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.
- Knit and Purl Mama
- I am a 30-something mom who knits, and takes pictures, a lot. I am a mother to 3 adorable boys, Sean (Dec 2006), Mackenzie (June 2008) & Quentin (Nov 2010). This is my journey through motherhood, photography, the books I read, life in general and knitting, of course. Oh, and other crafts too!
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