The best sound in the world!

A cute little video for y'all :). Brooklyn is cracking up while Dave plays with her toy puppy. I absolutely loooooove her laugh, it is so adorable!!! I can't help but laugh with her every time. It's the cutest, sweetest sound I've ever heard!

(Pause the little iPod on the left so you can hear her!)

Brooklyn has this big beautiful crib in her room that she has never gotten to sleep in because of her airway problems. She has to sleep upright, so she sleeps in her carseat in our bedroom. So we lay her in her crib sometimes and play with her so that hopefully it won't be a scary, unfamiliar place when she does finally get to sleep in her own bed.

You can't hear much of her stridor in that video. But here is a clip from just a minute ago, sleeping and sounding the way she typically does. It's weird sometimes how the volume fluctuates. And it's never something where we can say, "Oh, if we lay/sit her in this position, it gets better." It's not predictable at all. The doctors always ask us when the noise gets better and when it gets worse. We can't say...all we can tell them is that it's pretty much always there. Last weekend, my grandparents were here, and I was holding Brooklyn while she slept. Her stridor was really, really loud. Then, without me moving her at all, it just went away for like 5 minutes, and pretty much shocked everyone. Then it came right back. I don't understand it. It just happens sometimes. I wonder if this is significant.

Weight check is this week, pulmonologist visit is next week, as is her pre-op appointment. Her endoscopy and bronchoscopy are the following week.

I bid you farewell, nebulizer!

As of this week, we no longer have to give Brooklyn nebulizer treatments! Thank God!!! She hated them and therefore we hated them too. It was time for a refill, so we asked Dr. A if she could stop the treatments since they haven't made any difference for her. He consulted Dr. G2, and Dr. G2 said yes since they aren't helping her. I couldn't pack that thing back up in its box fast enough. Yay! Good riddance! No more of this:

Brooklyn's first kiss

Brooklyn has never been around any other babies before. So it was exciting when she was invited to Gavin's birthday party last weekend! I was just waiting to see how she would react to seeing another person her size...well, close enough to her size, anyway :)!

Checking each other out

Brooklyn's not sure what to think, LOL

Telling secrets

Gavin makes his move to kiss her!

And he takes Brooklyn by surprise!!!!

Dear Baby Bear...

I love you more than anything.

Words are never enough to tell you that, my beautiful little miracle.

These are the moments that I never, ever want to forget. The times when it's just me and my sweet snuggle bear. I wish that I could hold you like this forever.

I feel so close to you. So connected.

I think about when you were growing inside of my belly...

and I wanted nothing more than to look upon your beautiful face.

To touch you, to hold you, to kiss you.

To call you mine.

And now I get to do that....

every day.

I dreamed of you,

I wished for you,

I prayed for you.

And now you're here.

Perfect, wonderous, amazing little you.

A part of me, yet completely your own person.

Astounding, isn't it?

So incredible that I can hardly believe this is all real.

You are my life.

You're my reason for everything.

I love you, I love you, I love you.

There is nothing that could ever change that.

Thank you for making me your mother.

♥,
Mommy

The go ahead

Dr. A called me late yesterday afternoon. He had not talked to the gastroenterologist, but had talked to Dr. G2, the pulmonologist. Dr. G2 was glad that Brooklyn had gained some weight, but said that it did not change the fact that she needed the bronchoscopy. Because Brooklyn's breathing has not improved, he is concerned about some other types of airway obstructions/impingements/masses. With just plain old tracheomalacia, we SHOULD be seeing improvement or signs that it is going away by now, but we are not. All of those things Dr. G2 wants to look for sound really frightening, but I am trying to put them out of my mind.

So all plans for the surgical procedures will remain the same unless her breathing AND weight drastically improve this month.



On another note...a monthly visitor that I hadn't had to deal with in 15 months made an appearance at work today. I was not exactly prepared for that. Gah, I hate uninvited guests. I was hoping Aunt Flo would stay away until I was finished breastfeeding. I have not missed her in the least. Oh well.

6 month visit

Brooklyn had her 6 month check up yesterday.

As usual, I’ll start with the good news...she weighed in at 12 pounds, 3 ounces! 7 ounces in one week! I don’t recall that ever happening for us. That means that our feeding plan is working now. Hooray! She is hovering around the 3rd percentile on the growth chart right now. Dr. A said that if she continues at this rate, she will weigh about 17 pounds on her first birthday. But all things considered, he is satisfied with that as long as Brooklyn continues to gain and doesn’t get to a point where she isn’t gaining any weight at all again. She was 25 inches long...25th percentile! Woohoo!

Developmentally, she is fine. She cannot sit on her own yet and only rolls occasionally, but has rolled both ways. She LOVES to stand up though. Dr. A was examining Brooklyn, and when he checked her motor skills, he started to pull her up to stand and she pretty much did it on her own. She loves that. Then he was trying to get her to sit, but all she wanted to do was stand back up...she even got on her tippy-toes once! She thought that it was a fun game and was grinning at Dr. A the whole time. Dr. A said that she is doing fine with her development. He said, “Do I have plenty of 2 month olds in my practice who are bigger than her? Yes. But I also have 20-pound kids her age who can’t do some of the things she is doing.” So that was good. He said that actually only about 50% of kids can sit unassisted at this age. He said that we can sit Brooklyn up in her Boppy more to help her gain “trunk strength” and hopefully she will be able to sit by herself soon. She likes to pull herself up to a sitting position when she is being held, she just doesn’t have the balance thing down yet.

I was afraid that they wouldn’t give her the 6-month immunizations because she has had a cough for the past couple of days, but they said that it was okay because she was not running a fever. She cried for probably less than a minute when she got her shots...I promptly gave her a bottle and all was forgotten.

Now here is what I got upset about. Dr. A was going over the tests Brooklyn has had since we last saw him and discussing our visits with the specialists and what the plan is now. He said that he thinks that she will have the endoscopy/bronchoscopy in October as planned and they probably won’t find much of anything. He said that at that point we should consider just “taking a break from all this.” Basically, he told me that he wants an answer too, but that we have to know when enough is enough and know when to leave Brooklyn alone because all of the tests and procedures are hard on her.

Okay. So...I am supposed to put Brooklyn through this scope procedure next month, which I am already scared of, and you don’t think it’s going to tell us anything? What is the point of that??? Why am I going to make her do that if you think it’s pointless? If you think it will be “essentially normal”?

And then we are supposed to just sit back and let things just be...when we have no more answers than we have ever had?

“Something is wrong,” I said. “No one has ever denied that, but no one can tell us what that is.”

“Yes,” said Dr. A. “Something is wrong. But what if it is tracheomalacia that is aggravated by reflux and all of that makes her burn so many calories that she can’t gain weight.”

Well, what if?

Ummmm....that was what we were told that the problem was MONTHS ago. Why have we been doing all of these tests? Clearly, no progress has been made, and now we are just going to go back to assuming the problem is what you originally thought?

I told Dr. A my fears about the scope procedure, and how I didn’t know now if I wanted to make her go through with it. He said that he would speak with Dr. G2 and Dr. R and would see if perhaps it could be postponed if she continues to gain weight at a good rate over the next few weeks. He said that he would call me last night or “first thing” this morning. As per usual, I have heard nothing yet.

I’m just so damn frustrated and confused. I am conflicted about what should be done. I don’t know what the right choice is, I don’t know what the right thing to do for my baby is. I am so confused by a doctor who wants to do every test in the book one month and the next month wants to call it all off and do nothing, when absolutely nothing seems to have been accomplished. I am afraid of the unknown...of the idea that she has these breathing problems for some undetermined reason. That makes me so uneasy. If it’s unknown...how do I know she isn’t just going to die? How can I fall asleep and believe that I will have her beautiful smiling face greeting me each morning? And how could I ever live with myself for not doing something about it, for not working hard and advocating for her to find out what is wrong? But what if they keep doing all of these tests and something happens to her...what if they hurt her and she has some horrible complication or side effect? I don’t want her to be subjected to all of this so young. But I am so afraid of what is wrong. I can’t lose her. My anxiety is so great this morning that I feel like a 500-pound weight is sitting on my chest, and my heart is beating a thousand times a minute to try to push the weight off of me. I have a million questions racing around and colliding inside of my brain, and I suspect that many of them will remain unanswered.

#$^@&%!

I am so damn mad today. I don't have one specific reason why or anything in particular that set me off...I'm just angry. And anger is not really my emotion of choice. I don't like it, and I'm not usually like this.

But I spent much of my day at work halfway wishing that one of my clients would try to attack me so that I could kick and hit the crap out of them. When I got gas on the way home, I thought, "If someone tried to rob me, I would get to stomp the hell out of them, and it would be okay."

What is that all about??? Weird. I know it is.

Don't worry, I would never actually haul off and hit someone, no matter how good I think it might feel. That's not my style. I bottle it up and pretend all is well instead.

Part of the problem, I think, is that for the past week, I can't cry. I feel profoundly and deeply sad, and all I can do is just feel sad. I'm on the verge of crying my eyes out, but nothing happens. I feel like a huge rock is stuck in my throat, my heart is beating fast, my stomach ties itself into a thousand knots, I feel shaky/panicky/anxious. My thoughts race with all that I am worried and sad about. And no tears, even though I feel like I really, really, need to let them out. Is my medicine doing this to me or something??? I truly don't know.

I'm so mad that Brooklyn's doctors can't figure out what is wrong with her. I'm so angry that she has to be in pain. What could she have possibly done in her 6 short months of life to deserve to hurt so much? She screamed for over an hour tonight, horribly sad, painful, gut-wrenching screams. When she's like that, her face is so sad, it breaks my heart wide open. She makes these pitiful "ooohh ooohh ooohh" noises when she calms down a bit from the screaming, and she's still crying, and the noises just sound to me like "Help me, mama, please, help me" and I CAN'T. I do everything I know to do and nothing works. She's in pain...I know she is...you can't hear these cries and believe otherwise...she's arching her back and those screams just aren't normal. She hasn't been able to eat well since last night...lots of gagging and screaming at the bottle. I just want to crumple up into a ball and sob with her as I rock her, because I'm so damn sorry I can't fix it. It feels like a knife is being twisted into my heart. But of course, I can't cry with her because I can't cry.

I'm angry that we have to wait so long to even take the next step to try to find out what the problem is. I'm pissed that this many pediatric specialists are having this hard of a time figuring her out. Is it seriously that hard??? I'm angry that I keep having to put her through all these tests. Are we even doing the right thing? I don't really know.

Then I am mad about our financial situation, how Dave got demoted at the worst possible time. I'm trying to figure out how we are going to afford everything. We got an unexpected phone bill for $368 from our old phone company today. That's going to be half of Dave's check. It's so stupid. How are we going to afford that??? I don't think the bill is correct. I called customer service and griped at the lady on the phone. I hoped she would get rude with me so that I could yell at her, but no such luck. She put me on hold for 20 minutes and I just gave up.

I'm pissed off that my place of work won't help us out by letting me use the sick leave pool to take care of Brooklyn. That the HR woman repeatedly shows how little she cares by refusing to lift a finger to call me back and tell me that she doesn't really intend to try to help me. I'm mad that I don't have the money to be able to afford to take time off without pay to take care of my little baby bear.

She is so, so wonderful. After I got home from work today, she grabbed both of my cheeks and pulled my face against hers. So incredibly sweet. I'm angry that I can't enjoy this more because I am constantly so sad and scared and upset. Why can't I just be happier? I'm so grateful and so blessed and have everything to be happy about. What the hell is wrong with me? Seriously, who does things like this???

On top of everything, I get pissed at myself for being mad. And I feel so guilty for feeling the way I do. There are so many people that have it so much worse than we do. I know that. Parents whose babies are much sicker than Brooklyn, who have something wrong with them that can't be cured, who are terminally ill. I know that there are mommies who have lost their babies and I can't even imagine their pain. I don't have things nearly as bad as those people. Thinking of their situations makes me feel so guilty every time I talk to anyone about Brooklyn's medical issues. I feel like I don't have the right to even say anything that might make it seem that I am not so, so thankful for all we have. I know things could be so much worse. Trust me, I do. So I feel like a whiny, complaining little brat when I tell people what's going on...even the super short synopsis. I really hope that others don't see me that way, but I'm afraid that they might.

I just want to scream so bad...but I can't. I'm holding my baby and she is finally sleeping. And I feel a little bit better after venting here. Thanks for listening.

The weight on my shoulders

Wednesday afternoon, we took Brooklyn to the pediatrician for her weekly weight check.

11 pounds, 12 ounces. And she turned 6 months old that day.

She is growing...just much more slowly than everyone wants.

Last week at the gastroenterologist, she nurse told us that Brooklyn weighed "just under 12 pounds." As it turns out, she was 11 pounds and 8 ounces, and the nurse rounded the numbers off. Which is not a big deal at all if you are dealing with, say, a ten-year-old child...but an infant with weight gain problems? Yeah, you shouldn't round up to the nearest pound in that case.

Our pediatrician was actually out of town this week, so at our weight check visit, we had to deal with a different nurse and different pediatrician. The nurse seemed somewhat alarmed and told us that Brooklyn had gained only 4 ounces since August 18th (3 1/2 weeks). They want her to gain between 4 and 7 ounces per week. She went and consulted with the pediatrician who was there, who really didn't want to get involved because Brooklyn already has so many doctors. They told me to call her gastroenterologist (Dr. R) ASAP.

The nurse at Dr. R's called me back Thursday morning. She really freaked me out at first by telling me that Dr. R was considering hospitalizing Brooklyn to have her fed through an NG tube (through her nose). She asked me a few questions then said she would call me back that afternoon after she talked to Dr. R....leaving me to worry for hours about the prospect of hospitalization. I really don't understand why they would even consider this...if Brooklyn was refusing to eat or someothing, okay...but she does eat. She just doesn't gain weight properly. The doctors need to figure out what is the matter that is causing her not to gain and fix it, not force feed her and put her through more pain!

Anyway, the nurse finally called me back. No hospital stay for now. They have changed Brooklyn's feeding plan again...more cereal in the bottles, even more formula powder in them as well, to increase her calorie intake again. Dr. R. is also increasing the number of times per day she is taking her Reglan, because she is still having problems with the reflux and lots of spitting up.

Oh...they also told me that the endoscopy and bronchoscopy will not be until October 17th because that is the first date that the gastroenterologist, pulmonologist, and ENT could coordinate their surgical schedules. So here we sit waiting, again. It's quite discouraging when you know that no progress will be made toward finding out what is wrong for over a month...

My baby can't grow like she should be able to. And I can't seem to do anything to help her. She is so light, and my fears are so heavy.

When it rains....

Things have not been going well for my hubby at work for the past few months.

Yesterday, something that should have been a really minor issue (IF he wasn't on his sergeant's bad side and IF he hadn't already been suspended a couple of months ago) resulted in Dave being demoted. He lost his patrol deputy spot and is being sent back to work as a jailer.

This is really bad for us for a couple of reasons. First, it will be an $8,000 or $9,000 pay cut. We cannot afford this due to all of the expenses associated with having a sick baby. Doctor's visits. Co-pays. Medications. Tests. The trips to Dallas to see specialists - every week for the past month. Etc. Etc. Etc.

Secondly, we don't know what shift he will be on now. We had his shift and off days worked out to where child care was not an issue for us. He was on second shift and had three consecutive weekdays off. My mom would come over two days a week before Dave left for work to watch Brooklyn for about three or four hours, until I got home from work. Now...who knows. Dave could be working the same hours as I do or the midnight shift. We planned this out before Brooklyn was even born, not knowing at the time that it would become a necessity for us. Brooklyn's doctors have already said that she can't go to daycare because of her respiratory problems. If she catches a cold or a respiratory infection, it could be very, very bad for her. And I really don't think I would trust anyone else giving Brooklyn her medications and breathing treatments. Good luck finding a daycare that would do that, anyway. Besides, with the huge decrease in hubby's pay, how can we possibly afford to pay someone to take care of our baby? We didn't really have any extra money as it was before he was demoted.

What shitty timing for all this.

It's pouring.

27

Today is my birthday. I am 27 years old.

What a year in my life this has been. It's incredible how much has changed for me in the past 365 days. This time last year, my tummy was just barely beginnging to grow. If you didn't know me, you never would have guessed that I was pregnant then. My belly held the most wonderful secret in the world, a tiny, perfect little person who then measured one centimeter long.

Now, one short trip around the sun later, I'm a mommy. Mommy to a gorgeous little girl with big blue eyes, silky-fine blonde hair, and the most beautiful laugh I've ever heard. A sweet, snuggly, smart, hilarious, courageous baby girl named Brooklyn Lillyann. And she will be 6 months old tomorrow! Time is moving too quickly for me. I want to pause the world around me and just soak in how wonderful my precious daughter is. How blessed I feel. How in love with her I am.

A year ago, if someone had tried to explain to me the magnitude of changes that would take place in my life once I became a mother, there's no way I could have wrapped my head around it. It has knocked my off my feet and taken my breath away, but I wouldn't trade it for anything. The stress and fear and depression and sleepless nights...they're all worth it. It sounds contrite, but it's true. I can't even imagine my life without Brooklyn. How did I ever get so lucky?

Wow. What a difference a year makes. My heart feels like it has grown a million times bigger to try to hold the love I have for Brooklyn, and it still isn't enough. But my heart can't be too big, because Brooklyn holds it in her tiny little hand.

Cheers to this year. Cheers to changes. Cheers to hoping for another year full of wonderful changes.

The many names of Brooklyn

We call Brooklyn so many different nicknames that it will be a wonder if she ever learns her real name! Currently, her aliases include:

- Baby Bear (My favorite! ♥)
- Little B (also L.B.)
- Tiny One
- Squeaky (Given to her by some of my coworkers)
- Peanut (This was started by the nurses at the hospital when she was born)
- Sweet Bear
- Sugar Bear
- Miss B
- Brook-a-lyn
- Snuggle Bug
- Sweetie Pie
- Sweet Pea (What my mom calls her)
- Pretty Girl
- Munchkin
- Spider Monkey/Monkey Girl (Courtesy of my hubby. I asked him why and he said he didn't know. He just likes it. I never said that he made sense....)
- Stinkbug (Hubby again!)
- Pretty much any adjective that you could put before the word "bear" to describe her at that given moment, i.e. Sleepy Bear, Happy Bear, Hungry Bear, Silly Bear, Smiley Bear, Angry Bear.

:) So, what do you call your babies besides their actual names?

Nothing yet

Yesterday morning, I woke up and it was raining really hard. David and Brooklyn were still asleep. I went outside and saw how much rain there was, how saturated the ground was, and how muddy our yard was. I started thinking about how bad the interstate is during rainy weather. The ruts worn into the road and how easy it is to hydroplane all over the place. The multitude of 18-wheelers that spray water onto your windshield so that you can't see where you're going. The aggressive drivers in Dallas and how they will cut across five lanes of traffic and slam their brakes on in front of you regardless of the weather. I started having an anxiety attack, picturing us in a wreck, our car rolled upside down, and all of the horrible things that could happen to Brooklyn if we did have a wreck.

I fretted for a while. I called my mom and asked her if I should try to reschedule Brooklyn's appointment. She gave me reasons why I should and reasons why I shouldn't and really wasn't much help. I called the pediatric gastroenterologist (Dr. R) and asked the scheduler when the next appointment would be if I did reschedule. She said September 23. I woke Dave up and asked him what we should do. He thought that we should stay home because seeing a doctor wasn't worth getting into a wreck with Brooklyn in the car. "If it was just us, that would be one thing," he said. "Brooklyn has enough problems, she doesn't need anything else to happen. Just call and tell then to give you that appointment for the 23rd."

But I felt really bad about making Brooklyn wait 3 more weeks with nothing else planned at this time. She had a really bad weekend with her reflux. I didn't want her to just wait when nothing is getting better. I called Dr. A's office and his nurse told me that Dr. A really wanted us to go to the appointment. Dr. A thought it was really important and didn't want it delayed. "Okay. We'll do it then."

By that time, I had wasted so much time trying to figure out what to do that it was practically time for us to leave. I told Dave to get out of bed and we rushed around getting Brooklyn fed and changed, giving her her medicines, and packing her diaper bag. The midday news show came on and showed that Hurricane Gustav had shifted northward and wasn't going to affect our area nearly as much as previously predicted. Whew!

The ride to Dallas was rainy and windy and messy, but there were no torrential downpours and people were actually using their driving manners. We arrived about 5 minutes late for our appointment, but I had called them about a half hour prior to let them know we might be a little behind due to bad weather. Last week, they had warned me that we would probably have to wait a long time to see Dr. R because we were a "work-in appointment." But they called us back about 10 minutes after I finished filling out Brooklyn's paperwork.

Brooklyn weighed just shy of 12 pounds. She was still 24 inches long. I was happy that there was some weight gain, even if it's not considered much. For us it's a pretty big deal at this point.

Dr. R was very nice. He spent a lot of time taking down Brooklyn's full medical history and asked us lots of questions about her. He did a brief examination of her. He agrees with Dr. A and Dr. G2, that the ENT is wrong and that Brooklyn's respiratory problems are not just caused by a really bad case of reflux. He thinks that her breathing problems are probably aggravated by the reflux, so he increased one of her reflux meds. The other 2 are already maximum doses for her size. He said that he is not sure what her respiratory issue is, but mentioned tracheomalacia and allergies to formula (she is breastfed about 50% of the time now and gets formula the rest of the time.)

Brooklyn has to have an endoscopy (scope of her stomach). Dr. R talked to Dr. G2, and Dr. G2 also wants to her to have a bronchoscopy (scope of her lower airway). They are going to try to coordinate their surgery schedules to do both procedures at the same time, so that Brooklyn doesn't have to be admitted to the hospital and be put under anesthesia twice. The surgical department at the children's hospital is supposed to call me this week to set up a pre-op appointment and the procedures. Dave asked if the pre-op appointment could be the same day as the procedure, and the nurse said no, due to Brooklyn's respiratory problems/stridor. I'm not sure why or what goes on at that appointment. They gave me a hospital "welcome packet" that explains some about what is going to happen before and after surgery, but I haven't gotten to read it yet. Anyway, the follow-up appointment with Dr. R is in 6 weeks, and the procedures will be done before then.

That's where we're at right now. More waiting. More tests. Including the bronchoscopy, which all the doctors have been trying to avoid up to this point because of Brooklyn's size and the risks.

I almost forgot to tell you how good and brave Brooklyn was. But then, she pretty much always is with all of this medical stuff. She is a tough little girl. I am so proud of her and I love her so much. I'm ready to not have to subject her to all of this anymore.

A storm coming

Brooklyn's appointment with the pediatric gastroenterologist is this afternoon. At first I wondered if we even needed to see a gastroenterologist since Brooklyn's main problem seems to be a respiratory issue. But her reflux has been really bad this weekend. She has been soaking through her clothes and burp cloths with her spit up. She has also been having the hour-long inconsolable screaming fits that I thought she had outgrown...several times per day on Saturday and Sunday. This is all in spite of being on maximum doses of Prevacid, Zantac, and Reglan. So I guess it's not a bad idea.

I have a somewhat negative attitude about all of this right now. I'm just very discouraged and I am no longer going into these appointments completely believing that the doctors are going to fix my baby. That's not to say that I am totally hopeless or that I don't believe that God is going to answer all of the prayers that are sent up for Brooklyn every day. I do have hope that someone is going to figure this out....just not as much as before. I guess the best way to explain my feelings about the appointment tomorrow is to say that I am not expecting anything from it. I would like to be pleasantly surprised though. I'm just not expecting it.

I am hoping for good weather for our trip to Dallas today. Tropical Storm Gustav is headed this way and we are under a tropical storm warning. Nothing has happened yet, but at least some very hard rain and winds are on the way. Since Gustav didn't end up being as bad as expected, I'm not quite as worried about this as I was a couple of days ago. The weather people were predicting 10-15 inches of rain here, but now they are saying more like 6 inches. They were also saying that Gustav was going to stall out and be over our area for several days, but now we may only be affected for about 2 days. All I know is, I hate driving on the interstate when it's raining. I have hydroplaned on it one too many times! I'm so, so afraid of getting into a wreck with Brooklyn in the car.

Of course, the hydroplaning won't be much of an issue if we are sitting in bumper-to-bumper traffic. We are on the evacuation route from both Louisiana and Beaumont and have several thousand evacuees in our town right now. Of course they aren't just here - that's not the issue - they're in Dallas and everywhere in between too! I'm not too worried about traffic heading towards Dallas...but on the way home, everyone else may be headed back to their homes that they were evacuated from as well. We'll see. It could be a long trip.