Friday, November 6, 2009

Denied.

I just received a call informing me that Brooklyn has been denied for her Synagis shots for RSV this year.

Apparently, our insurance changed its' criteria this summer and decided that babies with "congenital anomalies" would only be approved for Synagis during their first 12 months of life, regardless of how long those congenital anomalies continue to cause them problems.

I am so upset that I can't quit crying. I am ready to rip my hair out from the frustration. I have been jumping through hoops trying to get my HIGH-RISK daughter an H1N1 vaccination for a month now, with absolutely no success. No one has them. Not here, not Dallas. My only offer has been to give her one with thimerosol (mercury) in it. I think not. We've already had our autism scare and are dealing with delays as it is. I thought for sure when I took Brooklyn to see one of her specialists at Children's Medical that they would have the vaccinations. Nope.

I am absolutely terrified. Every day brings more news stories about the virus, more children dying. Every time a local child has died, the media has made a big deal out of stressing that the child "had a compromised respiratory system." I know why they do it. It's supposed to comfort parents of healthy children, and that's all well and good, but what about us parents of babies and children who do have those "compromised respiratory systems." Thanks for adding to the panic and anxiety and fear we already had.

I'm becoming more and more of a hermit with Brooklyn with each passing week. We don't go to anyone else's house. Birthday parties? I think not. Anything indoors with multiple people, I don't want her there. Stores, malls, restuarants, I am freaked out. I don't want to take her anywhere anymore. I'm just too scared. My anxiety level is ridiculous. Outdoor things seem less threatening to me. We took her to the pumpkin patch two weeks ago, but I didn't want her to touch anything. We went to the zoo on Halloween, and I was alright most of the time, but when we went in the penguin house, where it was warm and humid and crowded and seemed like a germ breeding ground, I wanted Brooklyn out of there as quickly as possible. I make up excuses why I can't go places with my friends. We are quickly becoming prisoners in our own home.

Can someone please give my little girl a break? I just want her protected from all of these horrible things going around.This doesn't seem like too much to ask.

The Synagis coordinator said that she is going to try to get Brooklyn's pulmonologist to appeal the ruling. So all we can do at this point is hope and pray for a positive outcome.

Monday, November 2, 2009

These moments

I like
the weekend mornings
when it is just she and I.
I wake up to get her from her from her crib and she smiles at me,
offers me her bink and says in her high-pitched little singsongy voice,
"hap-py, hap-py, hap-py, hap-py!"
She stands up, reaches out for me, and I pick her up.
"Good morning, Baby Bear!," I say, "Did you sleep good?"
She answers by giving me sweet baby hugs and kisses.
There could not be a better start to a day.

We head to the kitchen, where I make her a morning bottle.
The two of us go to the couch so that she can have her breakfast.
She still lets me hold her like a newborn baby when she takes her bottle.
We snuggle,
just she and I,
in our pajamas.
She lays her head against my chest,
I rest my cheek on her head,
and we curl up under a blanket together.
I notice that she drinks her bottle slower than she does at other times.
If I move my head the slightest bit,
she snuggles her body closer against mine,
pushing her head underneath the curve of my neck.
She is showing me that she wants to be close to me, too.
She likes our morning cuddle times as much as I do.
I am glad, because these moments seem so few and far between these days.
My baby girl is growing so quickly,
she is so busy,
she has so much to learn,
so much to explore.
She rarely has time to let her mommy hold her close,
no matter how much I crave it.

I cradle her warm, soft body in my arms.
We gaze into each other's eyes.
I stroke her silky soft hair,
I kiss her smooth forehead
and her plush, chubby cheek.
A dozen times,
a hundred times.
I tell her how much I love her
a thousand ways,
a million ways.
That she is my everything,
as if that could describe it fully.
The truth is, I can never find the perfect words
to tell her just how much of a miracle she is.

Then, all too soon,
breakfast is done,
and she reaches up to give me a kiss
before she toddles away
to find her next adventure.

Tuesday, October 27, 2009

I ♥ Faces: Week 42 - Halloween Dress Up Photo Challenge

Here is my little ladybug all ready for Halloween!

This was one of the few shots I managed to capture in between the 10,000 times Brooklyn threw her antennae on the ground. LOL. Oh well.

I may be biased, but I think she's the cutest ladybug ever with or without them. :)

Please visit I ♥ Faces to see lots of other little Halloween cuties!

Wednesday, October 21, 2009

Doing it on my own: EPIC FAIL.

I have been an extremely bad blogger and reader lately. But I've been bad at a lot of things in my life, and I'm finally going to attempt to explain.

About four months ago, I finished breastfeeding Brooklyn and was able to switch antidepressants. I wanted to get off Lexapro because my doctor had told me that after a year, it caused weight gain. I had suspected that it was already responsible for the weight that had been creeping on and would not go away, no matter what I did. So my doctor had said to call when Brooklyn was weaned, and they would switch me to Wellbutrin, which is better for the weight issue. But when I called, they said I couldn't just switch, I had to wean myself off the Lexapro slowly. I had been taking 20 mg a day. I had to drop back to 10 mg a day for a 2 weeks, then one every other day for 2 weeks, then one every third day for a week. I was supposed to call them for the Wellbutrin prescription when I got down to every third day.

But by the time I got down to that one pill every third day, I decided that I was doing all right. And here's the thing: I was prescribed that medicine for post-partum depression. Can you really say you have post-partum depression anymore when you have a toddler? Hardly. I was a bit more emotional, I cried at more things, both happy and sad. I figured it was just the fact that I didn't have the pills acting as a numbing barrier between me and my life anymore. I decided that I was ready to feel everything again. I stopped taking the Lexapro, and I did not call for the Wellbutrin. I was done.

Unfortunately, it didn't take long for feeling like I was all right to turn into feeling miserable. I was sad and unhappy and overly sensitive and angry at everything, I didn't want to go anywhere, I wanted to sleep all of the time, I fought with my husband about ridiculous things that normally wouldn't upset me. I cried countless times every day, again, often about things that weren't even that big of a deal.

Dave didn't get the carseat out of my car before I went to work, so he couldn't go get Brooklyn's prescription like I had asked him to. She was going to miss a dose. It was his off day. Why did he have to be so damn lazy? I was so, so angry. Why should she have to suffer because he doesn't listen to me? Meltdown.

Brooklyn had diarrhea on her Tucker sling an hour before bedtime. I didn't know how I was going to get it clean before she had to go to sleep. Dave was leaving for work. Brooklyn was pulling on my leg screaming and fussing. I stood there bawling.

I don't know. There are probably dozens of these scenarios I'd rather not think about because they just aren't me. Normally. But I let it go on for months. Stubbornness.

I sat at my friend's house and cried and told her about what was going on. "You know what you have to do," she said. "You already told me you're not okay. That's what these medicines are for. You told me that before."

"But how are you ever supposed to know when you can stop? Am I just supposed to be on these pills forever or something? I don't want that. That's ridiculous."

"You tried it without them, it didn't work. You're not ready. You have a lot of stress. You have too much going on. Maybe you can try again in a year or something."

I still did nothing.

On a day when I was at work and had treated my husband particularly badly, I had been ignoring his calls for some time. I finally picked up the phone to talk to him. He told me how frustrated he was with me, but that he knew how bad I had been feeling. "I really think you weren't ready to stop taking your medicine," he said. "You need to call your doctor."

"I'm not same damn psych patient that needs to be monitored on their meds," I snapped back.

"I'm not saying that! You're the only person who thinks that! You're so hypocritical! You work in this job where you tell people they need to get help, where you tell people it's okay to be on these medicines, that they help them, and then you think you're the only person who's above taking them. You won't even tell your own mom about it because you're so damn ashamed of it! I don't get you!"

Here come the tears. "That's easy for you to say. You don't have to take them."

"But I would. If something happened at work or something, and it affected the way things were at home between me and you and Brooklyn, I would do it, and I know you wouldn't judge me for it, right?"

"Hold on." I had to get up and close my office door before the serious waterworks started.

"Okay," I said, "I just don't get it. How can Brooklyn be 18 months old and I still have post-partum depression?"

"Baby. You don't. You just have depression now."

Now I was bawling like a baby. "W-w-w-whyyyyyyy???"

"I don't know why, baby. We just have to deal with it."

"That's not fair. I wasn't like this before."

"I know."

"I hate me. I hate this."

"I know. But Brooklyn loves you, and I love you. And we need you to be happy."

It still took me two weeks to make myself go to the doctor. I did it though. I'm taking Cymbalta now. It's been three weeks, and I'm having a hard time on it. I am starting to feel less depressed, but I'm very, very sick to my stomach and exhausted all of the time. I'm also taking a new medication for my migraines along with it, so I'm not sure if they're working together to make me feel awful. The 14 pounds I've lost is not too shabby though. I'm working through it. This too shall pass, right? Just bear with me, bloggy friends.

So much for doing it all by myself.

Tuesday, September 29, 2009

September pulmonologist appointment

It has been nearly 2 weeks since Brooklyn had her appointment with Dr. G2, her pulmonologist, so I am way overdue in writing this post.

Okay. Brooklyn weighed just over 21 pounds and they said she was 30 inches long (but I don't think she shrunk an inch since she saw Dr. A a few days prior!) Her oxygenation was 99%, and the nurse didn't tell me what her respirations were :(.

Dr. G2 was happy that increasing Brooklyn's dosage of Bethanechol has helped her stridor so much. It was literally two and a half to three weeks after our last appointment with him in June, when he increased her dose 0.3 ml, that her stridor pretty much disappeared at night. It was pretty incredible. It caused a lot of anxiety for us at first, because hearing every noisy breath she took at night was our "normal," but we have adjusted and can sleep without hearing it now.

Brooklyn has had a runny nose for about a month now, and Dr. G2 thinks the postnasal drip may be cauing her to cough more thn she used to. So now we have to give her a nasal spray once per day. She hated it at first, and I wasn't surprised. I mean, the girl can't stand when I try to wipe her runny nose. But now she doesn't mind it and even thinks it's funny to sniff really loud a bunch of times after we put the spray in her nose.

Dr. G2's main concern was that Brooklyn's stridor still gets pretty loud with activity. She gets noisy when she is running around and playing and even when she is doing things that aren't particularly exerting or strenuous, like picking up toys or getting her books out of her basket. Her respirations get a lot higher and she gets much noisier any time she is being active. I don't think that her stridor is as loud as it used to be, but it's still there, and she's still obviously struggling.

Brooklyn also coughs and starts choking out of nowhere, even if she hasn't been eating or drinking for a long time. Sometimes we are just riding in the car and she will just start choking, and I have no idea why this is going on, if it is the reflux or if it is something else. She hadn't actually been "spitting up" with the reflux for a while, she had been refluxing and swallowing everything back down. Over the past week, she has started spitting up again. The reason why I explain this in conjunction with her pulmonologist's visit is that all of her doctors have pointed out that everything inside of her throat/airway area is just weak...it's all connected...and there doesn't seem to be a great deal of improvement.

Dr. G2 said that he is concerned that she may be exhibiting some signs of "airway reactivity." I didn't understand what this meant, and all of my Googling didn't really help me either. A nurse friend of mine said that her son has it, and it means that he has asthma-like symptoms and has to have nebulizer treatments and such any time that he has a cold or is sick. So is it basically a chronic respiratory condition? Forever? That's really discouraging to me...I had hoped that once Brooklyn outgrew her laryngomalacia, we would be done with all of this for good. Does anyone know anything about airway reactivity or reactive airway disease? Can y'all help me understand what this is? I know I have a few nurse bloggy friends out there ;).

Anyway, Dr. G2 started Brooklyn on steroid inhaler, Flovent. It says on her report that it will "provide anti-inflammatory control" and "hopefully decrease the noise and work of breathing that she has when she exercises." She has to take two puffs twice per day using this lovely little contraption called the Aerochamber. It's like a tube with an oxygen mask and a one-way valve on one side and a hole for the inhaler to fit in on the other side. They gave Dave and I a "training session" at the doctor's office, and oh my, does Brooklyn ever despise that thing. The training session consisted of me holding Brooklyn's body and head still, Dave holding her arms down, and the nurse holding the Aerochamber on her face while Brooklyn screamed and did her best to flail and twist away from the Evil Torture Device. We had to watch for the valve to go in and out six times. Once it finally did, the nurse removed the mask from Brooklyn's face. I leaned back in the chair and cheered for Brooklyn. "Okay," said the nurse. "Let's do the second puff." Oh, crap. And then there was round two of the battle royale.

The inhaler has been terrible for us. It was a horrible battle for several days, then seemed to improve for a few days. We even had two or three days with no tears at all!!! But...now she is back to kicking, fighting, trying to pull the inhaler out of the Aerochamber, trying to stick her fingers in the valve, trying to run away, twisting away from me, shaking her head back and forth, trying to puff the inhaler extra times....it is no fun at all for anyone involved. We have tried to make it as "fun" as we can...we put it on our faces, we let her put the Aerochamber on her dolls and bears, we breathe loudly along with her...I don't know. It sucks. It's like the return of the evil nebulizer. She never did get used to that thing, it always scared her. I was so happy when we were able to return it to the home health agency!!

So that was our visit with Dr. G2. He said that he was pleased with Brooklyn's progress, but....you know. Why can't we be done with this? It seems like with every appointment, we are adding and increasing medications, when we were told so long ago that Brooklyn would be so far beyond all of this by now. We go back in 3 months.

Tuesday, September 15, 2009

Early Childhood Intervention evaluation

The ECI evaluation is a state form called Developmental Assessment of Young Children (DAYC), and it covers five areas of development. Brooklyn had her evalutation yesterday, and it took about two hours. In order to qualify for services with ECI, Brooklyn would have to show a "significant delay" of at least three to four months in at least one of the five areas. She is 18 months old, and in an ideal world, she would score as an 18 month old on everything. But it's not, and here is how she scored out:

1. Cognitive - 21 months
2. Communication - 13 months
3. Social-Emotional - 11 months
4. Physical Development - 12 months
5. Adaptive Behavior - 12 months

So. "Significant delays" in four out of five areas. I really, really did not expect that, and it was like a punch in the stomach. Delays in one or two areas that overlap, yeah, okay, I understand that. But four???

The way that they explained it to me is that most of the problems go back to speech - that Brooklyn doesn't have a word for anything that she wants, that she doesn't initiate using words, that she doesn't show us what she wants or needs with speech or gestures. When she wants something, she gets very upset and just cries and screams, and we are just left to try to play the guessing game about what has her so upset. A major goal is going to be to teach her words and signs to show us what she wants to reduce her frustration and make things happier for everyone.

I know that my baby understands a whole lot of what we say but just can't say it herself, but yet the low "adaptive" score comes from her not understanding what things like "put the block ON the table" or "put the cup IN the bowl" mean. Also, that she doesn't play in "repeated sequences," such as rock the baby, feed the baby, burp the baby....three or four repeated things in a row. I think she seems awfully young to be doing things like that, but what do I know. I cried when she explained this part to me, because it makes me feel like I haven't been doing enough to teach Brooklyn things she should know at her age. The guilt I feel over this is ridiculous. I feel like I have failed my daughter, like a lazy, sorry-ass, unworthy mother.

There were a few things that made her score low that I honestly didn't agree with...like on the Social-Emotional section, at her age, they wanted her to prefer one parent over the other for things like feeding her, changing her, etc. She doesn't. The only thing is that she only wants me to read to her. They considered it a negative that she didnt have a favorite parent for these everyday tasks. That seems strange to me.

The good news from yesterday was that the speech therapist said that she saw NO signs of autistic behavior whatsoever. Thank you, God!!!!

For now, we will have a visit from the speech therapist once per month, the developmental coordinator once or twice per month, and the physical therapist has not contacted us to schedule anything yet. Every six months they will re-evaluate and see whether she is making progress.

The speech therapist said that this differs from a lot of programs where parents take their children to therapy twice per week or something like that. They visit less often and focus more time on teaching the parents strategies to use at home with the children so that the children can be benefiting from the therapy constantly, not just a couple of hours per week. I like that idea. I wonder if the physical therapy is going to be the same way. I honestly worry about that, because when I was supposed to do physical therapy stretches on Brooklyn's neck when she was an infant, it seemed to cause her so much pain that I could not do it. I cried more than she did.

Anyway, we did some initial goal-setting, and the speech therapist gave us just a couple of strategies to start using with Brooklyn at home (giving her simple choices, naming everything).

And that's where we are at right now.

ECI intake and Pedi visit

This time last year, it was pretty normal for Brooklyn to have tons of appointments, but our calendar doesn't usually look like this anymore! Anyway, I have a lot to catch y'all up on. This past week, Brooklyn had her Early Childhood Intervention (ECI) intake appointment, an appointment with Dr. A, and her evaluation with the developmental specialist and speech therapist from ECI (I'm going to do a separate post on the ECI evaluation.) And tomorrow she sees her pulmonologist, Dr. G2.

Wednesday, 9/9 - ECI intake.
It took about six weeks to get this appointment for Brooklyn. I did a self-referral on the advice of a friend who is a nurse back when Brooklyn was not speaking at all.

The developmental coordinator came to our house Wednesday. She had told me over the phone that the intake would take about 20 minutes and that we were going to go over my pregnancy, Brooklyn's birth, her medical history, and her development. I thought it was really funny that the lady thought it would only take 20 minutes to go over all of Brooklyn's medical history...and I was right, she was there for over an hour.

Brooklyn warmed up to her immediately and really seemed to like her. She didn't determine Brooklyn's eligibility for services or anything at that point, it was strictly an information-gathering type of appointment. She told us she would return with the speech therapist to evaluate Brooklyn the following Monday. She also took note of Brooklyn's head tilt and said that she would talk to their physical therapist about the possiblity of coming to evaluate Brooklyn at the same time as well.

One thing that I think is really great about ECI is that they are going to come to our house for everything...so, no other kids, no waiting rooms, no germs, no sickies!!!

Friday, 9/11 - 18 month appointment with Dr. A, Brooklyn's pediatrician.
Brooklyn weighed 20 pounds, 10 ounces (5th percentile) and was 31 inches tall (almost 25th percentile). This showed up as a weight loss of almost a pound since last month. But I told Dr. A that there had been a different nurse there at our last appointment, and she had Brooklyn stand on the older kids' scale fully clothed, instead of laying her on the baby scale in her diaper like they normally do. Dr. A said that the substitute nurse should have listened to me when I tried to tell her about how they normally weigh Brooklyn, so he marked last month's weight as "falsely elevated."

Dr. A said that Brooklyn's weight gain is not great, as usual, but it is "adequate." We will keep her on 2 bottles of increased calorie formula per day for now to help her gain weight.

He was very happy, as of course we are, that Brooklyn is starting to say some words again. She has about eight words she says now (baby, bear, bink, bib, ball, yeah, this, eye, dada...oh, UPDATE...this weekend marked the return of MAMA!!!!) He was very encouraged that she is making progress again, and said, "I don't know what happened to make her regress like that. To be honest, we'll probably never know what happened." According to his standards, Brooklyn is almost back in the range of normal speech for her age.

We told Dr. A about the ECI evaluation that we had scheduled. He really doesn't think that speech therapy is all that helpful in children younger than two, but definitely doesn't feel like it hurts. He thinks that ECI will be able to help Brooklyn more with her head tilt than with anything else. He does think she needs some physical therapy for it at this point. He said that she can correct it for short periods of time, she just usually doesn't. Another thing that he said we will have to keep an eye on is that babies with head tilts can have vision problems - sometimes one of their eyes will not focus as well as the other eye because they don't look at things straight on. He said that around her second birthday, he will refer her to a pediatric optometrist to make sure everything is okay with her eyes, but right now, he doesn't see any signs of problems there.

Brooklyn had to get her Hib vaccine and her flu shot. I asked whether she would be getting Synagis shots again this fall and Dr. A said that he would call Dr. G2 to discuss it with him. He doesn't feel like RSV would be as detrimental to Brooklyn's health this season as it would have been last year, even though she has not outgrown her laryngomalacia. He is not sure how much our insurance would fight us over it either.

I guess we will find out more at Brooklyn's appointment with Dr. G2 tomorrow.

Thursday, September 10, 2009

A half birthday for Baby Bear!

Brooklyn is a year and a half old today.
Is that even possible?

My Baby Bear is now an eighteen-month-old,
huggy,
kissy,
pretty,
brainy,
smiley,
dainty,
squealy,
snuggly,
busy,
jibber-jabbery,
bouncy,
silly,
giggly,
dancey,
spinny,
funny,
itty bitty little sweetie girl.

She is my little fighter, the strongest soul hidden within the most gentle, delicate little body.

And I could not love her more.

Happy half birthday, my beautiful, beautiful Brooklyn.
You break my heart and yet make it grow more every day.
You are my sunshine, my only sunshine.
You make me happy when skies are gray.
You'll never know, dear, how much I love you.
Please don't take my sunshine away.
*kiss*

Wednesday, September 9, 2009

28

I am 28 years old today.

The Blogger logo has a piece of birthday cake with a candle on it today. Do we share a birthday?

09/09/09.

That sounds pretty lucky.

I hope it is.

I am having one of those days where it is hard to even force a fake smile.

I have got to do something to get myself happy. I guess first I have to figure out what that is. I need to find me. I used to know who I was. I used to have an identity.

Brooklyn is the only thing in my life that makes me happy anymore. She is the only wonderful, beautiful, bright, sunny spot in a world of gray. And that means that when she is unhappy, even when it is just grumpy/whiny/sleepy/frustrated typical toddler unhappiness, I am miserable. I feel like a horrible mother, a horrible person when she is not blissfully happy. I feel like curling into a little ball and disappearing. Really, I just want to go to sleep when it's like that (when Dave's home, obviously), but I already feel so guilty about missing out on spending time with my Baby Bear.

There is so much more to this, but it doesn't belong in this post. Most of this really didn't either, but oh well.

I hate being like this.

28 has to get better.

I want a happy birthday. I want a happy 28.

And I close my eyes and wish.

Friday, September 4, 2009

Night watch

My husband moves to night shift tonight. Full-on, 6 pm til 6 am overnights. And I am full of anxiety and fear over it.

I do not want to be at home alone. I am scared. No, make that terrified.

Let me explain why.

I didn't blog about it, but there was a night back in May of this year when a man tried to break into our house at three in the morning.

We were home, asleep. Our dogs woke suddenly and ran to the foot of our bed, barking wildly. We quieted them, then there was another sound. We weren't sure what it was. The dogs went crazy again. We got them calmed down again. Then there was another noise that sounded like someone walking on the wood laminate floor in our living room. "Okay," I whispered, "That sounds like footsteps."

Dave got out of bed and let the dogs down. They charged out of the room, growling and barking. But it was as if there was an invisible perimeter on the living room rug that they would not pass. They absolutely would NOT go any further. Dave picked up his flashlight and shone it around the living room. He would later tell me that someone else flashed a different colored flashlight on our dogs. He hurriedly came back in the bedroom. I was still sitting on our bed. "Call 911," my husband hissed. "Someone's here. I don't know if they're inside or outside, but someone's here."

"What?", I whimpered. "Brooklyn...Brooklyn...." Her bedroom is on the opposite side of the house. "Call 911. Now," Dave growled.

Dave grabbed his shotgun and went to the edge of the living room. He cocked it and roared, "GET OUT OF THE HOUSE!!!"

My trembling fingers fumbled with the cell phone. First I dialed 811. Then 911. The dispatcher answered and asked what my emergency was. I told him my full address and that someone was either trying to break into our house or was already in our house. I was practically hyperventilating as I told him, "My baby...I can't get to her...she's on the other side of the house...my husband's a cop....he's trying to clear the house....I can't get to my baby....my baby...."
Then the dispatcher asked me if I was calling from within the city limits of the major city about 10 miles away from us. UM, NO. I GAVE YOU MY FULL ADDRESS, INCLUDING TOWN, WHEN I CALLED!!!! "Then you need their police department, ma'am. Let me transfer you." AND HE PUT ME ON HOLD!!!

So by then I was definitely hyperventilating and shaking harder than I probably ever have and I had to relay the whole situation to the dispatcher in my actual town. And I could no longer hear Dave....I could occasionally hear a door or see flashing lights and I had no idea what was going on, I just needed to get to my Baby Bear so, so bad.

I think once I was on the phone with the proper dispatcher for all of three minutes before the police arrived at our house. But....oh my God, you want to talk about time creeping by. I slumped against our closet door. "Oh my God...please make them hurry...please, please, my baby, my little baby girl, please, I can't get to her, please, I have to get to her, please, please make them hurry, oh my God, I'm so scared...."

As it turned out, no one had gotten inside of our house. They had been in our backyard, they had come through our back gate. There were footprints in the mud leading up to the window where Dave had seen the flashlight shining in.

And that was that. The police couldn't find him. A man was arrested breaking into houses in a neighboring town with a similar M.O. a few days later. Maybe it was him. Maybe not.

Brooklyn never woke up once through the whole ordeal. Not even after the police left, when I collapsed next to her crib, crying.

And THAT is why I do not want to be home alone at night. I can't do this. What am I supposed to do if something like this happens again and my husband isn't home? I am absolutely terrified of not being able to protect my baby girl.

So. Do I take a sleeping bag into her room and sleep on her floor? My alarm will wake her up when I have to get up for work. Dave won't let me move her crib into our room. I have thought about putting her Tucker sling/wedge that she sleeps on onto our bed next to me so that she can sleep there, but Dave would have to move her and the whole apparatus when he gets home at 6 or 6:30 a.m., and I'm sure it would wake Brooklyn. I hate to shake up her sleep routine in any way whatsoever when she has just started sleeping so well the past few months, but I am just so afraid that I don't know what to do. The worry and fear are absolutely suffocating me this week. I am petrified of tonight. Ideas??????

Wednesday, August 19, 2009

Can I vent for a minute, please?

Dear Father-in-law,

How dare you. When your son calls to tell you how afraid he is that his baby could be autistic, how dare you belittle him and make him feel so small. He called you because this is the same diagnosis that his brother, your other son, has. So he thought you might be understanding for once. Instead of listening, you first had to argue with him and tell him that everything about Brooklyn's development is normal and that everything is fine. Then, when your son tells you, no, her doctors say it's not normal, you get mad and say that it's normal for a baby who has had the medical problems she has had. That you would expect it so why can't we? We just need to deal with it. That we don't know what real problems are. That everything that Brooklyn has had to struggle with her entire little life has never been "anything major."

Then you turn downright ugly and say that if there is something developmentally wrong with our daughter, that it's our fault because we "just strapped her in her carseat or swing and left her all the time" when she was an infant. I'm sorry, but when the hell did this happen?? I seem to remember nearly losing my mind because for months, I would not even put her down so that I could use the bathroom or change my clothes or get something to eat because I could not bear to hear her cry. I recall not sleeping many nights because she would not sleep unless she was being held, and my intense fear of SIDS wouldn't allow me to fall asleep while holding her, and I couldn't even dream of letting her sleep in my bed. Yes, she eventually began sleeping in her carseat, but that's because her doctors told us that was where she needed to sleep because she needed to be elevated.

So please tell me, when the fuck did we EVER just leave her in her carseat or swing and walk away? I still cannot leave her unattended for five seconds. Even when she was asleep in the carseat (on doctor's orders, remember???), she was right beside our bed at night, or right next to wherever we were sitting at the time. We have always talked to her, read to her, sang to her, played music for her, bought all of these developmental toys to play with her, everything we could think of to try to optimize her cognitive growth. We have held and rocked and cuddled and hugged and loved on our daughter more than I ever thought possible. Countless hours.

But you wouldn't know that, would you? You wouldn't know because you are a selfish asshole, and you could count the number of times you have been around your first and only grandchild on your digits. You could count the number of times you've held her on one hand. You lost interest in my pregnancy when we found out that our unborn baby was a little girl. At the hospital when she was born, you wouldn't call her by her name, and repeatedly referred to her as "Brittany" and "Brooke." Instead of an appropriate baby gift, you brought your hours-old granddaughter a hideous dog chew toy in the shape of a pig that was bigger than she was. When your son asked you to hold his pride and joy, you waved him away and said, "Nah. I don't want to." When she was terribly ill and was hospitalized when she was four months old, you came to her hospital room and mocked the IV line in her head, even after hearing how traumatic the experience was for both she and I. She was horribly ill and we were afraid, no one knew what was wrong, and you sat there and laughed at her.

You think that you know so much. You've disregarded our baby's doctors' orders because you believe that you are so much smarter than her specialists. When she was having so many problems with her digestive tract, you fed her meat juice, when all she had ever ingested prior to that point was breastmilk, formula, and baby cereal. You asked Dave if our daughter could have it. He said no. We looked over and not a minute later, you were doing what you wanted anyway. You've run your mouth off many a time, telling us what we need to be doing to "make" her sit, crawl, walk, breathe better, sleep better, gain weight, whatever you thought her problem was on each occasion. Do you think that your son has forgotten that you were scarcely around when he was growing up, and that when you were, you didn't make an effort to be a parent? Do you honestly think that we would believe that you're an expert on any of these matters?

You're the most ignorant, pompous, immature, inconsiderate, heartless asshole I have ever known. How dare you. How dare you crush your own son with your words when he needed you to just shut up and listen, or God forbid, reassure him a little bit. He is scared. He is beside himself with stress and worry. And you respond with talking out of your ass and mindless, unfounded accusations. HOW DARE YOU accuse us of poor parenting and blame us when you are never even around to know that we devote every last drop of our love and energy into making everything right for our precious baby girl. How dare you make us question ourselves. How dare you try to make things worse than they already are with your idiotic lies. How dare you treat our family this way.

Monday, August 17, 2009

Just a little love note

Dear Brooklyn,

You amaze me. It seems that with each passing day, there are new pieces of your personality that emerge and new things you do that are so incredibly sweet. And I fall deeper and deeper in love with you. I never thought love this deep was possible. I am in awe of the fact that God gave you to me. How in the world could I have been a part of making such a beautiful being as yourself?

Yesterday, you and I were in the car and we were listening to Death Cab for Cutie and Radiohead. I looked in the rearview mirror and I saw your head turned towards the sky, a smile on your face, and your arms in the air, waving to the beat of the music. You love music. You feel it in your bones and down in your soul; I love that about you. You are much like me in that way, I can see it. You feel totally free to express yourself, and I wish that I could be that way too. Most of us lose that freedom as the years pass by. I hope you never do, because it is such a beautiful part of you.

You gave me a kiss for the first time yesterday. You woke up from your afternoon nap and hugged me over and over, like you always do. Then you looked me straight in the eye, leaned forward, and gently pressed your little lips against mine. And again. And again. No puckering, no smooching noises. Just a soft touch and more sincerity than I have ever seen. Later, as I carried you around the park, you put your hand on my cheek and turned my head toward you so that you could give me more kisses. I choked back my tears. You are finally able to return the love I have been showing you for all these days, weeks, and months. It fills my heart with more adoration than I can contain. Loving you is incredible, but knowing that you love me too? It's the best feeling in the world. It amazes me that you love me back. I don't deserve anything that pure, that lovely, that sweet. But you choose to love me anyway. I don't deserve you, but yet you are mine.

What a miracle you are.

I love you, Brooklyn.
♥,
Mommy

Thursday, August 13, 2009

She fills me with such hope with a single word....

Tonight, Brooklyn and I sat on the couch, reading her books. We read a Sesame Street book, and then an Arthur book. Then she brought me "Corduroy." I began reading the story to her. On each page, I would ask, "Where's the bear? Where's the bunny? Show Mommy the baby doll. Can you please show Mommy where the giraffe is?" My questions were met with blank stares at the pages, just the way it has been for more than a month now. My baby girl had started recognizing animals and items on the pages of her books, then one day she just suddenly stopped. I have felt my heart sink a little further each day that she doesn't talk, doesn't want to hear the names of everything she sees, doesn't seem to care about words anymore.

I sighed and let Brooklyn turn the page.

I am nothing if not persistent, though. Next page. "Where's the bear, Brooklyn?"

"Behhhh??", said a tiny voice.

I swear I had to catch my breath. Surely it was just a coincidental noise she was making. Maybe it was wishful thinking on my part.

"Bear?"

"Behhhhh?"

"Bear?"

"Behhhhhhhhhhhh?"

"Oh my God! David! Is she saying bear?!"

Dave tested out the waters. "Hey Brooklyn....bear?"

"Behhhhhhhhh?"

My husband nodded excitedly. "Yeah! Yeah, she is!"

"Bear?????", I squealed.

"Behhhhhhhhhhhh???", said Brooklyn, bouncing on my lap with a big, proud smile.

"Oh, Baby Bear. Oh my gosh. You said bear! You talked! Oh, my smart little girl!!! Oh, thank you!!!" I drowned her in hugs and kisses.

And we said "bear" back and forth about 20 more times. My heart beat so fast in my chest with the excitement of it all. A flood of relief washed over me. I think I smiled for two hours straight. Oh. My. God. Thank you, thank you, thank you.

My little girl got tired of the "bear" game after a while, but she did humor us and say it a few more times throughout the evening.

As Dave was changing Brooklyn into her pajamas before bedtime, he was tickling her and saying, "Ohhhh....Baby Bear!" And then we heard, "Behhhhhh? Bee." Dave said, "I think she's trying to say Baby Bear!" So we repeated "Baby Bear!" over and over to Brooklyn, and over and over she said in her sweet little voice, "Behhhhh? Bee."

Before I laid my sweet girl down in her crib tonight, we cuddled together, listening to Iron & Wine. Brooklyn laid against my chest and snuggled her little body into mine. I laid my head against hers and cried softly, dampening her soft little curls with my tears. "Thank you, God," I whispered. "Thank you for letting my Baby Bear talk. Thank you. Please let her keep talking. Please let her other words come back. Please, please let her be okay. Thank you so much for her, God. Please let her be okay. Thank you, thank you for letting her talk again."

I could have held on to her forever tonight. And she seemed to feel the same. We stayed awake together later than usual, I held her and rocked her and talked to her. We were both so calm and peaceful. I told her how much I loved her and how proud I was of her. Every time I paused, she answered me with a little baby noise. "Mmmmm." To me, her sounds said, "I love you too."

I am filled with such love, such gratitude, such relief. It's as if the sound of her sweet little baby voice healed something inside of me that has been falling apart. I will not forget tonight. As I write this, I am still crying, yet I haven't felt this good in a while.

I know everything that has been going on with Brooklyn isn't suddenly fixed tonight. I know we still don't have all of the answers we need. But she took such a step in the right direction. It gives me hope and lets me believe that my little girl will be all right. Tonight, the feeling of fear that has been hanging all over me and weighing me down has been replaced with peace.

I think I will sleep soundly, for the first time in weeks.

Monday, August 10, 2009

A little reassurance, but a lot of "wait and see."

Brooklyn saw Dr. A, her pediatrician, on Friday afternoon. This visit was of course due to the fact that she has stopped saying all of her words except for "Dada," and we are worried about the possibility that she could be autistic.

Dr. A said that we did the right thing by bringing her in to see him. But he said that Brooklyn is too young to be diagnosed with autism or any other type of pervasive developmental disorder. He is concerned that she is no longer talking. He told us that it is not normal and it is not what you want. However, it "just happens" to babies sometimes, and it is possible that any day her words could return and everything would be back to normal. But the longer she goes without speaking, the more worried he will be.

Dr. A told us that his gut feeling is that Brooklyn is NOT autistic. This is mainly because she is continuing to socialize in ways other than speaking. During the appointment, Brooklyn got my keys out of my bag and kept bringing them to Dr. A. He said that this was the most positive thing he saw during our appointment, because autistic children will not do this because they don't care about involving others in their play. That was really encouraging. Brooklyn brings us her toys and books and things all the time. She always has.

Dr. A said that he will not tell us that some type of autism spectrum disorder not a possibility. He said if you took 100 babies who were going through what Brooklyn is going through right now, 90 of them would turn out fine, and about 10 of them would probably fall somewhere on the autism spectrum. I'm sorry, I know that was supposed to make us feel better, but I just really don't like those "10 out of 100" odds. There is not any kind of test that they can do at this point to give us an answer. Dr. A said that a lot of behaviors that are normal for a 16 or 17 month old would be considered autistic behavior in a child who was closer to two years old. He said that many times, when parents come in with similar concerns, he just tells them to relax and not to worry about it. But he said that he wasn't going to tell us that because of everything we have already been through with Brooklyn, the amount of medical problems she has had already that are not "the norm," and because of Dave's family history of autism. He called the genetic component of autism "huge."

He doesn't think that it is a neurological problem because Brooklyn hasn't regressed in any other areas of her development. But he will order a head MRI and refer her to a developmental specialist in a month or two if she still isn't talking.

So I asked, where did her words go...why would this just happen? Dr. A didn't have an explanation. Sometimes it happens after a severe infection, like encephalitis. But Brooklyn hasn't been sick. There is controversy over whether this can occur after immunizations, and he said that unfortunately Brooklyn falls into the post-MMR immunization window, when some people believe autistic behavior can begin. But then he talked about the research that showed that autism is not linked to the MMR vaccine. So I was confused...he brought up the immunization issue as a possible cause, then said that the vaccine and autism aren't related. I need to read more about this, and I will probably freak myself out more in doing so.

I guess the bottom line is that Dr. A doesn't know why this is happening.

He said that there wasn't much we could do right now besides wait. We are to verbalize everything we are doing all the time to her, talk to her constantly. We have already been doing that. I asked about the evaluation with Early Childhood Intervention, and Dr. A said that we could move forward with it if we wanted to, but that it wouldn't do much. He said that they would come and evaluate her and tell us that she is on the level of about a 10 or 11 month old, which sounds really bad, and put her in speech therapy. He told us that there is not much evidence that speech therapy is effective in babies Brooklyn's age. I think that I am going to go ahead and do it. I sent in the referral 2 weeks ago, and I haven't heard anything back yet. Hopefully they will call us soon. I need to feel like I am doing something for my baby besides just waiting and watching.

We go back to Dr. A in a month. So that's pretty much it for now. Wait and see. Or, in my case, wait and fret and worry and stress and overanalyze.....

Wednesday, August 5, 2009

The Book of Love

As I was gathering my things to leave for work yesterday morning, my mother in law sat on our couch and chatted away about what she and Brooklyn were going to do that day. She wanted to know where her best walking shoes were. "I read online that she should be able to walk backwards by now," she said. "So I'm going to take her on a walk and we're going to try it."

"Oh, okay," I replied. "Just remember, she's been a little behind on her motor development, so she might not be ready yet, and that's okay."

"Yeah, I know. But she's ahead on some things too. And she only does some of the weird things that Jon did when he was a baby."

I swallowed hard. Jon is my husband's younger brother, who is autistic and mentally retarded. We have not told my mother in law that we are having Brooklyn evaluated by Early Childhood Intervention or that we are afraid something could be wrong with her. She doesn't seem to have noticed that Brooklyn is no longer speaking words. She doesn't know that we are taking her to the doctor this Friday because we are afraid of what this could mean.

I tried to find my words and pushed the lump in my throat back down. "Um. Uh. What does she do that Jon did when he was a baby?"

"Well, you know how she plays by herself, and she gets off in her own little world, and you can't distract her from it? And you say her name and she doesn't look at you or anything? Jon was the only one of my kids who was like that."

"Oh."

"There's a lot of other stuff he did that was off that she doesn't do. So I think she's going to be fine by the time she starts school."

"Yeah." Fake smile. Outside in my car, I make a panicky call to David, and he tries to reassure me and tell me just to wait until Friday. He says things like maybe his mom doesn't remember which child did what. He tells me that all kids "zone out" when they're playing, that it's normal.

Maybe. But maybe not.

I am distracted all day long at work. My fingers think for themselves as they type away at reports on criminals while my mind is racing, playing the "what if" game. At lunch, I look up the age-appropriate milestone checklists again. I read over the possible early signs of autism again. My baby doesn't have all of these warning signs by any means. She still makes eye contact with me, she smiles, she laughs, she talks to herself in her baby language. She doesn't flap her hands or arms or organize her toys into categories. But that big red flag keeps jumping out at me....loss of words. Where did her words go? Why? I try to look for other causes of this, but everything I read mentions that dreaded A-word.

That evening, I leave work and drive across town to pick up one of Brooklyn's prescriptions. I am blaring one of my mix cd's, and Peter Gabriel's "Book of Love" begins to play. The beautiful sounds of the strings fill my ears, and I feel my heart breaking.



Ever since we started trying to conceive, David has had dreams of a little girl, our little daughter, playing a violin. He wants so badly for Brooklyn to play the violin, because I love them so much, and he has dreamed it vividly so many times. It paints a beautiful picture in my head as well. We have been so excited to see that Brooklyn appears to be so musically inclined...she loves to listen to music, she dances to every type of music she hears with a big grin on her face, she seems to feel the notes and chords and rhythms deep down inside her little body. "I can't wait to get her a violin," David said the other night. "I can't wait to hear her play it."

Fear ran through my body as I listened to the song playing, the strings swelling.

What if she CAN'T.

What if she can't do all of these other things that I want for her, that I dream of her being able to do. Doing well in school, becoming whatever she wants to be, getting married, having a family of her own. What if she can't do anything.

What if she's like my brother in law and can't ever live independently? What if, like him, she has to live isolated, trapped as an angry child within a grown-up body, unable to relate to anyone else? What if. Oh. My. God. What if.

I lost it. I sobbed hard all the way to the pharmacy, tears blurring my vision of the traffic, my throat so tight that it was painful to breathe, my chest feeling like it was going to burst wide open. "Dear God," I whispered, "Please let my baby be okay. Please let her start talking again. Don't do this to her. I can't take this."

These fucking what if's, and this fucking waiting game. I am not trying to dwell on the worst possible outcome, and I'm not trying to be negative, especially when we know nothing at this point. I don't want to jump to conclusions or assume anything. But I am so afraid. My mind wanders off to dark places these days, and sometimes I can't bring it back.

Monday, August 3, 2009

This machine cannot communicate these thoughts and the strain I am under....

I knew I hadn't blogged in a while, but I was shocked to get on here and see that it had been just a couple of days short of a month since my last entry.

Allow me to attempt to explain myself.

No, I can't give you a single specific reason why I haven't been writing. I will tell you that I started this blog to be my personal, somewhat-anonymous space where I could say what I wanted, where I could vent and worry and talk about things that I am normally too afraid to talk about in real life. Well, either afraid to talk about or I just don't feel like anyone wants to hear about it. And now, apparently I am getting that way with my blog too.

I could write about how more often than not, my marriage seems to be crumbling. How my husband and I fight for hours at a time, days at a time, yell at each other, and how I want to hit him so badly for saying the hurtful things he says to me. How I have cried so hard that I cannot stop and end up having panic attacks in the middle of the night, because I never, ever thought that we would be like this, and I never would have dreamed that I would feel the way that I do about him so often now.

I could blog about how my brother was living in a Wal-Mart because he has been kicked out of overy homeless shelter in town because he refuses to stop using drugs. I could tell you about the call my parents got from one of my brother's friends, saying that my brother had a cyanide pill and planned to take it soon to end his life. How my parents asked me to help, and so I knew nothing else to do but to use my connections at work to have a probation violation warrant issued for his arrest. I went and told his probation officer's supervisor about every violation that I knew of. I found out where he was going to be dropped off and when on the day said warrant was released. I stayed on the phone with the officers as they found and followed him, and arrested him. How my brother said he would kill himself in jail and my guilt related to that. What kind of person orchestrates her own brother's arrest? Me, apparently, when I see no other way to try to save him from himself. But if something happens to him behind those bars, I will never be able to forgive myself. Because although I am not the REASON he is in jail, I put him there.

I could write about my worst fear in the world right now...that at sixteen months, my baby girl has stopped using all of her words. How every word with the exception of "Dada" has seemingly disappeared from her little mind. That it has been nearly a month since I have heard her sweet, tiny baby voice say "Mama", "baby", "apple", "hi", "hey", "bye", "puppy", "egg", or "fish". That she no longer points at pictures in books, asking to hear the words for everything by saying "This? This?" How I am completely terrified of that horrible, ugly A-word...autism. That my husband is sick with worry over it because it runs in his family. "If she has it," he says, "it would be all my fault." And that it is taking what seems like a million years to have her evaluated or seen by her pedi. That I truly don't know if I could handle that diagnosis. I am so afraid to even think of it as a possibility, to type or speak the word. As if doing so will curse her with that condition or make it suddenly real. It tears me into a million little pieces.

I could write about any of those things.

But I end up pushing it all back down inside, rolling my fear and anger and guilt and sadness and worry into a ball in the pit of my stomach, and not using this blog for what it was intended to be - my only outlet for all of these feelings and fears. I tell myself that no one wants to read whiny, negative entries. That if I write the things that I am thinking, that people will think I am some kind of self-pitying, bitchy, crybaby drama queen.

And then I can't think of anything else I have to say, because all of these horrible feelings seem to consume me completely these days.

And no one wants to hear about that, right?

Monday, July 6, 2009

The ways Brooklyn melts my heart

♥ She gives me big hugs at random times, and always just when I need them. When she hugs me, she lays her little head on me and pats me with one hand.

♥ She hugs everything she loves. She hugs our dogs, her baby dolls, her Elmos, her stuffed animals. She leans forward and lays her head on the picture of the crying baby in her Counting Kisses book and gives her a hug. We were in Build-A-Bear forever this weekend because she wanted to hug all of the stuffed animals! She hugs them all the same sweet way she hugs me...laying her head against them and patting them gently.

♥ Some days, she wakes up so happy in the morning. Her smile overtakes her face when I walk into her bedroom. She talks to me in her own language while I get her out of her Tucker sling, and she can't wait for me to pick her up and hold her. I can't wait, either.

♥ She is super snuggly in the mornings. I hold her close while she drinks her morning bottle, but it's just not close enough for her. She will sit up and lean against my chest and hug me until she decides that it's too hard to drink her bottle that way. A couple of minutes later, she will try again.

♥ She dances and bounces and spins and twirls with complete abandon when she hears music. Any kind of music. She loves it so much.

♥ She shares her bink and her bottles with her baby dolls and Elmos. She loves to share her toys and books with anyone. She doesn't care if you do anything with them, she just wants you to have them and hold them for a little while.

♥ She laughs hysterically everytime she sees any type of animal, whether in person, on TV, or in pictures. I have no idea why. But it's hysterically cute and always makes me smile! She has the cutest little voice and laugh.

♥ She loves to help me take care of her now. She helps brush her hair, she takes a turn brushing her teeth, and she helps me rub lotion on her chest and tummy. And she is oh-so-proud of herself when she does these things. She gets excited and claps with us when we praise her for pointing to her belly, head, mouth, feet, and nose. I love that self-confident grin. I hope she is always able to feel proud of herself.

♥ She just is herself. Her adorable, sweet, beautiful little self. She grows and learns more every day and I am in awe of her. I still gaze at her for ages and wonder how I could possibly be so blessed. I love my darling Baby Bear!

So tell me, what is your favorite thing that your baby does that makes your heart melt every time?

Wednesday, June 24, 2009

A girl with a curl



Brooklyn's hair is getting so long! And it's starting to get wavy, just like mama's!!! I love it!

Sunday, June 21, 2009

June Pulmonologist visit

On Wednesday, we went to see Dr. G2, Brooklyn's pulmonologist. The basic stuff first: she weighed in at 19.8 pounds and was 29 inches long. Her respirations were 36, and her oxygenation was 95.

Just like the rest of Brooklyn's doctors, Dr. G2 was very pleased with her recent weight gain, and was happy that she has caught up on her motor development!

Let me explain what has been going on with Brooklyn's laryngomalacia, since I know I haven't blogged about it much lately. She still has a stridor much of the time. Sometimes it is really loud, but sometimes it is just moderate. It is usually at it's loudest when she is walking around and playing and when she is sleeping. She had stopped making that really deep, jaggedy sounding stridor that sounded like she was trying to catch her breath about two months ago, but now it is back. We hear it probably 10 times a day lately. On a positive note, she does have periods of time where her breathing is completely quiet, sometimes even when she is sleeping.

Over the past couple of weeks, Brooklyn has started having some intercostal retractions again. It never lasts for very long - I'm talking less than a minute at a time. Sometimes it's when she is playing and working really hard, but sometimes it's when I am just holding her and she is sitting still. We hadn't seen her have any retractions for months, so I was shocked when she did it when I was holding her before bed the about 2 weeks ago. I asked my mom if she had noticed this at all, since she keeps her during the day. She said that yes, over the last couple of weeks she had probably seen Brooklyn have retractions about 6 or 7 times. I don't understand why this is coming back all of a sudden. We had thought she was completely over that.

When we saw Dr. G2 at the end of March, he had told us that Brooklyn should completely outgrow her laryngomalacia by the time she was 14 months old. Obviously, this has not happened, and she is 15 months old now. Not only has she not outgrown her respiratory problems, in some ways they seem to be worsening.

So, needless to say, I was ready for our appointment with Dr. G2. Throughout the entire office visit, Brooklyn was playing and walking around the exam room. This was a good thing because Dr. G2 was able to hear what her breathing sounds like and how noisy she can get when she is being active. (At our last appointment, Brooklyn was really quiet and wouldn't crawl around so that he could hear her!)

Dr. G2 said that he doesn't know why Brooklyn hasn't outgrown her laryngomalacia. I questioned him about it two different times, and he just didn't have an answer for us. He said that Brooklyn may have to have another bronchoscopy soon so that he can look at her airway again and try to figure out what is going on. He wants me to email him a video of what her stridor sounds like when she is sleeping this week. He said that he will decide whether she needs another bronchoscopy after viewing that.

He increased her Bethanechol dosage by 25%. Dr. G2 always gives us a copy of the report that he sends to her doctors after each appointment, and the report says this is because "this medication may have an anecdotal effect of increasing airway tone and therefore help with some of the malacia symptoms." So we are hoping for a side effect. Weird. He said that he isn't too worried about the intercostal retractions since she is only having them for short periods of time.

So, to sum up: No answers. Possibility of having to put Brooklyn through another surgery. And did I mention no answers? I am so frustrated with being told Brooklyn will outgrow her laryngomalacia at 4 months...6 months...8 months...a year...14 months....and then it doesn't happen. Why not? Dr. G2 didn't speculate on when she would get past it this time. Not the positive visit I had hoped for. Sigh.

Tuesday, June 16, 2009

I ♥ Faces Week #23 - My Sweetie in Sepia



This week's I ♥ Faces challenge is "Sepia Toned." This was a harder challenge than I thought it would be because you truly have to find just the right picture to look right in sepia. I usually shoot in such bright colors that I think it made it even harder for me!

Anyway, I think I found just the right one. Here is Brooklyn in all her sepia toned cuteness :)

Please go visit I ♥ Faces to see lots of other great photos in this week's challenge!

15 month pedi visit...or....The Day Brooklyn Hit the Big 2-0!

Friday, Brooklyn went to see Dr. A for her 15 month well visit. This was a great visit for several reasons:

- We have not had to go see Dr. A in 3 WHOLE MONTHS....since Brooklyn's 12 month well visit! Of course, we have had specialist visits since then....but still, this is a record for us by far!

- During these 3 months, Brooklyn has grown a LOT. The nurses were oohing and ahhing over her and saying she didn't even look like the same baby anymore! Dr. A was very impressed with how Brooklyn looked and commented on how she has a little tummy now. So of course, I had to point out her little chubby rolls that have recently appeared on her thighs as well. :) Everyone at Dr. A's office knows us well and really cares about Brooklyn since she has spent so much time there. It was really cool to hear them all compliment her progress!

- And yes, my baby girl weighed in at 20 POUNDS EVEN!!!! And that puts her in the TENTH PERCENTILE for the FIRST TIME EVER!!! She was also 29 1/2 inches tall, which is 25th percentile!!!! That's a lot of capital letters and a lot of exclamation points....but wow....this is so HUGE for us. We have waited SO LONG for Brooklyn just to be on the growth charts. Last month at Dr. R's, she hit 3rd percentile, and now she has already made a jump to the 10th percentile!!! Awesome!!!!

So that's my big news!!!

Other than that...Brooklyn walked around for Dr. A so that he could see the way that she is leading with her left leg. One thing that is odd about this is that Dave had noticed that it is much more noticable when she is carrying around her toys. So I gave her my keys to hold, and sure enough, the left leg leading thing became MUCH more dramatic. Dr. A didn't know why. He said that Brooklyn does still have a slight head tilt, but he doesn't know if the two are related. He said that the way a child walks for the first two or three months doesn't usually mean that they will walk that way permanently. Dr. A examined Brooklyn and said that there is nothing anatomically wrong that is causing her to walk that way (nothing wrong with her hips, her muscle tone in her legs are even, her "butt creases" line up).

He said that we could put Brooklyn in physical therapy twice a week if we wanted....we said that we would do what he told us in that respect, because obviously we don't know if she needs therapy or not...we aren't the experts. Dr. A decided that we will keep an eye on her walking and head tilt for the next few months. He will see her at 18 months and decide whether physical therapy is needed at that time.

As I previously mentioned....Dr. A was thrilled with Brooklyn's weight gain and development. She has caught up with her motor development, where she was lagging way behind six months ago. He said that it was "miraculous" to see her doing so well now! He told us to keep doing exactly what we are doing with her feedings, because it is finally working!

He doesn't know why she hasn't outgrown her laryngomalacia and why her stridor is still so loud at times. We go to Dr. G2, Brooklyn's pulmonologist, tomorrow. Of course, Dr. A just defers to the specialist's areas of expertise and will wait for Dr. G2's next report. He agreed with what Dr. R had said last month...that since Brooklyn is now growing so well, she shouldn't need surgical intervention.

Oh...on a funny note, when Dr. A got up to leave, Brooklyn pushed his chair over to him (it's one of those stools with wheels) and tried to get him to sit back down. Dr A was laughing and complimenting Brooklyn on how smart she is, because most 15 month olds wouldn't know that the stool was a chair and what it was for!

These positive doctor appointments are so, so good for Dave and I. We didn't know what this felt like until a few months ago :) I hope that tomorrow's visit with Dr. G2 will be an encouraging one as well....

Wednesday, June 10, 2009

Walking....

Okay, I have tried about a dozen times to post a video on here to better explain what I am about to tell y'all about, but Blogger just will not cooperate with me.

Brooklyn started taking steps on May 16. Yaaaaaaay Baby Bear! She is getting around so well now and we are so proud of her!

I do have a concern though...and that was going to be the reason for the video (other than showing off what my baby girl can do!). Within a couple of days after Brooklyn started walking, we could see that she was leading with her left leg. Like, a lot. It's like she takes a step with her left leg, then pulls the right leg after it. Not like a limp, because she does actually take a step with the right leg (she doesn't drag it), just like maybe one leg is a lot stronger than the other or something??? She definitely favors that left leg.

The reason this kind of freaks me out is because Brooklyn has had a head tilt for about seven or eight months or so. We knew her head was somewhat flattened because of her having to sleep in her car seat and not tolerating tummy time. The flattening was more so on the left side, so once we became aware of it, we had to roll up a blanket at night and put it under one side of her car seat head rest to encourage her to turn her head the other way. We were also supposed to do some physical therapy exercises with her to help it, but she screamed such bloody murder every time that I just couldn't do it anymore. When she started sitting, she would lean her head to the left much of the time. After she began crawling, it was pointed out to me that she always angled and tilted her head to the left.

I really don't think the leading with the left leg is as dramatic now as it was during her first week or two of walking. So maybe it will correct itself. I don't know. Brooklyn does have a pedicatrician's appointment this Friday, and she sees her pulmonologist next Wednesday. So I will definitely be bringing it up. But in the meantime, I am worrying!!!

Can anyone tell me whether this sounds like something I should be worried about??? Or has anyone had a similar experience???

Tuesday, June 2, 2009

I ♥ Faces Week #21 - Lucy Belle, the Fabulous Pug


Okay, so today I am entering my first I Heart Faces challenge! I'm trying to gain a little more confidence with my photography :). This pic is for the "Anything Goes" pet category. Please go check out the I Heart Faces photography blog - I love it!!! They have great photo challenges every week!

The story behind this picture is that 2 weeks ago Dave and Brooklyn went to the zoo and I was left at home by myself for the first time since Brooklyn was born. I got BORED. So out comes the camera. And one of Brooklyn's tutus. Poor Lucy ;) She's such a good sport.

Tuesday, May 26, 2009

Mmmmm, delicious.

video

This is too cute not to share. For the past couple of weeks, when Brooklyn sees pictures of food when we are reading her books, she tries to pick the food up off the page and eat it. It's hilarious!!! Now, is that a smart baby or what???

PS - Please try to ignore my glaringly pasty pale legs. Sorry about that. I sincerely hope nobody goes blind.

PPS - I promise a real post next time because I need to ask y'all whether I am fretting over nothing concerning Brooklyn's motor development. But right now, I need sleep!

Wednesday, May 20, 2009

ON THE CHARTS, baby!!!

We went to Dallas yesterday so that Brooklyn could see Dr. R, her gastroenterologist. My mom went with Brooklyn and I because Dave has started a new job and couldn't take time off yet. We had a really good appointment with Dr. R. Brooklyn had gained almost two pounds in eight weeks and weighed in at 18 pounds, 10 ounces! She had also grown an inch longer. The highlight of our day was finding out that SHE HAS HIT THE THIRD PERCENTILE CURVE ON THE GROWTH CHART!!! This is such a big deal for us! Brooklyn is on the charts!!!

Dave and I actually had predicted that she would weigh a little more than she actually did. She is looking so, so good lately. Over the past month, her little thighs have gotten chubby, she even has a little roll of pudge on each leg. I can no longer touch my thumb and index finger around the biggest part of her thigh. She has little fat creases on her wrists. I don't think that she will be wearing these size 3-6 month clothes very much longer! I am loving watching her gain weight. She is still considered tiny for her age...but this is amazing to me. I am constantly showing our friends her newly developed chubby thighs...my baby has never looked like this before! It's a thrill for me. It's a visual sign that her health is slowly improving and that things are gradually getting better for us. A reward for everything we have been through and how far we have come.

Dr. R was very pleased with Brooklyn's weight gain. He showed me some of Brooklyn's growth stats that I had never seen before. I knew that her weight was considered "not on the charts." I have seen her "own curve" plotted on the growth charts many, many times, several rows below the curves. But I did not know that in January of this year, she was considered to be in the 0.52 growth percentile. That is ridiculously small...I had no idea exactly how far below the curves she had been. In March, Brooklyn was in the 1.77 percentile. And yesterday, the 3.86 percentile. I wonder what the numbers were last year....he didn't show us that. I am sure they were even lower. But wow. The progress she is making. Dr. R said that he is much less concerned that Brooklyn will need surgical intervention now because she is growing well. (sign of relief!)

Dr. R is not changing up any of Brooklyn's reflux medications right now. She is still spitting up a lot. She alternates between swallowing it back down and actually spitting it up. He said that most children with severe reflux outgrow it between a year and 18 months. However, it is unlikely that Brooklyn will outgrow hers within the next few months because of her laryngomalacia and stridor. He said that the laryngomalacia is further aggravating the valve that causes her reflux. Dr. R also said that if Brooklyn has not outgrown the reflux by the time she is two, it is a sign that she will probably continue to require medication for at least several more years.

The only change that Dr. R made was to take Brooklyn off of her milk of magnesia. She also has to take Miralax now and we are to give her a teaspoon twice per day instead of once per day now. She has been having problems with constipation since late December. The combination of Miralax and milk of magnesia has been the only thing that has worked for her. If she does not get BOTH of them each day, she cannot go. But Dr. R was concerned about having to continually increase the dosage on the milk of magnesia. So I am hoping that this change doesn't get her back off track again.

Anyway. It was a really good, really encouraging appointment. Dr. R told us to keep up the good work again. Dr. R wants me to call him after we see Dr. G2 (pulmonologist) next month. He may increase one of her meds (Bethanechol) at that time. But we don't have to go back for THREE months!

Sunday, May 17, 2009

Happy Blogoversary to me!

During the past year, we have come so far. We've grown from this:


To this:


Thanks, bloggy friends, for being there for us to lean on.


♥,

Amanda and Brooklyn

Monday, May 11, 2009

My disappointing Mother's Day

Today it is dreary and drizzly outside, and it just seems appropriate. I am just having one of those days.

Mother's Day was really disappointing for me. My husband is usually so great about making me feel special and planning sweet little surprises on important days. But yesterday, he said nothing about Mother's Day. We had been up for a couple of hours when I finally asked him if he knew what day it was. "Yeah, it's Mama's Day," he replied. And that was that.

I didn't need him to make a big huge deal out of the day or anything. I didn't need him to buy me an expensive present or plan anything elaborate. I just needed him to acknowledge the day. To give me a card from my daughter or something like that, since she isn't old enough to do so herself. Just to tell me that he knows how hard I am working to be a great mommy to our sweet baby girl. Just....something.

Instead, I pretty much ended up feeling like I must be doing such a shitty job as a mom that I wasn't worthy of a Mother's Day sentiment. If it wasn't for my daily dose of the emotion-stifling Lexapro, I think I would have been doing a lot of crying yesterday. Last night, while my husband slept soundly beside me, I laid in bed staring at the ceiling fan and feeling increasingly worse about myself and my (lack of?) motherly abilities. Today, I feel like I have a hangover from the sadness and disappointment of yesterday. And the weather seems to understand.

Thursday, May 7, 2009

Prayers for a friend

I just wanted to ask everyone one to keep Ava and her sweet mommy Hope in your thoughts and prayers. Ava has been inpatient at Cincinnati Children's Hospital all week having all kinds of tests and procedures so that her doctors can figure out exactly what is wrong and how to treat her. So far, the tests have revealed a few "new" problems for little Ava. She is also having a hard time with the anesthesia that they keep having to give her and is having issues with her heart rate and seizures because of it.

Hope found my blog not long after I began writing it. Little Ava has laryngomalacia, as we came to find out that Brooklyn has as well (Hope has called Ava and Brooklyn "malacia buddies." Cute!). She has been a great source of support for me and I am so thankful for her friendship. She is one of the only people that I have felt like completely understands everything we have been through with Brooklyn. I don't know anyone in real life who has been through what we have been through. Hope, you have been so wonderful. I wish I could be there with you this week.

Please pray with me that the doctors will be able to figure out exactly what Ava's medical needs are. Pray that she will stop having reactions to the anesthesia and that these procedures won't cause her any pain or discomfort. Pray for peace and strength for Hope because it is so ridiculously stressful to have a baby in the hospital, especially when you don't know what is wrong. Brooklyn has had a lot of these same tests and procedures and I know that it is so hard to watch your little baby be put through all of this. Also, please pray for wisdom for Ava's doctors - that they will be able to discern what Ava needs and take care of her in the best way possible.

And I'm sure Hope wouldn't mind if you stopped by her blog and let her know that you are thinking of her and Ava!

Monday, May 4, 2009

Swine fear

It may seem out of character for one who worries as much as I do in general, but I truly do not typically freak out over health scares that are hyped up by the media. Bird flu, West Nile virus, etc....those illnesses didn't scare me.

But this swine flu/H1N1 threat is a different story. I didn't think much of it the first couple of days that the news mentioned it. Wednesday night, I got a little stressed over it because the first 6 or 7 minutes of the news was dedicated to nothing but swine flu coverage. Then, Thursday morning, when I was driving to work, a nationally syndicated radio show read this email, written by a Texas doctor, on the air. And I began panicking. OMG, my baby. What if she gets it? There are people who have contracted this virus clinging to life on respirators? Brooklyn already has an airway defect. What would happen to her if she became ill with it since she already has respiratory problems?

Then I heard reports that it is usually the 2nd or 3rd person in a household who contracts the virus who is at the greatest risk. Okay, so that means that if my husband and I bring it home from work and Brooklyn gets sick after us, she would be in the worst shape. Then reports that the 23-month-old in Houston who died from it had "an underlying medical condition." Well, great, so does my baby!!! This is something like my extreme fear of RSV over the winter months, but amplified. We managed to escape RSV, with the help of Brooklyn's Synagis shots, and now there is this. And they are saying things like the virus is contagious for 2 days before the patient shows any symptoms and that the germs live for 6+ hours on all surfaces. OMG.

On Thurday and Friday, cases of swine flu started popping up locally. A couple of schools in the area closed down for the next 10 days. All UIL sports games and academic meets were cancelled for 2 weeks statewide. As of today, there are 300,000 Texas students home from school because their schools have been closed because of either confirmed or "highly suspected" cases of swine flu.

Since I had heard that supplies of Tamiflu and Relenza might run out soon, I decided to try to get a prescription for Brooklyn so that we would have it filled, just in case. Brooklyn's pediatrician has been so good to us, and has been so considerate of her special medical needs, so I was sure he would call a prescription in for her.

Nope. I got a call back from Dr. A's nurse saying that they were not prescribing Tamiflu for anyone as a prophylaxis. If Brooklyn shows signs of the flu, she will have to be seen by Dr. A, they will do a test for H1N1, and then prescribe Tamiflu if necessary. I thought that I had gotten this answer because Dr. A's nurse hadn't actually talked to Dr. A and said that it was for Brooklyn because of her laryngomalacia and how bad respiratory illnesses could be for her. But it's so ridiculously hard to call a doctor's office and actually talk to a doctor, I didn't know when/if I might be able to talk to Dr. A himself. I then called Dr. G2, Brooklyn's pulmonologist, and Dr. R, her gastroenterologist, with the same request. I got voice mails from nurses at both doctor's office that were nearly identical to the message Dr. A's nurse had left me earlier. I mean practically verbatim.

So now I am convinced that the CDC or some other government agency is not allowing doctors to prescribe Tamiflu or Relenza without a documented diagnosis of H1N1. I know that they are trying to keep close track of every case of H1N1 so that they can monitor the virulence and how quickly it is spreading. I understand that they don't want to run out of the drugs because too many people wanted it "just in case," but can't you make an exception for babies and children who have the potential to suffer the most from the virus? I don't care if I get a prescription for myself or for Dave. I just want one for my little Brooklyn. I am truly terrified that she will catch this, and so scared of what it could do to her.

Friday, April 24, 2009

The ties that bind us

The Monday night dinner with my parents and little brother was....okay, I guess. Nothing big happened. Nothing terrible.

It's just discouraging, this path that he is headed down. Again.

He is 20 years old and has no plans and no goals for himself. Well, I take that back. He wants my parents to give him his college fund money (from our grandparents) while he is here. He is telling them he wants to go to a technical school in Georgia, but says he doesn't know what for. We know his track record. It is obvious he does not want the money for school. He has no job, no place to live, a girlfriend (yeah, they're back together now) with no job, and a drug and alcohol habit. He and the girlfriend have already had a pregnancy scare in their one month of being together. She has a 16-month-old child that is living with a relative in another state because she couldn't care for him. She is married. She says she's getting divorced, but who knows. My brother talked about fights they have been having - ridiculous, possessive, jealousy-fueled fights that people who have been in a relationship for a month should never have.

My brother told Dave that he couldn't pass a drug test to get a job test now (we knew that). But then he said that he has no interest in staying clean. That he doesn't see any reason to not use drugs. (Really? Are you serious? No reason at all? Not the fact that you have wrecked your life several times over with drug use? You've been to rehab. You've been arrested. Been on probation. Been kicked out multiple times. Totalled multiple cars. Discharged from the Army. Attempted suicide. Hurt your family so badly. Lost friends. You said you knew the drugs were the reason why. You said you were going to get your life straight this time.)

It's so hard to have hope for someone in this situation. I love him so much, I want all of these wonderful things for him, yet he wants nothing positive for himself.

Brooklyn remembers him. It had been four months since she'd seen him, and she reached for him the second she laid eyes on him.

Dave said he doesn't want my brother in and out of Brooklyn's life while he is living his life this way. "I don't want him coming around Brooklyn, around us, until he's clean. He's had chances. This is it," Dave said. He doesn't want our daughter exposed to the hurt that comes with loving someone who is an addict. I understand, but I don't want to take her from him. I know he loves her. No, I do not want him around us when he is high. But I also cannot bring myself to tell my husband that I will agree to this. I already have one brother who we have no contact with because he is a lying, manipulating, violent, hurtful drug addict. My baby brother is basically the only sibling I have now.

I don't want to lose him. But I'm afraid he may be lost no matter what I do. He is heading back down a dangerous road. If something were to happen, I couldn't deal with the guilt...(Could I have done more? I should have been there for him. Why didn't we let him come over? Why didn't we reach out? We shouldn't have bowed out of his life. He needed us and we weren't there....)

It's morbid, but these are the things I think about. The "what-ifs." Especially now that I know he has the capacity (and will?) to try to take his own life.

I don't want to be an only child.

Monday, April 20, 2009

That uneasy feeling

My baby brother is back in town.

He was discharged from the Army at the end of March. Since then, he has been living with a girlfriend that he met when she and her mother were witnesses to the wreck he had when he was trying to kill himself (what a lovely story). He told my mother that he was not going to come back to Texas; he was going to stay in Georgia because the people here are bad influences on him and he needed to make positive changes in his life.

Fast-forward a couple of weeks. On Friday, the girlfriend broke up with him, so he could no longer freeload live with her and her parents. On Saturday, he was back here. On Sunday, he was already hanging out with our other brother and their mutual drug buddies. My father overheard him talking on the phone telling friends that he couldn't wait to get high with them. He takes no responsibility for the things that have happened over the past few months. He has no plans for himself. He is obviously using again. And so the downward spiral continues.

Dave, Brooklyn, and I are supposed to go to my parent's house for dinner tonight. This will be the first time that I have seen or talked to my baby brother since the drug relapse, the suicide attempts and his subsequent Army discharge. We have texted a few times, but I haven't been able to actually pick up the phone and call him. I can't seem to summon up the courage or find the right words. So I just pray. And worry.

I don't feel ready to see him. I don't really know what to say to him anymore. I just have this sick, heavy feeling hanging over me, the kind that stays with you when you are watching someone you love self-destruct. I know that feeling well now.
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