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.

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!

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?

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.

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!!!

Next Verse, Same as the First

The nurse from Dr. Lung's office called me at work today with Maddie's latest Cystic Fibrosis test results. I have called them a million times in the past with little reciprocity, so when the nurse identified herself I knew I wasn't going to like what she had to say.

I need to explain the basics here so that what I write doesn't sound too much like medical jargon. On Tuesday, Maddie had a sweat chloride study, or sweat test. A sweat test measures the amount of salt chemicals (sodium and chloride) in sweat. The results are measured against the following chart:



So, guess what Maddie's level was? 45. Smack in the freaking middle of "borderline." Figures. The next step is to take Maddie to a Cystic Fibrosis Foundation certified testing facility and have another sweat test administered. Luckily, Children's Hospital Los Angeles is one of these approved facilities and it isn't far from our house. The nurse then told me that the UCLA lab has been getting back an abnormal amount of elevated levels, and that we'd be better off going to CHLA. WHAT?! The testing materials at UCLA are SHODDY?! I NEVER would have expected that. Everything at that hospital is so fantastic and shiny! I think the nurse told me that as a way to be like, "it's okay puppy, this is probably our bad!" but really, all it made me do was throw things at my innocent coworkers.

And then. THEN! I asked the nurse if the blood work for Maddie's genetic CF testing had come back. She paused, and then said, "Well, that testing was never ordered. So she'll need to get it done when she's at CHLA." I saw red. What did they do with all the blood they stole from her tiny arm, then? "Oh, we checked to see if her blood count was elevated, and we checked for a milk allergy." I have been around hospitals long enough to know that FOUR vials of blood are not needed for only two tests - a CBC test can be performed with very small amounts of blood. Someone messed up, and messed up bad. They are going to have to take more blood from my little baby, and I'm not okay with it. That nurse isn't the one who has to hold Maddie when she's crying about a needle in her arm! Damn it!

I can't schedule the test until I get some paperwork in the mail, so hopefully it arrives tomorrow so I can get this taken care of pronto. I'm a little shaken. I've been believing all of this was a formality and now I have to prepare myself for the possibility that she could have it. In my gut I don't think she has cystic fibrosis. But my confidence has been shaken a little.

Skinny Baby

Maddie had a great appointment with Dr. Lung today. It helped that Maddie was in a fantastic mood - smiling, laughing, and babbling like crazy. Dr. Lung about fell over when she walked into the room and was greeted with Maddie's ramblings. "She is so talkative! Whatever you're doing, keep doing it!" Dr. Lung said. What she didn't know is Maddie was saying, "Dr. Lung, you smell like a cutter. Stay away from my lung tissue!"

Dr. Lung surprised us by not taking an x-ray of Maddie's chest. Instead, she and her on-the-sly Cystic Fibrosis nurse examined Maddie and said they were thrilled with how her lungs sounded. Of course, preemie lungs still sound like junk, but we'll take what we can get. Based on her exam today, she is about 90% sure that Maddie has Bronchopulmonary Dysplasia. This is good because it means she'll eventually outgrow all of this. It's also bad, because there isn't a cure until she gets bigger, so any little bug she catches in the meantime could lead to more hospitalizations. At this rate, Mike won't let me take Maddie out of her bubble until she's at least seven years old.

We don't have the results back on the Cystic Fibrosis test, we should have those next week. Dr. Lung also wants to do the sweat test. We have to call a special technician to administer it. After that, we will be able to put CF to bed, one way or the other.

The other issue Dr. Lung brought up was Maddie's weight. She is sooooo close to being ten pounds, but she just can't quite get there. She's been stuck between nine pounds nine ounces and nine pounds 12 ounces for the last month. Dr. Lung asked how often we feed her. Well, Dr, we feed her in the morning, and then we let her eat dog food all day. I mean, seriously. The baby eats and eats all day and doesn't gain weight! I wish I was like that. The doctor mentioned meeting with a nutritionist, but we deferred and will speak with Maddie's pediatrician (loooove) about it next week when we go in for her SIX MONTH check up.

I'm a little tired of the looks we get when people find out she's almost six months old. I'm okay with her being small and everything, but I sometimes get tired of explaining WHY. Dr. Lung did say that the oxygen Maddie is on at night should help her burn less calories when she breathes, so hopefully she'll start gaining soon. For now, I will have to be content with her still wearing newborn clothes. She's like the skinny girl you know at work that wears a size zero. No normal person should be that size, but she's so nice you can't help but like her.

Why the hospital sucked (besides the obvious)

We had a variety of Maddie-related tasks to do today - prescriptions, follow-up appointments & consults, and lessons on how to mix her medications - so when I woke up this morning feeling like my appendages weighed 1,000 pounds each I knew it would be a long day. I had a physical therapy appointment at 7am with a different therapist than usual. She couldn't believe all the knots in my back and neck. In fact, we spent the entire session with her working on my knots, and she still didn't clear all of them. Luckily my regular therapist had filled her in on Maddie so she didn't think I was a total stress case. I could use about eight more sessions tomorrow alone!

When we followed up with Maddie's pediatrician (loooove) today. I laid it all out for her. I told her all about Dr. Lung ordering oxygen before the oxygenation test, how she never kept us in the loop on anything, and how she was always being secretive around us. Her pediatrician (loooove) was pretty appalled, but assured us that Dr. Lung is the best around. She also said that if I ever have questions or doubts about something Dr. Lung is doing, I should call her and she will act as our go-between. I loooove her pediatrician so much, I didn't even take it personally when she said to me, "you look terrible. You need to get some sleep. A lot of sleep." Yeah, I had big bags under my eyes. I guess I should have worn makeup today. And brushed my hair. And not worn a jacket with dried spit up on it. Mike is so glad he married someone so sexy.

After I told Maddie's pediatrician (loooove) about my concerns regarding Dr. Lung, she asked how staying in the Westwood hospital was. I opened my mouth to really let it rip, then thought better of it and said, "well, it's a lot different than Santa Monica. Or even the NICU." She laughed and said, "I know what you mean, you don't have to feel bad. I try not to send my patients there unless it's absolutely necessary." The problem with the Westwood hospital is that it isn't supposed to be in use anymore.

A brand-new hospital is standing across the street, empty. I think the first scheduled time for the hospital to move was in 2006. The date keeps getting pushed back because of construction delays, equipment problems, and pipes breaking. The nurses joke that the new building is cursed. The new hospital is supposed to be AMAZING. All state of the art. Every room is private - no matter how much you like your roommate, it's hard to make decisions about your child's health with a stranger listening in - so that's great. I spent a lot of time this last week fantasizing about the new hospital. I have a crush on it.

Since, at any given time, the move to the new hospital is only a month away, the current hospital has gotten quite run down. All the important stuff works, of course. But it's worn out. I'd notice that the portible x-ray machines had duct tape up the sides. If a television a room stopped working, that was it. It wasn't going to be replaced since, in theory, it wasn't going to be needed for much longer. The paint on the walls is peeling, the floor tiles are cracked, and lights are flickering. I joked with the roommate's dad that if UCLA medical center was ranked third in the nation, I wouldn't want to see the hospital that was ranked fourth (and, while I fully disclose that Mike, Maddie's roommate's dad and I all went to USC, this isn't Bruin bashing)! Cleveland Clinic is ranked fourth, in case you were wondering.

All that being said, the most important thing in a hospital is the people who work there. The nurses, doctors, and students work really hard to make everyone healthy again. As much as we complained about things falling apart in our room, we were extremely thankful that so many people cared about Maddie and saw to it that she went home well. We were soooo spoiled by the NICU. We now realize just how amazing the NICU staff is (and we already thought they were awesome), and how lucky we were that Maddie got a bed there when she was born.

For a million reasons, I hope Maddie never has to go back to that hospital. Of course, if she does, at least we can enjoy the cafeteria. Every month there is a different theme of music playing. In November, when Maddie first arrived in the NICU, it was all Michael Jackson. This month it was 70's funk. The food there is actually really good. Yummy chicken sandwiches, fresh grilled cheese, and an honest-to-goodness sushi bar. Mmm...I'm dreaming of the shrimp tempura roll right now.

The Trickery of Dr. Lung

Sleep wasn't much of an option for me last night thanks to a few factors. The first was Maddie's oxygenation study. I was determined everything would read correctly, so I was up constantly making sure the monitor was reading correctly. I don't think I've checked on her breathing more since the first night she came home from the hospital. The monitor malfunctioned about four times during the night...I thought I was going to go insane. Alarms would start going off as if her heart stopped beating. They are so loud, I jumped out of my skin every time. The good news is, when the monitor was working correctly, her saturation was in the 90's.

The other reason I didn't sleep well was thanks to our new roommates. A four month old boy was brought over from the Pediatric ICU, and his mom was not happy about it. She didn't like that she'd have to stay with her son all the time, since in ICU, the nurses provide all the care. Before he was moved, she and the baby's grandmother came over to check out the room, and they pretty much freaked out by how laid back things are on the floor. The mom told the grandmother that she'd have to stay with the baby because she 'wasn't prepared to.' The grandmother was easily 76. Once he was brought in, the grandmother was totally overwhelmed. At one point, his medicine pump was beeping, and not only could she not hear it, she didn't know that a beeping machine was a bad thing. It was a mixed blessing when the mom stormed in at midnight with a big suitcase and an even bigger chip on her shoulder. I felt so bad for the nurse we were sharing. She had to do everything for the boy. I was up feeding Maddie, and he started to cry. The mom heaved a huge sigh, got out of bed, and came over to the crib where her son was laying. She started to console him when the nurse walked in. The mom said, "oh good, you're here," and laid back down in her bed, leaving her baby crying in the crib. The nurse and I looked at each other like, "what the heck?" and then the mom said, "I think he's in pain. Can you give him some morphine or something? Thanks." And then literally rolled so her back was facing us. I've never met someone more put out by her own child, and this is L.A.

Luckily for me, my mom and Mike came at 7 am so I was able to get a solid hour of sleep before all the fun started. At 8 am, Mr. 5 O'clock from the pulmonary lab came in to get Maddie's monitor. He said it would take at least an hour to download the night's results. We kept our fingers crossed that he didn't have anywhere to go. When a resident finally came by to tell us the results, we were really antsy. She said, "the results were abnormal. The doctor will be by to speak with you," and then she walked out. Seriously, I am going to start a clinic for improving bedside manner. So many residents lack tact.

Dr. Lung came in and said that Maddie's oxygenation study showed that when she sleeps, she dips into the 80's. since we want her to be above 90, that's not good. I questioned the results, since the monitor Maddie was on would sound an alarm whenever Maddie's blood oxygen level hit 90. Dr. Lung said that the monitor was super sensitive and picked up things the alarm wouldn't have. What.Ever. She said that she wanted Maddie to be on oxygen when she sleeps at night, and that she was going to order home oxygen for Maddie as soon as she left our room. We scheduled follow up appointments with the pediatrician (loooove) and Dr. Lung for tomorrow and next week, respectively. Then we waited for the resident to discharge us. That always takes forever. The SECOND they told us we could leave, we grabbed our things and ran. Oh, and we grabbed Maddie, too.

When we got home, Mike told me to listen to the answering machine messages from yesterday. There was a message from a home medical supply company asking me to call back. I assumed they were calling about the nebulizer equipment that we rent from them, since they check in from time to time. When I called, they asked for confirmation of our address and insurance information, and told me that Maddie's oxygen tank would arrive sometime today. I asked about the message from the day before, and the woman said that the only reason she was calling was because of the oxygen. And then it occurred to me - Dr. Lung ordered Maddie's oxygen yesterday, BEFORE Maddie's oxygen study. That deceptive beeyotch!

I've been trying not to get mad about this. I know that Dr. Lung is one of the best pediatric pulmonologists around. I just wish she was more forthcoming. If she'd just said, "Maddie is small, she has BPD and possibly chILD, and I would feel better if she was on oxygen at night," I would have accepted that. I don't know, maybe I have created this relationship with her by questioning everything she says. On the other hand, if I didn't ask what she was doing, what kind of parent would I be? I guess I just have to make sure I ask in a better way, maybe less accusatory. We're on the same team and all of that.

We were pretty much stuck at home waiting for her oxygen tank to arrive. Not that we would have been going to a theme park with her or anything. We were expecting small tanks on wheels, but instead the delivery man wheeled in a HUGE tank, at least five feet tall. It has to be in a permanent stand, so we set it up in Maddie's room. That means she will be sleeping in her own crib from now on. Mike and I don't really feel ready for this, but she was getting a little too tall to sleep in the bassinet anyway. I have a feeling one of us will be sleeping on the floor in her room. The helicopter parenting has already started!

I'm not President of the Dr. Lung fan club

The Upper GI today showed what I already knew - Maddie doesn't have any fissures between her trachea and esophagus, so reflux is extremely unlikely. But try telling that to Dr. Lung. She said, "well, this was just a snap shot. I would like her to have a pH probe in the future." I'm thinking we'll probably decline that. It's just not an issue for her. Hopefully she'll forget that idea.

We managed to keep Maddie pretty calm until the procedure. When we were in the dungeon of the hospital, she woke up and started to get that look on her face like, "where the hell am I, and where is my food?" Unfortunately for the GI team, that was when the procedure started, so she cried pretty much the whole time. The only time she was quiet was when she was drinking the barium. I couldn't believe she drank it, but she gobbled it down. We were able to be there with her on the other side of a window (because of the radiation), and we could watch the screen to see the movement of the barium through her esophagus into her stomach. There was a med student explaining it all to us so it was pretty cool.

Dr. Lung came by later in the afternoon, and that's when she told us everything was normal with the GI screen. She then said that since Maddie had, at that point, been off oxygen for over 24 hours, she was leaning more toward a diagnosis of Bronchopulmonary Dysplasia (BPD). Or, as she said, "severe, severe, severe BPD." Wow, is that the medical term? Severe, severe, severe? Jeez. She is going to monitor Maddie for the next few months and then decide if she needs a lung tissue biopsy.

With the test results coming back in our favor, we figured Maddie would be in the clear for discharge today. She hasn't needed oxygen since noon on Tuesday, and she was disconnected from the pulse oxygen monitor. The nurses even said that they thought she'd be discharged. Dr. Lung had other plans, though. She came in and said she wanted to have a night of Maddie on a - again, her medical term - super fancy pulse ox monitor, to make sure that she wouldn't need oxygen at home. When we pointed out that Maddie had been on a monitor last night without oxygen, she told us that the monitor wasn't sensitive enough. I asked about home monitoring, and she said that it would take our insurance a day or two to authorize that, so we should just do the overnight in the hospital. Thinking about it now, I can't imagine that an insurance company would pick staying in the hospital over home monitoring if given a choice.

After I relented to Maddie staying in another night, a man from the Pulmonary Lab came into the room and started fiddling with Maddie's monitor. I asked him what he was doing, and he said he was zeroing out the monitor for the overnight study. I said, "I thought you were bringing in a new monitor" and he said, "oh, I don't need to since this room already has one." Alarm bells started going off in my head and I said, "don't zero that one out!!! She's been on it since she got here and she wasn't on oxygen last night!!!" When the lab guy heard that he said he would take the data and page the doctor. Victory! We started planning our escape from the joint. Our roommate's mom was so inspired she started agitating to leave, too. The lab guy said it would take a few hours to download all the data as it records down to the second. Fine, a few hours is nothing compared to another night.

The lab guy came back a little after five and said that the data was inconclusive and that the doctor was coming. He quickly re-attached the monitor and left the room, saying Dr. Lung would be able to tell us more. When she came in, I demanded some answers. She hemmed and hawed a bit, saying that the data would be finished downloading tomorrow at 7:30. The lab guy had only managed to download the data up to April 27th, when she was still on oxygen. I didn't understand how it would take another twelve hours to download two days worth of data, and then my mom realized that the reason it wasn't going to be downloaded was because it was 5 o'clock - time for him to go home. I was livid when I realized that because this man wanted to go home, it was preventing us from doing the same.

I was ready to take Maddie and leave, but Dr. Lung talked me off the ledge. She rightfully pointed out that if Maddie needed oxygen at home, we could get her the equipment in an hour as a patient. As an outpatient, it could take days or even a week. She then swore that we would be out of the hospital by 10 am tomorrow. I still don't believe it. This place has a way of grabbing hold and not letting go.

Our roommate's parents had much better luck. We got along so well with them in our time here, they were ideal people to spend such close quarters with. When the mom heard we might go home she was terrified of being here with someone else - they'd previously roomed with a crack baby. No joke. Her son didn't have any other tests scheduled until the end of the week, so she started pushing for them to be done outpatient. This mom is amazing. She doesn't let anyone disturb her baby. She demands answers for everything and she gets them. She has totally been my kick-ass mommy role model! So of course, she got her son discharged. I know we'll stay in touch, but I miss them already! Now I sit here with a new baby who was just brought over from the pediatric ICU. His head is wrapped in bandages, like he had surgery. This place is so crazy, we have to get out of here.

A few minutes ago, Maddie had a breathing treatment from a Respiratory Therapist that knew us from the NICU. He was there the night she was born, and couldn't believe how great she looked. He told me that no one expected her to make it through the first night. I like knowing that she is a miracle, but it's hard to hear stuff like that when we are still in a hospital setting. I told him to tell me that again in a few years, when we are at a NICU reunion and she is running around playing.

so many acronyms, too little time

The CT scan went well this morning. I was really nervous about her not eating for an extended period of time, but her night nurse did a great job of helping me make sure Maddie ate at the last possible moments. It was a bit of fiasco getting her down to the CT area. They insisted on bringing her crib down, and tried to get me to lay her in the crib for transport. I knew if I laid her down she would get fussy and that wouldn't be a good way for her to go into a procedure where she had to be sedated. So I just told the transport orderlies that I was carrying her, and that was that.

All the different x-ray type machines are in the bowels of the hospital, or as our roommate's mother says, THE DUNGEON. We ended up having to wait a little while for the machine, which was annoying, but luckily for everyone involved Maddie stayed happy the whole time. When it was finally her turn, I laid her down in the big machine. It was huge:

She looked soooo tiny on the end of it! Do you see those straps hanging off the side? Well, they couldn't be used because a strap would have covered her entire body.

The anesthesiologists were great. There was a possibility that she might have needed to be put on a ventilator, but they made sure that didn't have to happen. Maddie didn't seem bothered by the experience, except for right when they put her under. The anesthesiologist said that one of the drugs would sting a bit as it went in her IV, and she definitely whimpered as it was pushed into her bloodstream. It was so sad. Luckily, she woke up about 10 minutes after the scan was over, smiling and looking for food.

Dr. Lung was there for the scan, which was really surprising. She looked at the scans right away, and then told us that she needed to think about it. After some thought, she laid it out for us. It looks like Maddie either has something called Bronchopulmonary Dysplasia (BPD) or Children's Interstitial Lung Disease (chILD). I'm just going to nutshell these here. BPD involves abnormal development of lung tissue. It is characterized by inflammation and scarring in the lungs. It develops most often in premature babies, who are born with underdeveloped lungs. Most kids outgrow BPD. chILD (and seriously, isn't that just the most darling acronym) is a group of rare lung diseases found in infants, children, and adolescents. There are different types of chILD that vary in their severity and in their long term outcomes. I don't know if kids outgrow this or not. The only way it can officially be diagnosed is through a biopsy of the lung tissue. Anyone can get chILD, not just premature babies.

I really haven't done a lot of research on either of these. I knew that she was a candidate for BPD; in fact, it is listed on her discharge papers from the NICU as "suspected." As far as the chILD goes, there are a lot of different kinds and severities, so I am not going to get too worked up about it yet. I'm mostly going to stay away from Google other than to familiarize myself with the terms Dr. Lung will use when she talks to us about it all tomorrow.

Her Upper GI series is still on for tomorrow. Dr. Lung still wants to rule out reflux. After spending the last four days with our roommate and his terrible reflux, I am certain reflux isn't an issue for Maddie. The Internets do tell me that ruling out reflux is important when trying to diagnose chILD, so I will go along with the test. It supposedly isn't that bad as far as tests go, but I'll believe it when I see it. A lung tissue biopsy, however, is surgery. If Dr. Lung decides to proceed with the chILD diagnosis, then we will schedule the biopsy. I don't know if it would be ASAP or if we'd schedule it outpatient. If it can't be done by Friday, I want Maddie out of there. She's been off oxygen since noon, and that is always the biggest factor keeping her in the hospital. The longer she's in there, the more likely she is to catch something new.

I came pretty close to hitting my wall today. It's that same trap I think everyone falls into when they have a lot of stuff going on. I am so consumed by everything that I'm not getting enough sleep, and all I can think about is Maddie and what is going on with her. I had a small breakdown when I spoke on the phone with Human Resources at work. Everyone there is so supportive but I feel like I'm being pulled in a lot of different directions. I'm hopeful that tomorrow we'll have a course of action in place, and that will help me feel like things are more under control and I can relax. All this unknown stuff doesn't sit well with a control freak like me!!!

I really do have all this funny stuff to say. Maybe if I didn't wait until 11:50 at night to write my blog I would have the energy! Here's to tomorrow being a better, funnier day!

Every time I mention cystic fibrosis, take a shot.

Maddie just had an IV inserted in her right arm. She cried and whimpered the whole time and it about broke my heart. Now she is sleeping so deeply I think the USC Marching band could come through and she wouldn't notice. Just another mommy scar that I will throw in her face when she's an ungrateful teenager.

The IV is for her CT scan tomorrow morning. This is the test she has to be sedated for, because it's imperative that she not move so the docs can get a clear picture of her lungs. She can't have any formula for four hours before the scan, so from 4 am to 8:30 am she will be cruising on an empty stomach. I can give her pedialyte from 4 to 6 but something tells me that isn't going to cut it. I can already predict what will happen - she will be STARVING after the scan, and she'll wolf down her food so fast that she will throw it all back up, and then the doctors will start the reflux talk in earnest. Let's hope I'm wrong.

She had a bunch of blood drawn for tests this morning. One test is checking to see if she has an allergy to the formula she gets. Another pointless test. The other tests were, I'm told, the usual work up. And then there was the blood taken for the...CYSTIC FIBROSIS TEST! Yep, they are testing her for it for the THIRD TIME! When Dr. Lung told me that, I almost slapped her. She said that the first two tests Maddie got didn't test for all the different mutations of the CF gene, just the most common ones. I'm so frustrated with this. All my reading says that in order for a person to get CF, both parents have to carry the CF gene (you can carry the gene and not have CF). I don't have it. I just don't understand how Maddie could. Seriously, if someone out there reading this can explain it to me, please do.

I feel like they are determined to diagnose her with this. Dr. Lung brought by a CF nurse today on the sly. She introduced her by saying, "this is Nurse Blah, who works in my office." She didn't say she was a CF nurse, we only found out because we heard her introduced that way in the hall outside Maddie's room after she left. It's so frustrating because of COURSE if she has CF, we want to know so we can get her the best treatment possible. But this isn't some willy-nilly virus we're talking about here. It's a disease that would kill her before her 30th birthday. That is why we don't refuse the tests.

There's something wrong that I have been driven to the point that I don't want Maddie to have CF not because it is fatal, but because I don't want these people to be right. That's some health care system we have here.

With all this crap I forgot to mention some other, much happier things. Maddie's grandparents, aunt, uncle, and cousins are all here from Northern California. It sucks that her aunt and uncle have only seen her in the hospital, and it makes me sooo sad that Maddie hasn't met her cousins. Her oldest cousin is three and half and he keeps asking when he will get to meet Madeline. They will be here until the end of the week so we have our fingers crossed that she'll be out of the hospital by then. Wait, this is supposed to be happy stuff!! Well, Maddie has been thrilled to see her family. She smiles away when they come in the room. Even if the surroundings aren't ideal, it is still nice that they can see her happy.

I bought Maddie a Bumbo seat when I went on my Great Target Spending Spree last week, so I brought it in today. I sat her in it, fully expecting her to cry or fall over, but to my delight, she really worked her stomach muscles and sat up in her chair for about five minutes. It was so cute, and, of course, she smiled the whole time. I'm glad I bought it.

Best for last - she has started laughing!!! Yesterday I was playing with her and she got a big grin on her face and then giggled. It was the best sound in the world! I kept playing with her and I got a bunch of giggles out of her, so I know it wasn't a fluke. Her uncle got a laugh out of her today, too. I'm so glad I have this little baby that can still be happy despite getting stuck with needles and squeezed with cuffs. I try to follow her lead.

Keep your fingers crossed tomorrow at 8:30 am that Maddie's CT Scan goes well!!!

Introducing Dr. Lung

We finally met the elusive Dr. Lung. She introduced herself and listened to Maddie, and then said that she wants to give Maddie a full work-up so she can get to know her anatomy. She is going to get a CT scan to completely rule out pneumonia, and it will also show the structure of her lungs in great detail. She'll have to be sedated for this, which is kind of scary but makes sense - you can't tell a baby not to move for a scan. Maddie has ruined many x-rays by wiggling around. She's also going to get an Upper GI test to examine her esophagus to see if there is a tiny perforation that is allowing food to get into her airway. Once these tests are done, Dr. Lung thinks she will be able to better diagnose Maddie's problem. These two tests will be performed on Tuesday. Good thing Maddie was transferred to Westwood in such a hurry. Not.

Really, though, the best part of the day was when we asked Dr. Lung when she was going to get the suctioning procedure that we transferred specifically to Westwood to get, and Dr. Lung said, "oh, she is too small for the suctioning procedure." Um, WHAT?! When we pressed her she backtracked a bit, and said that she actually couldn't say for sure if Maddie was too small and that the CT and Upper GI would tell her whether or not this was the case. If she doesn't get that damn suctioning procedure, I. Will. Be. Livid.

Sharing a room is really, really hard. The people we are sharing a room with are AWESOME, so I can't even imagine how bad it would be if we didn't like the family. The other patient in Maddie's room is an 11-week old baby who is dealing with terrible reflux. His mom stayed with him last night, and she really is the nicest woman who I have a ton in common with. But the rooms are small and cramped and you are right on top of each other. Last night when Maddie made noise or if one of her alarms went off, I was instantly quieting her down so she wouldn't disturb our roommates. Normally she self-soothes, but she's noisy and I didn't want to wake up the other baby. I'm sure his mom felt the same way when his alarms went off, too...especially since I would jump up every time an alarm went off, thinking it was Maddie's! There isn't a bathroom, so if you need to use one you have to go down the hall. My favorite part, though, is that they don't stock the very common anti-reflux formula that Maddie uses so we have to bring our own from home. YET, they are still charging my insurance for food for her! Ridiculous.

Tomorrow Maddie's pediatrician (loooove) is really going to have to earn the (loooove) that I give her when she comes to check in on us. We really don't want to be in the run down Westwood hospital longer than necessary, and we're even willing to bring her home on oxygen to get her out of there. I just know she is going to catch something much worse than a small cold if she's there for too long. It's so sad, there are kids on the floor with terrible illnesses. Obviously she isn't going to catch cancer or reflux, but she could definitely catch pneumonia or measles or one of the other millions of things on the floor.

Tomorrow I will go more into depth about the hospital, like why such a renowned facility is practically in disrepair, the comedy that is the cafeteria, and how night & day the Pediatric floor is from the NICU. But for now I must sleep, and try not to think about how I am separated from Maddie. Mike is staying with her tonight, and since only one parent can sleep in the room, I am at home. It's our first night apart since we brought her home. Tear.

Maddie Marches Down Wilshire Blvd

Today I walked five miles and my daughter was transferred to a different hospital. I know you think both of those things are lies since I a) abhor exercise, and b) Maddie has been on the brink of transfer every day, but today both actually happened!

We started the day by attending the March for Babies in Griffith Park. Mike and I, along with 15 awesome friends and family members, walked five miles to raise money and awareness for the March of Dimes' fight against prematurity. I was the captain of our family team, "March for Maddie." We raised over $2,500 (and we're still going) and I was so, so proud to turn in all that money in Maddie's name. My friends in San Francisco raised an additional $1,800 in honor of Maddie. I have the best friends in the world. There aren't too many people that would hassle their families and coworkers for donations, not to mention getting up at the crack of dawn for a five mile walk in 90 degree heat!

Each family team had a quilt square to decorate and turn in. My brother was in charge of our square and this is what he came up with:

He drew that! He's available for your birthday parties and bar mitsvahs. All March for Maddie walkers also got a pin with Maddie's face on it. Free Maddie swag! Mike and I were sad that she wasn't at the walk, but we are looking forward to participating every year - next year she should even be able to walk a bit on her own!

After the walk and lunch with everyone, Mike and I headed back to the hospital. My mom had stayed with Maddie for the morning so we could participate, and she'd been told that the transfer to the Westwood hospital was officially happening. We didn't really believe it, since we'd been told that before. We were jerked around a bit today, too. First they told us that a NICU team would have to come get her. Then there wasn't a UCLA ambulence available. THEN we were told that our insurance wouldn't cover a private ambulence, which wasn't true. If you were following my status updates, you saw that even when Maddie and I were in the ambulence, I still didn't believe we were going to make it to Westwood! But we did. And here we are.

She is sharing a room. When we first got here her roommate was a two year old boy. He was moved to another room, and now her roommate is a little baby. He looks pretty fresh, although he couldn't be THAT new or he'd be in the NICU. I have a very interesting fold out chair that, if I didn't have my foam pad, would probably be unbearable. I will rate it in the morning. The only doctors to see her so far have been residents. Tomorrow her pediatrician (loooooove) will be by, as well as the ever-elusive Dr. Lung. We'll see if she gets her procedure tomorrow. I doubt it, but you never know.

Three of Maddie's NICU nurses have been by to see her and it was SO great to see them!!! Her overnight nurse has already offered to take over one of Maddie's nighttime feedings so I can get some sleep, which I thought was above and beyond. I might have to take her up on it!!! It's not every day you have someone who is willing to feed your child at 2:30 in the morning. Oh wait! I have one of those every day, his name is Mike.

The Wheels Are Square

Mike called me this morning at work to tell me that the decision had been made, and Maddie was going to be transferred to the Westwood hospital and that her lung procedure was going to be today. He said he was told that it would happen in a few hours, so I didn't have to rush, but I should get there soon. I quickly wrapped up my loose ends at work, made arrangements for my co-workers to help me with clients, and left for the hospital. A parent has to ride with Maddie during the transfer and I called dibs on all ambulance rides. I want the siren.

When I arrived at the hospital, my parents were in Maddie's room. Mike had been in her room for over 48 hours straight so he needed to go home and hose himself off. My mom and I gathered up Maddie's things, and then we settled down to wait for the transfer. The Westwood hospital called Maddie's room to finalize details with me, and they said that the transfer was going to happen in a few hours. Sweet, still on track. I emailed all of my nurse friends at the other hospital to let them know we were coming. We were ready. Then Maddie's nurse came in and told us no beds had opened in Westwood, so the transfer wasn't going through today.

I wasn't pleased.

I told the nurse that the Westwood hospital had called and said that everything was still on track. She was confused and said she would figure out what the deal was, since we were being told different things. When she was gone, Maddie and I sat there and put hexes on the stupid hospital administration. Why tell us she's getting transferred when there is a possibility she might not be? Predictably, Maddie's nurse came back and said that the transfer definitely wasn't happening today, but that it was on for tomorrow. When I asked what was to prevent the same thing from happening tomorrow, she said, "nothing." GOODY. Why do I have a feeling she won't get transferred until next week? My boss is going to love all the work I'm going to miss.

I don't think I've explained WHY she needs to be transferred, mostly because it was really just explained to me - and not very well, as you will soon see. Maddie is in the UCLA medical system. Since she was in the NICU at the main teaching hospital in Westwood, Mike and I decided that for all her future care we would stay within the system. That way her medical history would be easily accessible for anyone who treats her. Of course, that means they actually have to LOOK AT IT instead of asking me for the 800th time if she has been tested for cystic fibrosis, but at least the tools are there. Mike and I were under the impression that all doctors in the UCLA system had privileges at the Westwood AND Santa Monica hospitals. Apparently this is not the case. It seems silly to me since the two hospitals are 3.8 miles apart. The pediatric pulmonologist (who I am going to start calling Dr. Lung because typing "pulmonologist" makes me tired) only has privileges at the Westwood campus. She is there, so Maddie must go there. I am glad Maddie's pediatrician (looooooove) has privileges at both hospitals.

I am not glad we are going to the hospital in Westwood, despite our familiarity with the place and the friends we have there. It is old and the parking there blows, and it is a whole 0.2 miles further from our house. At least the cafeteria is better. Maddie most likely won't have her own room, which means only one person can sleep over at night. That is going to be hard. I'm keeping my fingers crossed that she gets a rare private room, but I'm not holding my breath. The Westwood hospital is also MUCH more intense - the whole pediatric floor is like an intensive care unit. It's likely that her roommate will be a VERY ill child. I'm kind of dreading that. I've had my fill of sick kiddos.

Tomorrow morning is the March for Babies. We're bummed that Maddie (and my mom, who is staying with her) won't be there, but her repeat hospitalizations have strengthened our resolve to volunteer with the March of Dimes. All these problems have been caused by her prematurity. Hopefully we can help another baby avoid all of this madness!!!

I ate my deodorant.

This morning I had a banana for breakfast. About 20 minutes later I was at the bathroom mirror and I noticed a chunk of white on the collar of my shirt. Looking at my reflection, I picked the chunk off my shirt and put it in my mouth...and realized the white gob wasn't banana, but deodorant. Expecting something delicious and getting something toxic. That about sums up my day.

Today the residents came out in droves, eager to explain the conclusions they had come to with the pulmonologist. The first thing that was determined is Maddie is too small for a bronchoscopy. Her little windpipe and lungs just won't accommodate the bronchoscope. I'm glad that was decided BEFORE they tried to give her one. Because of this, a bunch of treatments were prescribed today. The latest x-ray showed no improvement, with some "areas of interest" in her left lung. The antibiotic azithromycin was prescribed to combat possible pneumonia. The x-ray also showed that her mucus plugs are moving throughout her lungs, causing new areas of collapse. They also want to make sure she doesn't spit up and inhale it, so she has been started on reglan and protonix again. Tomorrow, if the next x-ray shows no improvement after 24 hours of antibiotics, she will be transferred to the Westwood hospital, where she will be sedated and undergo an invasive suctioning procedure on her lungs.

And the pulmonologist wants to test her for cystic fibrosis.

I'm sick of going in circles about CF. She had the newborn screen and genetic testing in the NICU, and I was tested for the gene when I was pregnant. Everything came back negative. Now the pulmonologist wants to do a sweat test. I thought we were done with this but we keep getting sucked back in. How many tests have to be done before we can put this to bed, one way or the other?

I am so tired. We all are. It's really difficult for me to go to work when my heart and mind are in the hospital with Madeline. I'm having a hard time putting on a happy face. Today I was sitting at my desk, staring blankly at another stupid email (how much for seats in the middle?), when a coworker passed by and said off-hand, "It's not that bad Heather." I wanted to stand up and say, actually it IS that bad. My baby is in the hospital AGAIN. We don't know what is wrong with her. She's spent more time IN the hospital than OUT. But I didn't say these things because he didn't know what was going on. For all he knew, I was upset about the sports page. I don't talk about any of this unless someone asks. And, if I'm being honest here, I usually lie. I know asking how the baby is is a formality, they don't really want to know that she's in the hospital again. So I put that happy face on and say, "oh, she's hanging in there. Keeping me up at night!"

When I was first put on bed rest I would send out emails all the time about my latest progress. But then when I would think about it (and you have plenty of time to think when you're on bed rest), I felt like I was hassling people with my problems. So I slowly stopped sending them. Last time Maddie was hospitalized I sent a text message to a few people, and this time I didn't do anything. Everyone has their own problems so why should I force them to think about mine? I don't want anyone to be put in the position where they feel like their problems aren't as bad as my problems. It isn't a contest, you know? But people can't help but compare. I know someone who was recently diagnosed with cancer. We were talking about her chemo and everything she's going through, and then she said, "well, your baby is in the hospital, that's harder." I didn't even know what to say at first, I couldn't believe she was discounting her own feelings and experiences WITH CANCER. People always say, "it could be worse," and while of course it's true and appropriate to have perspective, those words shouldn't rob us of the feelings we are having at the time. But they do.

I'm passing the conch now.

Still Not Paroled

Early this morning at 2 am, Maddie's nurse managed to wean her off the oxygen she's been getting. When her Pediatrician (looooove) came this morning, she said that if Maddie's x-ray showed signs of improvement, she could go home and her bronchoscopy would be scheduled out-patient! Yay! While we were waiting for radiology and the pulmonologist to read the x-ray, Maddie's oxygen saturation started dipping into the 80's and the oxygen had to be turned back on. Then her x-ray didn't show much improvement. So, it was decided that she has to stay another night in the hospital, and there was no decision about the bronchoscopy. Boo. I don't know whether to be relieved that there isn't a lot of urgency so therefore things must not be too serious, or annoyed that everything is up in the air. Sigh.

Maddie has a really stuffy nose, so the nurses have been suctioning it every few hours. It's amazing how much stuff comes out...amazingly disgusting. I suppose it's no different than when you or I blow our noses, but it's weird to see it with a little baby. Her nose isn't that big!!!

I had dinner tonight with three of my friends, Dana, Brianne, and Lissa. I wasn't going to go but Mike insisted I spend some time away from the hospital for something other than work. It was really nice to eat yummy food and catch up with each other and gossip and get away for awhile. I'm so lucky I have such wonderful friends!

The USA Softball Team paid a visit to my work today. When I was a teenager I played on a travelling team with a girl (well, now she's a woman) who is now on the Olympic team. We hadn't seen each other since, oh, senior year in high school, so it was nice to catch up. It made me laugh when she said I had a cool job because, dude, her job is to travel the world playing softball! I would trade in a second. I'll be watching when she is in Beijing this year going for another gold medal, and I will be sure to remind everyone that the Olympian was good enough to play on a softball team with me!