition in our area, and the current survival rates. First and foremost, we are so fortunate to be having this child in 2008 and not 25 years ago when the mortality rate was 100%. Advancements in the surgeries performed and the pain management following them have been instrumental in raising the survival rate from 50/50 just a decade ago to 75% today. And the full organ scan ultrasound (performed around week 20) led to early detection, which improves her odds even more. We like those numbers.

    The nicest thing is knowing that she is safe and distress-free in utero, so I no longer complain when she gives me heartburn or kicks me in the ribs, or rams her head into my pelvis, or attempts to perform back flips.  I’m also no longer hoping she’ll be a week or two early because I want her to get fat and strong. Anxiety about my own weight gain (now 48 pounds) is out the window. Seriously, a lot of things no longer matter at this point.

    Over the next two weeks we’ll be visiting with the surgeon, cardiologist, and neonatal team at Oregon Health Sciences University (OHSU). We only live about 20 minutes away, so I’d prefer that facility. Unless there is a big difference between successful surgeries there and, say, Ann Arbor, we’ll probably go there. We had a frustrating experience with the initial cardiologist we’ve been seeing - we think he is withholding information from us (including the name of the condition, and the severity of it - he told us in early July that “it’s not lethal”) so that HE can make all of the decisions, and perform the surgery. However, although the DH wants to file a complaint about him, we are not getting hung up on that. My midwives at the waterbirth center I’ve been going to have been great, and are working with OHSU. It’s still up in the air where I’ll be giving birth, but they are supportive of whatever is best for baby’s health.

    So … we shall see! For now, we are seeing the bright sides of things. I can’t speak for my state of mind later, once she is in hospital hooked up to IVs, machines, etc. but I will cross that bridge when I get to it.

    As an aside, this whole thing has brought up a lot of stuff for me:

    And every day I wonder, “what am I made of?” The DH and I have both lived fairly trauma-free lives. I knew that wasn’t likely to last forever - that we as much as anyone are subject to chance. And though I would have preferred our first big life challenge not involve our little innocent, I remember Nietzsche’s words, “that which does not kill us makes us stronger.” I don’t know what will happen, but I’m hoping that my belief in the uncertainty of existence means that even when our most well thought out plans are foiled by chance, that we are not broken down, but able to become more mindful, compassionate, and clear-eyed. Who knows what the future holds!

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    11 Responses to “Feeling Better About Everything”

    1. erika on August 5th, 2008 1:09 pm

      I’m so glad you’re at a better place with all of this. And some centers are reporting even HIGHER survival rates!

      Your post was wonderful - you captured so many of my own thoughts. I teach an Ethics class at the high school level, and we talk a lot about technology and medicine and “just because we can, does it mean we should?” I speak openly and freely about Sammy’s heart condition and how it has changed the way I view things - particularly using animals for research. Prior to Sammy, I leaned heavily on the “anti” side. Now? My son is alive because of research done on dogs! How do you find a middle ground on something like that? I think it’s good for the kids to see that life isn’t black and white.

      I’m glad you’re finding some calm and peace in this. I’m always out here if you need an ear or have any questions!

    2. erika on August 5th, 2008 1:13 pm

      Oh - and one of the gifts I’ve been given through Sammy’s HLHS - I began to see things differently. You already are - the kicks, the discomfort - these are the little signs that she is alive and well! You just appreciate things on a completely different level. There is just so, so much to be grateful for, thing I don’t know if I would have seen in the same way had it not been for his CHD.

    3. Lizard Eater on August 5th, 2008 1:42 pm

      Oh, I’m so sorry you’re going through this challenge. I wish the only difficult decision you faced was what color nursery curtains.

      It sounds like you have already grasped the #1 thing — that you must be your child’s advocate. Insist on getting all the information and don’t be shy … sounds like that isn’t a problem!

      When we went through Little Warrior’s cancer the first time, a friend of mine (who lost her son to leukemia) said, “You will get through this.” It was simple and, to me, very powerful.

      You will get through this.

    4. mskitty on August 5th, 2008 1:59 pm

      Oh, Hafidha, I’m so glad to hear that your growing information and connection with a way of addressing your baby’s health have given you a boost emotionally and in your confidence. You do have all you need to get through this, plus you have all your friends as well. Do call on us if you need us.

    5. uuMomma on August 5th, 2008 2:27 pm

      Oh. I don’t know the words, but it sounds as though you have found the strength you need by standing up for yourself and your baby. And what LE said. Love to all of you …

    6. Matt on August 5th, 2008 5:36 pm

      I’ve followed your posts recently, and have spent some time thinking about what you must be going through, partly because I am aware my family went through something similar with me when I was born.

      I hope it all goes well you, Hafidha. Take care.

    7. Terri on August 5th, 2008 5:50 pm

      This is a beautiful post. I am so sorry to hear that it was inspired by such difficult news. My thoughts and prayers and hope for the best are with you and your baby.

    8. Kelly on August 5th, 2008 8:08 pm

      I am glad to hear the hope in your words.

      And as far as going natural, I have had 3 homebirths, and I dislike hospital births for a lot of reasons - that said, it is there for EXACTLY the kind of issues you’re dealing with, so take advantage of the age of technology that we’re living in, and rejoice in it.

      You are in my thoughts.

    9. Sara on August 15th, 2008 9:13 pm

      Thinking of you and sending hope and love! What an amazing journey…

    10. Steve on August 20th, 2008 6:58 pm

      Thanks for visiting my blog! You’ve still got a little time to prepare, so as my dad occasionally says, “Chin up!” It’s going to be rough at the first, when you see your little girl wired to a dozen different machines with tubes going everywhere. But you CAN DEAL WITH IT. Find a good support group, and don’t be afraid to let your feelings flow around them. They’ve all been there before and they understand.

      Lizard Eater said that you need to be your child’s advocate, that is 100% correct. Think of it this way: Until your daughter is mature enough to understand her defect and the effects that it has on her, HER HEART DEFECT IS YOUR HEART DEFECT.

      You can do this. You’ve got a lot of people pulling for you!

      Steve

    11. Alison (abby's Mom) on September 9th, 2008 7:55 pm

      I stumbled upon you via erika’s blog and just wanted to reach out as a mom who’s been in your shoes. My daughter Abby has HLHS, has had her first two surgeries, and is thriving.

      Wishing you all the best and here if you ever need to talk with someone who’s been there.

      -Alison (abby’s mom)

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