Tuesday, December 30, 2008
In God's hands, indeed. We have been to the wreck site, we have seen the pictures of the mangled truck he was trapped inside. It is miraculous that he made it to the hospital, that he survived his surgery to repair his internal organs that day, and that he has made it through three long days so far. He is strong, and he is in the fight of his life right now. The fight FOR his life.
I have a hard time believing that the God I love would let him suffer through the last three days just to take him from us. Or to not let him wake back up again. The doctors aren't giving his family a whole lot of hope. IF he makes it through, they say...IF he wakes up...he will probably never be the same again. That's a lot for them to take. To hear these things about their eighteen-year-old son, brother, cousin, nephew, friend. To see him lying in a hospital bed with so many wires and tubes running in and out of his body, a drastically swollen version of himself. To spend so many hours in the ICU waiting room and hallway, unable to see their loved one. Waiting for any report, not knowing what is going on behind those locked double doors that lead to his room. We have spent a great deal of time at the hospital since Saturday afternoon. It is the least that we can do, to give them support and hugs, an ear to listen, a shoulder to cry on. There are so many tears from so many loved ones. It weighs heavy on my soul.
My husband and I have been able to see him twice. I have held his hand and told him to keep fighting and that we love him. I have prayed over him with a complete stranger. Visitation is five times per day, fifteen minutes each time. It is overwhelming how many people line up to see this young man every time visitation rolls around. A flock of 50, 60, 70 people, filing in and out, three at a time. So much love, such a big family, and so many friends. I know why. He is a good kid. He is outgoing, he has a big smile, a great sense of humor, a helping hand, and a sweet spirit.
Please pray with me. He is in God's hands. So...I pray that God's hands will carry him and his entire family through this and bring him back to us.
Thursday, December 25, 2008
9 month well check
Brooklyn saw Dr. A on Friday the 19th. She weighed 14 pounds, 9.5 ounces (still on that 3rd percentile line! Woohoo!). She was 27 inches long (25th percentile). Get this...that means that she has grown 2 inches in 2 1/2 weeks...how crazy is that? 2 1/2 weeks ago at her appointment with Dr. R, Brooklyn was barely 25 inches, which was 3rd percentile. A week and a half later, at Dr. G's, she was nearly 26 1/2. Now...another week later...27! She is growing!
Dr. A's nurse listed off a bunch of milestones and asked whether Brooklyn had met them yet. The answer was "no" for most of the motor milestones. I think the only 2 that we could say "yes" to were sitting up and pincer grasp. No creeping, no crawling, no pulling up to stand, no standing unassisted. However, she is doing great on all of the verbal milestones. Basically Dr. A said that we are just going to have to watch her closely. If she isn't crawling by 10 or 11 months, not standing by 11 or 12 months, then she may need some therapy to help her catch up. He said that her motor development is below average at this point, but "on the cusp of what's considered okay." This worries me. But we'll wait and see what happens. She has been through a lot and there are obviously medical reasons why she is behind.
Brooklyn also does not have any teeth yet. Dr. A said that studies have recently been published that show that babies who are have both slow dental development and slow motor development eventually catch up 100%. They don't know why yet, but there seems to be some kind of correlation. He said that based on this study, the fact that she hasn't cut any teeth is actually reassuring.
The only shot she had to get was her monthly Synagis (RSV vaccine). No other immunizations. I'm sure she appreciated that.
Dr. A also thought that Brooklyn's breathing was starting to sound better! Yay!
Brooklyn, my mom, and I went to Houston to visit family from Saturday until Tuesday. Dave couldn't get off work to go with us. Boo!
Anyway, my grandparents, aunt, uncle, and cousins all live in Houston. My grandparents are the only ones who had met Brooklyn before. Everyone else was dying to see her. She did GREAT on Saturday and Sunday...she let my grandmother, aunt, cousins, and my cousin's daughter hold her and she didn't scream at all! For the past month or two, she will scream her head off if anyone besides me, Dave, or her grandmothers hold her. But we were having a Christmas miracle or something on those two days...she was in an amazingly good mood and would allow anyone to hold her! The nearly five hour car ride down there was also relatively painless!
Monday and Tuesday were not as wonderful. Brooklyn wanted me and only me and was doing her typical scream-bloody-murder-if-mom-puts-me-down-for-one-second. She did not sleep much at all during the nights...which makes for a grumpy, fussy, screaming baby and a grumpy mommy who is short on patience. The ride back home took six hours (damn Houston traffic) and was not so much fun. She did finally take a 2 1/2 hour nap, and we were all ready for it by then. I basically played single parent during the four-day trip and it was TOUGH.
All in all though, we had a great visit in Houston. I had not seen most of my relatives since last Christmas and I had missed them so much! We got to spend every day with them and it was good times :)
The presents are wrapped and under the tree. We will celebrate Christmas with just the three of us here at our house in the morning. We will go to my parent's house to have Christmas with them in the afternoon. My baby brother is on leave from the Army for two weeks and it's always good to have him around. On Friday, we will do Christmas Part 3 with my hubby's family.
I am excited about it all. :)
I'm off to bed...big day tomorrow! Google Reader will have to wait some more.
Wednesday, December 17, 2008
1. Diet. Lose some weight. And I will take some diet pills if I want to! In fact, I will probably take every diet pill I can find (Yes, I'm exaggerating there). I am so grossed out by my fat ass right now. Ugh. Ugh. Ugh. Hate it.
2. Get my tattoo! I'm so excited about it. I'm going to get Brooklyn's footprints from the day she was born on my back. I don't have any tattoos yet. I have always wanted to get one, but could never think of something that I truly wanted on my body forever. My baby's tiny first prints are perfect. I know that I will never regret that.
3. Get my draaaaank on. Come on, it's been a year and a half :)
4. Shrink back down on top. I HOPE. Not that they were ever small.
5. Take medicine when I don't feel good. It's been quite a while since I could take much of anything besides Tylenol.
6. Say "Adios" to the big old hospital grade pump I've been lugging back and forth from the office every day for the past six months! Along with that...I won't have to schedule pumping time twice a day at work.7. Be kind of sad. After all, there is only one time in life that you get to bond with your baby in that way. When it's over, you can't go back to it. I've struggled so, so, so hard to make it work for us. It was not this easy, natural thing that just happened for us like I thought it would. And our situation may not be ideal...she is not exclusively breastfed. We have had to supplement with formula from the very beginning because of feeding problems and her weight. But we have worked so hard and pushed through all of the obstacles so that she could have as much of the very best nutrition as she possibly can. There are things I look forward to about weaning her, but I'm not in a hurry for it to happen. It's important for her. It's important for her health. We're on her timing, not mine.
Sunday, December 14, 2008
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!!!
Friday, December 12, 2008
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.
Wednesday, December 10, 2008
Thursday, December 4, 2008
In my dream, I was proud of my daughter for learning all of these new skills. But I cried because I was mourning the loss of her as my sweet little baby. She was growing up, and she didn't need me the way she used to.
I've been thinking about this all day. It weighs heavy on my heart and makes me feel profoundly sad. I need to take my dream as a sign that I need to enjoy having a baby while I can. Other things in my life can wait. No one is going to die if I can't get all of the laundry done, if I can't vacuum as often as I want, or if my email doesn't get checked every day. I can live with those things. But I won't be able to live with myself if I don't fully enjoy my baby and if I don't love on her and bond with her as much as I possibly can while she's still small. While she's still a little baby.
Brooklyn won't always need me the way that she does right now. When she wakes up every hour during the night, I need a better attitude about it. I need to think about how lucky I am to have someone who needs me so much, instead of being irritated about lost sleep. I need to remind myself of how fortunate I am to have this little person in my life who cries out in the dark just because she wants so badly for me to cradle her in my arms and make her feel secure. I can make her world okay by holding her little body to mine, nursing her, stroking her hair, and touching her little face. When I think about it....that's such an incredible privilege. My beautiful baby is showing me the purest form of love and complete trust.
This time in her life will be over so soon, and I don't want to regret a single thing about it. I won't get another chance to do it the right way. I want to make everything perfect for her. I want to have the most wonderful memories possible. Because when it's all said and done, Brooklyn is all that really matters to me.
Tuesday, December 2, 2008
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.
Thursday, November 27, 2008
Tuesday, November 25, 2008
Yesterday, he was off work. His mom came over to watch Brooklyn because she doesn’t get to see her very often. Dave told me that he was going to take advantage of the free time he would have and actually get some things done...mow the yard, take one of our dogs to get her shots, get Brooklyn’s prescriptions refilled.
I tried to call him a couple of times during the afternoon and he didn’t answer. He called me back around 4:30 and said that he was with his little brother and best friend and that they were on their way to my office. A few minutes later, they walked in. Dave says to his best friend, "Okay, Joe, show her the pictures." Joe comes over with his cell phone and starts showing me a series of pictures of someone getting a huge tattoo on their entire upper arm. I quickly notice that the person in the picture is wearing the same shirt as my husband. I look over at Dave and see that his sleeve is all bloody. He gives me a big goofy grin. He pulls his sleeve up to show me his new gigantic tattoo. "It’s AWESOME, isn’t it?!"
You have GOT to be kidding me. First of all....he doesn’t even bother telling me that he’s going to do this. I apparently don’t need to know, but his friend and brother and mom do. (His reasoning there: "I wanted to surprise you. I wanted to be able to show you and say, ‘Look what I did!’" SERIOUSLY??? Did you think I was going to jump up and down with excitement???)He
I don’t care that he got a tattoo. That’s not the issue. I wish he felt like he needed to include me in his plans. I can’t understand how he can justify spending our money this way when we clearly have so many other places it needs to go. I wish he would have thought of someone besides himself. I am PISSED. And he doesn’t care. He thinks it's pretty much the coolest thing he's ever done.
Oh...so he was at the tattoo parlor for four and a half hours. Do you think he got anything else accomplished during the nine hours his mom was taking care of Brooklyn? You know, those things that actually needed to get done? Nope, he didn't do a thing. Nice.
Monday, November 24, 2008
I am exhausted. I got sick after dinner last night. I just slept through my lunch hour, which was fine because the idea of eating the lunch I brought completely turned my stomach. I'm five days late. I have no signs that AF is on her way.
My hubby made me take a pregnancy test last night. It was negative. It was the first time I had ever been relieved to have a BFN. And yes, we're using birth control, but you know, nothing is 100% foolproof.
So if it's not that, then what's wrong with me? I feel YUCK.
Sunday, November 23, 2008
The rules of the award are this - fill out the little four-item questionnaire attached to the award, and pass it on to four friends. So here goes:
My best friend and I have actually known each other since we were six years old. We weren't really close back then, but we started working together when we were 15 and have been inseperable ever since.
They accept me, they listen to me, they support me through hard times, and I can trust them enough to show who I really am and how I really feel.
3. Are your friends your sounding boards?
Yes! I think that is such a wonderful part of friendship. Friends can show you a whole other perspective on a situation in your life.
4. What is your favorite activity to share with your friends?
I honestly don't care what I am doing when I get to spend time with my friends. Seriously. Going out to dinner, going to a movie, getting a drink, just hanging out at someone's house...to me, it doesn't matter where, it just matters who you are with.
So like I said, I'm supposed to pass this award on to four bloggy friends. This is a toughie because I have made so many wonderful friends in the few months that I have been blogging. I think you are ALL so fabulous and wish that I could hug you all in person :) Your kind words and encouragement are such a blessing to me!
Friday, November 21, 2008
Tuesday, November 18, 2008
I don't lie to people. I don't just say everything is great or good or fine with us. Honestly, I don't really feel like I should have to. I know that's the acceptable answer...but am I alone in feeling like if people are going to ask, they deserve a real answer? No, I'm not going to go into detail, but why should I have to give you a fake perfect picture of what my life has been lately? When you specifically ask me how my child is, why should I have to lie to you about it? Just because you might not know what to say?
I know we all do it. When we ask people how they're doing, we generally don't want to hear the truth. It's just a formality most of the time, and all we really want to hear is "Fine."
I wonder what it must be like for parents with terminally ill or very, very sick children. I wonder how they handle the everyday questions about how their kids are without making people squirm. Trust me, I know our situation is nothing compared to these. And I think that's what makes me feel kind of guilty about giving people a real answer. Then they might not think that I'm happy enough about being a mother. They might think I'm just feeling sorry for myself, or that I'm not grateful to have my sweet baby bear. What if they think I am fixated on the negative and don't think that I am totally crazy in love with my adorable daughter?
A few months ago, when we still didn't know what was going on with Brooklyn, when we had tons of tests coming up, when I was terrified of what could be wrong, a former coworker came by my floor at work to visit. He had retired about a year prior, but we had occasionally exchanged emails since then. He knew that I had just returned from maternity leave and that Brooklyn had been having some problems. He asked me how things were going with her. I gave him a little bit longer version of our situation, because I felt like he would be understanding. He was a parent and his first grandson was just a bit younger than Brooklyn. I told him about all her medications, breathing treatments, lack of weight gain, the tests she was having to go through. And his response was, "You know, there are a lot of parents that go through much worse. It's not that bad."
You don't think I know that? You don't think that I feel guilty all of the time because I know there are so many parents suffering through so much more? That I don't think I should be happier or less stressed because other mommies lose their babies, or live with the reality that they could lose their babies any day? I KNOW these things. This man made me feel about two inches tall. I felt like I should never tell anyone anything other than "Everything's fine."
Really and truly though...I don't feel like we should have to apologize or feel bad about for things in our lives that are beyond our control. I don't think that we should have to create a false reality, especially when it comes to our children.
Right now, my reality is this: I have a beautiful, sweet, smart-as-a-whip eight-month-old baby girl. She's the most wonderful thing I could have ever imagined having in my life. Unfortunately, she has some health problems right now. She has laryngomalacia, a problem with her arytenoids, severe reflux, and "failure to thrive." She's been through all kinds of tests and procedures and she has several specialists. She takes multiple medications, but they really don't seem to help. I don't know whether she will outgrow this or whether she will have to have surgery. I hate that I can't fix her and that no one else has yet either. And I get stressed out, and I get scared. And if you're going to ask me how my baby is, I'd appreciate it if you would validate my feelings instead of making me feel like a terrible person for telling you the truth. I'm not asking you to feel sorry for us, because Lord knows there are many, many others who you should feel sorry for before us. But please, just don't make me feel worse about a situation that already makes me feel bad. Thank you.
Friday, November 14, 2008
Brooklyn is doing really good at sitting up, but she doesn't have it completely perfected! Here she is hamming it up for the camera tonight...until she gets too excited and loses her balance. Tee hee. She is the most adorable tiny little person I've ever seen :)
Oh, she was 13 pounds, 12 ounces at her weight check on Wednesday! That's A WHOLE POUND gained in less than a month!!! Go Baby Bear!!! Our lactation consultant said, "Wow! This is great! Look how close she's getting to hitting that 3rd percentile line!" Okay...so sometimes we celebrate things that other people might not think about. But that's okay! Brooklyn is making her own growth curve and doing things her own way.
Wednesday, November 12, 2008
I knew I was fat, but I really didn't think I looked 5 or 6 months pregnant (at least). I guess I was wrong.
She crushed what little self-confidence I had.
I feel too gross to even be seen in public. I have GOT to lose some weight.
And you know what else? That rude bitch didn't even apologize.
Monday, November 10, 2008
Brooklyn is eight months old today! That is absolutely crazy to think about...there is no way it has been EIGHT MONTHS since I laid in that delivery room and did the greatest thing I've ever done. No way. Time is moving too fast for me. I'm afraid I won't get to soak in all of her beautiful baby-ness. I don't ever want to forget a single detail. I will write more on this soon.
She is sitting up on her own really well. She can sit for about 5 minutes or so, unless she dives for a toy or gets too excited. Her balance is getting so much better. She has her first tooth coming through. It's on the top...I thought all babies cut their bottom teeth first, but my mom said that my first tooth was on top, and it wasn't even a center tooth. Brooklyn won't hold still long enough for me to look at her little chomper, but I can feel it with my finger and I can definitely feel it scraping me when I nurse her! Ouch.
As far as Brooklyn's health goes, I don't really have any updates there either. We are in a holding pattern. Nothing new, nothing worse, but really no improvements either. I don't think that the switch from Reglan to Bethanechol has changed anything. She doesn't have any appointments with her specialists this month, they will see her in early December. I am not too hopeful that she is going to just spontaneously outgrow her breathing problems, just because I am not seeing any signs of progress. We are just waiting to see what will happen between now and December. It's odd (but nice) to have an entire month in which we don't have to make any trips to Dallas for doctor's appointments.
Tomorrow is a holiday, so I get to be at home with the Baby Bear. Well, not really at home. I'm going to try to go to the eye doctor, see if the dentist has any openings, and I'm planning to take Brooklyn by the lactation consultant's office to have her weighed. It has been a couple of weeks since she has been to the doctor, and I get nervous if I don't know where we stand with our good friend the scale....
Tuesday, November 4, 2008
I am truly afraid of what may happen to our country if the wrong choice is made. There is so much at stake. But this isn't a political blog, and I'm not here to force my views on anybody or step on anyone's toes. So I will just say that you should educate yourself on the issues and make a wise, informed decision. Think not just about yourself but about our children and their children. What we do now will determine how we will be judged by future generations.
And remember, if you don't vote, you are still making a choice. You are making the decision to forfeit both your right to have your voice heard AND your right to complain about politics for the next four years! If you don't care enough to get out and vote for what you believe in now, you shouldn't care enough to whine about our leaders later.
Friday, October 31, 2008
Tuesday, October 28, 2008
Friday, October 24, 2008
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.
Wednesday, October 22, 2008
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!
Monday, October 20, 2008
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!
Saturday, October 18, 2008
Thursday, October 16, 2008
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.
Tuesday, October 14, 2008
Friday, October 10, 2008
Wednesday, October 8, 2008
Where the hell did my imagination go? I was thinking about this when Brooklyn and I were on a walk last night. I would never dream up Conan O'Oinken, and my hubby just comes up with stuff like this off the top of his head.
I can sing songs to my baby, read to her, show her toys. I can talk to her about what we are doing ("Oh look, I'm brushing my teeth. This is how we keep away those bad cavities! You don't have any teeth yet though, do you?" or "Did you hear that doggy barking? He sounds like a big doggy!") or I can tell her how much I love her. Things like that. But other than that...I'm kind of at a loss sometimes. I think it is my nature to edit myself so much that I have a hard time just being silly or childlike. I don't want to say anything stupid.
I think I have forgotten how to use my imagination. How to just think things up and not worry about what anyone else would think. I just can't let go and relax like that.
Especially in this situation...my baby isn't going to think I'm silly or dumb. I know this. Thinking the way that I do just becomes such a habit, I guess. I've gotten too grown up. I take myself too seriously. I wonder how exactly this happens. I mean, was it a gradual process, or did it happen overnight? And why did I lose this ability when my husband still has it? Do some of us just spend so much time filling our heads with worries and adult nonsense that our playfulness just fades away without us noticing?
I don't know how to make up stories to tell Brooklyn. Dave did it before she was even born. He would ride around on patrol and record himself on his digital recorder just talking to Brooklyn about anything and everything. He would tell her the story of us, he would ramble on about what he had done at work that day, he would talk about her future and what he wanted for her. He would make up these creative stories. Then we would put headphones on my belly and play his recordings for Brooklyn. I wanted her to know his voice. And she did. She would kick, kick, kick away when the recordings ended, like "I want to hear more!" I would feel her kicks, look at the recorder, and without fail, the segment would have just finished playing. I wasn't allowed to listen to the recordings, Dave said. They were just for Brooklyn.
Anyway...all that to say, I never could have just talked on and on like that with no one to answer me! I wouldn't have a clue what to say. And I don't know how to just play anymore. I have to really think hard about little games and ways to show Brooklyn her toys. I really envy my husband's abilities in this area.
I feel like a bad mom sometimes for not knowing how to do these things. I feel like people would think that I don't care enough about her to spend time playing with her or talking to her enough. I feel like I'm not doing enough, and I know that play is so important for babies. It seems as though I can't do something that probably comes naturally to most other parents. I don't really know what to do about it though. I wish it wasn't a struggle for me because it should be simple.
I hope I grow with my daughter and learn how to do all of this as she gets a little older and learns how to play. I hope my imagination redevelops as she discovers hers. I hope we can learn together.
Tuesday, October 7, 2008
I wasn't sure whether I should call Dr. A about it. I don't want them to think I'm the mom that freaks out and overreacts and calls about every little thing. Which I know I don't, but we are already at their office so much for Brooklyn's other problems. My mom called me at work on Monday and said she really thought I should call Dr. A just to ask him about it. So I did, and they wanted me to bring Brooklyn in at 4:00.
That's when I really started worrying...like oh crap, something else is wrong, they're going to send us to more specialists. They're going to make her wear one of those horrible skull-reshaping helmets. What about the little knot on her head? What if it's something really bad? I called my hubby and he was kind of freaking out too, talking about how he didn't want to put Brooklyn through anything else, etc...
But it was okay. Dr. A said that on a scale of 0 to 10, where 0 is a perfectly-shaped baby head, Brooklyn's is about a 3. Her skull is a little asymmetrical and she has a bit of a head tilt because of it. He showed me a couple of physical therapy exercises to do on her neck every day to help with that. He also told me to roll up a blanket or burp cloth and put it under the right side of her carseat cover when she sleeps at night to try to get her to turn her head to the left instead, to try to even things out. We are just going to keep an eye on it for now. Dr. A told us that most babies' heads will round back out by the time their soft spots close at 15 months. He said that if I wanted, he would refer us to Dallas to get her fitted for a helmet...I said NO THANK YOU!!! We are also going to keep an eye on the knot on her skull. He didn't seem alarmed by it but said that usually when babies have spots like those, they are lymph nodes, but her spot is too hard to be a lymph node. So hopefully it will just go away!!!
Oh...and little miss Brooklyn weighed 13 pounds even!!! She is doing so good with her weight gain the past few weeks. She will be 7 months this Friday. Unbelievable.
Saturday, October 4, 2008
Brooklyn ate from a spoon for the first time today! She did a great job and made a big, hilarious mess. But that's half the fun, right? At first, I made the cereal the thickness called for on the box for "baby's first feeding." But that made it about the consistency about like the "nectar" she takes in her bottles. So she was sucking it off the spoon instead of taking bites. I thickened it up more and she started taking bites just like she had been doing it forever! She was reaching for the bowl if I took too long in between bites and ate all of the cereal that I fixed her. What a big girl!!!
Friday, October 3, 2008
So around 2:00 a.m., I realized that everyone else was in the bedroom too and this was no longer a nap. LOL, oh well. So I went back to sleep. And slept until 6:30 this morning! That has got to be the most sleep I have had in one stretch since...I don't know...maybe my second trimester???
And today I am SO energized! I can't think of the last time I felt this awake and this productive. I wish that I was at home so that I could be productive there instead of at the office, but oh well. Maybe I will still feel this way tonight. Woohoo! I feel like I could run up and down the street with a big grin on my face. Probably not the best idea though, since I work next door to the jail, and people would probably just think I was a crazy escaped inmate.
So before I get back to work, a few things I want to tell you about:
Brooklyn's weight check on Wednesday...she weighed 12 pounds and 13 ounces!!! Go baby!!! That's 5 ounces per week for 2 weeks! She has never been able to do that before. I'm happy, and so is Dr. A. Brooklyn is still right on that 3rd percentile curve...but Dr. A said that is FINE, because at least she is staying on a curve and not falling off it again. I was hoping they might say she didn't need the procedures on October 17, but no such luck because her breathing has not improved.
To celebrate, I went and bought Brooklyn a Bebe pod seat. Actually, I was going to buy one anyway, because she is too small for her high chair and Dr. had said that we could try giving her baby food for the first time. She can have a little bit of food as long as it doesn't take away from the calories she is getting in her bottles. Anyway, she needs the Bebe pod for that and because she can't sit up on her own yet and needs something to help her practice. She LOVES that thing! She just sits in it and plays with her toys and looks around at everyone like, "Hey, check me out, look what a big girl I am!" I'll post pictures later on. It's soooo cute.
I'm going to take Brooklyn after work to get some 6 month pictures done. The girl at the portrait studio said that I could bring more than one outfit. So now I am trying to figure out what outfits to take with us! Brooklyn is FINALLY starting to fit into some 0-3 month clothes (at almost 7 months old), so now she really has some cute outfits to wear. She has been wearing size newborn for about 5 months now, and there just aren't nearly as many adorable clothes in that size. Hardly any dresses or anything like that. So...hooray for 0-3 month clothes, and hooray for my sweet baby bear for growing!
Monday, September 29, 2008
(Pause the little iPod on the left so you can hear her!)
Brooklyn has this big beautiful crib in her room that she has never gotten to sleep in because of her airway problems. She has to sleep upright, so she sleeps in her carseat in our bedroom. So we lay her in her crib sometimes and play with her so that hopefully it won't be a scary, unfamiliar place when she does finally get to sleep in her own bed.
You can't hear much of her stridor in that video. But here is a clip from just a minute ago, sleeping and sounding the way she typically does. It's weird sometimes how the volume fluctuates. And it's never something where we can say, "Oh, if we lay/sit her in this position, it gets better." It's not predictable at all. The doctors always ask us when the noise gets better and when it gets worse. We can't say...all we can tell them is that it's pretty much always there. Last weekend, my grandparents were here, and I was holding Brooklyn while she slept. Her stridor was really, really loud. Then, without me moving her at all, it just went away for like 5 minutes, and pretty much shocked everyone. Then it came right back. I don't understand it. It just happens sometimes. I wonder if this is significant.
Weight check is this week, pulmonologist visit is next week, as is her pre-op appointment. Her endoscopy and bronchoscopy are the following week.
Friday, September 26, 2008
Wednesday, September 24, 2008
Checking each other out
Brooklyn's not sure what to think, LOL
Gavin makes his move to kiss her!
And he takes Brooklyn by surprise!!!!
Saturday, September 20, 2008
Friday, September 19, 2008
So all plans for the surgical procedures will remain the same unless her breathing AND weight drastically improve this month.
On another note...a monthly visitor that I hadn't had to deal with in 15 months made an appearance at work today. I was not exactly prepared for that. Gah, I hate uninvited guests. I was hoping Aunt Flo would stay away until I was finished breastfeeding. I have not missed her in the least. Oh well.
Thursday, September 18, 2008
As usual, I’ll start with the good news...she weighed in at 12 pounds, 3 ounces! 7 ounces in one week! I don’t recall that ever happening for us. That means that our feeding plan is working now. Hooray! She is hovering around the 3rd percentile on the growth chart right now. Dr. A said that if she continues at this rate, she will weigh about 17 pounds on her first birthday. But all things considered, he is satisfied with that as long as Brooklyn continues to gain and doesn’t get to a point where she isn’t gaining any weight at all again. She was 25 inches long...25th percentile! Woohoo!
Developmentally, she is fine. She cannot sit on her own yet and only rolls occasionally, but has rolled both ways. She LOVES to stand up though. Dr. A was examining Brooklyn, and when he checked her motor skills, he started to pull her up to stand and she pretty much did it on her own. She loves that. Then he was trying to get her to sit, but all she wanted to do was stand back up...she even got on her tippy-toes once! She thought that it was a fun game and was grinning at Dr. A the whole time. Dr. A said that she is doing fine with her development. He said, “Do I have plenty of 2 month olds in my practice who are bigger than her? Yes. But I also have 20-pound kids her age who can’t do some of the things she is doing.” So that was good. He said that actually only about 50% of kids can sit unassisted at this age. He said that we can sit Brooklyn up in her Boppy more to help her gain “trunk strength” and hopefully she will be able to sit by herself soon. She likes to pull herself up to a sitting position when she is being held, she just doesn’t have the balance thing down yet.
I was afraid that they wouldn’t give her the 6-month immunizations because she has had a cough for the past couple of days, but they said that it was okay because she was not running a fever. She cried for probably less than a minute when she got her shots...I promptly gave her a bottle and all was forgotten.
Now here is what I got upset about. Dr. A was going over the tests Brooklyn has had since we last saw him and discussing our visits with the specialists and what the plan is now. He said that he thinks that she will have the endoscopy/bronchoscopy in October as planned and they probably won’t find much of anything. He said that at that point we should consider just “taking a break from all this.” Basically, he told me that he wants an answer too, but that we have to know when enough is enough and know when to leave Brooklyn alone because all of the tests and procedures are hard on her.
Okay. So...I am supposed to put Brooklyn through this scope procedure next month, which I am already scared of, and you don’t think it’s going to tell us anything? What is the point of that??? Why am I going to make her do that if you think it’s pointless? If you think it will be “essentially normal”?
And then we are supposed to just sit back and let things just be...when we have no more answers than we have ever had?
“Something is wrong,” I said. “No one has ever denied that, but no one can tell us what that is.”
“Yes,” said Dr. A. “Something is wrong. But what if it is tracheomalacia that is aggravated by reflux and all of that makes her burn so many calories that she can’t gain weight.”
Well, what if?
Ummmm....that was what we were told that the problem was MONTHS ago. Why have we been doing all of these tests? Clearly, no progress has been made, and now we are just going to go back to assuming the problem is what you originally thought?
I told Dr. A my fears about the scope procedure, and how I didn’t know now if I wanted to make her go through with it. He said that he would speak with Dr. G2 and Dr. R and would see if perhaps it could be postponed if she continues to gain weight at a good rate over the next few weeks. He said that he would call me last night or “first thing” this morning. As per usual, I have heard nothing yet.
I’m just so damn frustrated and confused. I am conflicted about what should be done. I don’t know what the right choice is, I don’t know what the right thing to do for my baby is. I am so confused by a doctor who wants to do every test in the book one month and the next month wants to call it all off and do nothing, when absolutely nothing seems to have been accomplished. I am afraid of the unknown...of the idea that she has these breathing problems for some undetermined reason. That makes me so uneasy. If it’s unknown...how do I know she isn’t just going to die? How can I fall asleep and believe that I will have her beautiful smiling face greeting me each morning? And how could I ever live with myself for not doing something about it, for not working hard and advocating for her to find out what is wrong? But what if they keep doing all of these tests and something happens to her...what if they hurt her and she has some horrible complication or side effect? I don’t want her to be subjected to all of this so young. But I am so afraid of what is wrong. I can’t lose her. My anxiety is so great this morning that I feel like a 500-pound weight is sitting on my chest, and my heart is beating a thousand times a minute to try to push the weight off of me. I have a million questions racing around and colliding inside of my brain, and I suspect that many of them will remain unanswered.
Monday, September 15, 2008
But I spent much of my day at work halfway wishing that one of my clients would try to attack me so that I could kick and hit the crap out of them. When I got gas on the way home, I thought, "If someone tried to rob me, I would get to stomp the hell out of them, and it would be okay."
What is that all about??? Weird. I know it is.
Don't worry, I would never actually haul off and hit someone, no matter how good I think it might feel. That's not my style. I bottle it up and pretend all is well instead.
Part of the problem, I think, is that for the past week, I can't cry. I feel profoundly and deeply sad, and all I can do is just feel sad. I'm on the verge of crying my eyes out, but nothing happens. I feel like a huge rock is stuck in my throat, my heart is beating fast, my stomach ties itself into a thousand knots, I feel shaky/panicky/anxious. My thoughts race with all that I am worried and sad about. And no tears, even though I feel like I really, really, need to let them out. Is my medicine doing this to me or something??? I truly don't know.
I'm so mad that Brooklyn's doctors can't figure out what is wrong with her. I'm so angry that she has to be in pain. What could she have possibly done in her 6 short months of life to deserve to hurt so much? She screamed for over an hour tonight, horribly sad, painful, gut-wrenching screams. When she's like that, her face is so sad, it breaks my heart wide open. She makes these pitiful "ooohh ooohh ooohh" noises when she calms down a bit from the screaming, and she's still crying, and the noises just sound to me like "Help me, mama, please, help me" and I CAN'T. I do everything I know to do and nothing works. She's in pain...I know she is...you can't hear these cries and believe otherwise...she's arching her back and those screams just aren't normal. She hasn't been able to eat well since last night...lots of gagging and screaming at the bottle. I just want to crumple up into a ball and sob with her as I rock her, because I'm so damn sorry I can't fix it. It feels like a knife is being twisted into my heart. But of course, I can't cry with her because I can't cry.
I'm angry that we have to wait so long to even take the next step to try to find out what the problem is. I'm pissed that this many pediatric specialists are having this hard of a time figuring her out. Is it seriously that hard??? I'm angry that I keep having to put her through all these tests. Are we even doing the right thing? I don't really know.
Then I am mad about our financial situation, how Dave got demoted at the worst possible time. I'm trying to figure out how we are going to afford everything. We got an unexpected phone bill for $368 from our old phone company today. That's going to be half of Dave's check. It's so stupid. How are we going to afford that??? I don't think the bill is correct. I called customer service and griped at the lady on the phone. I hoped she would get rude with me so that I could yell at her, but no such luck. She put me on hold for 20 minutes and I just gave up.
I'm pissed off that my place of work won't help us out by letting me use the sick leave pool to take care of Brooklyn. That the HR woman repeatedly shows how little she cares by refusing to lift a finger to call me back and tell me that she doesn't really intend to try to help me. I'm mad that I don't have the money to be able to afford to take time off without pay to take care of my little baby bear.
She is so, so wonderful. After I got home from work today, she grabbed both of my cheeks and pulled my face against hers. So incredibly sweet. I'm angry that I can't enjoy this more because I am constantly so sad and scared and upset. Why can't I just be happier? I'm so grateful and so blessed and have everything to be happy about. What the hell is wrong with me? Seriously, who does things like this???
On top of everything, I get pissed at myself for being mad. And I feel so guilty for feeling the way I do. There are so many people that have it so much worse than we do. I know that. Parents whose babies are much sicker than Brooklyn, who have something wrong with them that can't be cured, who are terminally ill. I know that there are mommies who have lost their babies and I can't even imagine their pain. I don't have things nearly as bad as those people. Thinking of their situations makes me feel so guilty every time I talk to anyone about Brooklyn's medical issues. I feel like I don't have the right to even say anything that might make it seem that I am not so, so thankful for all we have. I know things could be so much worse. Trust me, I do. So I feel like a whiny, complaining little brat when I tell people what's going on...even the super short synopsis. I really hope that others don't see me that way, but I'm afraid that they might.
I just want to scream so bad...but I can't. I'm holding my baby and she is finally sleeping. And I feel a little bit better after venting here. Thanks for listening.