Confessions/Understanding

Alright I'm going to confess and explain some of my choices in our lives Trust me plenty of this is not the type of parent I thought I would be. But you a lot of times you just have to do what works.

1) Squeaker at 2 1/2 years uses a bottle 90% of the time.
--- Most sippy cups flows are too fast for her to breathe and drink at the same time. At about 2 Squeaker figured out how to use a straw and drink from a regular cup but her container of choice is a bottle. It took me a long time to be okay with that. I talk to her dentist and doctors they all concur nutrition is more important than weening. According to her dentist bottles and pacifiers cause less jaw and tooth alignment issues than genetics do. Whether that is really true who knows but doesn't matter Squeaker will be taking bottles for a while longer.

2) I wish my child took a pacifier
--- If Squeaker took a pacifier to comfort suck in the middle of the night she would drink less juice and have less chance for decay. Two teeth have already been pulled I'll like to avoid more.

3) I carry hot dogs in the diaper bag
--- You may think this is gross but really it's not. Hot dogs are fully cooked when you buy them and are safe for consumption when cold, they are also a great source of calories. Hot dogs range from 80-120 calories each. So it's not uncommon for me to grab a hot dog put it in a ziplock bag while on my way out the door.

4) The TV is almost always on
--- Thank fully Squeaker is a lot like me where TV is mostly background noise to play by. And when a song comes on she likes it's time to dance. Now that we have a bigger place we play in other rooms and forget to turn the TV off. But I'll admit a lot of mornings when we (Squeaker and me, Trey works late so he sleeps in) will head into the TV room and turn on a Veggie Tale. I'll lay down and watch Squeaker dance, or even doze in and out. I am proud of it not really but this is my reality. You spend even one night with Squeaker and you tell me your reality would be different :)

5) I HATE medicine that has to be given more than twice a day.

I want this! She is ready for little legos yet.

--- It's a constant fight to remember them. Plus it is very hard to get your toddler to slow down right after they woke up to sit and do a breathing treatment. Not to mention take an oral med that is really gross. So many days I wish there were different high dose meds that only needed to be taken once a day.

6) When I say I'm tired that is almost always an understatement
--- 9 times out of 10 I'm really exhausted. In the last 2.5 years I have gotten about 14 times where I have slept longer than 4 hours. Squeaker was 13 days old and magically slept 7 hours straight (never happened again yet). The first three days after my birthing repair surgery Trey took over nights. Day three everyone in the house but me caught some sort of flu bug. There have been several other nights where Trey has given me a night off or let me take a long day time nap. Usually Squeaker is up every 2-3 hours and in between she trashes, kicks and needs to be cuddled. It's tough on a mommy.

7) I don't think my child is spoiled by not letting her cry it out.
--- I'll let Squeaker scream and throw a fit. I don't pick her up right away. There are plenty of times when she never gets picked up and she gets over her problem just fine. But there are a fair deal of times when Squeaker will start to miss breaths or make funny sounds. That's when I pick her up. Now to the stranger or untrained ear she sounds like a kid looking for attention. Truth is she is starting to go into distress. So yes I pick her up. Lots of people have told me "She would have been fine, you are just spoiling her. She'll never learn to self soothe" I just smile politely and move on.  Of course in Alabama I get plenty of people who just think it's fantastic I don't stoop to the child's level are start yelling and screaming back. :)

8) I still fear that I'll wake up and Squeaker will be blue.
--- We have been very blessed that Squeaker has never had a blue spell but it is still a huge concern of mine. Especially when she is sick and breathing terribly. Is it a slightly ridiculous fear sure, I know that. But for some reason I just can't shake it. 

Clothing

Sometimes I get frustrated with the fact the Squeaker will stay in the same clothing size for what seems like and eternity. One of the worst parts in when seasons change. It is so hard to know if she will stay the same size all season or if she will go up. Thankfully from growing up in Maine I learned to layer clothes for three out of the four seasons. With a slow growing toddler this cuts down on what I have to buy. I can buy t-shirts at all times and just pick up sweatshirts, and long sleeves as I need or find them on sale. My other trick is I buy clothes when they go on super cheap sales and store them for another day. That way the day she is ready for a new size I am too.

I LOVE THESE!!!

And today is one of those days!!!! WAHOOO!!!! Our little Squeaker is able to wear 24months clothes. She is about 23lbs and 33 inches tall. It's almost always the height that moves her up a size. Because we all know how well she puts on weight, but with the aid of cloth diapers bottoms tend to stay up alright. I like to use Carter's size chart because it tends to work great for us. Also it is a company started in Maine and my first grade teacher (who I loved) was part of the family that started the company.



This is the Carter's Clothes Size Chart

Size detail Height Weight Preemie (P) Up to 17 in Up to 5 lb Newborn (NB) Up to 21.5 in 5 – 8 lb 3M 21.5 - 24 in 8 - 12.5 lb 6M 24 – 26.5 in 12.5 – 16.5 lb 9M 26.5 – 28.5 in 16.5 – 20.5 lb 12M 28.5 – 30.5 in 20.5 – 24.5 lb 18M 30.5 – 32.5 in 24.5 – 27.5 lb 24M 32.5 – 34 in 27.5 – 30 lb

All in all the next couple days will be exciting. Doing laundry deciding what to keep what to store, and packing it away. And of course getting out the 24 months clothes we have and putting those in Squeaker's dresser. Plus this coming weekend is one of the big area consignment sales for spring/summer! Bigger clothes for cheap Wahooo!!!!

Parental Stress

Ever parent worries. It's just part of the job we all know that going in. It's like knowing that everyday is an adventure, that your love for your child will grow to crazy amounts and that your child will pee on you. And if you didn't know these things at first it takes all of two days to figure it out. But when you child is chronically ill worry and stress grows to heights that would rival the Empire State Building.

I'm sure some folks would just say if you child is ill all the time don't you just get used to it? Some of it you do get used too. Squeaker for example sounds like she is out of breath almost all the time. It just part of the Laryngomalacia. She is fine just noisier that you would expect a toddler to breathe. And she is being treated for it. But when she gets sick for her she sounds like Darth Vader. It's awful. Even though this happens regularly, once or twice a month, I still spend hours just listening to her breath to make sure it's steady. If it becomes unsteady or too fast I have to give a treatment or even head off to the ER. And no matter how many times you take your child to the ER it doesn't become easier.

I guess that's where the bigger stress comes from. The fact that when you child is sick you just can't buy an over the counter medicine, hang out at home, and wait it all out. No a simple cough puts you on edge. Then the wheeze (that Darth Vader sound) means extra breathing treatments. Which of course your toddler doesn't want to take because it slows them down. Then of course you pray, pray and pray. The breathing treatments is that last thing you can do without seeing a doctor. Then you wake up on day four or five and it's all still there. The cough, wheeze, fast breathing... oh and now the nose is running. You hate to do it but you have to call the doctor. It may not be this way for everyone but most of the time when I call I feel like I'm being a worry wart mom. It's just a cold who needs a doctor... oh wait my child. Squeaker can't do colds... so yup have to call. After talking to the nurse and doctor, either in office or on the phone, you get a round of oral steroids and antibiotics.

Both of these medicines have side effects. We all know steroids can do crazy things to the body but they are the best thing for keeping Squeaker's airways open. But I worry because for 5-15 days out of each month she is on this stuff. Then of course the antibiotics. It seems like once a week the news is talking about antibiotic resistance. Whether it's in people or the types of infections hanging around. Of course the thing they talk about the most is that the less antibiotics we use as a culture the less dangerous these things will be. So I worry about resistance... how long before standard medicines don't work? Sure it will probably be a while if ever but it still weighs on my mind.

The next week to two weeks is filled with remembering to give doses twice a day. Which for me is terribly hard. You stay up later than you should just listening to the uneasy breathing change to something smooth and quiet. Of course it's hard to sleep because you have a little one in bed with you that insists on being in contact with you. It may be just a toe but it that connection is lost the little one wakes up. (This has happened four times since I started typing. Squeaker rolled and lost contact. She shot up like a jack in the box) So in the morning everyone is tired, but hey that's life.

Some maybe thinking how on earth do you do it. That is a lot of stress, how is your blood pressure not at dangerous levels. Well this is where the "used to it" come in. My brain goes a mile a minute with stress but somehow my body has adjusted and goes with the flow of life. The other trick is to enjoy the healthy times. A lot of times it's just a few hours a day when all the medicines are working. And every so often it's a couple days in a row. Last November we had a 10 day stretch! And even if it's not a perfectly healthy day you enjoy that days that don't require extra medications. You just have to be optimistic.

The most important thing I have learned it to let my sick kid live. Sure she can't play in large groups of kids, toys have to cleaned constantly and her hands need to be washed a lot. But we can read books, play blocks, climb, jump, chase a ball, dance and so many other things. It's best to focus on the positive and things we can do.

Another Step

What started as a simple cough for Squeaker turned into wheezing. Not uncommon for her. I just started adding albuterol to her morning treatment. It kept the wheezing at bay and Squeaker seemed to be getting better. Then on February 8th Squeaker had oral surgery.

Trey and Squeaker cuddling after surgery

Surgery went fine, she had her two top front teeth removed due to decay. 18 months (she got teeth at 6 months) of antibiotics, breathing treatments and overnight drinking caused some serious tooth problems. But after 1hr and 10 minutes Squeaker had two teeth pulled, about 4 fillings put in, a full cleaning, and teeth sealed. She was a trooper and did great. The anesthesiologist noticed excess mucus in Squeaker's nose and throat. He warned me she could be getting a cold.

Guess what showed up the next day? That's right a cold! By Monday breathing for Squeaker was not the easiest. Call the Pulmonologist and they started her on oral steroids and a high dose antibiotic. Today we had to go to down to Birmingham to see the Pulmonolgist because Squeaker wasn't getting better.

The appointment was good and bad. Lets go good first
Good- Oxygen levels fine, Temperature fine, Squeaker is a little taller (34 inches), and it's just a cold. We just have to stick to it and she'll be fine.
Bad- It's never fun to just wait out a virus, Squeaker caught a very tough cold while taking a prophylactic antibiotic, and lastly she has lost nearly a pound in the last week. At the time of surgery Squeaker was 24lbs in just her pjs. Today she is down to 23lbs 3oz. Ouch

What does this all mean?? In a couple weeks we start IgA therapy. (please note the price listed on the website is not our out of pocket cost) In basic terms they take human plasma, separate several parts, sterilize it and put it in an IV bag. Then it is infused into my little girl to help boost and fill in the holes of her immune system. Hopefully this will stop her from getting so sick. If your body isn't overdrive maybe she can keep and put on some weight.

So another step into working to get our little girl healthy for the long term.

pH Probe

This is an old copy for some new friends to see. 

Looking back it is almost surreal. I hardly know what happened when; if it wasn’t for the record keeping I’d probably be clueless. But I’m getting ahead of myself.

walking around at night

Monday we drove down to Birmingham, it was a nice sunny day. After admission and check in we were ready for the pH probe. Anyone who knows Squeaker, should know she HATES medical professionals. I swear she can smell it in people. And then they whip out a stethoscope oh by golly you have a screaming baby. By the time we got up to the GI Lab Squeaker was already pretty upset. First she had to have arm braces put on that kept her from bending her elbows to get to her face. Next she was strapped down to the table. As much as she kicks and screams I would rather have her strapped down than try to hold her. The probe was then fed through her nose and down her esophagus stopping right above the sphincter. A quick x-ray to verify position, and an adjustment of the probe it was securely taped down. The test had begun. The short lived upside was Squeaker could now eat. It had been nearly 4 hours.
It was a short lived upside because of the arm braces. Squeaker could not hold her bottle; it was too short for her to get at. And of course being the stubborn child she is me feeding her was out of the question. So during the 45 minutes that she was allowed to eat Squeaker managed a mere 1.5oz of milk. Yes I said 45 minutes allowed to eat. That precious 45 minutes would only come every four hours until the test was done. And those would be the only time she could eat or drink.  As if having a tube down your nose isn’t tough enough, arm braces and eating restrictions are now in the mix. Poor baby.
Oh and then there was the record keeping. I had to track when every eating time started and ended. Also what time she was sitting/standing up while she was awake, laying down while awake (all clothing and diaper changes), and the same ideas for sleeping, what time she would burp, cough, vomit or have pain. If the paperwork was not with you it can be very hard to remember when things happened.
In between eating times we’d go for walks in the main lobby. There was people playing Christmas music most of the day, wonderful decorations. And of course the stairs, the nice long stair case that was about three stories high. That was a lot of fun to watch Squeaker go up and down them. Remember she couldn’t bend her arms. So it was something to see.  She would get tired after about 30-45 minutes of play. So we head up to our room.
Even though we were on the fourth floor our windows looked at the tops of other buildings. But with a TV/DVD combo Veggie Tales were easy to fill in the time gaps. It also gave time for mommy cuddles too. During meal times we could take of one arm brace to let her eat but we had to watch like hawks to make sure that the probe didn’t get pulled at.

I swear the pack weighed as much as she did.

The overnight… well that just stunk. Squeaker is used to getting bottles to go to sleep and when she stirs in pain we would give her a bottle to help soothe her. If you had reflux in the middle of the night wouldn’t you want something to drink?? But I couldn’t give her anything. So we walked….walked… and we sang as we walked… and walked (anyone get the random reference?).  In total I spent around 3 and 3.5 hours walking the halls of the hospital keeping Squeaker calm and sleeping as much as possible. Finally around 5:30 is when I laid down to sleep, with Squeaker propped up in my arms. I woke up around 8 and Squeaker woke up about 8:30 am, Squeaker was done!!!! She was hungry, tired, sore, and probably angry. She screamed and cried until it was time to eat at 9:30. Once she got her milk she was happier. Then eggs, cherrios, and strawberries were gobbled up. In the middle of breakfast we got a call from the lab. They had someone coming in for a test at 11am. It would take over two hours. So they had decided that they were going to come early to take the probe out. YAY!!!!!!!!!!!!!!!!!!!!!
Probe was out and we were discharged by 11am.
Dr. King (the Gastroenterologist) did stop by a couple of times. And unless for some odd reason Rayne’s test comes back with a perfectly neutral pH level of 7 he will be sending her in for surgery since we don’t have another other medical options. But this test lets us know what to expect of the surgery. If Squeaker’s levels are BELOW 4 (highly acidic) a lot of the time then surgery will be a practical cure. If she is in the 4-5 Surgery is still call for but we can only expect it to be say 80% effective. So she may need mild meds to help out. But either way it would be a great improvement from the current situation.
The other reason for the test is for the surgeon. Dr. King believes that surgery (especially this one) is more of an art than a procedure. So he only likes to use the best available, who requires this test. In the long run I’d rather suffer for a day and get the best then just take any ‘just let me cut’ doctor.
Having mom there was awesome. A complete life saver, I didn’t have a clue what to expect this time around so she helped me figure out where everything was and who we needed to ask for certain things.  So during surgery if I’m there by myself well I’ll know what to do. She was there to let me know I could do this oh and she put up with me snapping at her when I was just past exhausted.
During our stay as hard as it was I felt so blessed the entire time. At check in the girl in front of me was 17 and battling Cystic Fibrosis. In our wing there was a little girl 7 years old that was brought down that day in near critical condition with Juvenile Diabetes. She also had a 5 week old little brother that had the flu. That poor mom was having a very hard day. Then of course the next wing over was for restricted access cancer patients. Sure life can be hard with Squeaker but boy are we blessed. She is such a wonderful little girl with a great spirit and attitude. Heavenly Father has entrusted me with His daughter and I have to treat her like the princess that she is.

Update: Rayne passed and did not need surgery a scope showed another issue entirely.