Sweet simple beginnings in September 2010. Ten fingers and ten toes and a head full or hair. She weighed in at 7 pounds 13 oz and measured almost 21 inches tall. We noticed that she made a squeaking sound when she breathed and ate. The nickname of Squeaker was born.
By day 16 we were in the ER. Squeaker had seen the doctor almost everyday since she was born. She wasn't breathing, sleeping or nursing right. By the time we took Squeaker that night she hadn't held anything down in over 14 hours. After an IV, blood draws, and several other test nothing was found. The doctors said it was probably a virus but to follow up with our regular doctor.
Although we still didn't know why Squeaker couldn't breath normally or had to be fed sitting almost straight up we still had some great times. She learned to smile, make faces, and follow people and objects with her eyes. Squeaker was a bright beautiful sick girl.
Then one November morning we met with a Pulmonologist that let some light on the situation. Squeaker was diagnosed with Laryngomalacia. A condition where her larynx was soft and floppy in her throat causing occasional airway collapse. Next the Pulmonologist said that Squeaker would grow out of it between 12 and 18 months of age. He also warned that if Squeaker was to get any illness (even just a runny nose) she would probably need an oral steroid to keep her airway open.
By the time Squeaker was 4 months old in January 2011 she had already had three courses of oral steroids. Fearing long term side effects of so many oral steroids the doctor ordered a nebulizer and an inhaled steroid. The plan was to do one treatment every night for the next three months to get through the winter and then re-evaluate.
March 2011 Squeaker turned 6 months old. She had started to army crawl and really laugh. She loved to eat oatmeal, rice, avocado, and Cheerios. Squeaker never ate purees. They caused her to choke and gag. Her foods had to be as thick as an adult would eat for her to swallow with ease. Squeaker didn't eat massive amounts of food but she did eat a good variety of food. March also brought four teeth, and Squeaker did amazing with the pain and barely made a sound about it.
April and May were filled with meeting the Pediatric Gastroenterologist and more testing. Squeaker was still not growing and not breathing very well. After some blood samples, and ultra sound and a barium swallow we had another piece of the puzzle. Squeaker had moderate reflux. Reflux aggravates the larynx and make it flop even more, making it harder to breathe. Poor little girl. The doctor prescribed three medications to help cut down the acid and the pain. The downside to these medicines is that can slow or even block the absorption of food. Since Squeaker was already a slow grower we had try and give her even more food.
The summer of 2011 passed by all to quickly. Squeaker started walking, running, and climbing she was into everything! Squeaker still woke every 2-3 hours because she stopped breathing, was hungry, needed her diaper changed, or was in pain. Nights were long and during the day we still had to do 2-8 nebulizer treatments and 6 different oral medication doses to give. Between trying to sleep, and giving medicines our days were half booked. The other half of the day we just tried to have as much fun as possible. We'd go outside and "toss" a ball around, have tickle fights, and try to figure out how to keep Squeaker out of the DVDs.
1 YEAR OLD!!! We survived an entire year of craziness. It was such a relief to make it that far. We still had a lot of days that were struggles but it was our life. Squeaker was still very little, 15.5 pounds and 28.5 inches which made it very funny to watch her walk around.
October ended up being miserable for the entire family. For almost the entire month someone was sick. Squeaker was the worst. In the middle of the month she just started not feeling well. I figured we would end up with a course of oral steroids and some antibiotics. Then she started vomiting... everything. I'll save you the gory details but after 30 hours of nothing staying down we went to the ER. Not much they could do of course besides getting some IV fluids and medicines into her and tell us to follow up with the Gastroenterologist. The next day we did and found out Squeaker had a temporary paralyzed stomach. Pretty much her stomach said "I'm done" and quit working for a while. Thankfully after 4 days of a pure juice diet Squeaker started eating again. Another 3 days and she was back to normal.
After the paralyzed stomach and having to increase Squeakers medicines to help the reflux the Gastroenterologist wanted to do a test called a pH probe. In late December we did the test. Long story short it was a very long horrible 24hrs in the hospital. We were expecting the results to come back saying Squeaker needed surgery to help with the reflux. Boy when we were surprised the test results showing almost no reflux at all. With this new information the doctor decided that doing an Upper Endoscopy would be a good idea. I agreed. About a month later the procedure was done. No sign of reflux, but Squeaker's stomach wasn't right, it was squished. Instead of a nice J curve it was a U. What we thought was reflux was stomach cramps doing extra work trying to push everything out. And there was less space for food, so that's why we had problems getting Squeaker to eat more than a few ounces at a time.
The rest of January and almost the entire month of February Squeaker was on antibiotics for ear infections. We bounced between doctors offices and the ER. Every ear infection will make Squeaker's breathing worse and we had to do more albuterol treatments. 6 rounds of antibiotics and an ENT consultation later Squeaker was set up for an ear tube surgery. March 12th the tubes went in and we haven't had an ear infection since. WAHOO!!
Spring and Summer of 2012 were tough. Although we had solved the problem of the Ear Infections and we were off almost all reflux medication, Squeaker was still almost constantly sick. As it got hotter (and here in Alabama it got HOT) Squeaker's breathing got worse. We tried to work with her Pulmonologist to find a reason why Squeaker always sick and breathing funky. The doctor pretty much wrote us off saying it was her reflux causing the problem. This answer just didn't sit right so we looked for a second opinion. The next week we went a check up appointment with Squeaker's Gastroenterologist. He wanted us to stop all reflux medicines and see what happened. His instinct was saying that reflux wasn't a problem at all and should be considered resolved entirely. With those instructions and a referral for a new Pulmonologist on our merry way we went.
Just before Squeaker's second birthday we met with the new Pulmonologist. He had asked us to come in a little early before our appointment to get some test run so he'd have the results by the time we saw him. They did an x-ray, and a sweat test to check for Cystic Fibrosis. Both came back normal. Squeaker weighed in around 21 pounds and measured 31 inches tall. Next was to schedule a Bronchoscopy and a sleep study. The week after this appointment Squeaker came down with something terrible and the new Pulmonologist prescribed an oral steroid without even making us drive down to see him. Instead of it lasting for a month it was gone in under two weeks. It was so nice to have the trust of a doctor again.
This is considered a mild-moderate case of Laryngomalcia.
Squeaker was 25 months at the time of this Bronchoscopy and to her Pulmonologist
Squeaker’s larynx looks like an infants, mean 6-8 months old. Thankfully
surgery was not indicated as a treatment option she just need to keep growing. The question still remained what was causing Squeaker not to grow??
November brought another round of steroids, antibiotics, an immunology blood tests and a Sleep Study. The Sleep Study came back normal. No apnea, snoring, or other breathing issues. A big relief. The immunology test didn't come back so great. It showed Squeaker's immune system was under reactive. To get a better idea of how under reactive. Squeaker received a pneumonia vaccine and then the blood tests would be redone.
With an under reactive immune system it meant we had to change our home life. Squeaker needed to live with a lot less bacteria in her life. Now we were slobs but we weren't a Clorox everything family either. All of Squeakers toys, books, and stuffed animals had to be scrubbed down and washed. Not to mention our 1970s apartment with 10 year old carpets had to be cleaned, urg...
So here it is December 2012 and Squeaker is on yet another course of antibiotics and steroids. We haven't met with the doctor about the repeat immunology test, that appointment is in January. We have heard that the test results are not what the doctor wanted to see and the pneumonia vaccine was ineffective.
This is where our blog begins.
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