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.
Showing posts with label weight gain problems. Show all posts
Showing posts with label weight gain problems. Show all posts
Tuesday, September 15, 2009
Sunday, June 21, 2009
June Pulmonologist visit
On Wednesday, we went to see Dr. G2, Brooklyn's pulmonologist. The basic stuff first: she weighed in at 19.8 pounds and was 29 inches long. Her respirations were 36, and her oxygenation was 95.
Just like the rest of Brooklyn's doctors, Dr. G2 was very pleased with her recent weight gain, and was happy that she has caught up on her motor development!
Let me explain what has been going on with Brooklyn's laryngomalacia, since I know I haven't blogged about it much lately. She still has a stridor much of the time. Sometimes it is really loud, but sometimes it is just moderate. It is usually at it's loudest when she is walking around and playing and when she is sleeping. She had stopped making that really deep, jaggedy sounding stridor that sounded like she was trying to catch her breath about two months ago, but now it is back. We hear it probably 10 times a day lately. On a positive note, she does have periods of time where her breathing is completely quiet, sometimes even when she is sleeping.
Over the past couple of weeks, Brooklyn has started having some intercostal retractions again. It never lasts for very long - I'm talking less than a minute at a time. Sometimes it's when she is playing and working really hard, but sometimes it's when I am just holding her and she is sitting still. We hadn't seen her have any retractions for months, so I was shocked when she did it when I was holding her before bed the about 2 weeks ago. I asked my mom if she had noticed this at all, since she keeps her during the day. She said that yes, over the last couple of weeks she had probably seen Brooklyn have retractions about 6 or 7 times. I don't understand why this is coming back all of a sudden. We had thought she was completely over that.
When we saw Dr. G2 at the end of March, he had told us that Brooklyn should completely outgrow her laryngomalacia by the time she was 14 months old. Obviously, this has not happened, and she is 15 months old now. Not only has she not outgrown her respiratory problems, in some ways they seem to be worsening.
So, needless to say, I was ready for our appointment with Dr. G2. Throughout the entire office visit, Brooklyn was playing and walking around the exam room. This was a good thing because Dr. G2 was able to hear what her breathing sounds like and how noisy she can get when she is being active. (At our last appointment, Brooklyn was really quiet and wouldn't crawl around so that he could hear her!)
Dr. G2 said that he doesn't know why Brooklyn hasn't outgrown her laryngomalacia. I questioned him about it two different times, and he just didn't have an answer for us. He said that Brooklyn may have to have another bronchoscopy soon so that he can look at her airway again and try to figure out what is going on. He wants me to email him a video of what her stridor sounds like when she is sleeping this week. He said that he will decide whether she needs another bronchoscopy after viewing that.
He increased her Bethanechol dosage by 25%. Dr. G2 always gives us a copy of the report that he sends to her doctors after each appointment, and the report says this is because "this medication may have an anecdotal effect of increasing airway tone and therefore help with some of the malacia symptoms." So we are hoping for a side effect. Weird. He said that he isn't too worried about the intercostal retractions since she is only having them for short periods of time.
So, to sum up: No answers. Possibility of having to put Brooklyn through another surgery. And did I mention no answers? I am so frustrated with being told Brooklyn will outgrow her laryngomalacia at 4 months...6 months...8 months...a year...14 months....and then it doesn't happen. Why not? Dr. G2 didn't speculate on when she would get past it this time. Not the positive visit I had hoped for. Sigh.
Just like the rest of Brooklyn's doctors, Dr. G2 was very pleased with her recent weight gain, and was happy that she has caught up on her motor development!
Let me explain what has been going on with Brooklyn's laryngomalacia, since I know I haven't blogged about it much lately. She still has a stridor much of the time. Sometimes it is really loud, but sometimes it is just moderate. It is usually at it's loudest when she is walking around and playing and when she is sleeping. She had stopped making that really deep, jaggedy sounding stridor that sounded like she was trying to catch her breath about two months ago, but now it is back. We hear it probably 10 times a day lately. On a positive note, she does have periods of time where her breathing is completely quiet, sometimes even when she is sleeping.
Over the past couple of weeks, Brooklyn has started having some intercostal retractions again. It never lasts for very long - I'm talking less than a minute at a time. Sometimes it's when she is playing and working really hard, but sometimes it's when I am just holding her and she is sitting still. We hadn't seen her have any retractions for months, so I was shocked when she did it when I was holding her before bed the about 2 weeks ago. I asked my mom if she had noticed this at all, since she keeps her during the day. She said that yes, over the last couple of weeks she had probably seen Brooklyn have retractions about 6 or 7 times. I don't understand why this is coming back all of a sudden. We had thought she was completely over that.
When we saw Dr. G2 at the end of March, he had told us that Brooklyn should completely outgrow her laryngomalacia by the time she was 14 months old. Obviously, this has not happened, and she is 15 months old now. Not only has she not outgrown her respiratory problems, in some ways they seem to be worsening.
So, needless to say, I was ready for our appointment with Dr. G2. Throughout the entire office visit, Brooklyn was playing and walking around the exam room. This was a good thing because Dr. G2 was able to hear what her breathing sounds like and how noisy she can get when she is being active. (At our last appointment, Brooklyn was really quiet and wouldn't crawl around so that he could hear her!)
Dr. G2 said that he doesn't know why Brooklyn hasn't outgrown her laryngomalacia. I questioned him about it two different times, and he just didn't have an answer for us. He said that Brooklyn may have to have another bronchoscopy soon so that he can look at her airway again and try to figure out what is going on. He wants me to email him a video of what her stridor sounds like when she is sleeping this week. He said that he will decide whether she needs another bronchoscopy after viewing that.
He increased her Bethanechol dosage by 25%. Dr. G2 always gives us a copy of the report that he sends to her doctors after each appointment, and the report says this is because "this medication may have an anecdotal effect of increasing airway tone and therefore help with some of the malacia symptoms." So we are hoping for a side effect. Weird. He said that he isn't too worried about the intercostal retractions since she is only having them for short periods of time.
So, to sum up: No answers. Possibility of having to put Brooklyn through another surgery. And did I mention no answers? I am so frustrated with being told Brooklyn will outgrow her laryngomalacia at 4 months...6 months...8 months...a year...14 months....and then it doesn't happen. Why not? Dr. G2 didn't speculate on when she would get past it this time. Not the positive visit I had hoped for. Sigh.
Tuesday, June 16, 2009
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....
- We have not had to go see Dr. A in 3 WHOLE MONTHS....since Brooklyn's 12 month well visit! Of course, we have had specialist visits since then....but still, this is a record for us by far!
- During these 3 months, Brooklyn has grown a LOT. The nurses were oohing and ahhing over her and saying she didn't even look like the same baby anymore! Dr. A was very impressed with how Brooklyn looked and commented on how she has a little tummy now. So of course, I had to point out her little chubby rolls that have recently appeared on her thighs as well. :) Everyone at Dr. A's office knows us well and really cares about Brooklyn since she has spent so much time there. It was really cool to hear them all compliment her progress!
- And yes, my baby girl weighed in at 20 POUNDS EVEN!!!! And that puts her in the TENTH PERCENTILE for the FIRST TIME EVER!!! She was also 29 1/2 inches tall, which is 25th percentile!!!! That's a lot of capital letters and a lot of exclamation points....but wow....this is so HUGE for us. We have waited SO LONG for Brooklyn just to be on the growth charts. Last month at Dr. R's, she hit 3rd percentile, and now she has already made a jump to the 10th percentile!!! Awesome!!!!
So that's my big news!!!
Other than that...Brooklyn walked around for Dr. A so that he could see the way that she is leading with her left leg. One thing that is odd about this is that Dave had noticed that it is much more noticable when she is carrying around her toys. So I gave her my keys to hold, and sure enough, the left leg leading thing became MUCH more dramatic. Dr. A didn't know why. He said that Brooklyn does still have a slight head tilt, but he doesn't know if the two are related. He said that the way a child walks for the first two or three months doesn't usually mean that they will walk that way permanently. Dr. A examined Brooklyn and said that there is nothing anatomically wrong that is causing her to walk that way (nothing wrong with her hips, her muscle tone in her legs are even, her "butt creases" line up).
He said that we could put Brooklyn in physical therapy twice a week if we wanted....we said that we would do what he told us in that respect, because obviously we don't know if she needs therapy or not...we aren't the experts. Dr. A decided that we will keep an eye on her walking and head tilt for the next few months. He will see her at 18 months and decide whether physical therapy is needed at that time.
As I previously mentioned....Dr. A was thrilled with Brooklyn's weight gain and development. She has caught up with her motor development, where she was lagging way behind six months ago. He said that it was "miraculous" to see her doing so well now! He told us to keep doing exactly what we are doing with her feedings, because it is finally working!
He doesn't know why she hasn't outgrown her laryngomalacia and why her stridor is still so loud at times. We go to Dr. G2, Brooklyn's pulmonologist, tomorrow. Of course, Dr. A just defers to the specialist's areas of expertise and will wait for Dr. G2's next report. He agreed with what Dr. R had said last month...that since Brooklyn is now growing so well, she shouldn't need surgical intervention.
Oh...on a funny note, when Dr. A got up to leave, Brooklyn pushed his chair over to him (it's one of those stools with wheels) and tried to get him to sit back down. Dr A was laughing and complimenting Brooklyn on how smart she is, because most 15 month olds wouldn't know that the stool was a chair and what it was for!
These positive doctor appointments are so, so good for Dave and I. We didn't know what this felt like until a few months ago :) I hope that tomorrow's visit with Dr. G2 will be an encouraging one as well....
Wednesday, May 20, 2009
ON THE CHARTS, baby!!!
We went to Dallas yesterday so that Brooklyn could see Dr. R, her gastroenterologist. My mom went with Brooklyn and I because Dave has started a new job and couldn't take time off yet. We had a really good appointment with Dr. R. Brooklyn had gained almost two pounds in eight weeks and weighed in at 18 pounds, 10 ounces! She had also grown an inch longer. The highlight of our day was finding out that SHE HAS HIT THE THIRD PERCENTILE CURVE ON THE GROWTH CHART!!! This is such a big deal for us! Brooklyn is on the charts!!!
Dave and I actually had predicted that she would weigh a little more than she actually did. She is looking so, so good lately. Over the past month, her little thighs have gotten chubby, she even has a little roll of pudge on each leg. I can no longer touch my thumb and index finger around the biggest part of her thigh. She has little fat creases on her wrists. I don't think that she will be wearing these size 3-6 month clothes very much longer! I am loving watching her gain weight. She is still considered tiny for her age...but this is amazing to me. I am constantly showing our friends her newly developed chubby thighs...my baby has never looked like this before! It's a thrill for me. It's a visual sign that her health is slowly improving and that things are gradually getting better for us. A reward for everything we have been through and how far we have come.
Dr. R was very pleased with Brooklyn's weight gain. He showed me some of Brooklyn's growth stats that I had never seen before. I knew that her weight was considered "not on the charts." I have seen her "own curve" plotted on the growth charts many, many times, several rows below the curves. But I did not know that in January of this year, she was considered to be in the 0.52 growth percentile. That is ridiculously small...I had no idea exactly how far below the curves she had been. In March, Brooklyn was in the 1.77 percentile. And yesterday, the 3.86 percentile. I wonder what the numbers were last year....he didn't show us that. I am sure they were even lower. But wow. The progress she is making. Dr. R said that he is much less concerned that Brooklyn will need surgical intervention now because she is growing well. (sign of relief!)
Dr. R is not changing up any of Brooklyn's reflux medications right now. She is still spitting up a lot. She alternates between swallowing it back down and actually spitting it up. He said that most children with severe reflux outgrow it between a year and 18 months. However, it is unlikely that Brooklyn will outgrow hers within the next few months because of her laryngomalacia and stridor. He said that the laryngomalacia is further aggravating the valve that causes her reflux. Dr. R also said that if Brooklyn has not outgrown the reflux by the time she is two, it is a sign that she will probably continue to require medication for at least several more years.
The only change that Dr. R made was to take Brooklyn off of her milk of magnesia. She also has to take Miralax now and we are to give her a teaspoon twice per day instead of once per day now. She has been having problems with constipation since late December. The combination of Miralax and milk of magnesia has been the only thing that has worked for her. If she does not get BOTH of them each day, she cannot go. But Dr. R was concerned about having to continually increase the dosage on the milk of magnesia. So I am hoping that this change doesn't get her back off track again.
Anyway. It was a really good, really encouraging appointment. Dr. R told us to keep up the good work again. Dr. R wants me to call him after we see Dr. G2 (pulmonologist) next month. He may increase one of her meds (Bethanechol) at that time. But we don't have to go back for THREE months!
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!
Friday, April 3, 2009
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.
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.
Tuesday, March 24, 2009
Little miracles in all shapes and sizes
The funny thing about this picture is that one-year-old Brooklyn is wearing a onesie that I picked out as a possible coming-home-from-the-hospital newborn outfit. It has little baby handprints on it and says "little miracle...tiny little hands." There is a hat with the same little graphic on it too. Anyway, I was shopping one day while big and pregnant and found this little outfit. I thought it was so cute...I love anything with baby handprints or footprints. I held the onesie over my belly and thought about how I couldn't wait to meet my little girl.
I thought that I was so organized and well-prepared; Brooklyn's closet and dresser drawers were filled with adorable weather-appropriate clothes for each season - springtime 0-3 month outfits, summery 3-6, fall time 6-9, warm wintery 9-12 month clothes. I added the freshly-washed "little miracle" onesie to the neatly folded stacks of clothes in her top dresser drawer.
All babies come out wearing size 0-3 months, right??? I mean, they ARE 0 months old! Come on, it makes perfect sense! The clothes tell you right there on the label how big your baby will be at each age! How smart of them!
I did not realize at that time that babies came in all sizes!
Silly me. I learned that you can't be prepared for everything! My baby girl came home from the hospital with practically nothing to wear! I had one package of Newborn size kimono-style shirts that she wore until we went shopping for Preemie clothes when she was 4 days old. She wore Preemie clothes for 2 months, then size Newborn for another 3 1/2 months. The nice part of this was I got to buy lots more baby clothes because she needed a wardrobe that would actually fit her!
Silly me. I learned that you can't be prepared for everything! My baby girl came home from the hospital with practically nothing to wear! I had one package of Newborn size kimono-style shirts that she wore until we went shopping for Preemie clothes when she was 4 days old. She wore Preemie clothes for 2 months, then size Newborn for another 3 1/2 months. The nice part of this was I got to buy lots more baby clothes because she needed a wardrobe that would actually fit her!
Another cool thing is that not all of her clothes have ended up being the wrong season, as evidenced by my one year old wearing the 0-3 month onesie in the picture up there. It is getting warm outside and Brooklyn can now wear most of her summery 3-6 month outfits. Same season, just a year later than I thought we would use them. :)
(Oh, and by the way, a friend later talked me into choosing a more "formal" coming-home outfit for Brooklyn, a beautiful pink flowered little dress, size Newborn. Which was actually a good thing, since the above outfit obviously would have completely swallowed my brand-new Tiny One.)
Wednesday, March 18, 2009
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! :)
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! :)
Tuesday, January 27, 2009
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.
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.
Thursday, December 25, 2008
Catching up...
Brooklyn and I were out of town for a few days and I had no internet access (gasp!!!). So I am terribly behind on both blog reading and posting. Google Reader says I have 460 posts to catch up on??? Oh my. Not good. So...I'm going to try to catch you up on what has been going on around here....
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!
Houston Pre-Christmas
***********************
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 :)
Christmas plans
*****************
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.
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!
Houston Pre-Christmas
***********************
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 :)
Christmas plans
*****************
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.
Sunday, December 14, 2008
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!!!
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
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.
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.
Tuesday, December 2, 2008
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.
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.
Friday, November 14, 2008
Some Friday night cuteness....
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.
Monday, November 10, 2008
In a holding pattern
I haven't posted in about a week. Really, nothing significant has been going on and I don't feel like I have a whole lot to say. I'd hate to bore y'all.
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....
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....
Wednesday, October 22, 2008
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!
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!
Saturday, October 18, 2008
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.
Thursday, October 16, 2008
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.
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 7, 2008
Brooklyn's head
Over the weekend, my mom noticed that Brooklyn's head was more flat than it had been before. We had discussed the flatness with Dr. A before, and he had said that although the back of Brooklyn's head was flat, he wasn't too worried about it because it was not asymmetrical. Well, on Sunday we saw that it had become somewhat asymmetrical - the right side stuck out more and was making her right ear stick out a different direction than her left one. I also had noticed a little pea-sized knot on the back of her skull on Saturday, but didn't worry too much about it at the time.
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.
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.
Friday, October 3, 2008
Bouncing off the walls!!!
Last night, I told my hubby at 8:45 that I wanted to take a nap for about an hour because I just couldn't hold my eyes open anymore. I really hate doing this in the evenings because that's my time with Brooklyn, but she was taking a nap and I figured I would too before her next feeding.
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!
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!
Friday, September 19, 2008
The go ahead
Dr. A called me late yesterday afternoon. He had not talked to the gastroenterologist, but had talked to Dr. G2, the pulmonologist. Dr. G2 was glad that Brooklyn had gained some weight, but said that it did not change the fact that she needed the bronchoscopy. Because Brooklyn's breathing has not improved, he is concerned about some other types of airway obstructions/impingements/masses. With just plain old tracheomalacia, we SHOULD be seeing improvement or signs that it is going away by now, but we are not. All of those things Dr. G2 wants to look for sound really frightening, but I am trying to put them out of my mind.
So all plans for the surgical procedures will remain the same unless her breathing AND weight drastically improve this month.
On another note...a monthly visitor that I hadn't had to deal with in 15 months made an appearance at work today. I was not exactly prepared for that. Gah, I hate uninvited guests. I was hoping Aunt Flo would stay away until I was finished breastfeeding. I have not missed her in the least. Oh well.
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.
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