4 month well child or the day my world changed

I’m so glad I decided to stay home.  Life got very bumpy after Lily’s 4 month well child appointment.  To make a very long story short…
Lily is in the .75% for weight, 15% for height (yay) and .02% for head.  On top of that her head is still long and not round like its suppose to be.  To help with her weight we have to give her 2-4 ounces of formula a day, it helped too.  (Which kills me) She gained 7 or 8 ounces last week, that’s very good for us.  She’s up to 10 lbs 1.4 oz.

As for the head shape, my doctor is really worried about it.  We have an appointment with a genetics’s specialist in July and this morning we had an appointment for a CT scan.  It didn’t go so well because Lily is a crappy napper.  She wakes up as soon as I put her down 95% of the time.  So tomorrow we go to a different hospital imagining center for a CT scan with sedation.  Tonight/tomorrow morning is going to suck.  We have to keep her awake till midnight, can’t feed her after 4 am and have to wake her up at 5:30.  Our appointment is at 8 so we are going to have a sleepy hungry pissed off baby till after 9am.  I am so not looking forward to this.
I also have an appointment with the Child development center to make sure she’s developing on track.  This is just precautionary.   We think she’s fine and perfect.  She’s super alert and smiley.  She is very interactive and focuses on things great.  But we have to do what’s best for her.

I never imagined that I’d be a Mom that had to make appointments for genetic testing or worry about getting help for my baby.  I’m not organized enough for this shit.  I feel like I should be taking notes and being proactive but I have no fucking idea of what to do.  To us Lily is still just our prefect baby girl and I don’t want to think of any other option.

Today my doctor called to apologize for the fiasco this morning (apparently our local hospital doesn’t do infant sedation and she didn’t know that) and I asked her if the CT scan come back fine is it possible that Lily’s head is just shaped that way and that she’s fine.  Nope, if her skull hasn’t prematurely fused then we have to find out why her heads long and not round.  In other words it must be genetic.  She’s skirts the question when I ask what problems that may cause in the future.  Because seriously people I’m not just being a blind moron here, Lily acts just like a normal 3 month old baby (giving her 1 month for her prematurity).  My doctor even says so, but we have to be careful.  I just want to stick my head in the sand and watch my girl grow up.  Ok I guess I’d have to take my head out of the sand to watch her grow but you know what I mean.

In fact I didn’t want to write about this, hell I don’t want to talk about it.  My family all lives in other states then me and I told one of my sisters because she called me right after I had talked to my doctor.  Well she told my Mom and our other sister. So of course my Mom calls all worried and then I had to call all the family and explain what I was going on.  Which to be honest just made me feel worse because I don’t know what’s going on.  But I decided to write about it, not to get sympathy but to get it off my chest.  That’s what a blog is for isn’t it?

This whole thing is odd to me because when the innernets was abuzz with sadness over Maddie and Thalon I avoided learning too much about them.  Not because I’m some heartless bitch but because I can’t imagine something bad happening to my Lily.

Lily is waking up so I don’t have time or desire to reread this and correct errors, but I hope there aren’t too many.

4/28/09

My perfect girl

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12 thoughts on “4 month well child or the day my world changed

  1. I hope things go well tomorrow. What you said in your previous post about her “throwing” the smile at you – I know EXACTLY what you’re talking about! I love when Amelia does that!

  2. Well, you don’t want sympathy, so let me try to convey my SUPPORT instead. Every time you write about Lily she sounds perfect and normal, like a little girl that I wish myself & Maia could meet. I know it must be a serious heartache to have this weighing on your conscience.

    What you have to put Lily & yourselves through tonight & tomorrow morning sounds like it’ll be an absolute nightmare. I am so sorry that you all have to go through that.

    *hugs* I hope your update after the appointment is upbeat.

  3. Hi Jinxy,
    Thanks again for posting your supportive comment on my blog, it reminded me that I hadn’t written anything yet for your situation…which, by the way is infinitely more stressful than mine…very thoughtful of you.

    It has been weighing on my mind though. I don’t want to imply that there is something wrong which there likely is not since everything about her appears perfect and normal. But if it is the fused skull plates then there are several options. AND if you need help navigating the medical literature please let me know. (I am not sure what you or your husband do and don’t want to sound condensing but am happy to help in anyway possible).

    I have been reading just so busy it’s been hard to comment…. it will get better soon though.

    Hugs and hang in there.

  4. It’s probably hard to sound condescending when I misspell condescending, right? Ha! I promise my knowledge of the medical literature is better than my spelling.

  5. Pingback: CT Scan on my 4 month old try 2 | Jinxyisms

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