Monday, January 31, 2011

1.31.11

This morning the Children's hospital actually called me. They had set up my appointments for me, next week. Unfortunately they couldn't give me the 2 appointments on the same day. So I'll have to be there twice. I hope to get some answers.

I've been doing some research online. Probably a bad thing because I became very emotional today and was a total mess. I got nothing done. I had no energy to do anything. I cried. Why Baby Q? Why us?

Some research helped me form about 800 (ok, I'm exaggerating) questions for the doctor appointments next week. I've been writing them down so I don't forget what I want to ask. I also wanted to be well informed before walking into the follow-up.

Today I learned that Laryngomalacia:
- Starts at about 4 to 6 weeks of life after a baby is born.
- Occurs when the child is breathing in.
- Becomes worse with crying, upper respiratory tract infections, laying in the supine (on back) position (doctors may recommend that babies with laryngomalacia be placed on their stomachs to sleep instead of their backs, as long as the bedding is not soft.)
- Usually gets worse before it gets better
- Child may have retractions (sucking in of the skin above or below the ribs when breathing in) (Quentin does have this).
- There is no cyanosis (blue color of the skin)
- The baby is otherwise happy and thriving (Happy yes, but Quentin needs to gain weight).
- Some parents have found that cool visit from a vaporizer helps eases the child's noisy breathing. (I will dig out the vaporizer we have in the storage room and put it in Q's room).
- Children with laryngomalacia will do better at a 30 degree angle, or by positioning their heads to relieve or reduce the obstruction. The child should also be held in an upright position for 30 minutes after feeding and never fed lying down.
- Crying exacerbates the obstruction and work of breathing; a pacifier may be useful to calm an agitated infant.

This is a start. At least there is information out there to help me understand better and make Quentin feel as comfortable as possible. I joined a support group for parents who have children with Laryngomalacia. I haven't written anything on the boards/threads, but maybe I will soon. I had a long chat today on the phone with a friend of mine who has a son 4 days younger than Mackenzie, who is going through the same thing, except her son was misdiagnosed until the age of 11 months, and she is dealing with an entire whole net set of issues because he was diagnosed late. At 2 and a half her son is still on formula (liquid diet pretty much) because he won't eat solids. He associates it with vomiting and gagging. She's working with people to train/teach her son how to eat. She told me that I should be glad they diagnosed Quentin at such a young age. I hope to avoid any further problems like she is going through. I also had a long chat with a friend of mine, (that my engagement ring actually comes from - he's a diamond seller), and his daughter has been living most of her life (she's just over 18 months) at the Children's Hospital. He'll actually be there next week during one of Quentin's appointments, so I am going to meet up with him for a bit, but he has seen all the doctors I will be seeing, and he was talking about the hospital to me. It felt reassuring. His daughter actually hasn't been diagnosed with something specific as they are not sure what is actually wrong with her, but she has major stomach issues and has a permanent feeding tube. I ran into him once since he moved to my neighborhood when we were both in the pharmacy parking lot. I was coming and he was going. It would be nice to catch up and meet his daughter.

Then late afternoon, the mailman actually showed up with our mail. To my surprise (I had totally forgotten that I signed up last year for the Tanis Fiber Arts Sock Club for 2011), there was yarn in my mailbox.

frosttanis

Tanis Fiber Arts Blue Label Fingering Weight in Frost.

Today’s Link Love:
- This frame tutorial. Love the clock in the frame.
- This bedtime calculator.
- Huggies free Enjoy the Ride Rewards Points: BKJZHTRKCNDPPGB

I leave you tonight, with a video of Quentin's Laryngomalacia. It starts up around 17 seconds into the video, where you can hear his "squeaky breathing".

9 comments:

dawn said...

Oh my, how painful that must be for you to listen too! He doesn't seem to be bothered all that much by it, but still it must be awful for you. I'm praying he will outgrow this and not have to go through a surgery!

sapphireblue said...

Does any of this have to do with being late preterm? Or is it just something that happens randomly? I work in a hospital, and have never heard of it.

carolyn said...

From hearing your stories, I am so glad that this was caught super early so that there weren't additional problems caused by it. Your nerves must be so frayed - I feel horrible for you! I'm off to listen to the video...I just want to tell you "it'll be okay", but I don't know if you want to hear that!

Tara said...

Sort of reminds me of when Maxime had whooping cough. As to wht "Why us? Why baby Q?", I wish I had an answer for you. Illness, especially in children, is never fair.

g-girl said...

couldn't see the video for some reason but it's okay. well, at least you are a bit more informed than you were to begin with. sounds like you were lucky it was caught early. it makes me wonder if my friend in az had this same situation with her son when he was born because he had to be taught how to swallow and stuff too like the friend's child you had mentioned.

Jennifer said...

I know exactly the boat you're in. I'm going through the same thing with Henri, only we're still waiting for a diagnosis. And even when they only THINK they know what it is, going online is never a nerve-settling experience. At least it was caught early, and he's in good hands. And he's absolutely adorable. (Not relevant, but still true).

Amelah said...

Questions are good! Don't feel bad if you literally do have 800! You are a concerned mother and have every right to ask AS MANY as you want!

Ooh, nice yarn! She has such pretty yarns!

Poor munchkin! Now I feel bad for calling him Squeaky MGee!

Bea said...

He's so cute on video! The squeaky breathing is pretty scary even from far away as I am.

Hattie said...

I was just showing my mom this video and she wanted me to tell you how cute he is! But I came back to it because the last few weeks Olivia's been doing the same thing exactly, it's just deeper, not as squeaky so I'm gonna be bringing her in to get it checked.