Happy Halloween!

Brooklyn was the cutest puppy ever tonight! PUPPY, not cow! About 75% of our neighbors thought that she was wearing a cow costume. One crazy lady thought she was a real dog. (Ummmmm. Okay.) I got her all dressed up and tied pink ribbons on the ears of her costume so that everyone would know she was a girl. We sat outside of our house and handed out candy to all the little ghouls, goblins, and Hannah Montanas. We all had fun. Brooklyn loves anything where she can people-watch! She is worn out from all of the excitement now and is sleeping on my chest. I think I'm going to take a nap with her in a few. Happy Halloween from both of us!

Brooklyn speaks!!!

Brooklyn said her first word tonight...and her first word was...MAMA!!!!!!

I'm soooo happy and sooooo excited! She has been saying it over and over all night! It's so amazing to hear my name come out of my sweet baby girl's mouth. I love her little voice, it's the cutest sound I've ever heard. I am absolutely giddy over this (in case you can't tell)! I have spent a lot of time lately wondering what Brooklyn's first word would be, what it would sound like to hear her talk, and whether she might say "mama." (I've been coaching her to say it!) So now I know what it sounds like and how it feels. And it's fabulous!

A perfect heart

Brooklyn had her cardiologist appointment on Wednesday. The doctor listened to her heart for quite a while, then did an ECHO. Then he told us that the hole in Brooklyn's heart (a ventricular septal defect) had completely closed! He said that she had "a perfect heart" now! And she no longer needs to see the cardiologist! I just wanted to hug him. It is so wonderful to know that something that has caused us a lot of worry is ALL BETTER. I hope the same will happen with her airway issues and her reflux in the near future too.

Brooklyn weighed 12 pounds, 13 ounces on the scale at the cardiologist's office. Not as bad as the 12 pounds, 7 ounces she weighed the day before on the gastroenterologist's scale, but still some weight loss. Sigh.

She got her Synagis shot right after we saw her cardiologist. Her cardiologist is her only specialist that we get to see here in our hometown instead of driving to Dallas. They come to our pediatrician's office once a month to see their patients here, which is nice. Dr. A's nurse gave Brooklyn the Synagis shot, and she did really well. She cried, but stopped as soon as I picked her up. Dr. A is having a flu shot clinic tomorrow and I am supposed to take Brooklyn to get a flu shot then. She has to get the flu shot twice and will get Synagis shots every month throughout RSV season.

We went to visit Beth, our wonderful lactation consultant, after we got done at the doctor's office. It was so good to see her, since it had been about three months. I just love her! She has been such a great source of support since Brooklyn was born. I always feel so relaxed as soon as I walk through her door. Not only did she help me get my newborn baby to eat and gain weight (which I promise you was no small feat), she was my shoulder to cry on for the first few months of Brooklyn's life. She always comforted me, understood me, hugged on me, and told me that everything I was feeling was normal and okay. She called my OB when Brooklyn was about 7 weeks old and got me an appointment to see her because I was so depressed. I felt like I was going to die. I didn't think I could do this anymore. I thought that there was no way I could love my baby enough or be thankful enough for her. I wasn't sleeping because I thought that God was going to punish me by taking Brooklyn from me during the night. I felt like the worst mother in the world and I thought that my baby would be better off without me around. And I couldn't tell anyone but Beth. That's when my OB put me on medication for PPD. Beth was the only person that I could talk to about the whole ordeal. She will always mean so much to me for being there through all of that, and I can never thank her enough!

Anyway, Brooklyn and I hung out with Beth for a couple of hours. Oh, and Brooklyn weighed 12 pounds, 12 ounces on her scale. A mommy with a 12-day-old baby came in and I got to talk to her some. She was crying and was really overwhelmed and exhausted. It made me realize how far Brooklyn and I have come. Yes, I still feel overwhelmed and inadequate and all of that at times...but I don't feel the way that I did when Brooklyn was 12 days old. Overall, things are much better now because I don't constantly feel like there is no way that I can do this parenting thing. It made me kind of proud to realize that Brooklyn and I are both making progress.

To the doctors we go...

Yesterday, we took Brooklyn to the gastroenterologist in Dallas. The visit was fine. Dr. R said that all of Brooklyn's biopsies came back normal. He said that what he was looking for with the biopsies were any abnormal tissues, inflammations, or allergies. So no problems there in her tummy or esophagus. He said that he talked to Dr. G2 after Brooklyn's bronchoscopy and endoscopy Friday and that they wanted to take her off of Reglan and put her on Bethanechol. Dr. R said that it could help with her reflux and also strengthen her airway. He gave us the prescription for it, but we haven't gone to fill it yet. Does anybody know anything about this med? I read tonight that it is an older drug that really isn't used anymore because there are others that are more effective. I also read that it hasn't been studied in babies and children. Hmmmm.

The part of yesterday's appointment that really sucked was that Brooklyn weighed 12 pounds, 7 ounces. I was really worried when the nurse told me that, so she weighed her twice. The nurse and the doctor both did the grams to pounds calculation for me. I just thought there was no way that she could weigh that little. She was 13 pounds, 2 ounces on October 10 at her pre-op appointment. She was 13 pounds even at Dr. A's on October 6. Now I am really scared that she is losing weight again, and that's an awful lot for her to lose. I honestly don't know what she weighed at her procedure on Friday. I've noticed that a lot of these nurses get all confused translating grams to pounds. The nurse that weighed her Friday said that she was 12.8 pounds. When I showed concern, she tapped some more numbers into her calculator and then said, no, she was 13.6. That's quite a difference. I meant to ask one of the doctors about it on Friday but with the stress and worry of all that was going on, I forgot to.

Brooklyn goes today to see her cardiologist and then to see her pediatrician to get her first Synagis injection. I am going to have them both weigh her and I really, really hope that she hasn't lost as much weight as Dr. R's scale showed. I'm also hoping that Brooklyn's cardiologist will tell us that her heart murmur (a ventricular septal defect) has corrected itself. It has been 6 months since we last saw this doctor, and it would be nice if we could have one less specialist for our baby!

My sweet little pumpkin!

More good news today - Brooklyn's pediatrician called and said that Brooklyn's first Synagis (RSV vaccine) shot was in and scheduled an appointment for her to get it. She will get the shot on Wednesday since we will be at her pediatrician's office to see her cardiologist anyway. This means that the insurance company approved Brooklyn for Synagis without any kind of fight, which we certainly didn't expect. Brooklyn's pulmonologist and pediatrician were prepared for the insurance company to try to deny her, but they didn't! Wow!



The three of us went to a pumpkin patch with some friends on Saturday afternoon. The pumpkins were kind of picked over, but we got some cute pics anyway. Yes, of course I'll show you!

PS - Please note that Blogger jacked up my pictures again!!! I did exactly what you said, Sam! Please help!!!

ANSWERS

Brooklyn did fine with the bronchoscopy and endoscopy yesterday. Thanks for all your prayers and good thoughts.

And yes, we now know what is wrong!

The brochoscopy showed that Brooklyn has laryngomalacia. She also has a problem with her arytenoids. The arytenoids are pieces of cartilage that attach the vocal cords to the larynx. Brooklyn's are floppy and swollen and intermittently obstruct her airway.

Usually this is a condition that doctors try to let babies outgrow. But in Brooklyn's case, she hasn't improved or started to outgrow it, and normally that would have already happened by 7 months old. So Dr. G2 said that he is going to give her 6 more weeks to try to outgrow it. If she hasn't by then, he said that there are "other procedures we will need to look at." He didn't tell us what those procedures were. He said that we would talk about that more later. David and I were fine with that...I think just because we were so glad that we finally knew what was causing our baby's problems.

I wish that my scanner was working so that I could show y'all the pictures of Brooklyn's airway. She is having to breathe through such a tiny, tiny little hole. It's no wonder she is burning so many calories that she can't grow enough.

Her endoscopy was fine. Everything was normal and while it confirmed her reflux, the reflux has not caused any damage to her esophagus or stomach. This is great news.

Both doctors took pieces of tissue from a bunch of different areas to biopsy. I'm not 100% clear on why...to check the tissues for any problems, check for allergens, and see if she is aspirating was what I gathered. There are other reasons, I'm sure, but I will ask about that at her gastroenterologist appointment next Tuesday.

Brooklyn was not a happy camper yesterday. They put her under general anesthesia and when she first came out of it, she freaked out really bad. They took me back to post-op and told me that they had just finished extubating her. She was screaming her head off. They were trying to feed her Pedialyte and glucose water and she was refusing both. They gave her to me, gave her some Fentanyl and Tylenol for pain, and she calmed right down, snuggled in and went to sleep. She stayed out for an hour or so, and during that time, they moved her to a recovery room.

After she woke up, she took 2 ounces of Pedialyte from me and then I was allowed to breastfeed her. She nursed really well. Towards the end of her feeding, Dave noticed that her IV wasn't dripping anymore. After Brooklyn finished nursing, he went to tell a nurse. By the time the nurse came to check on it, Brooklyn's IV had backed up about 2 feet and she was screaming bloody murder. They tried unsuccessfully to flush it out, and then another nurse decided just to take it out since Brooklyn had eaten. Soon after, an anesthesiologist came to assess Brooklyn. We were then given discharge instructions and allowed to leave. This was around 6:00. So we were only at the hospital a total of 6 hours, start to finish.

The whole rest of the night, Brooklyn was just not herself. If she wasn't sleeping or eating, she was screaming. She wouldn't smile or talk or coo or anything. It was obvious that she just felt like crap. I think she just felt bad from the procedures and still had all that yucky anesthesia in her system.

This morning, I have my smiley, talkative, playful baby bear back. And we have answers to many of the questions that have gone unanswered for so long. It's going to be a good day.

Nervous.

That's what I am. Nervous, anxious, worried, fearful. Brooklyn's bronchoscopy and endoscopy are tomorrow.

I am afraid because Dr. G, the first pulmonologist we saw, really scared us about having a bronchoscopy performed on Brooklyn. This was back in July. I talked about it here. Dr. G told us in a very flippant way that he would do the procedure on Brooklyn but that we needed to know that he could paralyze her vocal cords or puncture her lungs or that she could have horrible complications from the anesthesia. And that's pretty much all he told us about the procedure. Other doctors have since told us that they think that Dr. G2 was afraid to do the bronchoscopy on such a small baby, so he scared us out of it. We didn't have it done then. We were scared and we also didn't want to put her through anything that she didn't absolutely need. So here we are, the tests have gotten progressively more invasive and she now has to have the bronchoscopy, along with an endoscopy. I keep wondering if they really are going to paralyze her vocal cords. What if I never get to hear her sweet little voice again? Or what if something worse happens from a lung puncture or something like that? My stomach just ties itself into a million little knots. I hate the idea of her being in a surgical room under anesthesia and with a breathing tube in her to begin with....but then add all of these other fears into the mix....I'm just scared.

I guess my other fear is that they will do these procedures tomorrow and still not know what is causing Brooklyn's respiratory problems (and consequently, her failure to thrive). I don't want to put her through any more of this. I am trying to have faith that we will have our answer tomorrow, and that her doctors will know what to do to fix everything. Dr. G2 and Dr. R will be doing these procedures. I know that they are experts and that they are good at what they do. It's just hard to trust anyone with your little baby like that.

We have to be at the hospital in Dallas by noon tomorrow. Please keep my sweet baby bear in your prayers.