Twenty Nine and Feelin' Fine

That's right, kind reader. Today, June 27th, is my birthday. It's also my brother's birthday (we're twins and NO we are NOT identical). I'm 29 years old - yes, actually 29. I've always thought 29 was a "fake age." You know, people who are turning 30 always claim they are turning 29 again. Well, not me. At least, not this year.

A year ago, on June 26th, a Perinatologist told me that my baby (you may have heard of her? Madeline?) was perfectly developed. This came on the heels of my OB telling me that I was going to miscarry. I took this picture on that day:

This was the first time I was told there was a chance I might actually get a baby out of the pregnancy. That was all I needed to hear. I latched onto the doctor's words. I was determined to believe I would have a child, and it would be from THAT pregnancy. I realize now what a complete Pollyanna I was. I remember being in the waiting room, clutching the locket that held a picture of my grandmother. I made a deal with The Powers That Be that day: Give me my baby, and I won't ask for anything else. Of course, I renegotiated that deal this week. Still, I know Mike looked at me in the waiting room, talking to The Powers That Be, and was so scared. This is going to sound so stupid, but I just knew that nothing bad would happen to me on my birthday.

I'm typing this with my little Maddie on my lap. I know I said my 'fro was the best present ever, but I lied. The hope that my daughter could possibly survive is the gift I will cherish more than anything.

So, while I am blatantly stealing this idea from Casey (who, by the way, is having an awesome contest you should enter), the sentiment is the same. What is the best thing that's happened to you lately? Jackie! and I want to hear really awesome things. Maybe you got a pedicure. Maybe you won the lottery! Or, maybe you're my friend Rage and you ate two sausages at Target Birthday. Let us hear it! I accept anonymous comments, you know (but don't be a stranger - at least sign your name!). At the very least, wish Kyle a happy birthday!!!

My birthday wish, besides Jackie!'s health, is that everyone has something happy they can latch onto, just like I had last year.

Frequently Questioned

Our meeting with Dr. Looove went well yesterday. Maddie's oxygen saturation was back in the 90's, right where we like it. The blood tests showed that the diuretic hadn't adversely effected her electrolytes, so we're keeping her on the steroids and diuretic for the remainder of the prescribed seven days. Dr. Looove also said that she could tell Maddie's lungs were drier. That is a weird thing to type. Dry lungs? Sounds uncomfortable. We don't have to put her on oxygen during the day unless she's fussy. Dr. Looove was, as usual, awesome, and stayed late to talk to us on a day she was planning on leaving early.

You had questions and I have answers.

Q. Why did Dr. Lung think Maddie had cystic fibrosis?
A. To be fair, she wasn't the only doctor that thought Maddie might have it. She was tested in the NICU for it as well. She had/has a lot of similar symptoms: inability to pass meconium, lung collapse, distended abdomen, slow weight gain, coughing and wheezing. And while I'm glad the doctors were thorough and checked her to rule it out, I'm pretty sure that both parents have to carry the CF gene for a child to get the disease. Neither of us have the gene. Pointless testing? You be the judge.

Q. Are these these difficulties primarily due to her prematurity?
A. Yes. I would say 100%. Her lungs were very underdeveloped because my amniotic fluid was so low the last ten weeks of my pregnancy. One of the NICU doctors said that while Maddie was born at 28 weeks, her lungs were more like those of a 24-weeker - and a very sick one at that. Because she was born so early, she was on a ventilator for four weeks. It was a life-saver, but the pressure and mechanics involved with a respirator did a bit of damage to her lungs.

Q. Has anyone been able to tell you when Maddie's breathing issues will be over?
A. When she was in the NICU, one of the doctors told us that 50% of kids with Maddie's issues outgrow them by age two. Fifty percent of the kids that don't outgrow the issues by age two outgrow them by age seven. And the rest of the kids are screwed. Just kidding! They basically have asthma. I don't have a crystal ball, but I'm assuming that Maddie probably will have some sort of lung issues her whole life, but hopefully it's no more serious than asthma.

Q. When will Maddie outgrow her need for oxygen and breathing treatments?
A. Good question. We don't know. Hopefully she will outgrow her need for oxygen soon, like in the next few months. I have a feeling the breathing treatments will be around for a while - maybe the frequency or dosage will change, though.

Q. What was Maddie fed in the NICU?
A. Maddie wasn't permitted to take food by mouth until December 15, over a month after she was born. Up until that point, she was fed total parenteral nutrition (TPN) through her IV PICC line. When she was finally cleared to start eating, she was fed breast milk I'd pumped and frozen. That was back during the brief period when my boobs did more than just look pretty.

Q. What are Maddie's favorite solid foods?
A. Maddie has yet to fully embrace the wonder of solid foods. However, she seems to tolerate apples and carrots the most. We haven't tried the green foods, yet. Those are coming up this week. Whooo, I can hardly wait. Life is crazy-exciting around here.

Q. What do I do for a job?
A. I work in sales for a professional sports team in Los Angeles. The sport involves sticks and balls, and they actually play in LOS ANGELES and not ANAHEIM. I don't want to say the team name here for Google protection, but if you can't figure it out from these hints you can email me. Professionally, I am known by a different last name. Sometimes I get deliveries to Heather Spohr at work and people seriously have no idea who that is.

Q. How old am I?
A. I ask myself that all the time, especially when I'm laughing at the word, "duty." DOOOODY! HA! But on Friday, I will start the last year of my twenties.

Q. What song did you sing at the Karaoke bar the night you met Mike?
A. "Criminal" by Fiona Apple. I also totally stripped down to my underwear and writhed on the floor. If you haven't seen that music video, that last sentence probably didn't make sense. Just like the video.

Q. How do you get so many photos of Maddie smiling?
A. A more appropriate question would be, "Does Maddie ever stop smiling?" Because she smiles all...the...time. She is so happy that sometimes Mike and I are like, "kid, we need to tell you about this really bad earthquake in China." She needs some perspective.

Q. How did you get such a cute baby, and isn't it illegal to have a baby that cute?
A. Maddie looks soo much like me when I was her age, except I was way fatter and I had lighter hair. These pictures are the best examples I can find at the moment, but fo' rillz, she's my mini me (with some Portuguese flavor from Mike).

Maddie at six months old.
Me at six months old.

I would show a picture of Mike at six months old, but he's the youngest so his parents were totally over taking baby pictures by the time he came around. Or maybe they didn't have cameras back then. In fact, I'm not entirely sure that he ever WAS a baby. He might have just been created as a five year old. We'll never know for sure.

As for the legalities of having a baby this cute, well, if she's breaking the law, we're going on the lam.

Washing It Away

Thank you all for the kind comments, text messages, emails, tweets, and carrier pigeons. I don't have pity parties very often because, really, feeling sorry for myself is not a good use of my time, and I have too much to be thankful for. However, everyone needs to let it out every now and then.

Maddie's new amped-up Xopenex breathing treatment works wonders. After she has it, she breathes like a normal baby, not a wheeze or whistle to be heard. Of course, four hours later, that's all back, but then it's time for another breathing treatment. The diuretic is making her pee like a freaking...hmm...what is something that pees a lot? Insert that thing here. Because she's peeing a LOT. Friday morning's blood tests will determine if it's too much pee. Apparently you CAN pee too much. That reminds me of that one New Year's Eve where I got so dehydrated I didn't pee until 4:30 pm on January 1st. Man, did we celebrate when I flushed that pee down!

What the heck am I talking about?

We were worried the higher oxygen setting would be very uncomfortable and disruptive to Maddie's sleep, but it actually had the exact opposite effect. She slept like something that sleeps a lot (insert that thing here). Last night she slept from 12:30 to 6:30. Mike and I did a damn jig this morning when we realized we'd had six straight hours of sleep. Then we pushed each other over as we ran to make sure she was okay. I know every parent does that the first time their child sleeps for a long period of time.

I received a few comments and emails with questions. For example, Memphislis asked Dr. Google (who is looking for new patients, by the way) if the extra oxygen would hurt her eyes. Dr. Google is not trained in The Ophthalmology, so she deferred to Dr. Looove. Dr. Looove said that oxygen is only a detriment when eyes are developing, and Maddie's eyes are done developing. So that's good. Kailey emailed me to ask if two liters was a lot. Well, for Maddie it's a lot. The highest she's ever received was 2 1/2 liters/minute when she was in the NICU. We're hoping that two liters is only temporary.

I want to open up my comment section to any questions you all might have about Maddie. Anything from my pregnancy to her time in the NICU up to today. It's all up for grabs. I'm hoping your questions will help me keep a better record for Maddie, and also help remind me of crucial things I might have forgotten over time. I also want to make sure I'm not leaving anyone behind with my jargon. Should I have an FAQ section? Mi blog es su blog. Or something.

If you don't have any questions, feel free to tell me I'm awesome. After all, tomorrow starts my birthday week! We'll keep you all posted on the test results.

Breathe In

Hey, remember that baby I have?

Yeah, that one.

A few weeks ago I blogged about taking her to the pediatrician because we noticed her breathing was labored. Dr. Looove was concerned but gave her steroids, blah blah blah read the other post to get the prognosis there. Long story short, her breathing hasn't gotten better, so today Mike brought Maddie back to see the good doctor.

The first bit of good news is that Maddie now weighs eleven pounds, eight ounces! Beat that, Stefanie! The other bit of good news is that she wasn't hospitalized...thanks to the oxygen rocket.

Dr. Looove took Maddie's blood oxygen rate when they arrived in her office. It was at 73. A high-dosage breathing treatment was administered, and her number went up to 85. Still not the over-90 we need Maddie to be at. Mike took her to get an x-ray, and then another measurement was taken. Still at 85. At this point, Mike started to mentally pack Maddie's hospital bag.

Dr. Looove came back into the exam room and went over Maddie's x-ray with Mike. She said Maddie still has small areas of collapse (atalectisis) throughout both lungs. Dr. Looove said, that besides the atalectisis, her lungs look just like those of an asthmatic. Then she said, "if you didn't have oxygen at home, I would have to admit her."

For the next two-plus days, we have a strict regimen to follow. We are giving her a more concentrated breathing treatment four times a day along with her inhaled steroid. She'll be taking a diuretic with the intention of removing excess fluid from her lungs, and an oral steroid (different from the inhaled one) to strengthen her lungs. We have to put her on oxygen throughout the day, and she has to get two liters per minute instead of just a 1/2 liter. Friday morning she has to get more blood work done to make sure the diuretic isn't stripping her of important nutrients. Then, we're meeting with Dr. Looove just before lunch to go over the blood results and plan where to go from there.

Take note that Dr. Lung is not involved. But that's another story.

I knew that the first couple years of her life were going to be filled with doctor visits and trials. I've prepared myself for her many appointments and I know there are most likely going to be hospitalizations in her future. But it's still hard. I hate hearing her wheezy and labored breathing. It's heartbreaking to see her work so hard to draw in air, something that is effortless for the rest of us. She's getting bigger and stronger, but her lungs aren't. Tomorrow I will take comfort in the fact that she is still smiling, but tonight I am going to snuggle my baby and cry.

Maddie Melodies

Mike and I are really trying to make sure Maddie is into music. I'm sure that surprises no one who reads my blog regularly, since I showed you her music-themed nursery. Mike and I are both musical. I grew up playing the piano and singing, and Mike taught himself piano and guitar (his singing voice is great, too). When Mike and Maddie are spending the day at home, Mike plays music for her - everything from the Beatles to Wilco to Mississippi Delta Blues.

We also sing to her a lot. Not your typical nursery rhymes though, but songs we make up. Which also reminds me, can you people please give me the names of some nursery rhymes? I seriously can't think of any except "Rock a Bye Baby." I must have a mental block. Anyway, some of our songs are sweet. Like the one that Mike wrote for Maddie right after she was born:

Madeline, sweet baby Madeline,
Oh what a perfect mess you've got us in,
Madeline, our little Madeline,
You've got the cutest little toes I've ever seen!
And just like I need my heart, I can't be apart from Madeline!
Like a horse needs its cart, I can't be apart from Madeline!
Just like Milhouse needs Bart, I won't be apart from Madeline!

Mike plays the guitar to her while he sings*. Yeah, I know, freaking adorable. I wrote her a little lullaby that I originally sang to her when she was in the NICU:

Baby you and I will fly up in the sky,
fly up in the sky where the world looks little.
Baby you and me, together can't you see,
we'll fly up in the sky where the world looks little.
We're gonna be close to heaven above,
we're gonna be warmed by the sunshine's love.
Baby you and I will fly up in the sky,
fly up in the sky where the world looks little.

They aren't all sweet songs, though. Sometimes she'll be on the changing table and I'll start chanting,

Maddie Moo-zer!
She went poo-zer!
Formula just went right through her!

Yeah, it's a song about poo. They can't all be gems.

We repeat this one to her whenever she goes on a hunger strike.

My Madeline, you are so sweet!
But damn it girl, why won't you eat?
Chow down your food or I will threat
embarrassment here on the 'net.
Munch on these peas, carrots, or pears
to help avoid quizzical stares.
So come on baby, get some chunk
and yummy junk into your trunk.

I'm sure you've read our little songs and chants thinking, "these Spohrs are even stranger than I thought!" And we totally are. But, Maddie loves the loves the songs. She laughs and squeals whenever we sing them. I guess we'll find out soon enough if she's laughing at them or with them.

*if enough of you ask, perhaps I can persuade Mike to let me put a video of him singing to Maddie on You Tube...

All My Beeyotches

You all are so nice to compliment Mike and me. But really, I am putting the best possible pictures up here. Believe me. It's my blog, so I get final cut. Although, when I was looking through my 5 billion flickr photos, I found a few that almost made the cut, but were just edged out. Like this one:

Sexy.

It never occurred to me that you would want to see a picture of the drag queens. Here are my gorgeous queen friends posing with my old roomies Jackie and Bella. This picture is from Halloween 2002, which is why Bella has on a snake skin hat and Jackie has a bone in her hair. I'm taking the picture (I was dressed as a sexy nurse, let your imaginations run wild), but I would be doing all of you a disservice if I didn't point out that the wigs, earrings, and other embellishments are all made of feminine products. Click on the picture for a closer look.


Ginger wasn't my maid of honor because I didn't have a maid of honor - I had a Matron. Splitting hairs, I know. My Matron of honor was my bestest friend in the whole world, Tara. We've known each other since we were two years old, and we were lucky enough to grow up three houses away from each other. As hot as Ginger and Ginger's friend are, Tara is way hotter - and 100% woman. Tara is the bomb, and I'm not just saying that because I indirectly implied that a drag queen would have been a better honor attendant than her. No, I'm just saying it because it needs to be said. And also, Tara knows way too much about me for me to ever let her be mad. She has more dirt on me than the Scientologists have on Katie Holmes. I love Tara!

Maddie had a busy day today. My parents picked her up at the crack of dawn to take her to the Catholic Girls High School by their house. One of their best friends is the religion teacher there, and she had her students pray for me and Maddie every day we were in the hospital or I was on bed rest - we're talking 140 days of praying here. Today was their last day of school, so my mom brought Maddie in so the girls could meet her. I forgot how baby-obsessed teenage girls are. My mom said the squealing was insane, and several of the teenage girls said, "I want a baby NOW!"

In related news, 27 nuns simultaneously fainted dead away in a Los Angeles Suburb.

Mother of the Year

Madeline has started giggling outrageously whenever she thinks something is funny. The best part is that she laughs at the appropriate times. Like, just a minute ago, Mike farted, and she thought it was the funniest thing in the world. Me, I just don't get the humor in farts. She also laughs when I tell her jokes. If I'd known she'd be such an easy audience I would have had her a lot sooner.

Her laugh is like chocolate chex, I just can't get enough. This morning, I was making her dance. You know, making her clap, wave her hands, etc. She was in the middle of the best giggle of all time when I moved her hand across her face (Come on, Vogue...VOGUE!), and she gouged a chunk of skin out of the bridge of her nose with an errant thumb nail. Oh, the wailing and the crocodile tears. I felt like crap. Not only did I neglect her fingernail upkeep, but then I forced her to stab herself.

I scooped her up and carried her toward her nursery so I could calm her down and clean up THE BLOOD. When I walked through the door to her room, she threw her little arm out and grabbed the door jam. I didn't see this, of course, so her arm got wrenched back and OH the wailing and the crocodile tears.

I had to get some wipes for THE BLOOD and the nail clippers for her talons, so I laid her in the crib while I gathered my supplies. After I grabbed the wipes bag, I realized she wasn't crying. I peered over the edge of her crib and saw her sucking her thumb. It's so cute I could die. I softly said, "aaaawwwww," but apparently she has bionic hearing, because she jumped out of her skin, and in the process managed to cut the inside of her lip with her devil thumb nail. Babies' mouths bleed a lot. Just sayin'.

After I managed to clean up and calm down Maddie, I sat down in her rocking chair. I lifted my right foot to cross my legs...and kicked the dog square in the head. Rigby is a little dog and is somewhat used to getting beat up, but I guess I have Beckham-like strength in my leg because poor little Rigby let out a yelp of pain that pierced my already shredded self-confidence. I reached down and picked Rigby up with the intention of comforting her...and as I lifted her, I slammed her already-injured head into the changing table, eliciting another yelp. I tried to put her in my lap, but it should surprise no one that she immediately ran away and hid under Maddie's crib.

If you're looking for me, I'll be hiding from Child Protective Services and the ASPCA.

To Be Normal

After approximately one bazillion calls to her office, Mike and I finally got a hold of Dr. Lung. She had Maddie's Cystic Fibrosis Sweat Test results in her evil little hand. If you remember, anything under 30 is considered Normal, 30-60 is Borderline, and above 60 is Abnormal. Maddie's test came back at a 10. Normal. In fact, Dr. Lung even conceded, "I do not think she has Cystic Fibrosis." No shit, Sherlock!

Rejoice!

Bridges to Cross, Bridges to Burn

Thank you to everyone for your advice. After I posted last night Mike and I had a talk and decided we are going to explore other options for Madeline's care. More specifically, we're going to seek second opinions through other hospitals while exploring our options at our current facility. We're going to set up a meeting with Maddie's pediatrician, Dr. Looove, to fill her in on what's been going on. She's been out of the office for the last few days...she didn't clear her vacation with me, but I'll forgive her this time. I'm consulting with a few people I trust who work for Dr. Lung's hospital to find out what's involved with the whole ethics thing. Believe me when I say my complaint has already been written, and now I'm just trying to figure out where to send it.

My mom was on vitals.com today (a new doctor-rating site) and discovered that we're not the only ones who thought Dr. Lung was crap. Out of a possible four stars, she has one. Her staff received a 0.7. Nice. I gave them zero stars. Bastards. I wish I could link to her but I promised Mike I wouldn't get sued in 2008.

Most of you asked what constitutes Dr. Lung being the best around. Well, I have done a lot of research on her and her credentials, her awards, her published papers, etc, and she's a genius. Literally one of the top pediatric pulmonologists in the country. ON PAPER. As the last month has shown (and a lot of you pointed out), her application of this knowledge is lacking. We didn't have the option to choose her - Maddie was an in-patient and you get who you get in that case. Now that she's out-patient, there are more options and we're going to take advantage.

Ideally, we'll be able to stay at our current facility as switching would be quite a nightmare. My insurance would probably laugh in my face - they are probably looking for ways to drop our multi-million dollar family every day!

Moving on. Maddie had her repeat sweat chloride study today. This time we were at a Cystic Fibrosis Foundation accredited facility, so the results should be more accurate. The technician told us that she'd reversed the last three results from Dr. Lung's facility. Hopefully Maddie will be the fourth in a row. We'll get the results tomorrow morning, so everyone think happy thoughts. If you subscribe to my site feed, you saw my mobile picture posts from the test. We were there longer than we were supposed to be, as Dr. Lung's office didn't send the correct paperwork - even after I confirmed with them yesterday afternoon it'd been sent. Luckily, this facility was great and they fixed the problem - it just took an extra hour and fifteen minutes.

I'm tired of these ranting, negative posts. Coming up, posts about carnivorous chickens, vomiting husbands, and blond 'fros. With pictures!

She Was Born For My Amusement

I can't be the only one who does stuff like this to their kid:

This Post Will Be Used Against Me in a Court of Law

Those of you who've been reading for the last month know that I'm not really pleased with Maddie's pulmonologist. She is the best pediatric pulmonologist around, and that is why we stay with her. But today, oh man, I was thisclose to setting her office on fire.

We are under my health insurance. The main phone number in Madeline's file is my cell phone. The secondary number is my office line. They have no problem calling either of those numbers when they need to confirm an appointment, get a payment, etc. I am the main contact for everything. But so help me, they are AFRAID to call me with results. They ALWAYS call Mike, because he is the Good Cop, and I'm the Raging Mom Who Yells.

Today, Dr. Lung's nurse called Mike (grrr) with the results of Maddie's overnight oxygenation study. Nurse Lung said that the results came back normal. When Mike then asked if that meant we could lower the amount of oxygen Maddie received at night, Nurse Lung said, "No, Maddie is going to be on oxygen for a long time." Okay, but isn't the point to wean her off? "No, not that I'm aware."

Mike has so much patience (that's why he's still married to me), that he didn't immediately go ballistic. Instead, he changed his tactic and asked Nurse Lung if prolonged oxygen treatments would harm Maddie's vision. When we were in the NICU this was a BIG issue - too much oxygen can mess with retinas. Apparently Nurse Lung missed that day in school, because she answered Mike's question with, "What do you mean?" Gah! When he pressed her further, she told him that we'd probably want to make sure Maddie had regular eye appointments. That did not sit well with Mike. He said to Nurse Lung, "My wife is going to call you later, so you'd better have some answers for her." Nurse Lung stammered back, "Oh, well, I will be at the hospital so she'll have to leave a message for me."

What she didn't know was Mike was instant messaging me a transcript of their conversation in real time. I called the office so quickly Nurse Lung never could have imagined it would be me on the other line.

You should have heard the way Nurse Lung's voice fell when I identified myself. She went from chipper pediatric nurse to a sullen teenager. I told her that I knew she'd just spoken with my husband, but could she please explain everything to me? She said sure, and then...crickets. I literally said to her, "Speak. Explain." She finally told me everything she'd told Mike, so I said, "According to what we were told when the test was ordered, if the results were good her oxygen would be lowered. Is this still the case?" Nurse Lung stammered (STAMMERED!) that as far as she knew, this was not the case. "Well, what DO you know?" As she stammered some more, I lost what little cool I still possessed.

I told her that my biggest issue with Dr. Lung and everyone who works in her office is that they don't tell us the truth. They'll tell us oxygen will be ordered based on the results of a test, then I'll find out that it was ordered before the test was administered. They'll demand a transfer to their hospital for a procedure, then after our arrival they'll tell us Madeline is too small for it to be performed. Or they'll tell us that she is going to be weaned from the oxygen when really, that was never the plan. I said that it was ridiculous that the person calling to pass on important information had absolutely NO knowledge of anything pertinent, that it was unethical to lie to the parents of a patient, and that I had half a mind to report them to the ethics committee (a huge, huge deal). I think at that point, Nurse Lung had a stroke and crapped her pants. She said Dr. Lung would call me back right away.

Guess who never called me back?

Oh...Second Base Means Boobies

Just a few things to wrap up the week. The first thing is that, in my last post, I wasn't clear that my birthday countdown is a month long. It started May 27...so that means my birthday is at the end of June. Don't you all worry, I will give weekly reminders of how many shopping days are left until my birthday.

Maddie is holding steady. She has a good cough that really moves all that mucus junk around. She occasionally coughs some of it up, and the look of disgust on her face when this happens is priceless. We're hoping that the steroids are working, but we'll know more in a few days when the course is done. Last night she had another oxygenation study, but this time it was at home. I think it went just fine. She stayed in the high 90's or at 100 for the whole night. Dr. Lung should review the results and get back to us ASAP. Most likely she will lower the amount of oxygen Maddie gets overnight, with the intention of weaning her off of it soon. Hopefully very soon. Fingers crossed.

One of my coworkers has breast cancer, and she's having a partial mastectomy on Monday. Today we all surprised her by wearing pink to show how much we love and support her. Coincidentally, she wore her shirt that says, "Save 2nd Base," and a pink wig. I'd dared her to wear the wig for weeks now, so it was a dream come true for me. Anyway, we all decided it was necessary to take a picture of all of us in our pink glory, so in honor of second base, we went down to the local field for a photo.

Good luck, D! You're amazing.

The Beginning of a Beautiful Relationship

Maddie wasn't worse this morning. So that's...something. Ugh, I'm sick of worrying. Because of her varying discomforts (cough, teeth, PMS), she is not the biggest fan of eating. Mike is pretty sick of feeding her baby-bird style with a medicine dropper, although he would never admit it. We knew we had to think of something different.

Yesterday Maddie reached four months adjusted age. Dr. Looove said we could start feeding her baby food, but we'd decided we were going to wait. She'd had suspected NEC when she was in the NICU and we didn't want to rush anything. Of course, we decided this BEFORE Maddie went on a hunger strike, so today we said screw it and I bought her some baby food.


Ready for my first big girl meal!


First bite! I don't think I ordered rice cereal...


Apple Sauce! That's more like it.


I need a breather!


Dad, is it an airplane or a spoon? Get your story straight and get back to me.


Rigby actually likes me!


I told Rigby I won't eat her food if she won't eat mine.


All done! And now my face is clean. Thanks Rigby!

I don't know who liked solids more, Rigby or Maddie. She really despised the rice cereal. I don't know if she didn't like the texture or the taste. We would have put solids on the back burner if apple sauce hadn't been a success, so I'm glad I got the apple on a lark.

We only plan on feeding her food once a day until we think she's really getting a full meal out of it. Any flavor suggestions out there? Don't worry, the dog will eat anything.

An Urgent Visit That DOESN'T End In Hospitalization

On Saturday, Maddie had the tiniest beginnings of a rattle in her chest. It almost sounded more like she had something in her throat, and she could just clear it, she'd be fine. When she'd cough, the rattle would go away, so we figured she was breathing through all the saliva that comes with teething. I went about my business, meeting a friend for coffee and then going to work for a few hours (yeah, I know, work on a Saturday night, blech). When I came home, Mike said she was doing great, so I stopped worrying. Then Maddie started shaking and projectile vomited mucus all over me. Welcome home, mommy.

After that, Mike and I took turns watching her. We didn't think she needed to go to the emergency room, but we didn't want to miss any signs that could indicate otherwise. I pulled a roll-away bed into her nursery and I slept next to her crib. She had a good night, but the rattle in her chest was more noticeable. We still didn't think she needed to go to the ER. The biggest indicator that she needs a doctor is when her inhaled treatments no longer make her breathing better. Luckily, they were still making a difference. We went ahead with our weekend plans, and spent time at my parents' house with my aunts, uncle, mom, and dad.

On Monday the rattle in her chest was the same. At that point, we were just hoping to keep her status quo until Tuesday, when Dr. Looove's office would be open. It's not that we wouldn't have taken her to the emergency room if she'd needed it - we've taken her three times in the last three months - but obviously, the emergency room is a place to be avoided. My parents insisted that Mike and I still run our errands and have some free time, so we left Maddie in their capable hands and got stuff done. I did my best not to worry about her.

This morning, the rattle was still there. Not better, not worse, but now accompanied by a cough. I called Dr. Looove's office and made an urgent appointment for Maddie. She couldn't see her until this afternoon, so I pretty much sat at my desk and stared at the clock, waiting for Mike to call me with the verdict. I got a text from Mike 10 minutes after the appointment started that said Maddie weighed 10 lbs, 9 oz (up 5 ounces from two weeks ago), but then nothing for over an hour. With each passing minute I had a sinking feeling Dr. Looove was going to admit Maddie, but I sat there quietly and slowly went insane.

Finally, almost two hours after her appointment started, Mike called me to say that while Dr. Looove was concerned about the rattle, she wanted to take a few extra steps before admitting Maddie to the hospital. She wants us to put Maddie on oxygen whenever she's fussy (which we were already doing), and she prescribed an oral steroid that will help boost her lungs. Her breathing treatment schedule is still really strict. Her steroid course is five days, after that, if she isn't better (or if she gets worse before the five days are up), we're supposed to bring her back to Dr. Looove. I really hope the steroids can keep her out of the hospital.

As I'm typing this, Maddie is asleep in her swing, coughing. After she coughs, she gets this this sad look on her face that breaks my heart. I don't want to wish her life away, but I can guarantee I won't look back on these parts of her life fondly.

Lifestyles of the Cute and Teething

I've been wanting to show Maddie's nursery for a while. Mike and I knew the theme of the room before we knew we were having a girl or even before we'd decided to try for a baby. Mike and I are music freaks. The two of us together literally have THOUSANDS of CDs, tapes, and records. We've been to more concerts than I can count, and we have three iPods jammed to the brink. So it should be no surprise that our child's nursery has a music theme.

Once we got the all-clear from the NICU that Maddie was going to come home, we had to move quickly to get her room ready. We dismantled the guest room and got new carpet. Mike and I settled on a color for the room, and my parents and cousin Leah came down to help us paint. We wanted a feminine color, but not overly girly.

Once we got the walls done, it was time for the furniture and decorations. I really wanted to get her furniture she would be able to use for her whole time under our roof. We got one of those newfangled cribs that switch into a toddler bed and then into a headboard for a full-sized bed. I really love the crib we picked out for her, it's so pretty. I need a better picture than this one, I took it a while ago, before she was using it regularly...it is practically overflowing with her toys!


The mobile over her crib is a bunny band. There is a rabbit playing the drums, one playing a flute, and another on the guitar. She could stare at it for hours. I think the clicking and sliding noises it makes are really irritating, but she loooves it.

This is her dresser, aka Place We Pile Stuff.


Besides the stuff we pile there, I keep these two special things. My grandmother gave the angel to my mom's best friend 27 years ago. It watched over both of her sons. At my shower, she passed it on to me to watch over Maddie. The folded fabric is the first hat Maddie ever wore. The NICU staff at the hospital she was born at gave it to me before she was transferred. I kept it with me every day until she came home from the hospital.

Mike and I love the plush green rocking chair we picked out, it's insanely comfortable. Rigby loves it even more than we do. You can see Maddie's changing table next to it. It's actually not a traditional changing table, but a long bureau with a changing pad attached to the top.


In the middle of the room we have a purple rug. It's shaggy and, we later learned, not washable. A brilliant purchase for a baby's room. It reminds me of a Muppet, so I've taken to calling it the Muppet Skin rug. Here is Maddie modeling it.

Seriously, tell me that doesn't make you think of a Muppet.

What musical room is complete without musical instruments? My cousin gave her the awesome red piano. Mike and I bought her the guitar. It's on the floor now, but we plan on hanging it up soon, most likely over the windows where a crawling baby can't reach it.

Here is our little rock star modeling her guitar:

She has to grow into it.

My mom gave her these cute little letters that attach with magnets, and this baby toy that I've decided is singing.

We had a concert poster made to announce Maddie's birth. The company we went through, Rattle-N-Roll, was great. We sent them a couple photos of Maddie, and this is what they came up with. They also gave us a ton of little ones to send in the mail. I, uh, still have to get around to sending a bunch of those.




On the main wall of the room we have our big project, nine framed record albums. But not just any record albums - they all have babies or children on the cover. It's a pretty big display and it took a while to find all the albums - we never could have found them without the help of my mom, cousin Leah, friend Nora, and eBay. Below is a close up of each record, and if you put your mouse over the picture you can find out the name of the album.





Last but not least, is Maddie's very own album cover. I linked to this picture a couple months ago, but it deserves repeating. Our awesome friends Cat and Adi (who just had an adorable daughter themselves) took a bunch of pictures of Maddie and made this album cover especially for her. We put it in a record frame, and it's hanging on the wall next to her door. The recording academy has already certified it Triple Platinum.


So, there you go. Not your typical little girl's room, but our little girl is anything but typical.

Three Day Weekend

Happy Memorial Day weekend! Hopefully the weather is nicer where you are than around here. We plan on BBQing rain or shine. Don't forget your shades and sunscreen!

What are your plans for the holiday?

The Latest Adventures With Dr. Lung

Like I mentioned yesterday, Maddie's trip to Dr. Lung's office was basically successful. We were worried that Maddie would be a mess in her office what with the NON STOP crying, but I think she must know English or something because she actually listened to us when we begged her to sack up and not cry in front of the doctor. I know you're thinking that she's a doctor who specializes in pediatrics, so she should be used to teething babies...you give her too much credit. Dr. Lung is an alarmist. She FREAKED one time because there was some snot in Maddie's nose that was causing a whistle when she inhaled. No joke! Everything has to be perfect or the doctor gets all jittery.

We were told to arrive an hour before the appointment so a chest x-ray could be taken. Mike and my mom (who filled in for me!) arrived as directed, only to be told there wasn't an order written for the x-ray. So they had to go back to Dr. Lung's office to ask for an order. When they got there, Dr. Lung said, "Oh, well, I just sent another one of my patients down there for an x-ray! Can you do it after the appointment?" Nooo. They got there an hour early per your instructions, Dr. Lung! What are they supposed to do for an hour? After some hemming and hawing, the doc decided to see Maddie right then, and she'd have her x-ray after. Annoying, because then Dr. Lung would go over the results with us on the phone instead of in her office. We like to see what she's talking about, with visual aids.

Dr. Lung wanted her weighed because she didn't trust our pediatrician's scale. When I heard that, I felt affronted. Does she not know the awesomeness that is Dr. Loooove? Maddie was weighed, and she'd gained two ounces since last week. Not stellar, but Dr. Lung was pleased for some reason. She listened to Maddie's chest and said that Maddie sounds "way better." It was determined that Maddie will have another overnight oxygenation study, but this one will be at home. We have to call a company to bring out the monitor and set it all up. She also has to be on oxygen at night until her next appointment, which is in a month. At that point, Dr. Lung will decide whether or not to keep her on it or start to wean her off.

The doctor called us at home later to say that Maddie's x-ray came back and showed lots of improvement since her last x-ray three weeks ago. I always hold my breath when we get x-ray results, because we can never ever predict how they are going to turn out. It could always go either way. Luckily the stars were smiling on Maddie's lungs yesterday.

We also talked a bit more about Cystic Fibrosis. We are still going forward with the repeat sweat test. Dr. Lung tried to set it up for us in Long Beach, which is not convenient for me so I told her no. So I'll be handling the scheduling of this test, at a different facility. I want to make sure this doesn't have to be repeated EVER again. Dr. Lung also had no good explanation for why the blood work was messed up when Maddie was in the hospital. She swore that both of her residents ordered it, but yet, it wasn't done. When pressed, she finally admitted that there was a mistake. Maybe because there was some loudly spoken words from us? Sometimes I just can't reign it in.

Later that night, we noticed that three of Maddie's diapers had traces of reddish/pink in them. Just a little spot, and only on the wet diapers, not the dirty ones. I'd read somewhere that girl babies sometimes have period-like discharge, so I figured that's what this was. I went about my business and forgot about it until my daily bitch session with Stefanie. She pretty much shamed me into calling Dr. Looooove about the redness. A nurse from her office called me back and said that most likely it was something called urate crystals. They're common when a baby is dehydrated. Maddie is most definitely dehydrated, but it's not from our lack of trying. The teething is making her not want to eat. She'd rather chew on the nipple than drink in the sweet deliciousness that is Enfamil AR. When we were trying to get her to eat, I noticed that she eagerly gobbled down the Motrin we gave her, so I had the bright idea to give her the formula through a medicine syringe. It worked! Mike sat there for an hour and gave her four ounces of formula, 4mL at a time. Like she was a baby bird being nursed back to health!!! Since then, she's taken most of her feedings by bottle, but Mike has broken out the medicine dropper a few times. The things we do!!!

The Great Teething Test

As soon as Maddie's pediatrician (looooove) said it was okay to give Maddie Baby Motrin, I ran to the store to purchase all of your teething suggestions. I was surprised that I couldn't find ANY of the homeopathic teething tablets. Of course, I only went to one store, but I figured that since this is California, we'd have all that healthy stuff everywhere. Apparently the Ralph's by our house doesn't believe in that stuff. Alas.

Mike and I put together a four point rating system to determine what was the best remedy. We're very scientific. The first point was ease of use - was it easy for us or Madeline? Second, did the crying get better or get worse? Third, did the remedy amuse us, giving us a ray of sunshine amid the screams of pain? And finally, could Mike and I be arrested for implementing this remedy? Armed with our system and our instruments of relief, we put them to the test.

The first thing we tried was a washcloth, as suggested by Memphislis, Danielle, Jill, and Baby B. We froze one end, wet another end, and left the rest dry. She definitely chewed on the washcloth, but only when we were forcing it into her mouth. Her crying quieted briefly, but then started back with a vengeance. However, with the washcloth in her mouth, it sounded like she was crying through a pillow. Funny! We'd probably get arrested if she smothered on it, though. Less funny.

Danielle also suggested letting her chew on a baby toothbrush. This one was easy for her to grab onto and put in her mouth. The problem was she was too busy smacking herself in the face with it. Then she hit herself in the eye, and you know what they say about fun and games and eyes. Needless to say, the crying did not get better, and while watching Maddie wield a toothbrush like a tiny sword was funny, we're pretty sure we'd get arrested if we allowed her to poke her eye out.

Casey said she used to give her daughter cold metal spoons to gnaw on. Luckily we have some of those laying around, so we froze one and gave it to Maddie. It was easy for her to use and she loved it. Unfortunately, it lost the coldness pretty fast, and then she had no use for it, flinging it aside like trash. Since we used a serving spoon, sometimes her tongue would poke through the holes. Funny. We wouldn't get arrested for this one, either!

Bridgetsuggested we give Maddie a pickle to chew on. She also said they got funny pictures of her kids chewing on pickles. We like funny! So we tried it. Maddie was NOT having it. The second Mike put the tiny gherkin in her mouth, she yanked her head away. The look of disgust on her face was priceless. We wouldn't get arrested for this one, but I think Maddie would call the police on us if we made her eat a pickle again.

SP said a peeled carrot is a good gnawing option. It might have been, if we hadn't just given her a pickle. I think the pickle was where we started to lose her trust. She didn't like the way the carrot tasted. Good for her, I hate carrots, too.

I ran into a problem when I was looking for the mini bagels suggested by Mom24 and Val - I couldn't find any. I asked the guy at Ralph's, and he said, "what are mini bagels?" Jeez Louise. I improvised and bought the smallest bag of bagels I could find, and froze them. I tried to get Maddie to gnaw on it, but she looked at me like I was mental. This is where I completely lost Maddie's trust.

Just Me said peas or popsicles (or as I call them, Popstickles) worked for her kids, so I was all ready to go with those. Then Mike pointed out that Maddie has the hand-eye coordination of a drunk chicken, and maybe we didn't want to do anything overly messy. So she got everything in the package.

She liked sucking on the wrapped popsicle, but it had the same weapon potential as the toothbrush. After she hit herself in her other eye I had to take it away from her, and that didn't make her happy.

Jess, Gemini Girl, Jill, and London2434 all suggested booze. Yeah, we didn't exactly try that one. We probably would have, if we hadn't consumed all the booze in the house during the CRYYYYYYYYYING. Note to others, a crying baby does not make a hangover feel better. Also, Mike said this picture is child abuse.

The most popular suggestion (Bec, Mom24, All Saints, Kristin, Danielle, Jen B, Jody, and Jill) was Motrin or Ibuprofen. At Kristin's suggestion, we called Dr. Loooove to make sure it was okay to give it to Maddie. We still tried all the other suggestions, because friends, drugs are not always the answer. Except in this case. Look how happy she is!

Drugs were the hands-down winner.

I am still determined to try the homeopathic tablets suggested by Shauna, Casey, All Saints, Danielle, Just Me, and Holli. I just have to find the time to, you know, look.

Seriously, thanks to everyone who left comments with suggestions! It was great to hear from so many people.

Tomorrow, really, I will let you know about her appointment with Dr. Lung. I swear.