Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Baby’s First Bath Time Photo Shoot

on August 7, 2013

It’s really hard to give Agnes a bath. I remember Stephen being hard too, maybe requiring four hands at first when we were inexperienced. He really hated baths at first, and he would flail his arms around and cry and cry. Agnes is difficult for a different reason. She is so floppy and doesn’t resist enough with her legs and arms when she is in the tub. We are still using that tiny pink tub they gave us from the hospital which is useful because if forces Agnes’ butt to stop sliding away from me when I’m trying to wash her head and torso. She is really slippery! She doesn’t fight much during the bath, and she doesn’t cry; she just looks around with a shocked expression and flops and slides all over the tub. I almost want to hook her arms over the edges of the tub to keep her from sliding around so much. I wonder if she would tolerate that?

I managed to get a few decent photos after the bath.

See her pretty eyes?

See her pretty eyes?

She's staring, bewildered, at the overhead lamp.

She’s staring, bewildered, at the overhead lamp.

100_1735

100_1737

Now to hide some news down at the bottom of post, we had a follow-up with the neurosurgeon today. He is monitoring Agnes’ enlarged ventricles to see if/when they start to grow at an alarming rate. Well, I guess things in Agnes’ head are starting to show signs of pressure. Her head circumference has made a little jump, and so have the ventricles. She has another follow-up in a month to see what’s going on, but if the ventricles keep swelling, she will need a shunt. This is not surprising to me but of course I hope she doesn’t end up needing a shunt! She has defied expectations before, but my personal feeling is, she will need a shunt at some point. I learned that shunts are a more or less permanent installation totally inside the body. The shunt drains fluid from the brain into the “belly” which I forgot to ask if that means her stomach, her intestines, or just into tissue that is not an organ. She would need periodic check-ups to make sure the shunt continues to operate normally, but it sounds like a one-time surgery unless the shunt fails for some reason. The neurosurgeon did say that some babies who need shunts do outgrow the need, but that’s mostly premature babies. I think because Agnes’ ventriculomegaly is part of her special chromosomes, she will probably need to keep her shunt should she end up getting one. Only time will tell if she will need it.

Also in other news that is more positive, Jeremy and I did the same blood test as Agnes to determine if other children we may have will be at an increased risk for abnormal genetics. The results say: No! Agnes’ dealio was a totally random occurrence, and any future children we may have will not bear an elevated risk of Something Strange.

So…I’ve been thinking–and this clinches it for me–Agnes must have a really important reason for being here and for being the way she is. Her God-given mission must be super important. I don’t know if she has already done it, or if she’s waiting to impress us, but I plan to watch out for something amazing!

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7 responses to “Baby’s First Bath Time Photo Shoot

  1. JeneaSwainston says:

    AAHHH! These are precious pics of little Agnes! With her eyes wide open and all fresh and clean! Good job mom and dad!

  2. Kathy Schwager says:

    I love seeing her with her eyes wide open. She didn’t do that while we were visiting. I especially like the 2nd photo — she looks so alert!
    It’s good to know that the genetic “thing” is not inherited.

  3. woodra01 says:

    She is so precious! These pics are adorable.

    Have you joined the http://www.our-kids.org mailing list? It is an incredible resource. I’d found it to be helpful whenever I have questions about a new issue. It is such a diverse group and they are very knowledgeable.

  4. Kay Becker says:

    Judy———Little Agnes has already been a blessing to all of us who have been blessed to share some of her journey. Thank you for alowing me share. Kay Becker

  5. Penny says:

    Oh my gosh the last bottom picture of Agnes is cracking me up. Its like she is squinting with the right eye as if she is going to tell you she is not real sure you are sane!! I have to say, this synopsis of the last 4 years of your lives says you are grounded and ready for whatever God or Agnes will throw at you. It is so impressive that you can look back on it with such a clear eye for the joys and challenges. I am so proud of you Judy. Don’t sweat the shunt, by the way. Roll with it as part of the daily unveiling of the magic and mystery of raising Agnes. The shunt usually just drains into free space around their guts ( called the peritoneal cavity, hence the name Ventriculoperitoneal , or VP, shunt) and the extra fluid gets absorbed. it does not go into her stomach that I know of. ……..Love from Penny, Bill, and Nathan

    • judy says:

      I think the shunt would probably be fine. It is another surgery so it has those associated risks, but I’m sure once it’s in, we would forget about it! Plus, would it make her head eventually be more proportioned to the rest of her body since that extra fluid wouldn’t be in there to making her head larger? Right now her head looks very big to me. Would her head grow into a different shape once the fluid is draining away?

      • Penny says:

        Yes. Her “fontanels” or soft spots are still open so her hydrocephalus can make her head look larger because the skull bones are sort of floating on her head right now and her head is larger because the ventricles are overfull. . Eventually, the skull bones would fuse and bone will migrate to cover the soft spots. So , if she gets the shunt, and the fluid drains down so that her head is more normal in shape and size, then when her skull plates fuse to cover the soft spots, the fusion will be a normal shaped skull. That being said, it really is a risk/benefit discussion about the timing of the shunt. The tracheostomy is a hurdle for you. Yes, you can learn to care for this at home. It is noisy and a little weird at first but it is quite reasonable and well within your growing abilities!!! And, whether you realize it or not, you are about to become a professional mother of a special needs child and quite tough and knowledgeable. You are just getting it all shoved at you very fast. If she is working really hard to breathe, it will be hard for her to put on weight, stay awake, develop, engage with the world, etc. Really, if she needs this to oxygenate, go for it. These come in a bazillion sizes so it can grow with her AND there is a valve called a Passe Muir valve they can put on the trach that allows speech . I bet that will be part of the plan. A way for her to make noise. A joyful noise to the Lord………..someday, soon, I hope. Love you.

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