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.

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.

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.

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.....

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.

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?

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.

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....

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???

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!

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.

Great news!

This post is nearly a week overdue. I have been seriously neglecting my blog for the past week and a half; in fact, I even forgot that I had this awesome new layout! I don't have any good reason why I haven't been writing. I have been reading and commenting, just not doing anything here! I have been trying to post a blog full of pics from Brooklyn's birthday party (yes, it was nearly 3 weeks ago, I know!), but Blogger hasn't been cooperating. Maybe some of y'all who do picture-heavy posts can give me some pointers? It is failing to upload my pics altogether. Maybe I need to resize the files.

Anyway!

We took Brooklyn for her one year appointment with Dr. G2, the pulmonologist, last Friday. He said that he was IMPRESSED with Brooklyn's progress. He actually said IMPRESSED! He was happy with the way she is catching up on her motor milestones and that she is growing.

Brooklyn's breathing was very uncharacteristically quiet throughout our visit with Dr. G2. I told him that it was quite deceiving because she certainly doesn't sound that good all of the time! She does have some periods where she breathes without a stridor, but not normally for that long. I told him how loud she gets when she plays and crawls around now, and told him about the new noise she has been making - that long, jaggedy, drawn-out stridor. He said that that noise is probably because her body is growing and she is requiring more air to be active. Her airway is apprently folding down or collapsing on itself more as she takes these big breaths to move her body around so much. He said that her body should continue to grow inside as well, and allow her airway to catch up with her. At the same time, the cartilage on her larynx should be starting to harden so that it won't be floppy anymore. We tried to get Brooklyn to play around in the office so that Dr. G2 could hear how loud she gets. We got toys out of her bag and placed them on the other side of the room. Dr. G2 put his keys in the corner of the room as well. We placed Brooklyn on the ground, but she was not at all interested in crawling around. She just sat there looking at the three of us, then held her arms up to me so that I would pick her up. It was much like taking your car to the shop and it won't make "that noise" for the mechanic. Dr. G2 said that we could take a video of her playing and breathing loudly at home and send it to him so that he could see and hear what we were talking about.

Brooklyn weighed 16 lbs, 7 ounces. This is exactly what she weighed 2 1/2 weeks prior, at her one year well visit. But she is super active right now...I mean, the girl is constantly on the move and into everything! So I can understand why it would be even harder for her to gain weight now. Dr. G2 said basically the same thing as Brooklyn's pediatrician...yes, she is still below 3rd percentile in growth, but for her, it is progress and it is okay.

The great news is that Brooklyn does NOT need surgery on her airway! Dr. G2 said that she should outgrow her laryngomalacia by 14 months. We will see him again when she is 15 months old to see whether that has happened. He did not tell us what the plan of action will be if she has not outgrown everything by that time. So we are hoping that he is right....but then again, we were told that Brooklyn would outgrow her laryngomalacia by 4 months...then 6 months...8 months....a year. Obviously it hasn't happened yet.

But I am trying to stay positive and hope for the best. It's easier to do now that we are hearing positive words from all of Brooklyn's doctors. Like what Dr. G2 said last week - that when he first saw Brooklyn, he was very worried about her and had her worked in to see Dr. M, the ear/nose/throat doctor that same day. He said that he didn't do that because we were from out of town, it was because he was quite concerned about Brooklyn. He feels like she is making great improvements and even said that if she has outgrown the laryngomalacia in June, he will release her from his care! I wonder what that will feel like!

We had a similarly good appointment with Dr. R, Brooklyn's gastroenterologist, last Tuesday. He is keeping all of her medications the same and instructed us to continue feeding her exactly the way we are now. She gets 2 baby foods a day and usually a little bit of table food. The rest of the time it is still breastmilk or her increased calorie formula. Dr. R said that we will not transition her off of formula until she is at least 15-18 months. Basically, she is gaining some weight now and staying on "her own curve" (that's what all of her doctors call it), so he doesn't want to mess with what works. Brooklyn is continuing to spit up a lot, but now swallows it most of the time. I was worried about that - but Dr. R said that there really isn't much we can do about it. Her reflux medications will keep the spitup from damaging her esophagus when she swallows it back down. Apparently that is the main concern. We see Dr. R again in 8 weeks.

Baby Bear is my tough little fighter! It makes me so proud of her to see her progressing and surprising her doctors. And the no surgery thing....what a weight lifted off our shoulders. I'm telling you, this baby girl is amazing.

One year well visit

Here are Brooklyn's stats for her one year check up:

Weight - 16 pounds, 7.5 ounces (below 3rd percentile)
Length - 27 inches (below 3rd percentile)

However, Dr. A said that he is no longer worried about Brooklyn's growth the way he was last year. He said that she is staying on her own curve, and is gaining weight. So for her, this is okay. This is progress. He wanted to call it 3rd percentile, just to reassure me that Brooklyn is okay, I think, even though she is still about 2 squares below 3rd percentile on the chart. But Dr. A says we are moving in the right direction and that it is good.

Dr. A was VERY happy that Brooklyn is crawling, pulling up, and cruising. He said that about 15-20% of kids with no medical issues aren't doing all of that at her age. He said that at our last visit, he was concerned that Brooklyn might need physical therapy soon because she was lagging pretty far behind in her motor development. But now he is very happy with where she is at. Yay Baby Bear!

He looked in her mouth and said that ALL of her top teeth are about to pop through. I don't know whether this means 4 or 6 teeth....but she is definitely drooly and cranky and chewing on everything! She only has her 2 bottom teeth right now, so that will be a big change! She has a slight "head tilt" - where she always leans her head to one side a bit. This may be due to the head flattening from having to sleep in her car seat for so many months. Dr. A doesn't think it is much of anything to worry about right now, and will reevaluate it in 3 months. She may need some physical therapy to correct it if it doesn't fix itself soon. But no big deal.

We will be slowly adding more table foods as Brooklyn gets more teeth and as she can handle them without choking. She still only gets 1 or 2 baby foods a day and very little table foods. Dr. A is okay with that. We are progressing as she can handle it. She gets more calories from her milk anyway, and that is important for her. Once she can get 2-3 servings of fruits and veggies, 1 meat, and some carbs each day, we can replace her formula with whole milk. She is still breastfeeding about half of the time, and I haven't decided when I will try to wean her or if I will just let her continue until she weans herself. All of those teeth that are about to come in may help me make that decision. Eeek!

Now that we are seeing specialists, Dr. A doesn't really have much to do with or say a lot about the laryngomalacia or the reflux. He basically just defers to Dr. R (the gastroenterologist) and Dr. G2 (the pulmonologist). So he didn't say much of anything about those matters, except to make sure all of Brooklyn's meds were the same (yes), ask when our next appointments were (next week), and ask whether we knew if Brooklyn was going to have to have surgery (we don't know yet.)

Brooklyn had to get 3 shots. Poor Baby Bear. She was already tired and this made her very unhappy. She will have her *LAST* Synagis shot this Friday. I know she will be glad to be done with that. But the shots have served her well....we have stayed clear of RSV this year, thank God!!!

Dr A. said,"This is the first visit where I can say Brooklyn is doing well. I feel comfortable saying that for the first time. I'm very pleased. No 'but's' about it this time. Once she can get her malacia and reflux issues behind her, she'll be great. I want you to walk out of here feeling really good about this visit."

We took his advice! :)

Rest your little head.....

To sum up Brooklyn's sleeping situation, she has had to sleep in her car seat in our room since she was a couple of weeks old on the advice of her doctors. First it was because she had terrible reflux and they wanted to keep her elevated. Then when her breathing problems began, her pulmonologist told us we were to continue because her trachea would collapse down/obstruct if we allowed her to lie flat on her back to sleep. Anyway, the more she has grown, I believe she has become increasingly uncomfortable in her car seat....she can't really move around or stretch like older babies need to do. Another concern was that her car seat was flattening the back of her head. Her pulmonologist told us in December to get a Tucker sling through her gastroenterologist. A Tucker sling would allow her to sleep in her never-used crib and let her stretch and move a little more, so that hopefully she would be more comfortable. About a month ago, Hope sent me the Tucker sling that Ava had outgrown so that we wouldn't have to buy one. Then we saw her gastroenterologist and he wanted us to get the wedge for the Tucker sling. So, several weeks of phone tag with nurses and home health agencies and calls to my insurance company followed. This week we got the wedge.

Tonight, we decided to try it out for the first time. Brooklyn was really, really tired, but was freaked out by being put in the sling for the first time. We calmed her down and then moved her and the wedge to her crib. That did not go over well with her.

I understand completely. She has never, ever spent a night alone in her room. She is always right by Mommy and Daddy's bed, and sometimes even on the bed in the car seat, on the nights that my husband works overnight.

I tried my best to calm her down, and it would work until I moved the slightest bit away from her. Then she would get so upset all over again, crying her little eyes out. Which hurts a lot, because I don't want to do that to her. I guess my husband saw that I was getting emotional about it, so he told me to go take my shower and he would take care of her. I took an extra long shower...trying to get rid of the stress, I guess.

Thirty minutes passed and I returned to Brooklyn's room. She was sobbing. Sad, pitiful cries. "Nothing works," said my husband. "I can't get her to calm down. She's just angry." "She's not angry," I told him. "She's scared. She's never done this before." He left the room.

That is the thing that I really hate about the whole situation: my sweet baby is scared. She's afraid of being in her room by herself, she's afraid of being alone, she's scared of sleeping somewhere different. I don't want my Baby Bear to be scared. I don't want her to know fear. I can't stand to think of her feeling that way. The idea of it just breaks my heart into a thousand pieces. And the thought that I am causing the fear...well, that's a million times worse.

I leaned over her crib and put my head against her sweaty little forehead. I wiped the tears off of her sweet, soft cheeks. She clutched the fingers on one of my hands, and I stroked her hair with my other hand. Brooklyn settled down, her stridor loud from all the crying. She drew in big, jagged gasps of air, trying to breathe normally again. At first, I tried to soothe her by just telling her that she was okay....Mommy is here....it's all right, sweet girl....I'm not leaving you.

Then I decided to tell her why she would be okay.

It's all right, sweet bear. I know it's scary, and I'm sorry. But you're such a big girl, and you're doing so good. It's hard to be a big girl, isn't it? But look at you in your big girl bed. I'm so proud of you. This is gonna make you sleep better, okay?

You're such a brave girl. I wish I was brave like you. All of the times you've had to go to the hospital and to all those doctors....all of those tests you've had to have...you've been so strong. I would have been so scared. I was so scared. But you're such a big strong girl. Did you know that? You are. I'm so proud of you, Baby Bear. I love you so much. You're my sweet baby girl. You're gonna be okay. I won't leave you. I'll be right in my room. I'll be right here when you need me. You're doing so good. You're so brave, Baby Bear.

Then I was wiping my own tears off her plush little cheeks.

I slowly moved my forehead away from hers. I gently lifted my hand off of her head, and finally set her hand down next to her side. She relaxed and released my fingers.
I crept out of her room.

And now she sleeps.

My husband smiled and excitedly pointed at the baby monitor, listening to the rhythmic sound of Brooklyn's stridor when she is asleep. "What did you do? She is out."

"We just talked a little."

I sat down on the couch and exhaled deeply. I felt relieved and somewhat accomplished, but still so sad.

Now we will see whether I can sleep with her in another room. The monitor will lie right by my pillow. I have so much anxiety about her breathing. In my mind, I have more control over it if I am right there beside my baby.

This motherhood thing. It is not for the faint of heart, is it?

A weighty problem

At Brooklyn's gastroenterologist appointment on January 20, she weighed 14 pounds, 15.7 ounces. This was up only 12 ounces from her appointment on December 2. So...7 weeks and only 12 ounces gained. You know that 3rd percentile line on the growth charts? The one that we had fought so hard to get her on? Yeah. She's below it again. Back to being off the charts.

I don't really understand why this is, she seems to eat well. We can only give her baby food once per day because baby food has less calories per ounce than formula or breastmilk. We are still increasing the calories in her formula to 30 per ounce instead of 20. We add extra formula powder to her bottles for the calories, plus 1 1/2 teaspoons of rice cereal per ounce to thicken it to a "nectar" consistency.

Now, I will say that the more active she has gotten, the worse her reflux has become. With rolling over, sitting, bouncing, standing, and now crawling, it has just gotten worse and worse. She spits up constantly while she's playing, so much so that I usually have multiple burp cloths around at play time and usually let her just play in her sleepers instead of nice clothes. And I always have to change her clothes afterwards, they are just soaked. We are talking usually 10+ big spit-ups every time she is on the floor for playtime, regardless of whether she ate 30 minutes before or 3 hours before. I wonder how much of the failure to gain weight is related to the volume of food she is spitting up.

I know that some parents have told me that their babies' cases of reflux improved once they could sit upright, that they were able to keep things down once they could sit themselves up. That seems logical, yet we are experincing the opposite. I don't know if moving around could be putting that much extra pressure on her stomach and causing the spitting up. That doesn't seem right, especially at 10 1/2 months. She ought to be outgrowing this by now, right??? Her stridor tends to get a lot louder when she is excited and playing. I know this is normal with laryngomalacia. It has always been the case with her. But could the spitting up be related to that as well???

As usual, I have so many questions and no answers. It's hard because I feel like a good mom wouldn't keep having all of these problems, I should just know how to fix it all for my little Baby Bear. I worry about what the doctors think of a mother who has a child with "failure to thrive" and "feeding problems" and can't seem to make any progress in making it better.

Fingers crossed....

I called Brooklyn's pediatrician on Wednesday and talked to the nurse. At first she told me to bring Brooklyn in, but then changed her mind and said that she didn't think that Brooklyn needed to be seen yet. She told me to watch for fever and wheezing, and if either of those things started, then Brooklyn would need to be seen. As far as the fever goes, it hasn't gone above 99.5. She is coughing, sneezing, has a runny nose and watery eyes. She is pretty cranky. Would someone please tell me how I am supposed to know if my baby is wheezing since she is already a noisy breather due to her laryngomalacia? Sigh.

She doesn't seem to be getting any sicker, so hopefully she will get over it this weekend. I am scared that it will worsen over the weekend. I probably should have just insisted that the pediatrician see her, just for peace of mind about the RSV situation if nothing else.

Anyway. My fingers and toes are crossed that it just goes away.

Baby Bear is 10 months old now. How incredible is that? Double digits, baby girl!

Oh, and on another note, I get to go have my hair done tomorrow. My mom is coming so that she can hold Baby Bear while I am getting my haircut. It's been 6 months since I even got it trimmed. I miss having time to do things like that to take care of myself. I'm not a high maintenance girl by any means, but I appreciate the little things that just make me feel a little bit better about myself, like painting my nails, or trying out a new hairstyle, or putting on more makeup than just powder and lipstick (the bare minimum....so that I don't scare people.) Those things that I can never find time for anymore. You know? I'm not sure what kind of cut I am going to get, but I need a change. Maybe something that won't make my face look so fat? Something that will minimize my 18 chins? I can hope for it.

Paranoid mama?

Brooklyn was coughing all morning. And it didn't sound like the normal, harmless cough she usually has when she coughs. It sounded all rattly, like she's trying to cough up something. And she was doing it a lot. I ctalked to my mom a little while ago and my mom said she is still coughing.

I am freaking out over here. I am so terrified of RSV. Please please please PLEASE don't get RSV, Baby Bear.

So if I call the pediatrician, and tell them that Brooklyn has a bad cough but nothing else seems to be wrong so far, is that stupid? Can they even do anything? Will they see her? Or am I just being the high-strung-always-worried-petrified-of-RSV-paranoid mommy?

I am happy to report...

That Brooklyn is not going to have surgery right now! At Brooklyn's appointment with her pulmonologist on Friday, Dr. G2 said that he feels that she is starting to improve. So he is going to give her until her first birthday (3 more months) to try to outgrow her laryngomalacia. He will reevaluate and decide what needs to happen then.

Dr. G2 always gives us a copy of his report when he sees Brooklyn so that we can see exactly what he is documenting and sending to her pediatrician and gastroenterologist. His report said that there is "slight improvement" with her noisy breathing and that she is "slowly starting to improve." Slight and slow is better than what we have had in the past. I'll take it!

Brooklyn weighed in at 14 pounds, 4.5 ounces and she was nearly 26.5 inches long! So she only gained about an ounce since her appointment last Tuesday, but she grew an inch! I knew she was growing longer because she has outgrown all of her 0-3 month footy sleepers and a couple of the 3-6 month ones too. Her respirations were 40 and her oxygenation was good, in the high 90's.

Dr. G2 was concerned about Brooklyn's head flattening and the fact that it is somewhat assymetrical. I thought that it was getting better because she is sitting so much now, but maybe I have just gotten used to it. He wants us to try letting her sleep in her crib instead of in her car seat. He talked about trying to let her sleep on her tummy or side, so that her epiglottis would flop forward and let her breathe easier than if she were on her back. She should obstruct less this way, he said. Doing this makes me extremely paranoid because of the SIDS risk. She may not tolerate it anyway because she has always hated tummy time. We are also to call her gastroenterologist and ask them what we need to do to get a Tucker sling for her to sleep in. At first, Dr. G2 said that we needed to stick books or something under one end of the mattress to angle it for her because of her reflux and airway obstruction, but I asked him about the Tucker sling and he said that was actually a better idea. (Thanks, Hope! I never would have known to ask if you hadn't told me about it.) I will work on that on Monday. Oh - he mentioned the possibility of doing another sleep study. I sincerely hope we can avoid going through that nightmare again. We'll see.

Anyway, Brooklyn's appointment went well. No surgery right now and hopefully none at all!!!

Decision day

Brooklyn will see her pulmonologist, Dr. G2, in Dallas this morning. He is supposed to give us the verdict on whether or not Brooklyn will have to have surgery on her airway. There are times when I think that she is getting a little better...a few more brief periods throughout the day that I don't hear her stridor. Then there are days when it is nonstop and as loud as ever, especially when she is asleep, like right now. So when asked the question, "Has she improved?", our answer will probably be something like, "Well...I don't know...sort of...sometimes...but not really...maybe a little...maybe not."

I am still very conflicted about Baby Bear having the surgery. I know I have touched on this before, but I am just so sick of putting her through all of these procedures. She has already gone through so much. Surgery terrifies me...I hated it last time. It was so scary to know that my baby was under anesthesia with breathing tubes down her throat...and there are always risks. Especially with someone who is so tiny. And from what I have read and been told, this particular surgical procedure could make her breathing problems worse. Some pulmonologists won't even perform it. But if it really is something that could fix all of her problems and make her life easier, am I a terrible mother for hesitating to do it? Brooklyn deserves to be free of all this. She deserves to be able to breathe without working so hard. She should be able to grow big and strong and be the size of other babies her age. If this surgery would allow her to do all of those things and make her healthy, what kind of mommy wouldn't do it?

Maybe we won't have to make those choices. Maybe Dr. G2 will tell us that since Brooklyn is on the growth charts now, we can keep waiting to see if she will outgrow it on her own?

We will find out in about 10 hours.

December doctor visit No. 1

Brooklyn went to see Dr. R, her gastroenterologist today. Can I just start off by bragging? My baby girl weighed in at 14 pounds, 3 ounces!!! And she was 25 inches long! Dr. R said he was very happy because she is now "on the curve" - meaning that she is actually on a curve on the growth chart now...3rd percentile...but still on a curve! She is between 3rd and 5th percentiles for length. Go baby bear!

The visit with Dr. R was fairly uneventful. He increased her Bethanecol because her reflux is still really bad and she spits up a lot, especially at night. One problem we have been having is that she sometimes spits up about 5 or 10 minutes after we give her all of her medicines, and you can tell that she has spit up the meds, not milk. So then I worry that she isn't getting the benefit of any of her medications. She also spits up a lot even when it has been 2 or 3 hours since a feeding. Dr. R hopes that upping her dosage on the Bethanecol will help with these problems.

He also said that we can start giving her baby food every day now. I was feeding it to her about two or three times per week because her pediatrician didn't want it to take away from the increased calories she gets from her special formula mix (we have to mix rice cereal and extra formula powder into her bottles to make it 30 calories per ounce instead of 20...this helps with her weight gain problems and also keeps her from choking while eating). Dr. R said that since she is gaining now, I can give her baby food once a day and continue with the same regimen with the formula. She is about 50% breastfed and 50% formula fed now. He also said that she may spit up less as she eats more baby food. I'm glad because Brooklyn really loves to eat her baby food! You can tell she is so proud of herself when she gets to sit in her little chair and eat "big girl food!"

The best thing that Dr. R said today was that we are doing a great job and that what we are doing is working, just slowly. He said that he feels confident that Brooklyn will eventually grow out of all of her health problems. Dave told me that he felt like crying with relief after Dr. R said that because we rarely ever hear anything positive at Brooklyn's doctors appointments. It really is comforting to have an expert tell you that you are doing well and that things are finally moving in the right direction.

Brooklyn's next appointment is with Dr. G2, her pulmonologist, next Friday. Supposedly he is going to decide whether Brooklyn needs surgery to correct her laryngomalacia and floppy arytenoids. I am conflicted about this. I would like to avoid surgery if at all possible because I don't want to put her through anything else. But if it would fix everything...then I think I would be okay with doing it...I think. It's scary. I have mixed feelings. I don't know.

I am trying to wait to see what Dr. G2 has to say next week before I worry too much about that. For now, I am trying to let myself enjoy the fact that we heard positive words from one of her doctors today.