Of course, the fact that we were seeing GI probably had a lot to do with it :p Even though Baby W sees GI for reflux and aspirations, we still talk about poop an awful lot. Pretty sure GIs are just hardwired to talk about it LOL Baby W has a different GI than Iz so we spent some time with Dr A this time around.
Baby W is officially off Prilosec! WooHoo! Dr. A lowered his dose last time we were in (Dec 1) and I asked her about doing a trial completely off to see how he did since even on days when he fought and spit and didn't get a dose, he wasn't really spitting up. She said no problem, see how he does so he hasn't taken any in months :) At first, we had some minor spit up, maybe once or twice a week but its been a few weeks since he's spit up so he has officially outgrown his reflux and the meds are removed from his "currently taking" list. His reflux was so very severe that we didn't expect him to have such a sudden turnaround.
Scheduling didn't work to get his swallow study before our visit so she can't change his thickening consistency or decide if he needs more NMES therapy. Swallow Study is March 27th so a couple weeks to go and then she'll either call or email after she gets the results with the game plan. We go back to see her in 4 months.
Oh, and he was a bit over 22 pounds today and moved up several percentiles on the growth chart :) He's still below 15th percentile but this time last year he wasn't even on the chart so yay for progress, eh?
Showing posts with label reflux. Show all posts
Showing posts with label reflux. Show all posts
Wednesday, March 15, 2017
Saturday, February 4, 2017
Much has happened!
I am shamefully behind (again) on updating so of course there is much to share!
Baby W had another swallow study done in the beginning of December. We were hoping for improvement, perhaps even an end to thickening his liquids but, alas, this was not meant to be. He had gotten worse in some areas, enough that technically he should have moved back to honey thick liquids instead of the nectar he had been on. However, his GI decided to leave him on nectar because she was putting him back into the NMES feeding therapy and he responded so well the last time she felt he could stay on nectar since he improved on NMES last time. So back to three times a week for three months! We just started on month three so the end is (sort of) in sight.
I asked about possibly trying to go off Prilosec since Baby W's reflux seemed to have improved--she said we could do a trial and see how it went and he has been doing fantastic :) We get some minor spit up maybe once or twice a week and even that is becoming less common. I am cautiously optimistic in saying I think maybe we might be done with reflux meds.
The other big thing is GI ordered a sedated MRI for W--between the swallowing issues and developmental delays, she wants to get a look at his brain and nerves and all that to rule out some possible causes. She said if I really wanted to, we could wait to see how he does with this round of feeding therapy because chances are the MRI would be perfectly normal. My reply was that "chances are" is not our friend because our family tends to fall into the "somebody has to be the statistic" category ;-) I told her about Izzy's MRI (neurologist wanted one to rule out things but told us chances are it would be normal--nope, not normal) and that settled it for her--she wanted to get it now rather than wait for it. With Mr. Piper living in another state for work, it was a bit of a job getting a time set up that he could be here for so I wasn't juggling all the other kids but we finally got it set up.....only to have to cancel because W has been sick for a couple months now. He has had the neverending ear and sinus infection. Because of his swallowing issues, I was told he has to be under full anesthesia instead of just sedation like my Busy Little B and Izzy so he absolutely cannot be ill. Three rounds of antibiotics later and he got the all clear this morning to keep his second MRI date on Tuesday. Again, it took some maneuvering to get Mr. Piper here for this so *fingers crossed* that he remains well and we can get this done.
My Busy Little B had another overnight EEG and oh, my, was this one so much harder than the one he did just before W was born a year and a half ago. In some ways it was easier--he understood more and so was trying to cooperate and stay in camera and so we were playing board games and built with Lego and did puzzles and watched a movie (Ratchet and Clank--he chose it specifically because his older brother really wanted to see it and B figured he'd be jealous LOL). He ate his weight in food, I think--they told him he could order a meal whenever he was hungry, not just at meal times, plus they had a family pantry where I could go get him snacks and drinks and he took the "eat as much as you want" to heart. I'm not sure where he put it all but he's been eating everything in sight at home as well. I've started calling him the dinner vacuum because once everyone is finished, he polishes off any food left on sibling plates :p Sorry, went off on a food tangent. Anyway, the hard part of the EEG was the gauze that held the leads in place--it made a sort of helmet with a strap and he could not stand it. During the day, reminders not to touch, pull, or tug on it were enough--he was fussy and grumpy about it but was easily distracted and redirected but when night came? He cried and screamed for such a long time--Mr. Piper took the overnight shift because Baby W still needs mommy cuddles to sleep and he said B was inconsolable. He even called me so I could talk to B to try to calm him down but I'm pretty sure it just made B even more angry. They survived, though, and B was so relieved when the EEG ladies came to take it all off. No results yet, though :\
Poor Iz has been really struggling with her anxiety the last few months and just about her entire team is scrambling trying to figure out why and how to help her. It seems as though every few years the manifestation of her anxiety shifts a bit and we have to learn new strategies to deal with it. Right after her heart surgery, it was panic attacks so severe she'd hyperventilate and pass out. Then came severe separation anxiety. Then came selective mutism. Now we seem to be entering an aggressive phase. Thankfully everyone is very committed to helping her so her school team and medical team are all trying hard to bring her back to a more even keel. I really appreciate how the school not only asks about what helps at home but they work to incorporate those things at school and also share what works at school so I can incorporate at home--that consistency has been helping and we are again having more good days than bad :)
Baby W had another swallow study done in the beginning of December. We were hoping for improvement, perhaps even an end to thickening his liquids but, alas, this was not meant to be. He had gotten worse in some areas, enough that technically he should have moved back to honey thick liquids instead of the nectar he had been on. However, his GI decided to leave him on nectar because she was putting him back into the NMES feeding therapy and he responded so well the last time she felt he could stay on nectar since he improved on NMES last time. So back to three times a week for three months! We just started on month three so the end is (sort of) in sight.
I asked about possibly trying to go off Prilosec since Baby W's reflux seemed to have improved--she said we could do a trial and see how it went and he has been doing fantastic :) We get some minor spit up maybe once or twice a week and even that is becoming less common. I am cautiously optimistic in saying I think maybe we might be done with reflux meds.
The other big thing is GI ordered a sedated MRI for W--between the swallowing issues and developmental delays, she wants to get a look at his brain and nerves and all that to rule out some possible causes. She said if I really wanted to, we could wait to see how he does with this round of feeding therapy because chances are the MRI would be perfectly normal. My reply was that "chances are" is not our friend because our family tends to fall into the "somebody has to be the statistic" category ;-) I told her about Izzy's MRI (neurologist wanted one to rule out things but told us chances are it would be normal--nope, not normal) and that settled it for her--she wanted to get it now rather than wait for it. With Mr. Piper living in another state for work, it was a bit of a job getting a time set up that he could be here for so I wasn't juggling all the other kids but we finally got it set up.....only to have to cancel because W has been sick for a couple months now. He has had the neverending ear and sinus infection. Because of his swallowing issues, I was told he has to be under full anesthesia instead of just sedation like my Busy Little B and Izzy so he absolutely cannot be ill. Three rounds of antibiotics later and he got the all clear this morning to keep his second MRI date on Tuesday. Again, it took some maneuvering to get Mr. Piper here for this so *fingers crossed* that he remains well and we can get this done.
My Busy Little B had another overnight EEG and oh, my, was this one so much harder than the one he did just before W was born a year and a half ago. In some ways it was easier--he understood more and so was trying to cooperate and stay in camera and so we were playing board games and built with Lego and did puzzles and watched a movie (Ratchet and Clank--he chose it specifically because his older brother really wanted to see it and B figured he'd be jealous LOL). He ate his weight in food, I think--they told him he could order a meal whenever he was hungry, not just at meal times, plus they had a family pantry where I could go get him snacks and drinks and he took the "eat as much as you want" to heart. I'm not sure where he put it all but he's been eating everything in sight at home as well. I've started calling him the dinner vacuum because once everyone is finished, he polishes off any food left on sibling plates :p Sorry, went off on a food tangent. Anyway, the hard part of the EEG was the gauze that held the leads in place--it made a sort of helmet with a strap and he could not stand it. During the day, reminders not to touch, pull, or tug on it were enough--he was fussy and grumpy about it but was easily distracted and redirected but when night came? He cried and screamed for such a long time--Mr. Piper took the overnight shift because Baby W still needs mommy cuddles to sleep and he said B was inconsolable. He even called me so I could talk to B to try to calm him down but I'm pretty sure it just made B even more angry. They survived, though, and B was so relieved when the EEG ladies came to take it all off. No results yet, though :\
Poor Iz has been really struggling with her anxiety the last few months and just about her entire team is scrambling trying to figure out why and how to help her. It seems as though every few years the manifestation of her anxiety shifts a bit and we have to learn new strategies to deal with it. Right after her heart surgery, it was panic attacks so severe she'd hyperventilate and pass out. Then came severe separation anxiety. Then came selective mutism. Now we seem to be entering an aggressive phase. Thankfully everyone is very committed to helping her so her school team and medical team are all trying hard to bring her back to a more even keel. I really appreciate how the school not only asks about what helps at home but they work to incorporate those things at school and also share what works at school so I can incorporate at home--that consistency has been helping and we are again having more good days than bad :)
Saturday, September 17, 2016
Update!
**At Baby W's most recent GI appointment, he was able to lower his reflux meds and he's all the way up to the 6th percentile on the growth chart :) He outgrew his newborn clothes but can still wear 0-3 months--its funny seeing a Timehop picture pop up for last year in the same outfit he's wearing that day :p
**Iz has finally started preschool. She was so excited the first day until we walked in the door of the school. Then she was a bundle of anxiety and fear but the teacher held her hand and coaxed her back to the classroom and the rest of the week went rather smoothly. She says it is fun and has even learned a few kids' names
**My busy little B has done so well transitioning back into the school routine that they are ready to start his transition into a regular classroom again. Like last year, he will attend for an hour in the morning at the local school and then return to his program for the rest of the day.
**Iz has finally started preschool. She was so excited the first day until we walked in the door of the school. Then she was a bundle of anxiety and fear but the teacher held her hand and coaxed her back to the classroom and the rest of the week went rather smoothly. She says it is fun and has even learned a few kids' names
**My busy little B has done so well transitioning back into the school routine that they are ready to start his transition into a regular classroom again. Like last year, he will attend for an hour in the morning at the local school and then return to his program for the rest of the day.
Saturday, July 16, 2016
Guess it was my turn?
A few weeks ago Baby W has his visit with the geneticist. Our new geneticist (although not so new anymore, I guess, since she's been our geneticist for over six months now) is also a specialist in endocrinology, which is one reason our pediatrician wanted Baby W to see her because of his growth issues. She thinks he's a bit young to worry about anything genetic or metabolic, especially since addressing his reflux and aspiration helped him gain enough to get back on the curve (albeit on the bottom line) but because there's a family history of related symptoms that suggest we have some genetic stuff going on, she wants to keep following him and see him in six months.
While we were there, we talked a little bit about Iz since her DNA results finally were transferred over and I told her the pediatrician said to ask her the way the kids (and I) move in ways most people cannot out. She asked me to take my pants off :p She wanted to look at my joints and skin and then took a look at Iz as well.
Apparently it was my turn to get a diagnosis. Ehlers Danos Syndrome Hypermobility Type. She says Iz most likely has it as well but she's a bit young for a formal diagnosis because kids are naturally hypermobile and she likes to wait until they get older. A lot of my joints have stiffened up as I age but they still move in odd ways and I'm prone to dislocation. She gave me lots of info to take with me and read over and man, that list of possible symptoms explains a lot. There doesn't seem to be much one can do about it but its still nice to have a name so the next time a doc says I must not have the symptom I say I do because they can't find a reason for it, I can say, look! its this! Or if they freak out over a symptom that is "normal" for me, I can also say, look! its this! :p
While we were there, we talked a little bit about Iz since her DNA results finally were transferred over and I told her the pediatrician said to ask her the way the kids (and I) move in ways most people cannot out. She asked me to take my pants off :p She wanted to look at my joints and skin and then took a look at Iz as well.
Apparently it was my turn to get a diagnosis. Ehlers Danos Syndrome Hypermobility Type. She says Iz most likely has it as well but she's a bit young for a formal diagnosis because kids are naturally hypermobile and she likes to wait until they get older. A lot of my joints have stiffened up as I age but they still move in odd ways and I'm prone to dislocation. She gave me lots of info to take with me and read over and man, that list of possible symptoms explains a lot. There doesn't seem to be much one can do about it but its still nice to have a name so the next time a doc says I must not have the symptom I say I do because they can't find a reason for it, I can say, look! its this! Or if they freak out over a symptom that is "normal" for me, I can also say, look! its this! :p
Thursday, March 17, 2016
More testing....
Tomorrow we head back to the hospital again for another test for The Baby. His reflux has returned in full force along with throat clearing. Every time he eats or drinks, he's clearing his throat the whole time. Sometimes its just a couple times during a feed, sometimes its every thirty to sixty seconds the whole time. Dr M is worried he might be having "micro-aspirations" and wants to get a swallow study to rule them out. This kid LOVES to eat. He nurses well and is satisfied, he loves baby food now that he's discovered mixed foods (when we were doing single foods he had no interest beyond a bite or two. Now that he's on to a couple things mixed together he'll down 3-5 ounces before telling me he's full), and he's so active. Crawling, standing, climbing, dancing. If he'd just stop spitting his food back up! Now that he's eating some solids, we are seeing just how long food is staying in his stomach--he was still spitting up dabs of orangish colored milk four hours after he ate sweet potatoes :|
Saturday, March 12, 2016
Lots of testing :/
So our littlest guy has been struggling to gain weight--he has pretty bad reflux and was constantly spitting up. We tried a couple different meds and prilosec seems to work ok. He still spits up but not nearly as much and he has started gaining again but ssssllllloooooowwwwwwlllllllllyyyyyyy. Because the older kids all have "stuff" going on, our current pediatrician ordered a bunch of tests to see if there are any of the "common" genetic causes going on, including the oh-so-fun sweat test (three and a half hours in the hospital for that one. He was cooperative but his sweat glands were not so we had to do the test twice on one arm. Fun times). So far, nothing much has turned up. He has a few slightly off results on the blood work but not so far out of range they are really worried. He has been voracious in his appetite lately, both for nursing and actual food so perhaps by his next appointment his weight will have caught up on its own :p
Sunday, July 29, 2012
Good Things
**B had his followup with the ENT and his ears are working better :) He still can't pass all the hearing tests but there was enough improvement that we didn't need to do the sedated test :) He will continue to take his medicine for a month and then be off it for two. If his ears stay clear, they will just monitor. If the fluid returns, we may still need tubes
**Iz has gone from a couple reflux episodes per hour to a couple per week :) We are all very pleased!
**Iz hit 19.8 on the home scale today--I know it isn't as accurate as the baby scale but it shows a gain in the right direction
**S also gained about six pounds--he is our stays boney no matter what and how much he eats so we like seeing gains :p Boy never stops moving
**Iz outgrew all her jammies :) Yay, growth!
**Iz has gone from a couple reflux episodes per hour to a couple per week :) We are all very pleased!
**Iz hit 19.8 on the home scale today--I know it isn't as accurate as the baby scale but it shows a gain in the right direction
**S also gained about six pounds--he is our stays boney no matter what and how much he eats so we like seeing gains :p Boy never stops moving
**Iz outgrew all her jammies :) Yay, growth!
Tuesday, March 13, 2012
Six Months Old
Baby I turned six months old on Friday and on Monday, she had her six month well baby visit. She really loves her pediatrician--she always gives her big smiles and starts bouncing around on my lap when Dr A comes in :)
Dr A says she is looking good, although she is the size of an average three month old. She gained a tiny bit of weight since her Synagis appointment last week--up to 13 lb 2.6 oz. And she added a little length as well--25 and 3\4 inches.
Her Zantac isn't working very well lately so Dr A upped her dosage to 2ml every twelve hours. Last night was a bit better so here's hoping the new dose kicks in soon and she is back to feeling a lot better. There has been far too much crying lately :( She seems fairly happy and content at the moment and this is the longest I've been able to set her down in days so I am a little bit hopeful. And I really should go do some laundry or something while I have a few moments LOL
Dr A says she is looking good, although she is the size of an average three month old. She gained a tiny bit of weight since her Synagis appointment last week--up to 13 lb 2.6 oz. And she added a little length as well--25 and 3\4 inches.
Her Zantac isn't working very well lately so Dr A upped her dosage to 2ml every twelve hours. Last night was a bit better so here's hoping the new dose kicks in soon and she is back to feeling a lot better. There has been far too much crying lately :( She seems fairly happy and content at the moment and this is the longest I've been able to set her down in days so I am a little bit hopeful. And I really should go do some laundry or something while I have a few moments LOL
Thursday, February 16, 2012
No weight gain this week.....
Again. Last week on Monday morning, she was 12 lbs 9 oz at Synagis Clinic. At her ped's that afternoon, she was 13 lbs even (??). On Wednesday at cardiology, she was 12 lbs 10 oz. Friday at the ped's, she was 12 lbs 15.2 oz and today at the ped's, she was 12 lbs 11.8 oz. So according to some measurements she gained while according to others she lost. So we are calling it a wash :p Nursing has been a struggle for her the last few weeks--it just makes her too tired and she has to rest often during a feed. And when she does get the energy for a full nursing session, her reflux kicks in and she spits up large amounts of it *sigh*
Poor Baby I slept most of the day today but she did have some fun this evening playing with Auntie H :)
Poor Baby I slept most of the day today but she did have some fun this evening playing with Auntie H :)
Saturday, February 11, 2012
Smile!
Today, I got a whole lot of these smiles and giggles and full-on belly laughs :) She may not like taking yet another medication but I am thinking this reflux med is a keeper :)
We had a quiet night
On Wednesday, we talked a bit with Dr E about Baby I's reflux. He thought starting some Zantac would be a good idea to make her comfortable leading up to surgery and during recovery so yesterday we headed in to Dr A's office to get a script as well as to have her cough checked (again). Lungs are still clear but poor little baby girl just sounds awful :\
Got the script filled for her Zantac and gave her the first dose last night--she hates it even more than the Lasix and Aldactone! Poor little gal chewed me out for making her take it. However, it has made me cautiously optimistic since we had a rather quiet night last night. She still woke up often to nurse (in the last week or so, she just doesn't have the energy for a full nursing session so she eats for a minute or two and then has to rest. Instead of a feeding taking ten to twenty minutes, it takes about two hours) but there was no crying or restlessness or misery. And no crying and misery this morning, either. She is back to being a "happy spitter" instead of a miserable one. Eating has become so tiring for her that it breaks my heart to see any of it spit back up but at least it isn't hurting her anymore :) My hope is that this is not a fluke and she continues to be comfortable!
Got the script filled for her Zantac and gave her the first dose last night--she hates it even more than the Lasix and Aldactone! Poor little gal chewed me out for making her take it. However, it has made me cautiously optimistic since we had a rather quiet night last night. She still woke up often to nurse (in the last week or so, she just doesn't have the energy for a full nursing session so she eats for a minute or two and then has to rest. Instead of a feeding taking ten to twenty minutes, it takes about two hours) but there was no crying or restlessness or misery. And no crying and misery this morning, either. She is back to being a "happy spitter" instead of a miserable one. Eating has become so tiring for her that it breaks my heart to see any of it spit back up but at least it isn't hurting her anymore :) My hope is that this is not a fluke and she continues to be comfortable!
Monday, February 6, 2012
Another busy week
It seems like many of Baby I's appointments get grouped all in the same week so we are constantly running about and then the next week we just have her weekly weight check and that's it :p This week is only three appointments, though, so that isn't too bad :)
First appointment of the week was this morning at the Children's Hospital in the City to get the next round of Synagis. The wonderful IBCLC we work with now and then suggested we trying nursing through the shot to see if that helped her pain levels so we gave it a shot555 today. It took Baby I a few moments to realize she was getting a shot so it was just about done before she started crying and she cried for less than a minute and then went back to eating. YAY! Much better than last time! I am hoping the nursing helped and it wasn't just a fluke so we can get similar results next month. She was so miserable and upset over the shot last month that it was a relief that she took it so much better this time. Still hard to see her upset and hurting, even if it was to a lesser degree :\
This afternoon brought an emergency trip to the pediatrician's office (so I guess you could say we have four appointments this week?). Baby I had a very slight cough over the weekend, probably the same virus that made her brothers (and me) sick. I had thought she was going to escape it before the little cough started but, alas, no. The little cough turned into a wet congested cough by last night and just continued to get worse over the course of the day. By mid-afternoon, poor little dear would cough, gag, throw up, and then cry :*( So off we went to see Dr. A. Baby I's lungs are clear, her ears are clear, no signs of infection so Dr A. is thinking its just a regular ole cold made a little more miserable by Baby I's reflux plus the underlying congestion she always has from her heart condition. Poor little mite :( Oh, and at the ped's office, she came in at thirteen pounds even. Which is slightly off because she was wearing her onesie today to keep her warm but the ped says that shouldn't throw it off by more than a few ounces and so she should be hitting her one pound mark at the cardio's office :D Now let's hope the coughing-that-leads-to-vomiting doesn't make her lose some of that precious weight and put her back under a pound for last month's weight gain.....
Wednesday is cardio and we get our next echo to see how her holes and artery are doing.
Friday is one of her home nurses coming to visit.
I have many things I should be doing but I think I might sleep instead :p
First appointment of the week was this morning at the Children's Hospital in the City to get the next round of Synagis. The wonderful IBCLC we work with now and then suggested we trying nursing through the shot to see if that helped her pain levels so we gave it a shot555 today. It took Baby I a few moments to realize she was getting a shot so it was just about done before she started crying and she cried for less than a minute and then went back to eating. YAY! Much better than last time! I am hoping the nursing helped and it wasn't just a fluke so we can get similar results next month. She was so miserable and upset over the shot last month that it was a relief that she took it so much better this time. Still hard to see her upset and hurting, even if it was to a lesser degree :\
This afternoon brought an emergency trip to the pediatrician's office (so I guess you could say we have four appointments this week?). Baby I had a very slight cough over the weekend, probably the same virus that made her brothers (and me) sick. I had thought she was going to escape it before the little cough started but, alas, no. The little cough turned into a wet congested cough by last night and just continued to get worse over the course of the day. By mid-afternoon, poor little dear would cough, gag, throw up, and then cry :*( So off we went to see Dr. A. Baby I's lungs are clear, her ears are clear, no signs of infection so Dr A. is thinking its just a regular ole cold made a little more miserable by Baby I's reflux plus the underlying congestion she always has from her heart condition. Poor little mite :( Oh, and at the ped's office, she came in at thirteen pounds even. Which is slightly off because she was wearing her onesie today to keep her warm but the ped says that shouldn't throw it off by more than a few ounces and so she should be hitting her one pound mark at the cardio's office :D Now let's hope the coughing-that-leads-to-vomiting doesn't make her lose some of that precious weight and put her back under a pound for last month's weight gain.....
Wednesday is cardio and we get our next echo to see how her holes and artery are doing.
Friday is one of her home nurses coming to visit.
I have many things I should be doing but I think I might sleep instead :p
Friday, February 3, 2012
Six more ounces!
We have been hit by another round of The Sick. S spent most of the weekend feeling miserable and missed Monday, Tuesday, and Wednesday of school. At least there was no vomiting this time! Just a regular cold--low-grade fever, chills, aches, congestion, runny nose, sneeze, and cough. S sure was happy to go back to school today :p He doesn't even like weekends or vacations because it means he has to be away from Miss B and his friends LOL He has a really great day in school today :)
B started sniffling two days ago and by this morning, the poor bubs sounded just awful :( His cough rattled and he was wheezing up a storm :( I perhaps may be just a wee bit paranoid when it comes to coughs in the kidlets--I am prone to bronchitis and get it several times a year so when I hear rattling coughs, I want a doctor to listen to their lungs :p Every doc who treats my kids learns this quickly during cold and flu season :p Thursdays are when we try to do Baby I's weekly weigh-ins so I brought B in so Dr A could have a listen. His lungs are clear but he has some infection going on in his ear and upper respiratory system--poor guy takes after me: it develops really quickly and won't go away without a little help. She prescribed some meds for him to take to clear things up so hopefully he won't feel so bad soon!
Baby I weighed in at 12lbs 9.8oz! Way to go, little girl! Last week was 12.3 :) Fingers crossed that Wednesday's cardiologist appointment sees a few more ounces--Dr E wants her to gain at least a pound a month and we are almost but not quite there. Dr A is thinking we may need to start thinking about starting Baby I on Zantac for her reflux--poor little thing is starting to experience more and more pain and crying from it and while the cereal did help her keep more food down, she has now decided she absolutely will NOT eat it anymore so we are back to copious amounts of spit-up. I am going to talk to Dr E about it and make sure Zantac won't interfere with her meds/heart and if he gives the go ahead, we'll talk about it with Dr A. It would be lovely if we could stop the hour long crying and arching the back and misery sessions :(
Next week will be a busy one: Synagis on Monday, cardio on Wednesday, and one of the nurses on Friday. I am REALLY nervous about cardio; we get the next echo. Have the defects closed any more? Did that restricted artery grow at all or is it still too small? Will her blood pressure be OK? Will her lung function still be in the OK range or is the continuing decline in her breathing a sign that it won't be all right this time around? Is her little heart keeping up with her body or is it time for surgery? Part of me wants to avoid surgery, to let her little body heal on its own, to not have to take the risks of open heart surgery. Part of me just wants my little girl to be able to breath without straining, to play for more than a few minutes without being flushed and sweaty and tired, to nurse without getting dusky and exhausted, to grow normally instead of fighting for each fraction of an ounce. *sigh*
B started sniffling two days ago and by this morning, the poor bubs sounded just awful :( His cough rattled and he was wheezing up a storm :( I perhaps may be just a wee bit paranoid when it comes to coughs in the kidlets--I am prone to bronchitis and get it several times a year so when I hear rattling coughs, I want a doctor to listen to their lungs :p Every doc who treats my kids learns this quickly during cold and flu season :p Thursdays are when we try to do Baby I's weekly weigh-ins so I brought B in so Dr A could have a listen. His lungs are clear but he has some infection going on in his ear and upper respiratory system--poor guy takes after me: it develops really quickly and won't go away without a little help. She prescribed some meds for him to take to clear things up so hopefully he won't feel so bad soon!
Baby I weighed in at 12lbs 9.8oz! Way to go, little girl! Last week was 12.3 :) Fingers crossed that Wednesday's cardiologist appointment sees a few more ounces--Dr E wants her to gain at least a pound a month and we are almost but not quite there. Dr A is thinking we may need to start thinking about starting Baby I on Zantac for her reflux--poor little thing is starting to experience more and more pain and crying from it and while the cereal did help her keep more food down, she has now decided she absolutely will NOT eat it anymore so we are back to copious amounts of spit-up. I am going to talk to Dr E about it and make sure Zantac won't interfere with her meds/heart and if he gives the go ahead, we'll talk about it with Dr A. It would be lovely if we could stop the hour long crying and arching the back and misery sessions :(
Next week will be a busy one: Synagis on Monday, cardio on Wednesday, and one of the nurses on Friday. I am REALLY nervous about cardio; we get the next echo. Have the defects closed any more? Did that restricted artery grow at all or is it still too small? Will her blood pressure be OK? Will her lung function still be in the OK range or is the continuing decline in her breathing a sign that it won't be all right this time around? Is her little heart keeping up with her body or is it time for surgery? Part of me wants to avoid surgery, to let her little body heal on its own, to not have to take the risks of open heart surgery. Part of me just wants my little girl to be able to breath without straining, to play for more than a few minutes without being flushed and sweaty and tired, to nurse without getting dusky and exhausted, to grow normally instead of fighting for each fraction of an ounce. *sigh*
Monday, January 16, 2012
The stomach bug is making its way through the house
Last week, Mr. Piper has the stomach flu. A Few days later, I had it. Now, a few days later, S has it. I am hoping B manages to avoid getting it as a vomiting two year old is even harder to console than a six year old :( But most of all, I hope little Baby I can avoid it--she does not need to be that sick with her health problems and with the problems she has gaining weight :/ I am hoping all of the antibodies she got through breastfeeding while I was ill are still doing the trick and will keep her from getting the virus from S. She and S have such a strong bond that it is pretty much impossible to keep them apart :p
The cereal is helping her keep down most of her breastmilk although we had a bit more spitting up today. The pain of the reflux is bothering her more, though--poor Baby I has not been sleeping well at night--if I hold her upright she is fine but as soon as I lay her down, she is fussy and crying and just doesn't feel good :( She will nurse for a ew seconds and that seems to ease the discomfort enough for her to sleep for a few minutes at a time but the majority of the night is short naps and then comforting. I hope tonight is easier for her...and for me since I could really use a little sleep :p
The cereal is helping her keep down most of her breastmilk although we had a bit more spitting up today. The pain of the reflux is bothering her more, though--poor Baby I has not been sleeping well at night--if I hold her upright she is fine but as soon as I lay her down, she is fussy and crying and just doesn't feel good :( She will nurse for a ew seconds and that seems to ease the discomfort enough for her to sleep for a few minutes at a time but the majority of the night is short naps and then comforting. I hope tonight is easier for her...and for me since I could really use a little sleep :p
Sunday, January 15, 2012
Reflux
We are on day three of trying the rice cereal and seeing if it helps with Baby I's reflux. The first time, she wasn't so sure about it--she rolled it about in her mouth, gummed it, smacked her lips, and touched it with her fingers. Then she decided it was fun and blew bubbles with it ;) Most of it went on her face and hands as she played with it but she did swallow a little.....and she spit up less after nursing. The second day, she swallowed a bit more but still had great fun playing with it, but she spit up even less. Today, she got excited when she saw me with the bowl and spoon. She giggled and squealed and opened her mouth so I could spoon some in. And she ate it all. She was all about swallowing it today, no playtime with the cereal. And ever since, she has not had her usual post-nursing session fussiness where she cried and arches her back before spitting out enough breastmilk to soak her clothiing. She did a small amount of complaining and spit up a tiny little bit and then was happy. Perhaps, if this keeps up, she'll be able to gain weight a bit easier :)
Wednesday, January 11, 2012
It has already been a long week...
Yesterday was our January cardio appointment and it was much better than I feared--she has been cleared to wait another month :) I am always hopeful that she will be well enough to wait and wait and wait until one day she doesn't even need surgery at all :p The realist in me knows that is unlikely but the longer she can wait, the better her chances at a good outcome for her surgery so every month Dr K says we will keep an eye on her and see how she is next month is a good appointment :) Her pressure is up a little and her breathing is heavier and more congested as I had been observing but he thinks it is still okay enough that she will be fine. He was pleased that she gained a pound over the last month--it isn't as much as you'd see in a normal baby but for a heart baby, it is enough :) We are to continue the weekly weight/vitals checks with Dr A and of course continue looking for our List of Things You Must Go Immediately to the Hospital For. *sigh* I hate that we have to have a go-to-hospital list. It is just yet another reminder that her health can change in no time at all and we could have a happy alert baby one day and be in the ICU the next. Positive thoughts tonight, though--in her four short months with us, she has never shown any of the List symptoms :)
Today was her four month well baby visit with Dr A. Baby I continues to be ahead of the game developmentally--she may be tiny but she is energetic and strong! She complained for a few seconds on one of her shots but didn't cry and was cooperative, even drinking the oral vaccine without spitting it at anyone the way she does her heart meds ;)
For the last few months, I have noticed that she had begun to spit up more frequently but didn't think anything of it as it wasn't that much. But it kept increasing and I thought perhaps it is being caused by the meds. One of the listed side effects of her meds is gas and boy, did she ever have it bad. Perhaps the gas was causing a little upset and spittiing. But over time, her body adjusted to the meds and while she still occasionally will have an impressive burp or fart, for the most part she has adjusted and she isn't bothered by gassiness. The spitting up, however, continued to get worse. The last week or so, she soaks her clothing several times a day. Every few days she will have a session of screaming and crying and nothing makes it better. She has begun to arch her back when these crying fits hit. Nursing will calm her down for a few swallows and then she will cry again. She wants to nurse, asks to nurse, but it just isn't soothing enough for her. I was thinking she may be getting reflux but I didn't want it to be that because she has enough to deal with :/ But I talked it over with Dr A today and she is also thinking reflux :( Mild but getting worse--not bad enough for meds yet but if it continues to get worse, we'll need to see if she can take anything with her heart meds.
For now, though, she suggested cereal to try and soothe I's little tummy and help her keep down her breastmilk--perhaps she will grow a bit more if it works. Dr. A said she normally wouldn't recommend it but for I's special circumstances, it would be a good idea to offer it and see if I will take it. I must admit, I have never used cereal before--I have always waited until the kids were at least six months and showing all the other signs of readiness and then I just gave them regular food. Sweet potato was always first, then avocado, then banana. After that, whatever was in season that we were eating. We had planned to do the same for I. But I bought a small box of organic baby cereal and mixed up a spoonful with some breastmilk and we tried some out at dinner. She was not sure about this strange stuff we put in her mouth LOL She smacked her lips/gums, she rolled it around on her tongue, she spit some out and then licked it off her lips, she made faces at us, she fussed at us but then once her face was wiped clean accepted another little bite to blow bubbles with, etc. But amongst the playing, there were a few little swallows and the amount she spit up after she nursed tonight was a lot less. Could be coincidence, could be even a few small swallows of the cereal helped. We will try again tomorrow and see how it goes.
Today was her four month well baby visit with Dr A. Baby I continues to be ahead of the game developmentally--she may be tiny but she is energetic and strong! She complained for a few seconds on one of her shots but didn't cry and was cooperative, even drinking the oral vaccine without spitting it at anyone the way she does her heart meds ;)
For the last few months, I have noticed that she had begun to spit up more frequently but didn't think anything of it as it wasn't that much. But it kept increasing and I thought perhaps it is being caused by the meds. One of the listed side effects of her meds is gas and boy, did she ever have it bad. Perhaps the gas was causing a little upset and spittiing. But over time, her body adjusted to the meds and while she still occasionally will have an impressive burp or fart, for the most part she has adjusted and she isn't bothered by gassiness. The spitting up, however, continued to get worse. The last week or so, she soaks her clothing several times a day. Every few days she will have a session of screaming and crying and nothing makes it better. She has begun to arch her back when these crying fits hit. Nursing will calm her down for a few swallows and then she will cry again. She wants to nurse, asks to nurse, but it just isn't soothing enough for her. I was thinking she may be getting reflux but I didn't want it to be that because she has enough to deal with :/ But I talked it over with Dr A today and she is also thinking reflux :( Mild but getting worse--not bad enough for meds yet but if it continues to get worse, we'll need to see if she can take anything with her heart meds.
For now, though, she suggested cereal to try and soothe I's little tummy and help her keep down her breastmilk--perhaps she will grow a bit more if it works. Dr. A said she normally wouldn't recommend it but for I's special circumstances, it would be a good idea to offer it and see if I will take it. I must admit, I have never used cereal before--I have always waited until the kids were at least six months and showing all the other signs of readiness and then I just gave them regular food. Sweet potato was always first, then avocado, then banana. After that, whatever was in season that we were eating. We had planned to do the same for I. But I bought a small box of organic baby cereal and mixed up a spoonful with some breastmilk and we tried some out at dinner. She was not sure about this strange stuff we put in her mouth LOL She smacked her lips/gums, she rolled it around on her tongue, she spit some out and then licked it off her lips, she made faces at us, she fussed at us but then once her face was wiped clean accepted another little bite to blow bubbles with, etc. But amongst the playing, there were a few little swallows and the amount she spit up after she nursed tonight was a lot less. Could be coincidence, could be even a few small swallows of the cereal helped. We will try again tomorrow and see how it goes.
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