Hope + Confusion

You know how when you’re facing some scary unknown situation, people come up to you and share their own horrible experiences, freaking you out all the more? Well, these are not my people. I have had nothing but positive and hopeful stories related to me over the past few days. Every email I’ve received from you – my people – has been so helpful. Each one, detailing your own scare with your own babies, with health and wellness being the resolution– each one of these has helped me keep my own hope up that everything is going to be ok. Thank you to all my worldwide stranger friends. You guys lift me up.


The Good News

So how’d it go on Friday? That’s a really hard question to answer. I thought I’d be able to take away a sense of how worried or relieved I should be, but I wasn’t able to. The good news: my boy’s heart is healthy and well, which is pretty cool. I was told that if there were problems with the kidneys, there would sometimes be problems with the heart. Not the case here, so that was a great way to begin the day.


I moved on to a detailed ultrasound, which was overseen by a doctor specializing in High Risk Obstetrics and Ultrasound. She was lovely. Her impressions were positive, and ultimately she said she couldn’t diagnose what was going on with his kidneys, and yes, there is something going on. But she gave a reassuring overall picture, saying that the things she was seeing weren’t really in-line with Multicystic Kidneys or Polycystic Kidneys, which are the two scary things that have been tossed around as possibilities.


High-Fives were given all around with my sister-wife friends, and we went to lunch before my next appointments. I realized at that time that I had really put up some walls to feeling connected to my new boy. I had stopped letting myself think about names, about the future with him, and had put the brakes on sharing dreams about him with Roan. It felt so sweet to start thinking about him again with hope – and start planning for him again.


No, Actually it Could All Still Really be Bad

So that lasted about 1 ½ hours until my meeting with the Genetic Counselor. This meeting was more confusing, and her assertion that we were not ruling out anything because it was all still possible and not only possible but also likely and that the things they’re looking at are “bad”, then I kind of tuned out while my friend asked all the pertinent questions trying to get clarification. In the end, though, there was no clarification.

More tests, more procedures and one more round and round talk with the Geneticist and finally the day was over. I walked away feeling exhausted, confused, and bouncing between hanging on to the earlier positive feelings and the frustration of knowing nothing at all.

There is one more appointment they were not able to get me in for, with someone who is apparently going to tie it all together for me. That’s what I heard, anyway. I’m not sure if that’s what they actually said. And test results will come back in the next few weeks, from the bounty of bodily fluids I submitted.

And Roan. Yesterday he let me know that he’s picking it up, that maybe this baby is sick, when he told me that sometimes babies can be born, and they need to have surgeries, or they need to stay in the hospital. And then he asked me to try to make our baby healthy and I promised him that I would try, but that even if he is born sick, we’ll be able to use all the doctors around us to help him. And that simple assertion there is now what I’m living by. How this baby grows inside me is not entirely up to me. I’m doing my best, and will continue to do my best by him. After that, I suppose all I can do is hope, and that is helped by the stories I’m receiving from you, so thank you again to everyone who is sharing their own experience with me. They are more helpful than any doctor has been.


43 thoughts on “Hope + Confusion

  1. So glad to hear this news. Sounds like a mixed bag for sure, but to be expected. I’m happy that you’re surrounded by loving and optimistic people who are nurturing your hope. I wish my crazy medical-condition story had a happier ending so as to give you hope….perhaps you can take comfort in the fact that I consider my story a positive one, even if no one else does. That and the fact that the “Dynasty episode” is over and off the air for good (I hope).

    My hubby and I have a picture of you that we’re sending loving and healing vibes. I hope it comes through.

    Love Love Love

  2. Hi.

    Our first son was born with a small hole in his lung. When he came out, he wasn’t crying, just making this weird “unh, unh” sound. Immediately a team of NICU doctors surrounded him and whisked him from the room. Jen and I both started crying, wondering where our baby was and what was happening. The result? He was fixed using the magic of … oxygen. Yup, 24 hours in an oxygen tent and all was well. And now you’d never know that anything ever happened.

    Then it happened with our second son, too. Still traumatic, still a perfect outcome.

    I don’t know if that helps, so in addition, I’m sending lots of love and peace your way.

    Jason

  3. Hi Jodi,

    I emailed you over the weekend, but wanted to say again that your circumstances are actually giving me some comfort.

    I, too am around 22 weeks along, and have been undergoing many tests to determine if this pregnancy is going to be viable. It is hard to not float away from your own feelings, but I’ve found that it doesn’t help. When you get back to your body, they are still there. Just try to laugh extra at the things that are funny, and stay away from anything you don’t need that stresses you out. We will both get through this. No matter how it ends up.

  4. I love Roan’s attitude. The baby may be born sick, but you’re going to use all the amazing doctors around you to do everything you can for him. That’s a little bit of piece of mind.

  5. Oh, I am so sorry that the news was so unconclusive.

    WIth Belle’s pregnancy, I felt like I had my fingers and toes crossed and breath held for 38 weeks. And, I think what you said about not being able to do anything, that powlerlessness to make change is so difficult and stifling. My husband and I were just talking about how with Belle we felt a little numb through the whole pregnancy.

    But, clearly you have good drs and so much support to get you through. And, I think your answer to Roan is right on. I will keep thinking of you and your underwater baby.

  6. You must be so frustrated. Listen to what you’re readers are saying – stay positive, and try to limit the stress. Good luck.

  7. I have never posted before, but I feel I need to this time to give you another story with a positive outcome—-I have a girl who I work with that did not know she was pregnant until 37 weeks (long story but she always had periods where she went months without a period and was told she could not ever have children), but the doctors put her on 2 medications without checking a pregnancy test despite the fact she had new onset diabetes and high blood pressure—these meds RUINED her baby’s kidneys–he was thought he would not make it an hour after delivery–and made him have to have dialysis 14 hours daily from day 1 of his birth—-I say this not to scare you, but for the part I am about to share with you. She told the doctors from day one they didn’t know the power of prayer or how her “healer” God could help—the baby survived, is now a healthy developmentally appropriate 11 month old—and is NO LONGER ON DIALYSIS!!! Each hour that came off from his dialysis time was a miracle–and it was a miracle that her sister was born with a matching 3rd working kidney that could have been used if he needed a transplant, but was not needed. I don’t know what your beliefs are, but if you believe, you and your friends should pray daily, several times a day for your baby’s health and keep positive thoughts–God will listen and he will answer your prayers—maybe not exactly like you thought they may come out at 1st, but keep your chin up—you can and will be just like the nurse I work with—a healthy baby now with healthy kidneys, off dialysis, and in no need for a transplant. It gives me chills to think about it, but God is awesome, he listens, and he answers prayers. He will help your baby, as well as keep you healthy and help your mindset.

  8. Listen to the positive words of the doctors. The only way a counsellor can make money is if they keep you unsure and upset (and therefore coming back to “talk about it”).

  9. I can hardly count the scary in vitro diagnoses that have turned out positively. The most recent success is a dear friend whose boy was born with a hole in his heart. They couldn’t operate until age 2, meanwhile he had to be carefully monitored through the pregnancy and his first two years of life. Now he’s 2-1/2, the operation (wildly successful) is behind him, and they have been told not to give his condition another thought, because the repair is complete and he is healed. I mean, wow. Another person I know – her baby had to have surgery in utero (freaky, right?) and her kid is now 2 and you’d never know she’d had such a rocky start. Seriously. Not a single lasting harm on either of these kids.

    I second Big Mike – your physician was positive and reassuring, and she knows the body better than a genetic counselor, who can only give you probabilities and percentages. Your baby has a strong heart, and a sweet one, like your other sweet boy.

  10. I know it’s a total cliche but it works for me…think positive. I’ll do it too. Medicine does not have all the answers and your baby boy will be all good.

  11. I stumbled across your blog via FS… Miss & I have fallen for both Roan and your thoughtful, entertaining writing. We’ll both think positive thoughts and send good karma your way.

  12. I stumbled across your blog via FS… Miss & I have fallen for both Roan and your thoughtful, entertaining writing. We’ll both think positive thoughts and send good karma your way.

  13. I stumbled across your blog via FS… Miss & I have fallen for both Roan and your thoughtful, entertaining writing. We’ll both think positive thoughts and send good karma your way.

  14. I stumbled across your blog via FS… Miss & I have fallen for both Roan and your thoughtful, entertaining writing. We’ll both think positive thoughts and send good karma your way.

  15. I stumbled across your blog via FS… Miss & I have fallen for both Roan and your thoughtful, entertaining writing. We’ll both think positive thoughts and send good karma your way.

  16. I stumbled across your blog via FS… Miss & I have fallen for both Roan and your thoughtful, entertaining writing. We’ll both think positive thoughts and send good karma your way.

  17. I stumbled across your blog via FS… Miss & I have fallen for both Roan and your thoughtful, entertaining writing. We’ll both think positive thoughts and send good karma your way.

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  19. High-Fives were given all around with my sister-wife friends, and we went to lunch before my next appointments. I realized at that time that I had really put up some walls to feeling connected to my new boy. I had stopped letting myself think about names, about the future with him, and had put the brakes on sharing dreams about him with Roan. It felt so sweet to start thinking about him again with hope – and start planning for him again.

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