Friday, January 16, 2015

Adventures with dolichocephaly



I always appreciate parent bloggers who share unusual experiences with their kids.  It’s not from a place of “pay attention to me” or “feel sorry for me”.  It’s from “hey, it sucks and here is my story”.  I want to share my experiences with my kids so other parents don’t feel so alone.

As of this second, I am not seeking out any information on this topic or possible diagnosis.  I do not want any information at this time about it.  I just want to share a scary doctor visit and how an ordinary well baby check up can flip your whole world upside down.

I got off work and spent my morning trying to soothe a slightly fussy 6 month old baby boy.  His swing broke the day before and I was waiting on my paycheck to deposit that same morning to get a replacement.  Until then, I had to find other ways to entertain him and tire him out.  Baby swings are a godsend, I swear it.  All my boys loved theirs and would fall asleep so easily in one.

We played and ate some bananas and cereal baby food and walked around.  I finally took him for a quick drive to the bank and he was out in minutes.  Whew…  now I had a few minutes to gather all the things I’d need for a winter time doctor’s visit.

  • ·         Insurance card
  • ·         My ID
  • ·         Diaper bag (I never carry one this time around for some reason unless we go out of town.  Even then, I’ll just throw diapers and wipes in my purse most times)
  • ·         Toy monkey and bear teether
  • ·         Large plush throw blanket instead of baby blanket to wrap him as he’s undressed in the examination room
  • ·         Vaccination record

Awesome, that didn’t take long.  If you don’t include the time it took to accidentally douse his favorite blanket in a vat of melted wax…  That was fun.  I started a YT video on an experiment to get wax out of fabric but abandoned it because of the emotional turn my day took later.  I grabbed everything, bundled up my sleepy baby boy and headed to his doc appointment.

It was just supposed to be a typical 6 month well baby check up


It was just supposed to be a typical 6 month well baby check up.   He was getting shots so I was prepared for that.  My husband cannot go to these appointments because he cannot see Baby Chomp get hurt.  Like I can?  Sure, I’m totally cool with holding down my sweet, smiling baby boy, diverting his attention from the nurse rubbing alcohol on his chubby thighs and who eventually jabs my baby with three needles all the while watching his face turn from complete love and trust to confusion and pain….  Yeah, totally cool.  But I know it’s important and I managed to get through it with all his brothers.  It still sucks….

We were seeing a new doctor.  My usual doctor had left and she was replaced by a new doctor from a neighboring town.  I was very impressed with her.  She was very friendly and personable.  She made the baby exams seem like fun games instead of jamming lighted things into his ears and poking and prodding and squishing him like other doctors have done in the past.  She made him laugh and talked to him when he babbled at her.  She listened to what I had to say.

His weight and height is starting to drop down from the 99th percentile.  I believe weight was 90% and height 97%.  She said he is about to go through a growth spurt.  I don’t know if I mentioned it before but he was born 11lbs 11oz, 22inch long.  So he’s always been in the high percentiles.  He was sociable, eating well, rolling around as he should, handing off things from one hand to another, pulling himself up to sitting if you let him grab your fingers, etc.  The only thing he was not doing was tripoding which is when a baby holds himself up with his arms in front of himself in the seated position.  She said he is definitely strong enough to do it, he just seems too interested in trying to grab what’s in front of him.  She said this as he quickly grabbed a handful of the exam table paper and shoved it in his mouth.  He loves crinkly paper sounds.

Prefers to err on the side of specialists 


The best thing she did at the visit was explain how she approached unexpected things.  Any other doc would tell me something absolutely horrifying and walk out the door telling me to dress the baby and wait for the nurse to give us follow up information.  This one carefully explained she was new here and she did things differently.  She told me she is a worrier and prefers to err on the side of specialists than not.  At this point, I’m beginning to get scared.  She then repeats that she’s new and until she was completely familiar with all the services she can provide, she would send us to a specialist.
As she was examining Chomp’s soft spot (the top of the baby’s skull that has not fused together as you would see in an adult’s skull), she noticed it was very small.  She said she feels a ridge along the sutures when the skull should not be fused together yet.  He has 6 more months of rapid brain growth.  If his skull bones have already fused together, his brain will not be able to grow as it should.
This is something called dolichocephaly.  She explained if left untreated it will cause damage to the face and other things.  I had already clocked out and was in panic mode.  I suffer from anxiety.  All I wanted to do was shut down and speak to my husband.  I had been texting him updates as he was at work.  Here I was sending him pics of Chomp gazing at the mirror baby and trying to get the mirror baby’s toes thinking everything was normal, planning where to go to get a replacement swing after this.  All of a sudden I’m making an appointment for a CT scan at the hospital and, depending on the results of such scan, will have to be sent to the Children’s Hospital in Indianapolis.  All this would happen in the next 3 weeks.  

I didn’t want to hear anything else.  I didn’t want to know how it happened.  I didn’t want to know what the Children’s Hospital would do to him.  I didn’t want to think about overnight stays at the Ronald McDonald House.  I didn’t want to know what was in store for my perfect little baby.  All I wanted to do was run out of there before I broke down.  

I will NOT google this


I have yet to digest it.  I will not google this.  I will not think about anything horrible that could happen until the CT scan is done.  My husband, my rock, the man who never shows any emotion except for when we got married (he will never admit the tears in his eyes but I saw them) and when Chomp was born, was all I wanted.  I needed him to calm me down.  I went to his work on the pretense of buying him lunch.  I didn’t know until later that he clocked out the second he thought my texts got weird to call me.  I didn’t know he almost cried when he went back in and explained he will need time off next week.  He’s done his own research on it already and hasn’t said a word to me about what he knows.  He knows that is best right now.  

So we have an appointment on Tuesday.  It is now Friday.  In a few days, my infant will get a head CT scan.  But until then, Chomp and I will live in ignorant bliss.  I did manage to get through my day and bought a new swing.  He loves it.  This one plays songs and nature sounds.  It also becomes a baby bouncer seat and eventually a rocker when he’s older.  It’s much softer than his old swing.  

No matter the outcome, I will post about the progress.  I will post more about my life and children.  Who knows who it will help?  If I only comfort one person with one blog post, then I think it’s worth it.  

12 comments:

  1. Wow been through something similar. I hope it all works out.

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    1. Thank you. I'm sorry to hear you went through something like it

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  2. I'm sorry to hear what you're going through. Haven't been though anything similar myself but I understand how you must feel. I hope everything goes well and my thoughts are with you. Keep us posted x

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    1. Thank you. I will. I hope all is well with you! :)

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  3. Hey Spookieness, OMG I'm so very sorry to hear that. That sounds incredibly difficult and trying. My thoughts and prayers go out to you. I hope everything goes smoothly and comes back normal. Hang in there! It'll all be alright!

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    1. Thank you. We need it. Hopefully everything turns out fine

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  4. Thinking of you all...Hope to hear good news from you soon:-)

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  5. Tuesday's coming to an end right now in the UK. I just read this and I can't even begin to comprehend how you and your husband must be feeling. I have everything crossed for you. Take care.

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    1. I'm going to post about it but they postponed the CT until Friday

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