It has been nearly 2 weeks since Brooklyn had her appointment with Dr. G2, her pulmonologist, so I am way overdue in writing this post.
Okay. Brooklyn weighed just over 21 pounds and they said she was 30 inches long (but I don't think she shrunk an inch since she saw Dr. A a few days prior!) Her oxygenation was 99%, and the nurse didn't tell me what her respirations were :(.
Dr. G2 was happy that increasing Brooklyn's dosage of Bethanechol has helped her stridor so much. It was literally two and a half to three weeks after our last appointment with him in June, when he increased her dose 0.3 ml, that her stridor pretty much disappeared at night. It was pretty incredible. It caused a lot of anxiety for us at first, because hearing every noisy breath she took at night was our "normal," but we have adjusted and can sleep without hearing it now.
Brooklyn has had a runny nose for about a month now, and Dr. G2 thinks the postnasal drip may be cauing her to cough more thn she used to. So now we have to give her a nasal spray once per day. She hated it at first, and I wasn't surprised. I mean, the girl can't stand when I try to wipe her runny nose. But now she doesn't mind it and even thinks it's funny to sniff really loud a bunch of times after we put the spray in her nose.
Dr. G2's main concern was that Brooklyn's stridor still gets pretty loud with activity. She gets noisy when she is running around and playing and even when she is doing things that aren't particularly exerting or strenuous, like picking up toys or getting her books out of her basket. Her respirations get a lot higher and she gets much noisier any time she is being active. I don't think that her stridor is as loud as it used to be, but it's still there, and she's still obviously struggling.
Brooklyn also coughs and starts choking out of nowhere, even if she hasn't been eating or drinking for a long time. Sometimes we are just riding in the car and she will just start choking, and I have no idea why this is going on, if it is the reflux or if it is something else. She hadn't actually been "spitting up" with the reflux for a while, she had been refluxing and swallowing everything back down. Over the past week, she has started spitting up again. The reason why I explain this in conjunction with her pulmonologist's visit is that all of her doctors have pointed out that everything inside of her throat/airway area is just weak...it's all connected...and there doesn't seem to be a great deal of improvement.
Dr. G2 said that he is concerned that she may be exhibiting some signs of "airway reactivity." I didn't understand what this meant, and all of my Googling didn't really help me either. A nurse friend of mine said that her son has it, and it means that he has asthma-like symptoms and has to have nebulizer treatments and such any time that he has a cold or is sick. So is it basically a chronic respiratory condition? Forever? That's really discouraging to me...I had hoped that once Brooklyn outgrew her laryngomalacia, we would be done with all of this for good. Does anyone know anything about airway reactivity or reactive airway disease? Can y'all help me understand what this is? I know I have a few nurse bloggy friends out there ;).
Anyway, Dr. G2 started Brooklyn on steroid inhaler, Flovent. It says on her report that it will "provide anti-inflammatory control" and "hopefully decrease the noise and work of breathing that she has when she exercises." She has to take two puffs twice per day using this lovely little contraption called the Aerochamber. It's like a tube with an oxygen mask and a one-way valve on one side and a hole for the inhaler to fit in on the other side. They gave Dave and I a "training session" at the doctor's office, and oh my, does Brooklyn ever despise that thing. The training session consisted of me holding Brooklyn's body and head still, Dave holding her arms down, and the nurse holding the Aerochamber on her face while Brooklyn screamed and did her best to flail and twist away from the Evil Torture Device. We had to watch for the valve to go in and out six times. Once it finally did, the nurse removed the mask from Brooklyn's face. I leaned back in the chair and cheered for Brooklyn. "Okay," said the nurse. "Let's do the second puff." Oh, crap. And then there was round two of the battle royale.
The inhaler has been terrible for us. It was a horrible battle for several days, then seemed to improve for a few days. We even had two or three days with no tears at all!!! But...now she is back to kicking, fighting, trying to pull the inhaler out of the Aerochamber, trying to stick her fingers in the valve, trying to run away, twisting away from me, shaking her head back and forth, trying to puff the inhaler extra times....it is no fun at all for anyone involved. We have tried to make it as "fun" as we can...we put it on our faces, we let her put the Aerochamber on her dolls and bears, we breathe loudly along with her...I don't know. It sucks. It's like the return of the evil nebulizer. She never did get used to that thing, it always scared her. I was so happy when we were able to return it to the home health agency!!
So that was our visit with Dr. G2. He said that he was pleased with Brooklyn's progress, but....you know. Why can't we be done with this? It seems like with every appointment, we are adding and increasing medications, when we were told so long ago that Brooklyn would be so far beyond all of this by now. We go back in 3 months.
Showing posts with label severe reflux. Show all posts
Showing posts with label severe reflux. Show all posts
Tuesday, September 29, 2009
Tuesday, September 15, 2009
ECI intake and Pedi visit
This time last year, it was pretty normal for Brooklyn to have tons of appointments, but our calendar doesn't usually look like this anymore! Anyway, I have a lot to catch y'all up on. This past week, Brooklyn had her Early Childhood Intervention (ECI) intake appointment, an appointment with Dr. A, and her evaluation with the developmental specialist and speech therapist from ECI (I'm going to do a separate post on the ECI evaluation.) And tomorrow she sees her pulmonologist, Dr. G2.
Wednesday, 9/9 - ECI intake.
It took about six weeks to get this appointment for Brooklyn. I did a self-referral on the advice of a friend who is a nurse back when Brooklyn was not speaking at all.
The developmental coordinator came to our house Wednesday. She had told me over the phone that the intake would take about 20 minutes and that we were going to go over my pregnancy, Brooklyn's birth, her medical history, and her development. I thought it was really funny that the lady thought it would only take 20 minutes to go over all of Brooklyn's medical history...and I was right, she was there for over an hour.
Brooklyn warmed up to her immediately and really seemed to like her. She didn't determine Brooklyn's eligibility for services or anything at that point, it was strictly an information-gathering type of appointment. She told us she would return with the speech therapist to evaluate Brooklyn the following Monday. She also took note of Brooklyn's head tilt and said that she would talk to their physical therapist about the possiblity of coming to evaluate Brooklyn at the same time as well.
One thing that I think is really great about ECI is that they are going to come to our house for everything...so, no other kids, no waiting rooms, no germs, no sickies!!!
Friday, 9/11 - 18 month appointment with Dr. A, Brooklyn's pediatrician.
Brooklyn weighed 20 pounds, 10 ounces (5th percentile) and was 31 inches tall (almost 25th percentile). This showed up as a weight loss of almost a pound since last month. But I told Dr. A that there had been a different nurse there at our last appointment, and she had Brooklyn stand on the older kids' scale fully clothed, instead of laying her on the baby scale in her diaper like they normally do. Dr. A said that the substitute nurse should have listened to me when I tried to tell her about how they normally weigh Brooklyn, so he marked last month's weight as "falsely elevated."
Dr. A said that Brooklyn's weight gain is not great, as usual, but it is "adequate." We will keep her on 2 bottles of increased calorie formula per day for now to help her gain weight.
He was very happy, as of course we are, that Brooklyn is starting to say some words again. She has about eight words she says now (baby, bear, bink, bib, ball, yeah, this, eye, dada...oh, UPDATE...this weekend marked the return of MAMA!!!!) He was very encouraged that she is making progress again, and said, "I don't know what happened to make her regress like that. To be honest, we'll probably never know what happened." According to his standards, Brooklyn is almost back in the range of normal speech for her age.
We told Dr. A about the ECI evaluation that we had scheduled. He really doesn't think that speech therapy is all that helpful in children younger than two, but definitely doesn't feel like it hurts. He thinks that ECI will be able to help Brooklyn more with her head tilt than with anything else. He does think she needs some physical therapy for it at this point. He said that she can correct it for short periods of time, she just usually doesn't. Another thing that he said we will have to keep an eye on is that babies with head tilts can have vision problems - sometimes one of their eyes will not focus as well as the other eye because they don't look at things straight on. He said that around her second birthday, he will refer her to a pediatric optometrist to make sure everything is okay with her eyes, but right now, he doesn't see any signs of problems there.
Brooklyn had to get her Hib vaccine and her flu shot. I asked whether she would be getting Synagis shots again this fall and Dr. A said that he would call Dr. G2 to discuss it with him. He doesn't feel like RSV would be as detrimental to Brooklyn's health this season as it would have been last year, even though she has not outgrown her laryngomalacia. He is not sure how much our insurance would fight us over it either.
I guess we will find out more at Brooklyn's appointment with Dr. G2 tomorrow.
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.
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.
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! :)
Saturday, February 14, 2009
Rest your little head.....
To sum up Brooklyn's sleeping situation, she has had to sleep in her car seat in our room since she was a couple of weeks old on the advice of her doctors. First it was because she had terrible reflux and they wanted to keep her elevated. Then when her breathing problems began, her pulmonologist told us we were to continue because her trachea would collapse down/obstruct if we allowed her to lie flat on her back to sleep. Anyway, the more she has grown, I believe she has become increasingly uncomfortable in her car seat....she can't really move around or stretch like older babies need to do. Another concern was that her car seat was flattening the back of her head. Her pulmonologist told us in December to get a Tucker sling through her gastroenterologist. A Tucker sling would allow her to sleep in her never-used crib and let her stretch and move a little more, so that hopefully she would be more comfortable. About a month ago, Hope sent me the Tucker sling that Ava had outgrown so that we wouldn't have to buy one. Then we saw her gastroenterologist and he wanted us to get the wedge for the Tucker sling. So, several weeks of phone tag with nurses and home health agencies and calls to my insurance company followed. This week we got the wedge.
Tonight, we decided to try it out for the first time. Brooklyn was really, really tired, but was freaked out by being put in the sling for the first time. We calmed her down and then moved her and the wedge to her crib. That did not go over well with her.
I understand completely. She has never, ever spent a night alone in her room. She is always right by Mommy and Daddy's bed, and sometimes even on the bed in the car seat, on the nights that my husband works overnight.
I tried my best to calm her down, and it would work until I moved the slightest bit away from her. Then she would get so upset all over again, crying her little eyes out. Which hurts a lot, because I don't want to do that to her. I guess my husband saw that I was getting emotional about it, so he told me to go take my shower and he would take care of her. I took an extra long shower...trying to get rid of the stress, I guess.
Thirty minutes passed and I returned to Brooklyn's room. She was sobbing. Sad, pitiful cries. "Nothing works," said my husband. "I can't get her to calm down. She's just angry." "She's not angry," I told him. "She's scared. She's never done this before." He left the room.
That is the thing that I really hate about the whole situation: my sweet baby is scared. She's afraid of being in her room by herself, she's afraid of being alone, she's scared of sleeping somewhere different. I don't want my Baby Bear to be scared. I don't want her to know fear. I can't stand to think of her feeling that way. The idea of it just breaks my heart into a thousand pieces. And the thought that I am causing the fear...well, that's a million times worse.
I leaned over her crib and put my head against her sweaty little forehead. I wiped the tears off of her sweet, soft cheeks. She clutched the fingers on one of my hands, and I stroked her hair with my other hand. Brooklyn settled down, her stridor loud from all the crying. She drew in big, jagged gasps of air, trying to breathe normally again. At first, I tried to soothe her by just telling her that she was okay....Mommy is here....it's all right, sweet girl....I'm not leaving you.
Then I decided to tell her why she would be okay.
It's all right, sweet bear. I know it's scary, and I'm sorry. But you're such a big girl, and you're doing so good. It's hard to be a big girl, isn't it? But look at you in your big girl bed. I'm so proud of you. This is gonna make you sleep better, okay?
You're such a brave girl. I wish I was brave like you. All of the times you've had to go to the hospital and to all those doctors....all of those tests you've had to have...you've been so strong. I would have been so scared. I was so scared. But you're such a big strong girl. Did you know that? You are. I'm so proud of you, Baby Bear. I love you so much. You're my sweet baby girl. You're gonna be okay. I won't leave you. I'll be right in my room. I'll be right here when you need me. You're doing so good. You're so brave, Baby Bear.
Then I was wiping my own tears off her plush little cheeks.
I slowly moved my forehead away from hers. I gently lifted my hand off of her head, and finally set her hand down next to her side. She relaxed and released my fingers.
I crept out of her room.
And now she sleeps.
My husband smiled and excitedly pointed at the baby monitor, listening to the rhythmic sound of Brooklyn's stridor when she is asleep. "What did you do? She is out."
"We just talked a little."
I sat down on the couch and exhaled deeply. I felt relieved and somewhat accomplished, but still so sad.
Now we will see whether I can sleep with her in another room. The monitor will lie right by my pillow. I have so much anxiety about her breathing. In my mind, I have more control over it if I am right there beside my baby.
This motherhood thing. It is not for the faint of heart, is it?
Tonight, we decided to try it out for the first time. Brooklyn was really, really tired, but was freaked out by being put in the sling for the first time. We calmed her down and then moved her and the wedge to her crib. That did not go over well with her.
I understand completely. She has never, ever spent a night alone in her room. She is always right by Mommy and Daddy's bed, and sometimes even on the bed in the car seat, on the nights that my husband works overnight.
I tried my best to calm her down, and it would work until I moved the slightest bit away from her. Then she would get so upset all over again, crying her little eyes out. Which hurts a lot, because I don't want to do that to her. I guess my husband saw that I was getting emotional about it, so he told me to go take my shower and he would take care of her. I took an extra long shower...trying to get rid of the stress, I guess.
Thirty minutes passed and I returned to Brooklyn's room. She was sobbing. Sad, pitiful cries. "Nothing works," said my husband. "I can't get her to calm down. She's just angry." "She's not angry," I told him. "She's scared. She's never done this before." He left the room.
That is the thing that I really hate about the whole situation: my sweet baby is scared. She's afraid of being in her room by herself, she's afraid of being alone, she's scared of sleeping somewhere different. I don't want my Baby Bear to be scared. I don't want her to know fear. I can't stand to think of her feeling that way. The idea of it just breaks my heart into a thousand pieces. And the thought that I am causing the fear...well, that's a million times worse.
I leaned over her crib and put my head against her sweaty little forehead. I wiped the tears off of her sweet, soft cheeks. She clutched the fingers on one of my hands, and I stroked her hair with my other hand. Brooklyn settled down, her stridor loud from all the crying. She drew in big, jagged gasps of air, trying to breathe normally again. At first, I tried to soothe her by just telling her that she was okay....Mommy is here....it's all right, sweet girl....I'm not leaving you.
Then I decided to tell her why she would be okay.
It's all right, sweet bear. I know it's scary, and I'm sorry. But you're such a big girl, and you're doing so good. It's hard to be a big girl, isn't it? But look at you in your big girl bed. I'm so proud of you. This is gonna make you sleep better, okay?
You're such a brave girl. I wish I was brave like you. All of the times you've had to go to the hospital and to all those doctors....all of those tests you've had to have...you've been so strong. I would have been so scared. I was so scared. But you're such a big strong girl. Did you know that? You are. I'm so proud of you, Baby Bear. I love you so much. You're my sweet baby girl. You're gonna be okay. I won't leave you. I'll be right in my room. I'll be right here when you need me. You're doing so good. You're so brave, Baby Bear.
Then I was wiping my own tears off her plush little cheeks.
I slowly moved my forehead away from hers. I gently lifted my hand off of her head, and finally set her hand down next to her side. She relaxed and released my fingers.
I crept out of her room.
And now she sleeps.
My husband smiled and excitedly pointed at the baby monitor, listening to the rhythmic sound of Brooklyn's stridor when she is asleep. "What did you do? She is out."
"We just talked a little."
I sat down on the couch and exhaled deeply. I felt relieved and somewhat accomplished, but still so sad.
Now we will see whether I can sleep with her in another room. The monitor will lie right by my pillow. I have so much anxiety about her breathing. In my mind, I have more control over it if I am right there beside my baby.
This motherhood thing. It is not for the faint of heart, is it?
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.
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!!!
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.
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.
Thursday, September 18, 2008
6 month visit
Brooklyn had her 6 month check up yesterday.
As usual, I’ll start with the good news...she weighed in at 12 pounds, 3 ounces! 7 ounces in one week! I don’t recall that ever happening for us. That means that our feeding plan is working now. Hooray! She is hovering around the 3rd percentile on the growth chart right now. Dr. A said that if she continues at this rate, she will weigh about 17 pounds on her first birthday. But all things considered, he is satisfied with that as long as Brooklyn continues to gain and doesn’t get to a point where she isn’t gaining any weight at all again. She was 25 inches long...25th percentile! Woohoo!
Developmentally, she is fine. She cannot sit on her own yet and only rolls occasionally, but has rolled both ways. She LOVES to stand up though. Dr. A was examining Brooklyn, and when he checked her motor skills, he started to pull her up to stand and she pretty much did it on her own. She loves that. Then he was trying to get her to sit, but all she wanted to do was stand back up...she even got on her tippy-toes once! She thought that it was a fun game and was grinning at Dr. A the whole time. Dr. A said that she is doing fine with her development. He said, “Do I have plenty of 2 month olds in my practice who are bigger than her? Yes. But I also have 20-pound kids her age who can’t do some of the things she is doing.” So that was good. He said that actually only about 50% of kids can sit unassisted at this age. He said that we can sit Brooklyn up in her Boppy more to help her gain “trunk strength” and hopefully she will be able to sit by herself soon. She likes to pull herself up to a sitting position when she is being held, she just doesn’t have the balance thing down yet.
I was afraid that they wouldn’t give her the 6-month immunizations because she has had a cough for the past couple of days, but they said that it was okay because she was not running a fever. She cried for probably less than a minute when she got her shots...I promptly gave her a bottle and all was forgotten.
Now here is what I got upset about. Dr. A was going over the tests Brooklyn has had since we last saw him and discussing our visits with the specialists and what the plan is now. He said that he thinks that she will have the endoscopy/bronchoscopy in October as planned and they probably won’t find much of anything. He said that at that point we should consider just “taking a break from all this.” Basically, he told me that he wants an answer too, but that we have to know when enough is enough and know when to leave Brooklyn alone because all of the tests and procedures are hard on her.
Okay. So...I am supposed to put Brooklyn through this scope procedure next month, which I am already scared of, and you don’t think it’s going to tell us anything? What is the point of that??? Why am I going to make her do that if you think it’s pointless? If you think it will be “essentially normal”?
And then we are supposed to just sit back and let things just be...when we have no more answers than we have ever had?
“Something is wrong,” I said. “No one has ever denied that, but no one can tell us what that is.”
“Yes,” said Dr. A. “Something is wrong. But what if it is tracheomalacia that is aggravated by reflux and all of that makes her burn so many calories that she can’t gain weight.”
Well, what if?
Ummmm....that was what we were told that the problem was MONTHS ago. Why have we been doing all of these tests? Clearly, no progress has been made, and now we are just going to go back to assuming the problem is what you originally thought?
I told Dr. A my fears about the scope procedure, and how I didn’t know now if I wanted to make her go through with it. He said that he would speak with Dr. G2 and Dr. R and would see if perhaps it could be postponed if she continues to gain weight at a good rate over the next few weeks. He said that he would call me last night or “first thing” this morning. As per usual, I have heard nothing yet.
I’m just so damn frustrated and confused. I am conflicted about what should be done. I don’t know what the right choice is, I don’t know what the right thing to do for my baby is. I am so confused by a doctor who wants to do every test in the book one month and the next month wants to call it all off and do nothing, when absolutely nothing seems to have been accomplished. I am afraid of the unknown...of the idea that she has these breathing problems for some undetermined reason. That makes me so uneasy. If it’s unknown...how do I know she isn’t just going to die? How can I fall asleep and believe that I will have her beautiful smiling face greeting me each morning? And how could I ever live with myself for not doing something about it, for not working hard and advocating for her to find out what is wrong? But what if they keep doing all of these tests and something happens to her...what if they hurt her and she has some horrible complication or side effect? I don’t want her to be subjected to all of this so young. But I am so afraid of what is wrong. I can’t lose her. My anxiety is so great this morning that I feel like a 500-pound weight is sitting on my chest, and my heart is beating a thousand times a minute to try to push the weight off of me. I have a million questions racing around and colliding inside of my brain, and I suspect that many of them will remain unanswered.
As usual, I’ll start with the good news...she weighed in at 12 pounds, 3 ounces! 7 ounces in one week! I don’t recall that ever happening for us. That means that our feeding plan is working now. Hooray! She is hovering around the 3rd percentile on the growth chart right now. Dr. A said that if she continues at this rate, she will weigh about 17 pounds on her first birthday. But all things considered, he is satisfied with that as long as Brooklyn continues to gain and doesn’t get to a point where she isn’t gaining any weight at all again. She was 25 inches long...25th percentile! Woohoo!
Developmentally, she is fine. She cannot sit on her own yet and only rolls occasionally, but has rolled both ways. She LOVES to stand up though. Dr. A was examining Brooklyn, and when he checked her motor skills, he started to pull her up to stand and she pretty much did it on her own. She loves that. Then he was trying to get her to sit, but all she wanted to do was stand back up...she even got on her tippy-toes once! She thought that it was a fun game and was grinning at Dr. A the whole time. Dr. A said that she is doing fine with her development. He said, “Do I have plenty of 2 month olds in my practice who are bigger than her? Yes. But I also have 20-pound kids her age who can’t do some of the things she is doing.” So that was good. He said that actually only about 50% of kids can sit unassisted at this age. He said that we can sit Brooklyn up in her Boppy more to help her gain “trunk strength” and hopefully she will be able to sit by herself soon. She likes to pull herself up to a sitting position when she is being held, she just doesn’t have the balance thing down yet.
I was afraid that they wouldn’t give her the 6-month immunizations because she has had a cough for the past couple of days, but they said that it was okay because she was not running a fever. She cried for probably less than a minute when she got her shots...I promptly gave her a bottle and all was forgotten.
Now here is what I got upset about. Dr. A was going over the tests Brooklyn has had since we last saw him and discussing our visits with the specialists and what the plan is now. He said that he thinks that she will have the endoscopy/bronchoscopy in October as planned and they probably won’t find much of anything. He said that at that point we should consider just “taking a break from all this.” Basically, he told me that he wants an answer too, but that we have to know when enough is enough and know when to leave Brooklyn alone because all of the tests and procedures are hard on her.
Okay. So...I am supposed to put Brooklyn through this scope procedure next month, which I am already scared of, and you don’t think it’s going to tell us anything? What is the point of that??? Why am I going to make her do that if you think it’s pointless? If you think it will be “essentially normal”?
And then we are supposed to just sit back and let things just be...when we have no more answers than we have ever had?
“Something is wrong,” I said. “No one has ever denied that, but no one can tell us what that is.”
“Yes,” said Dr. A. “Something is wrong. But what if it is tracheomalacia that is aggravated by reflux and all of that makes her burn so many calories that she can’t gain weight.”
Well, what if?
Ummmm....that was what we were told that the problem was MONTHS ago. Why have we been doing all of these tests? Clearly, no progress has been made, and now we are just going to go back to assuming the problem is what you originally thought?
I told Dr. A my fears about the scope procedure, and how I didn’t know now if I wanted to make her go through with it. He said that he would speak with Dr. G2 and Dr. R and would see if perhaps it could be postponed if she continues to gain weight at a good rate over the next few weeks. He said that he would call me last night or “first thing” this morning. As per usual, I have heard nothing yet.
I’m just so damn frustrated and confused. I am conflicted about what should be done. I don’t know what the right choice is, I don’t know what the right thing to do for my baby is. I am so confused by a doctor who wants to do every test in the book one month and the next month wants to call it all off and do nothing, when absolutely nothing seems to have been accomplished. I am afraid of the unknown...of the idea that she has these breathing problems for some undetermined reason. That makes me so uneasy. If it’s unknown...how do I know she isn’t just going to die? How can I fall asleep and believe that I will have her beautiful smiling face greeting me each morning? And how could I ever live with myself for not doing something about it, for not working hard and advocating for her to find out what is wrong? But what if they keep doing all of these tests and something happens to her...what if they hurt her and she has some horrible complication or side effect? I don’t want her to be subjected to all of this so young. But I am so afraid of what is wrong. I can’t lose her. My anxiety is so great this morning that I feel like a 500-pound weight is sitting on my chest, and my heart is beating a thousand times a minute to try to push the weight off of me. I have a million questions racing around and colliding inside of my brain, and I suspect that many of them will remain unanswered.
Saturday, September 13, 2008
The weight on my shoulders
Wednesday afternoon, we took Brooklyn to the pediatrician for her weekly weight check.
11 pounds, 12 ounces. And she turned 6 months old that day.
She is growing...just much more slowly than everyone wants.
Last week at the gastroenterologist, she nurse told us that Brooklyn weighed "just under 12 pounds." As it turns out, she was 11 pounds and 8 ounces, and the nurse rounded the numbers off. Which is not a big deal at all if you are dealing with, say, a ten-year-old child...but an infant with weight gain problems? Yeah, you shouldn't round up to the nearest pound in that case.
Our pediatrician was actually out of town this week, so at our weight check visit, we had to deal with a different nurse and different pediatrician. The nurse seemed somewhat alarmed and told us that Brooklyn had gained only 4 ounces since August 18th (3 1/2 weeks). They want her to gain between 4 and 7 ounces per week. She went and consulted with the pediatrician who was there, who really didn't want to get involved because Brooklyn already has so many doctors. They told me to call her gastroenterologist (Dr. R) ASAP.
The nurse at Dr. R's called me back Thursday morning. She really freaked me out at first by telling me that Dr. R was considering hospitalizing Brooklyn to have her fed through an NG tube (through her nose). She asked me a few questions then said she would call me back that afternoon after she talked to Dr. R....leaving me to worry for hours about the prospect of hospitalization. I really don't understand why they would even consider this...if Brooklyn was refusing to eat or someothing, okay...but she does eat. She just doesn't gain weight properly. The doctors need to figure out what is the matter that is causing her not to gain and fix it, not force feed her and put her through more pain!
Anyway, the nurse finally called me back. No hospital stay for now. They have changed Brooklyn's feeding plan again...more cereal in the bottles, even more formula powder in them as well, to increase her calorie intake again. Dr. R. is also increasing the number of times per day she is taking her Reglan, because she is still having problems with the reflux and lots of spitting up.
Oh...they also told me that the endoscopy and bronchoscopy will not be until October 17th because that is the first date that the gastroenterologist, pulmonologist, and ENT could coordinate their surgical schedules. So here we sit waiting, again. It's quite discouraging when you know that no progress will be made toward finding out what is wrong for over a month...
My baby can't grow like she should be able to. And I can't seem to do anything to help her. She is so light, and my fears are so heavy.
11 pounds, 12 ounces. And she turned 6 months old that day.
She is growing...just much more slowly than everyone wants.
Last week at the gastroenterologist, she nurse told us that Brooklyn weighed "just under 12 pounds." As it turns out, she was 11 pounds and 8 ounces, and the nurse rounded the numbers off. Which is not a big deal at all if you are dealing with, say, a ten-year-old child...but an infant with weight gain problems? Yeah, you shouldn't round up to the nearest pound in that case.
Our pediatrician was actually out of town this week, so at our weight check visit, we had to deal with a different nurse and different pediatrician. The nurse seemed somewhat alarmed and told us that Brooklyn had gained only 4 ounces since August 18th (3 1/2 weeks). They want her to gain between 4 and 7 ounces per week. She went and consulted with the pediatrician who was there, who really didn't want to get involved because Brooklyn already has so many doctors. They told me to call her gastroenterologist (Dr. R) ASAP.
The nurse at Dr. R's called me back Thursday morning. She really freaked me out at first by telling me that Dr. R was considering hospitalizing Brooklyn to have her fed through an NG tube (through her nose). She asked me a few questions then said she would call me back that afternoon after she talked to Dr. R....leaving me to worry for hours about the prospect of hospitalization. I really don't understand why they would even consider this...if Brooklyn was refusing to eat or someothing, okay...but she does eat. She just doesn't gain weight properly. The doctors need to figure out what is the matter that is causing her not to gain and fix it, not force feed her and put her through more pain!
Anyway, the nurse finally called me back. No hospital stay for now. They have changed Brooklyn's feeding plan again...more cereal in the bottles, even more formula powder in them as well, to increase her calorie intake again. Dr. R. is also increasing the number of times per day she is taking her Reglan, because she is still having problems with the reflux and lots of spitting up.
Oh...they also told me that the endoscopy and bronchoscopy will not be until October 17th because that is the first date that the gastroenterologist, pulmonologist, and ENT could coordinate their surgical schedules. So here we sit waiting, again. It's quite discouraging when you know that no progress will be made toward finding out what is wrong for over a month...
My baby can't grow like she should be able to. And I can't seem to do anything to help her. She is so light, and my fears are so heavy.
Wednesday, September 3, 2008
Nothing yet
Yesterday morning, I woke up and it was raining really hard. David and Brooklyn were still asleep. I went outside and saw how much rain there was, how saturated the ground was, and how muddy our yard was. I started thinking about how bad the interstate is during rainy weather. The ruts worn into the road and how easy it is to hydroplane all over the place. The multitude of 18-wheelers that spray water onto your windshield so that you can't see where you're going. The aggressive drivers in Dallas and how they will cut across five lanes of traffic and slam their brakes on in front of you regardless of the weather. I started having an anxiety attack, picturing us in a wreck, our car rolled upside down, and all of the horrible things that could happen to Brooklyn if we did have a wreck.
I fretted for a while. I called my mom and asked her if I should try to reschedule Brooklyn's appointment. She gave me reasons why I should and reasons why I shouldn't and really wasn't much help. I called the pediatric gastroenterologist (Dr. R) and asked the scheduler when the next appointment would be if I did reschedule. She said September 23. I woke Dave up and asked him what we should do. He thought that we should stay home because seeing a doctor wasn't worth getting into a wreck with Brooklyn in the car. "If it was just us, that would be one thing," he said. "Brooklyn has enough problems, she doesn't need anything else to happen. Just call and tell then to give you that appointment for the 23rd."
But I felt really bad about making Brooklyn wait 3 more weeks with nothing else planned at this time. She had a really bad weekend with her reflux. I didn't want her to just wait when nothing is getting better. I called Dr. A's office and his nurse told me that Dr. A really wanted us to go to the appointment. Dr. A thought it was really important and didn't want it delayed. "Okay. We'll do it then."
By that time, I had wasted so much time trying to figure out what to do that it was practically time for us to leave. I told Dave to get out of bed and we rushed around getting Brooklyn fed and changed, giving her her medicines, and packing her diaper bag. The midday news show came on and showed that Hurricane Gustav had shifted northward and wasn't going to affect our area nearly as much as previously predicted. Whew!
The ride to Dallas was rainy and windy and messy, but there were no torrential downpours and people were actually using their driving manners. We arrived about 5 minutes late for our appointment, but I had called them about a half hour prior to let them know we might be a little behind due to bad weather. Last week, they had warned me that we would probably have to wait a long time to see Dr. R because we were a "work-in appointment." But they called us back about 10 minutes after I finished filling out Brooklyn's paperwork.
Brooklyn weighed just shy of 12 pounds. She was still 24 inches long. I was happy that there was some weight gain, even if it's not considered much. For us it's a pretty big deal at this point.
Dr. R was very nice. He spent a lot of time taking down Brooklyn's full medical history and asked us lots of questions about her. He did a brief examination of her. He agrees with Dr. A and Dr. G2, that the ENT is wrong and that Brooklyn's respiratory problems are not just caused by a really bad case of reflux. He thinks that her breathing problems are probably aggravated by the reflux, so he increased one of her reflux meds. The other 2 are already maximum doses for her size. He said that he is not sure what her respiratory issue is, but mentioned tracheomalacia and allergies to formula (she is breastfed about 50% of the time now and gets formula the rest of the time.)
Brooklyn has to have an endoscopy (scope of her stomach). Dr. R talked to Dr. G2, and Dr. G2 also wants to her to have a bronchoscopy (scope of her lower airway). They are going to try to coordinate their surgery schedules to do both procedures at the same time, so that Brooklyn doesn't have to be admitted to the hospital and be put under anesthesia twice. The surgical department at the children's hospital is supposed to call me this week to set up a pre-op appointment and the procedures. Dave asked if the pre-op appointment could be the same day as the procedure, and the nurse said no, due to Brooklyn's respiratory problems/stridor. I'm not sure why or what goes on at that appointment. They gave me a hospital "welcome packet" that explains some about what is going to happen before and after surgery, but I haven't gotten to read it yet. Anyway, the follow-up appointment with Dr. R is in 6 weeks, and the procedures will be done before then.
That's where we're at right now. More waiting. More tests. Including the bronchoscopy, which all the doctors have been trying to avoid up to this point because of Brooklyn's size and the risks.
I almost forgot to tell you how good and brave Brooklyn was. But then, she pretty much always is with all of this medical stuff. She is a tough little girl. I am so proud of her and I love her so much. I'm ready to not have to subject her to all of this anymore.
I fretted for a while. I called my mom and asked her if I should try to reschedule Brooklyn's appointment. She gave me reasons why I should and reasons why I shouldn't and really wasn't much help. I called the pediatric gastroenterologist (Dr. R) and asked the scheduler when the next appointment would be if I did reschedule. She said September 23. I woke Dave up and asked him what we should do. He thought that we should stay home because seeing a doctor wasn't worth getting into a wreck with Brooklyn in the car. "If it was just us, that would be one thing," he said. "Brooklyn has enough problems, she doesn't need anything else to happen. Just call and tell then to give you that appointment for the 23rd."
But I felt really bad about making Brooklyn wait 3 more weeks with nothing else planned at this time. She had a really bad weekend with her reflux. I didn't want her to just wait when nothing is getting better. I called Dr. A's office and his nurse told me that Dr. A really wanted us to go to the appointment. Dr. A thought it was really important and didn't want it delayed. "Okay. We'll do it then."
By that time, I had wasted so much time trying to figure out what to do that it was practically time for us to leave. I told Dave to get out of bed and we rushed around getting Brooklyn fed and changed, giving her her medicines, and packing her diaper bag. The midday news show came on and showed that Hurricane Gustav had shifted northward and wasn't going to affect our area nearly as much as previously predicted. Whew!
The ride to Dallas was rainy and windy and messy, but there were no torrential downpours and people were actually using their driving manners. We arrived about 5 minutes late for our appointment, but I had called them about a half hour prior to let them know we might be a little behind due to bad weather. Last week, they had warned me that we would probably have to wait a long time to see Dr. R because we were a "work-in appointment." But they called us back about 10 minutes after I finished filling out Brooklyn's paperwork.
Brooklyn weighed just shy of 12 pounds. She was still 24 inches long. I was happy that there was some weight gain, even if it's not considered much. For us it's a pretty big deal at this point.
Dr. R was very nice. He spent a lot of time taking down Brooklyn's full medical history and asked us lots of questions about her. He did a brief examination of her. He agrees with Dr. A and Dr. G2, that the ENT is wrong and that Brooklyn's respiratory problems are not just caused by a really bad case of reflux. He thinks that her breathing problems are probably aggravated by the reflux, so he increased one of her reflux meds. The other 2 are already maximum doses for her size. He said that he is not sure what her respiratory issue is, but mentioned tracheomalacia and allergies to formula (she is breastfed about 50% of the time now and gets formula the rest of the time.)
Brooklyn has to have an endoscopy (scope of her stomach). Dr. R talked to Dr. G2, and Dr. G2 also wants to her to have a bronchoscopy (scope of her lower airway). They are going to try to coordinate their surgery schedules to do both procedures at the same time, so that Brooklyn doesn't have to be admitted to the hospital and be put under anesthesia twice. The surgical department at the children's hospital is supposed to call me this week to set up a pre-op appointment and the procedures. Dave asked if the pre-op appointment could be the same day as the procedure, and the nurse said no, due to Brooklyn's respiratory problems/stridor. I'm not sure why or what goes on at that appointment. They gave me a hospital "welcome packet" that explains some about what is going to happen before and after surgery, but I haven't gotten to read it yet. Anyway, the follow-up appointment with Dr. R is in 6 weeks, and the procedures will be done before then.
That's where we're at right now. More waiting. More tests. Including the bronchoscopy, which all the doctors have been trying to avoid up to this point because of Brooklyn's size and the risks.
I almost forgot to tell you how good and brave Brooklyn was. But then, she pretty much always is with all of this medical stuff. She is a tough little girl. I am so proud of her and I love her so much. I'm ready to not have to subject her to all of this anymore.
Tuesday, September 2, 2008
A storm coming
Brooklyn's appointment with the pediatric gastroenterologist is this afternoon. At first I wondered if we even needed to see a gastroenterologist since Brooklyn's main problem seems to be a respiratory issue. But her reflux has been really bad this weekend. She has been soaking through her clothes and burp cloths with her spit up. She has also been having the hour-long inconsolable screaming fits that I thought she had outgrown...several times per day on Saturday and Sunday. This is all in spite of being on maximum doses of Prevacid, Zantac, and Reglan. So I guess it's not a bad idea.
I have a somewhat negative attitude about all of this right now. I'm just very discouraged and I am no longer going into these appointments completely believing that the doctors are going to fix my baby. That's not to say that I am totally hopeless or that I don't believe that God is going to answer all of the prayers that are sent up for Brooklyn every day. I do have hope that someone is going to figure this out....just not as much as before. I guess the best way to explain my feelings about the appointment tomorrow is to say that I am not expecting anything from it. I would like to be pleasantly surprised though. I'm just not expecting it.
I am hoping for good weather for our trip to Dallas today. Tropical Storm Gustav is headed this way and we are under a tropical storm warning. Nothing has happened yet, but at least some very hard rain and winds are on the way. Since Gustav didn't end up being as bad as expected, I'm not quite as worried about this as I was a couple of days ago. The weather people were predicting 10-15 inches of rain here, but now they are saying more like 6 inches. They were also saying that Gustav was going to stall out and be over our area for several days, but now we may only be affected for about 2 days. All I know is, I hate driving on the interstate when it's raining. I have hydroplaned on it one too many times! I'm so, so afraid of getting into a wreck with Brooklyn in the car.
Of course, the hydroplaning won't be much of an issue if we are sitting in bumper-to-bumper traffic. We are on the evacuation route from both Louisiana and Beaumont and have several thousand evacuees in our town right now. Of course they aren't just here - that's not the issue - they're in Dallas and everywhere in between too! I'm not too worried about traffic heading towards Dallas...but on the way home, everyone else may be headed back to their homes that they were evacuated from as well. We'll see. It could be a long trip.
I have a somewhat negative attitude about all of this right now. I'm just very discouraged and I am no longer going into these appointments completely believing that the doctors are going to fix my baby. That's not to say that I am totally hopeless or that I don't believe that God is going to answer all of the prayers that are sent up for Brooklyn every day. I do have hope that someone is going to figure this out....just not as much as before. I guess the best way to explain my feelings about the appointment tomorrow is to say that I am not expecting anything from it. I would like to be pleasantly surprised though. I'm just not expecting it.
I am hoping for good weather for our trip to Dallas today. Tropical Storm Gustav is headed this way and we are under a tropical storm warning. Nothing has happened yet, but at least some very hard rain and winds are on the way. Since Gustav didn't end up being as bad as expected, I'm not quite as worried about this as I was a couple of days ago. The weather people were predicting 10-15 inches of rain here, but now they are saying more like 6 inches. They were also saying that Gustav was going to stall out and be over our area for several days, but now we may only be affected for about 2 days. All I know is, I hate driving on the interstate when it's raining. I have hydroplaned on it one too many times! I'm so, so afraid of getting into a wreck with Brooklyn in the car.
Of course, the hydroplaning won't be much of an issue if we are sitting in bumper-to-bumper traffic. We are on the evacuation route from both Louisiana and Beaumont and have several thousand evacuees in our town right now. Of course they aren't just here - that's not the issue - they're in Dallas and everywhere in between too! I'm not too worried about traffic heading towards Dallas...but on the way home, everyone else may be headed back to their homes that they were evacuated from as well. We'll see. It could be a long trip.
Sunday, August 31, 2008
It's a mystery
Here is Brooklyn having her esophogram on Friday. The esophogram during which the pediatric radiologist told us that Brooklyn does not have a vascular ring.
I have weird feelings about this. I suppose that I should feel nothing but relief. I am relieved. But I am also so damn frustrated.
Don't get me wrong. It's not that I wanted Brooklyn to have a vascular ring. That's not the case. The prospect of surgery on one of her cardiac vessels scared me. I just want to know WHAT is wrong with my baby. Dave and I really thought that they were onto something with the whole vascular ring thing, it all made sense. And the surgery would have fixed it and made both Brooklyn's breathing problems and weight gain issues go away. When Dr. A called me on Thursday before we went for this test, he said, "I really think we are about to get some answers."
Nope. Not yet. Once again, this wasn't it.
Brooklyn's video swallow study was also "fairly normal." She has an "immature suck pattern" in which she sucks about 3 or 4 times and then takes a break. She tires quickly when eating as well. The speech pathologist told us that normal babies her age suck 30 to 40 times before stopping for a break. This is due to her respiratory problems. It does improve somewhat when she is given thicker fluids. But we already give her formula with rice cereal in it, so they didn't really tell us anything we didn't know. The test was quite brief, and she never choked or aspirated during it, so they didn't get to observe that. The speech pathologist gave us some different bottle nipples to try and said, "This will get better when she grows bigger and puts some weight on." But HOW??? How is she supposed to do that when no one can even figure out what's wrong with her? We stayed around Dallas and went to malls and out to eat Friday, and I kept seeing all these 2 and 3 month old babies who are so much bigger than my sweet baby girl. And she will be 6 months old next week.
I am having such a hard time with seeing how Brooklyn's case could possibly be so complicated and so unusual that no one can figure it out. I am sick of running into brick walls. I am so tired of having to put my baby through all of these tests and not getting anything in return. It's getting really difficult to justify the pain, fear, and discomfort that Brooklyn keeps having to endure. I HATE doing this to her. It's worth it if you can find out the problem. If you can tell us what to do to make her better. But it all seems like it is for nothing. Everyone agrees that there is a serious problem...so what is it?
Tuesday, August 19, 2008
Waiting...
I was reading one of my baby development books the other day, and it said, "Your baby will see his/her pediatrician five times during the first year." Haha. You authors are hilarious. We've had more visits than that during the month of August alone.
We were at Dr. A's office until nearly 7 p.m. Monday. He was kind of late seeing us, but I don't mind because he is always so good about spending plenty of time with us and working with us to try to do the best thing for Brooklyn.
Good news first....guess who weighs 11 pounds, 7 ounces!!! Go Baby Bear! I literally clapped my hands and cheered when the numbers came up on the scale. Wow. Dr. A said that Brooklyn is "back on the growth chart...but just barely." I'll take it. It feels like a victory after being completely off the charts the past month or so. We are going to continue the 30-calorie supplements and are also going to start adding cereal to the formula supplements. I hope the weight gain continues.
(***Question: A work friend asked me today if the weight gain was due to the inhaled steroids in Brooklyn's breathing treatments. I honestly hadn't thought of that. I will ask her doctors about it, but does anyone know the answer? If so, is it "real" weight gain? Is it a bad thing for a baby to gain weight from steroid use?)
It appears that Brooklyn's aspiration over the weekend is because her new meds are not working as well as the old ones...and honestly, the old ones didn't do that much for the reflux either. Dr. A called Dr. G2, the pulmonologist, during our appointment. They talked and they both disagree with Dr. M, the ear nose and throat doctor, who thinks that Brooklyn's only problem is a really, really bad case of reflux. Brooklyn is going to keep taking Prevacid and go back on Zantac and Reglan (higher doses this time). The doctors feel that if her breathing problems do not completely disappear over the next few days on these maximum doses of reflux meds, it basically proves that the reflux is not why she has her respiratory issues. So far, no changes.
Dr. A pulled up the images from Brooklyn's upper GI that she had a few months back. He thinks he may see a vascular ring on it (a vein that wraps around and constricts the esophagus and airway). If there really is a vascular ring, it would require surgery, but the surgery should completely eliminate Brooklyn's breathing problems. Dr. A was supposed to have a radiologist as well as Dr. G2 look at the images today and call me back, but I didn't hear anything back from him yet.
Brooklyn's sleep study is Thursday night. I am trying to schedule her video swallow study for Friday morning so that we can take care of both tests in one trip to Dallas. I also did not get a call back from them today. Sigh. Dr. G2 had told Dr. A that this would not be a problem, so I hope we are able to do it. The video swallow study should also help either confirm or deny the presence of a vascular ring.
Oh....Dr. A wrote me a letter last night. It basically listed off all of Brooklyn's medical problems and then recommended that I be allowed to stay home with her for "as little as one month but possibly as long as several months" to take care of her. It explained about all of the specialists she is seeing, upcoming tests, medication regimen, breathing treatments, etc. So now I just have to figure out who to take it to at work and see if they will do anything to help me. I was told by human resources that the sick leave pool was strictly for the employee, not for the employee to care for a dependent. After I tried to explain our situation to the human resources lady, she said that she would check with some of the board members and call me back. That was almost 2 weeks ago. Yet another call I am waiting on...
We were at Dr. A's office until nearly 7 p.m. Monday. He was kind of late seeing us, but I don't mind because he is always so good about spending plenty of time with us and working with us to try to do the best thing for Brooklyn.
Good news first....guess who weighs 11 pounds, 7 ounces!!! Go Baby Bear! I literally clapped my hands and cheered when the numbers came up on the scale. Wow. Dr. A said that Brooklyn is "back on the growth chart...but just barely." I'll take it. It feels like a victory after being completely off the charts the past month or so. We are going to continue the 30-calorie supplements and are also going to start adding cereal to the formula supplements. I hope the weight gain continues.
(***Question: A work friend asked me today if the weight gain was due to the inhaled steroids in Brooklyn's breathing treatments. I honestly hadn't thought of that. I will ask her doctors about it, but does anyone know the answer? If so, is it "real" weight gain? Is it a bad thing for a baby to gain weight from steroid use?)
It appears that Brooklyn's aspiration over the weekend is because her new meds are not working as well as the old ones...and honestly, the old ones didn't do that much for the reflux either. Dr. A called Dr. G2, the pulmonologist, during our appointment. They talked and they both disagree with Dr. M, the ear nose and throat doctor, who thinks that Brooklyn's only problem is a really, really bad case of reflux. Brooklyn is going to keep taking Prevacid and go back on Zantac and Reglan (higher doses this time). The doctors feel that if her breathing problems do not completely disappear over the next few days on these maximum doses of reflux meds, it basically proves that the reflux is not why she has her respiratory issues. So far, no changes.
Dr. A pulled up the images from Brooklyn's upper GI that she had a few months back. He thinks he may see a vascular ring on it (a vein that wraps around and constricts the esophagus and airway). If there really is a vascular ring, it would require surgery, but the surgery should completely eliminate Brooklyn's breathing problems. Dr. A was supposed to have a radiologist as well as Dr. G2 look at the images today and call me back, but I didn't hear anything back from him yet.
Brooklyn's sleep study is Thursday night. I am trying to schedule her video swallow study for Friday morning so that we can take care of both tests in one trip to Dallas. I also did not get a call back from them today. Sigh. Dr. G2 had told Dr. A that this would not be a problem, so I hope we are able to do it. The video swallow study should also help either confirm or deny the presence of a vascular ring.
Oh....Dr. A wrote me a letter last night. It basically listed off all of Brooklyn's medical problems and then recommended that I be allowed to stay home with her for "as little as one month but possibly as long as several months" to take care of her. It explained about all of the specialists she is seeing, upcoming tests, medication regimen, breathing treatments, etc. So now I just have to figure out who to take it to at work and see if they will do anything to help me. I was told by human resources that the sick leave pool was strictly for the employee, not for the employee to care for a dependent. After I tried to explain our situation to the human resources lady, she said that she would check with some of the board members and call me back. That was almost 2 weeks ago. Yet another call I am waiting on...
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