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Special Needs (Susi)

June 17, 2013

Previous post here.

When I was pregnant with my son, the worst thing that happened was I had an a-hole for a doctor. When I was pregnant with my daughter, it was a totally different experience. Almost from the moment I found out I was pregnant, there were problems.

At our first ultrasound, everything seemed okay, except I was farther along than I thought. We had our next ultrasound at 22 weeks, and we were so excited to find out it was a girl. We chatted happily about her until the end of the ultrasound, when the tech said she wanted to go get a doctor. Immediately our hearts started racing. What was wrong? We were told to wait in the waiting room for the results.

Our midwife called us back to tell us that our baby had echogenic kidneys. It could be a marker for Down Syndrome or many other diseases. We would have to go see a neonatologist.

We saw the neonatologist once a month for the duration of the pregnancy. We had so many ultrasounds—I think we ended up having 9 ultrasounds all in all. The small bonus of getting to see our daughter was offset by the tremendous worry and sadness that she might be seriously ill. Finally, by the seventh month, her kidneys were fine, but at that time she turned and was transverse (sideways) breech. She remained transverse breech for the duration of the pregnancy. She would flip around all the time, but I could always feel her head on one side or the other, never in the bottom where it belonged.

I tried everything I could think of to get her in the right position. I tried moving her with my hands, talking to her, even doing acupuncture, but nothing worked. Reluctantly, my midwife and I agreed that we would schedule a version (where the doctor turns the baby in utero) and a c-section for the same day, and if the version didn’t work, they would do the c-section. I was terrified of the surgery and hated the idea of an unnatural birth. The day came, and the version didn’t work. Well actually, it did work—the baby turned, but she turned right back as soon as the doctor took his hands off. They tried turning her and breaking my water to pull her into the birth canal. It didn’t work—my water wouldn’t break because there wasn’t any pressure on the amniotic sac. It was SO painful. My wonderful midwife gave us one more chance—she said we could try a natural birth with someone holding the baby in position, but she didn’t think it would work and we’d end up having a c-section anyway. We finally agreed that it seemed pointless to prolong it any more and prepped for the surgery.

The surgery itself went well, no problems. My beautiful baby daughter, Grace Elizabeth, was born at 10:30 a.m. She was breathing very loudly, and I asked if she needed oxygen. The nurses agreed that she did and rushed her to the NICU. Although her pulse oxygen level went up within a couple hours, my daughter’s breathing was still very loud, like a honking sound. The doctors examined her every time they saw her, and eventually decided she had tracheomalacia – a malformation of the trachea that she would grow out of.

She continued to grow, but never learned how to roll over on her own, so at her 6-month well baby visit I asked her pediatrician about it. She agreed that there was a delay and referred us to a physical therapist. Gracie learned to roll over quickly after we started PT, then we worked on sitting up, then crawling. She reached all those milestones a little late but still within the realm of normal. Walking was a different story—we are still working on teaching her to walk, and I don’t know if she will ever walk on her own.

There has never been a time when Gracie was healthy. We’ve been through so much with her. We discovered that she doesn’t feel pain in her hands and feet, and feels less pain than normal everywhere else (that’s why she can’t walk—she can’t feel her feet). She got RSV at 8 months and has had several serious respiratory infections since then (she barely survived some of them). She is prone to infection (it’s related to not feeling pain) and got gangrene. She spent a week in the hospital for that – she ended up losing the tip of her right index finger. And, most recently, we just found out that she has a degenerative eye disease that will probably cause her to lose her sight by the time she’s a teenager. After a year of testing, we’re still not sure what the overarching medical condition is (I think it’s an HSAN, possibly type 2 or maybe type 1). Anyone out there on the internet have any ideas?

I started writing this post because I felt really bad about having to have a c-section with her. I wanted to have a natural birth and her birth was as far from natural as possible. I constantly wondered if I had done everything I could to avoid the c-section—should we have tried holding her in the birth canal? Should I have gone to a different person for acupuncture? What if I had done things differently? Over time, though, I grew to believe that she would never have survived a vaginal birth—even if we could have managed to hold her in place to come down the birth canal, I think her trachea would have collapsed from the tracheomalacia. Still, it’s hard to not feel guilty.

We have been through so much with our little angel Grace, but we wouldn’t give her up for anything. She is a light and a love. She is the world’s best snuggler. She is silly, sweet, smart, and sassy. We are not out of the woods with her but we love her so much and will enjoy her as long as we can.

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4 Responses to “Special Needs (Susi)”

  1. Madderakka Says:
    June 17th, 2013 at 9:53 pm

    You seem to have so much guilt over not having a vaginal birth nor producing enough milk. Those things don’t make someone a mother: holding them in the night when they have a fever, kissing their scrapes and bruises and being there for them makes you a mom and you sound like you have excelled at that.

    I understand wanting these things. Goodness knows I would change some things if I could go back. But letting the guilt eat at you is only hurting you. You made the best decision you could to bring your baby girl into the world as safely as possible. You couldn’t control your boobs’ ability to make milk, but you know what? Your child will not remember these things. They will remember the bed time stories, the giggles and the hugs.

  2. Megan Says:
    June 18th, 2013 at 5:37 am

    God bless you and your husband. Looks like Gracie was placed with the right mommy and daddy. Please try no to feel guilty of “what could have been”. I know it’s much harder said than done, but listening to your story it’s obvious you did everything right. I hope for nothing but the best for your family that might not be free of problems but is definitely full of love.

  3. Susi Says:
    June 19th, 2013 at 1:58 pm

    Thank you both–I started writing these posts to reach out to other women who had trouble with breastfeeding or who had to have c-sections even though they didn’t want it. I was trying to keep the focus there through the articles. I so appreciate the love and support from the people who have commented on both articles. Thank you.

    I try to remember to enjoy my snuggly girl and my silly boy in the here and now and not worry too much about what may happen in the future. It’s difficult not to worry when your child is so seriously unwell but we do try to just appreciate them both as much as possible.

  4. Madderakka Says:
    June 19th, 2013 at 9:30 pm

    My son was has not had serious health issues, but he does have autism. I, too, have gone over my decisions and actions and wonder if something I did or didn’t do contributed to it. It’s hard to get over the second guessing and guilt, but that only keeps you trapped in the past.

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