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.

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".

1.30.11 :: Thurs/Fri/Sat/Sun Round up

In the last couple of days, Mack turned 136 weeks old (Thursdays, January 27th), Sean turned 49 months old (Friday, January 28th) and Quentin is two months old today (Sunday, January 30th)

I don't even know where to begin the story of the last couple of days, besides starting at the beginning. Thursday started out as a normal day. Quentin and I met some new friends in the morning, at a mom & tot group that a friend of mine is a part of. The babies/kids are of all ages. My friend who introduced me to this group has a son 2 months younger than Mackenzie and is due around Mother's Day with her 2nd son. We met in Mack's swimming class when Mack was little. We kept making sure we were in the same swimming class, so we had someone we knew to do it with. It was nice to be invited out and made some new friends that morning.

Then, we ran home, and the Welcome Wagon brought us a nice basket for Quentin's arrival. We chatted with the lady who came to bring the basket for a bit, and then when she left, we headed to my OB check-up. I went to that, which was quick & easy and then headed in the city. I went to a mall close to Quentin's doctor's office, and picked up a sandwich to eat (which later I was glad to have done) and then ran to Quentin's 2 month check-up. We saw Quentin's doctor. He is now 7 lbs 10 oz (3450g or 3.45 kg) and dropped just below the 3rd percentile, which was a bit of a concern to our doctor. He is gaining weight, but not fast enough. He's supposed to be gaining at least 20-25+ g per day on average and he had a week where he was only gaining 15g per day, which she didn't like, the following week it was 31g per day, but if you average out those 3 weeks, it brings you to only 20g per day, and this past week he only gained also 20g per day, and because he was premature she would like him to gain more than the 20g minimum per day. So his slow weight gain has been a concern. I had her look at his chest/breathing because I was not happy with it, and neither was she.I mentioned that he sounded like he was "squeaking" when he was breathing. So after giving Quentin his 2 month vaccines, she sent us to the Montreal Children's Hospital. I was not prepared for that, at all.

So we go there just before 5pm. There was a panic with parking because I couldn't find money that I knew I had on me, so I had to leave my keys. We were taken right away because the Montreal Children's Hospital takes breathing issues with babies seriously, and as well, they don't put newborns in the waiting room at emergency. So we sat... and waited. We told our story about 8 times to different people. I kept wanting to scream out "I already told the last person, can you read the chart?"

Quentin was a really big trooper. The poked & prodded and took blood, took x-rays as well, and he was an angel. He never said boo. He was so good. The nurses were in love with him. They all wanted to be the one who took his bloods or gave his sugar water while the other nurse was taking his blood, to distract him.

And he just wanted to be held by mommy and didn't say boo.

We sat in Emergency all night. At one point there was a shift change and less staff on call, so they moved us to an observation room. I cried. I held Quentin. At calm moments I was able to cast on another Pompom Bear Hat, and knit. (Read below for rest of the story).

We had a lot of waiting to do - so I was able in 2 evenings start & finish the hat.



And since we had a lot of waiting to do - I was able in 2 evenings start & finish the hat. It's the exact same specs as the last one I knit (last week was it?) except, I used 5.0mm (US8) needles this time, and knit to 5.5" tall instead of 6" as the pattern calls for the smallest size. The specs are here. I even used the same yarn (Malabrigo Worsted in Emerald) as the previous hat.

I even had one of the nurses help me find cardboard (from Enfamil's sterilized water) so that I can make pompoms since I didn't have a pompom maker. Trying to be creative! I used a Penaten Cream jar to make the large circle and then a keyring from my keychain to make the middle circle and baby scissors from Quentin's diaper bag to cut it all. I was being resourceful. It worked.

This hat is so cute. I love it.

It's a great hat to gift knit as well.

So back to the story of why we were at the Children's hospital...

So, Thursday night they couldn't do anything for us, except for draw bloods and rule things out. Quentin was an angel. They x-rayed him (chest & neck/throat) and he didn't say boo. They took blood from both his arms, and his foot, and he didn't say boo. They gave him physical exams, he didn't say boo. When they couldn't really find anything, they kept us to see ENT (Ears, Nose & Throat) in the morning. When they decided this it was close to midnight. I had been there since around 5 pm. I called my mom to go sleep at my house, and Jamie came to bring me things at the hospital, since they were going to admit Quentin. Jamie spent the night there with me, sleeping on the comfy chair in any position he could, and I pulled 3 (hard) chairs together and put my jacket on it, and used an extra pair of my yoga pants as a pillow and used one of Quentin's larger blankets to cover myself. (Quentin had a blanket supplied by the hospital). They put him on a monitor to keep track of his saturation levels. The doctor on call over night happened to be a mom I took a mom & tot class with, her daughter is Mackenzie's age. Also, one of the nurses happened to be a friend of my sister's that I had spent 3 weeks in Europe with when I chaperoned my sister's high school graduation trip back in 2002. It was comforting to know that I knew staff there.

In the morning, we were brought up to the ENT department. We were seen within a few minutes. They took a history (yet again, probably the 10th time I had given it) and decided to do a scope using a fiberoptic laryngoscope. They put a liquid down his nose to "numb" it, and put the tiny tube up his nose and into his throat. I had to hold him down while doing this, and needed Jamie to hold his hands while I held his head straight. It killed me to do so. He did not like it one bit, but was a trooper.

Immediately it was discovered that Quentin has a condition called Laryngomalacia. I asked, and it's not because he was premature. 2% of all babies born have it. Laryngomalacia is (quoted from here) the most common cause of "noisy breathing" in babies after the newborn period. This disorder may become obvious as early as the first two weeks of life, with noisy, raspy breathing while taking a breath in . At first the noise simply sounds like nasal congestion, but it occurs without nasal secretions. This type of "noisy breathing" is known as stridor and has a high pitched, harsh quality. The stridor is usually absent with the child is at rest and becomes more prominent when the infant is lying on his/her back, crying, feeding,excited or has a cold. The stridor usually is at it’s worst around six months and then gradually improves. Most children are symptom free by 24 months. The ENT we saw though, told us 99% of cases the child outgrows it by the age of 4 or 5 years old. The cause of laryngomalacia is not clearly understood. What is known about the condition is that the epiglottits which protects the airway when the child feeds also partially obstructs the airway during breathing. The partial obstruction is the source of "noise" with breathing. Treatment is simple but nerve-racking -- waiting for the child to out grow the condition while explaining to family, friends, and passerbys that there is really nothing wrong with your noisy breathing baby. It is rare that this abnormality causes any serious problems. The stress is on the parent listening to this noisy breathing as the infant is experiencing little problems. In time, the cartilage that supports tissues around the throat and airway become stronger which helps resolve the problem. The other 1% will require surgery to "shave" the cartilage so it doesn't obstruct the airway.

We were sent back to Emergency to then be admitted and had to wait for a room. Quentin was going to stay overnight and be monitored. They wanted to see if he was in-taking and releasing enough Co² and if he desaturated at all. If he needed surgery, we'd be staying and he'd be put on the emergency list for surgery to happen as soon as possible (maybe Monday if needed). Otherwise, we could go home.

We shared a room Friday night to Saturday with a 4 week old baby whose mother left him there with his useless father. The baby cried all night long (Quentin was an angel and slept) and the father had no idea how to comfort the baby. He even had to call a nurse to help him change the baby's diaper. Quentin of course slept through this baby's wails, but I couldn't get much sleep. Jamie had brought me my thank you cards to write, so once I had finished Quentin's pompom hat, I worked on all my thank you cards since Quentin's arrival. Now I just need to wait for some wallet size photos I made to go in the cards, and will send those off as soon as possible. It felt good at least to get that accomplished while I was in the hospital.

We saw a few doctors on Saturday after Quentin was monitored over night. The tests are unfortunately inconclusive. They deemed it "just okay" for Quentin to go home and to come back in 2 weeks or sooner for a follow up with both ENT and Respiraology. Quentin also has to gain weight. If he doesn't then it's a sign that the Laryngomalacia (if you have audio on your computer this is how you pronounce Laryngomalacia or if not, it's "luh-RING-go-muh-LA-shuh"). Surgery is still not ruled out yet, it is a possibility that he might need surgery. When we were at the hospital the doctor said that it wasn't clear cut yes he needed it and it wasn't a clear cut no either. We were given a prescription for Zantac as acid reflux is a common irritant to Laryngomalacia, and this way, we can protect the airway from it. (Quentin doesn't have acid reflux, but it's a preventative in case he develops it). I will call Monday to book those follow up appointments and we'll go from there. Treatment is up in the air. I'll know more within the next 2 ish weeks.

Sunday morning I took Sean to his friend's birthday party. He had a good time. I missed my boys (we got home Saturday night from the hospital). I slept most of Saturday night, and today, after the birthday party for Sean's friend and before going to my parents house for dinner. I was glad to be home again. It's one thing when you go to the hospital prepared to be there. It's another whole story when you're not.

I don't even know if I am missing any of the story. I feel like I've gotten it all written out in this post. If I think of anything to add, I will. Dear Readers, any of you had Laryngomalacia yourself? Have a child who had it or has it? I'm looking for people to talk to. I would really appreciate any info you have on it, if you are a nurse or doctor yourself.