We went for Emily's check-up yesterday. Dr. Tull said that she looked really good. Her height is 21 3/4 inches (25th percentile), her weight is 11 lbs. 5 ozs. (70th percentile), and her head is 15 1/2 around (55th percentile). Of course, we don't expect her to be very tall. She can thank Nate and I both for that.
She is holding her head well, standing with balance support, and smiling. She is really hard to resist when she is smiling. It is really cute! I will try to get a picture of it on here soon.
Her next check-up is July 22nd, so we will see where she is then!
Tuesday, June 29, 2010
Tuesday, June 15, 2010
It's been a long day
So, after lots and lots of spitup, 3 alarms going off, a couple of choking incidents, and going through 2 outfits for Emily, 3 outfits for me, 3 blankets, and about 6 burp cloths, oh and barely any sleep for either of us today, the day is finally over.
Today wasn't necessarily a bad day... just a long one. I always hate when she is having a bad day because of her reflux. Not because it is a more difficult day for me but because there isn't much I can do about it but be there for her.
Hopefully tomorrow will go a little more smoothly.
Today wasn't necessarily a bad day... just a long one. I always hate when she is having a bad day because of her reflux. Not because it is a more difficult day for me but because there isn't much I can do about it but be there for her.
Hopefully tomorrow will go a little more smoothly.
Monday, June 14, 2010
Tuesday, June 8, 2010
Stupid Monitor
Exactly a week after we brought Emily home we had the worst night thus far. She was actually really good but her apnea monitor was not.
Nate went to go and turn it off and it started a really loud, constant beep. It wouldn't stop. We did everything that the company told us to do to turn the awful noise off but it wouldn't stop. Emily was fine. It was not making the noise because of her. It was just malfunctioning.
The monitor company has a 24 hour emergency number so we called it. No one answered but the greeting on the voice mail stated that someone would call us back in just a few minutes. Ok, no problem. This first call was at 7:30 pm.
By 9:00 the monitor was wrapped up in one of Emily's blankets and shut inside the dryer so that we could not hear the noise from upstairs. I was pissed because we had not heard back from the on call nurse for the company so I called again and left another message. All we could think about was having to stay awake all night long so that we could make sure she was still breathing. We were both exhausted and were not looking forward to forcing ourselves to stay awake.
We had heard about the Angelcare monitors that you can buy in the stores. Wal-Mart, Target, and Babies R Us all carry them. Unfortunately it was Sunday night so everything was already closed except for Wal-Mart. So Nate went in search of one hoping we could have her sleep on this instead for one night. We were mad about this too because they are not cheap.
By 11:00 there was still no call from the on call nurse. When I called yet again I did not leave a very nice message. Nate was back with no Angelcare monitor because the Wal-Marts in Richmond don't have them in the stores, only online. Our monitor was still beeping away.
We were done!
Nate went and pulled the monitor out of the dryer and started taking it apart. He could reach the piece he need to in order to get to the inside battery so he handed it over to me. I finally got to it and it was quiet. But now, we had no working monitor. We put some of the pieces back together, it was in about 5 by this point, and miraculously got it to work again. It was still in pieces, but it was working. So now we could at least make it through the night. We were still nervous though, because we were not sure how long it would continue to work.
It ended up going off 3 different times throughout the night, because Emily stopped breathing, not because it was malfunctioning. Nothing serious, but we definitely needed a working monitor. It scares me to think what could have happened if we hadn't figured out how to rig it to work for the night.
At 9:00 in the morning there was still no call from the company so I called them again. Someone answered this time as it was during their normal business hours. I explained what had happened the previous night and the nurse stated that she was the one on call last night and never received any phone calls. She said someone would come by the house to see what was wrong and give us a new monitor. I also told her she might want to try checking messages as I had left quite a few.
When the nurse from the company (a different nurse than the one I talked to) stopped by the house she told us that the situation had been investigated and that the nurse that had been on call that night had gone to church and turned off the phone. She forgot to turn it back on and check messages. She apologized for the company and gave us the owner's personal cell phone number in case anything should happen again. She also told us that they were going to be reviewing their on call policies at an upcoming meeting. She asked us for any suggestions we might have to improve this area and we gave her some ideas. She took the old monitor and gave us a new one. She had never seen one in so many pieces before. I am not exactly sure what happened to the nurse that had been on call.
We have not had any problems since then, thank goodness, and the one other time that I have had to contact the company I had a very good response from them. The company seems to be a good one, but that one nurse was very irresponsible.
Nate went to go and turn it off and it started a really loud, constant beep. It wouldn't stop. We did everything that the company told us to do to turn the awful noise off but it wouldn't stop. Emily was fine. It was not making the noise because of her. It was just malfunctioning.
The monitor company has a 24 hour emergency number so we called it. No one answered but the greeting on the voice mail stated that someone would call us back in just a few minutes. Ok, no problem. This first call was at 7:30 pm.
By 9:00 the monitor was wrapped up in one of Emily's blankets and shut inside the dryer so that we could not hear the noise from upstairs. I was pissed because we had not heard back from the on call nurse for the company so I called again and left another message. All we could think about was having to stay awake all night long so that we could make sure she was still breathing. We were both exhausted and were not looking forward to forcing ourselves to stay awake.
We had heard about the Angelcare monitors that you can buy in the stores. Wal-Mart, Target, and Babies R Us all carry them. Unfortunately it was Sunday night so everything was already closed except for Wal-Mart. So Nate went in search of one hoping we could have her sleep on this instead for one night. We were mad about this too because they are not cheap.
By 11:00 there was still no call from the on call nurse. When I called yet again I did not leave a very nice message. Nate was back with no Angelcare monitor because the Wal-Marts in Richmond don't have them in the stores, only online. Our monitor was still beeping away.
We were done!
Nate went and pulled the monitor out of the dryer and started taking it apart. He could reach the piece he need to in order to get to the inside battery so he handed it over to me. I finally got to it and it was quiet. But now, we had no working monitor. We put some of the pieces back together, it was in about 5 by this point, and miraculously got it to work again. It was still in pieces, but it was working. So now we could at least make it through the night. We were still nervous though, because we were not sure how long it would continue to work.
It ended up going off 3 different times throughout the night, because Emily stopped breathing, not because it was malfunctioning. Nothing serious, but we definitely needed a working monitor. It scares me to think what could have happened if we hadn't figured out how to rig it to work for the night.
At 9:00 in the morning there was still no call from the company so I called them again. Someone answered this time as it was during their normal business hours. I explained what had happened the previous night and the nurse stated that she was the one on call last night and never received any phone calls. She said someone would come by the house to see what was wrong and give us a new monitor. I also told her she might want to try checking messages as I had left quite a few.
When the nurse from the company (a different nurse than the one I talked to) stopped by the house she told us that the situation had been investigated and that the nurse that had been on call that night had gone to church and turned off the phone. She forgot to turn it back on and check messages. She apologized for the company and gave us the owner's personal cell phone number in case anything should happen again. She also told us that they were going to be reviewing their on call policies at an upcoming meeting. She asked us for any suggestions we might have to improve this area and we gave her some ideas. She took the old monitor and gave us a new one. She had never seen one in so many pieces before. I am not exactly sure what happened to the nurse that had been on call.
We have not had any problems since then, thank goodness, and the one other time that I have had to contact the company I had a very good response from them. The company seems to be a good one, but that one nurse was very irresponsible.
Tuesday, June 1, 2010
What Happened Next
So Nate mentioned in the last post that we didn't know what her reflux was like off the medications. Well we found out when we took her off of the Reglan. It CAN be really bad, but isn't always. Sometimes she eats and doesn't really spit up. Just a very small amount comes back up. Other times she chokes and spits up half of what she eats.
Sometimes everything that is going to come up comes up with in a few minutes. Others it keeps coming up for up to two hours after she eats. You can hear when she refluxes most of the time because she starts gulping loudly and gasping when she breathes. I don't know if I can explain in a way that everyone can really understand, but it IS NOT normal infant reflux. That is a sure thing. It is still manageable, but we just have to keep a closer eye on her when she is eating and directly afterward.
When she went back to the pediatrician on May 24th for her 1 month check up Dr. Tull said she was looking really good. Emily weighed 9 lbs. 10 oz
s. and was 21 and 1/4 inches long. Her head, length, and weight all fell into the 50th percentile. She had good skin and coloring too. She is still on the monitor and Zantac but these are things she will continue to be on for a while. Her next appointment is on June 28th so we will see where she is then.
Sometimes everything that is going to come up comes up with in a few minutes. Others it keeps coming up for up to two hours after she eats. You can hear when she refluxes most of the time because she starts gulping loudly and gasping when she breathes. I don't know if I can explain in a way that everyone can really understand, but it IS NOT normal infant reflux. That is a sure thing. It is still manageable, but we just have to keep a closer eye on her when she is eating and directly afterward.
When she went back to the pediatrician on May 24th for her 1 month check up Dr. Tull said she was looking really good. Emily weighed 9 lbs. 10 oz
s. and was 21 and 1/4 inches long. Her head, length, and weight all fell into the 50th percentile. She had good skin and coloring too. She is still on the monitor and Zantac but these are things she will continue to be on for a while. Her next appointment is on June 28th so we will see where she is then.First Pediatrician Appointment
From May 12th...
We took Emily to her Pediatrician today. Dr. Tull (Emily's Pediatrician) said she is a beautiful, healthy little girl. She said we can take her off the Reglan, because the Tardive Dyskinesia is a legitimate concern. Dr. Tull stated that a lot of hospitals like to prescribe it, but pediatricians don't really like to us
e it because it is so controversial and that we definitely don't want to trade a temporary problem (reflux) for a permanent problem (tardive dyskinesia). She said if the reflux is so severe while we're off of Reglan we can always go back on it for a little while and see what happens. But because we have had so little interaction with her because she spent the entire first 2 weeks in the hospital, we don't know how bad the reflux is off of the Reglan. I tend to think the hospital was just being uber-cautious to avoid a lawsuit, and that it's really not that bad. She's spit up on me quite a bit, and it never made me think "WOW, this is insane!!!" Babies reflux and spit-up... some worse than others. But that's why we have the take-home monitor. Her next follow-up appointment is May 24th.
Her apnea monitor went off for the first time yesterday. Gair was holding her and it beeped 3 times. By the 3rd beep, Gair had already re-positioned her and Emily started breathing again. It is set to alarm if she stops breathing for more than 20 seconds (it is common for babies to routinely stop breathing for as much as 20 seconds because their breathing is so irregular).
A final note: Emily was born 8 lbs, 2 oz. She went down to 7 lbs, 12 oz shortly after she was born (all babies lose weight initially). She was 8 lbs, 10 oz on Saturday night when the hospital weighed her for the last time. The Pediatrician's office weighed her today, and she was 8 lbs, 13 oz. So she's gained 11 oz from her birth weight in just 2.5 weeks. And a total of 1 lb 1 oz since her initial weight loss. So apparently eating will not be a problem... this girl can put down some food!
We took Emily to her Pediatrician today. Dr. Tull (Emily's Pediatrician) said she is a beautiful, healthy little girl. She said we can take her off the Reglan, because the Tardive Dyskinesia is a legitimate concern. Dr. Tull stated that a lot of hospitals like to prescribe it, but pediatricians don't really like to us
e it because it is so controversial and that we definitely don't want to trade a temporary problem (reflux) for a permanent problem (tardive dyskinesia). She said if the reflux is so severe while we're off of Reglan we can always go back on it for a little while and see what happens. But because we have had so little interaction with her because she spent the entire first 2 weeks in the hospital, we don't know how bad the reflux is off of the Reglan. I tend to think the hospital was just being uber-cautious to avoid a lawsuit, and that it's really not that bad. She's spit up on me quite a bit, and it never made me think "WOW, this is insane!!!" Babies reflux and spit-up... some worse than others. But that's why we have the take-home monitor. Her next follow-up appointment is May 24th.Her apnea monitor went off for the first time yesterday. Gair was holding her and it beeped 3 times. By the 3rd beep, Gair had already re-positioned her and Emily started breathing again. It is set to alarm if she stops breathing for more than 20 seconds (it is common for babies to routinely stop breathing for as much as 20 seconds because their breathing is so irregular).
A final note: Emily was born 8 lbs, 2 oz. She went down to 7 lbs, 12 oz shortly after she was born (all babies lose weight initially). She was 8 lbs, 10 oz on Saturday night when the hospital weighed her for the last time. The Pediatrician's office weighed her today, and she was 8 lbs, 13 oz. So she's gained 11 oz from her birth weight in just 2.5 weeks. And a total of 1 lb 1 oz since her initial weight loss. So apparently eating will not be a problem... this girl can put down some food!
Rooming In
This was sent out before we knew she was coming home on this day. Her being discharged was the best Mother's Day present I could have ever asked for!
From May 9th (Mother's Day)...
We spent the night "rooming in" at the hospital last night. Basically, we used the hospital like a hotel, had Emily in our room, and had minimal assistance from the nurses. This is an important step in bringing her home. It shows the hospital that we can handle her care without much (if any) asssistance from them. In fact, the only time we needed anything was when we needed Emily's nurse to bring us more breastmilk from the refridgerator. We are still feeding her breast milk, but it has to be thickened by adding Simply Thick, and also we are adding some calories to it increase her caloric intake without increasing the volume of milk. So there is a little bit of formula powder we are adding to the milk.
She is also on Reglan and Zantac, which both appear to be working. We want to minimize the amount of time she is on Reglan because long-term (3+ months) and high dose usage (she's on the lowest dose possible) has been associated with Tardive Dyskinesia, a condition that causes repetitive involuntary facial tics and uncontrolled movements of the limbs. The condition is irreversible and there is no current cure. Obviously we don't want to trade reflux for Tardive Dyskinesia... that's not an acceptable trade-off. The pharmacist that filled her prescriptions yesterday told us that he would try to Emily off of the Reglan as soon as possible. Reglan speeds stomach emptying and supposedly works really well, but the side effects are severe. This will be something we are going to ask our Pediatrician about when we have our first appointment with her. Depending on several circumstances, we may discontinue the use of Reglan on our own if we feel Emily is doing well enough that she does not need that drug. Or perhaps something else could be prescribed. Difficult decisions lie ahead.
Still no "official" discharge date... although it appears all signs are pointing towards either today or tomorrow. We still don't want to get our hopes up, so we alway assume "Tomorrow", because "tomorrow never comes"... So everyday we wake up and say "Maybe tomorrow..." knowing it could be today. But when we go back this afternoon, we're going to make a strong case to the attending physician that we can take her home today, and nothing else will be accomplished in another 24 hours in the hospital. There really isn't much they can do for her at this point other than monitor her. Her nurse last night told us that there wasn't any point in keeping Emily here any longer and that she should go home with us. We'll see how it goes...
(This was taken right after we found out she was being discharged.You can see me holding my Mother's Day present from her.)
The End is Near
I don't have too many more of these old updates from the hospital to post before I start on new topics. I just want everything about Emily in one place. So bear with me for a couple more posts and then we will move on to what is going on with us now that she is home!
From May 7th...
After 14 days in the hospital, we finally can see a light at the end of the tunnel. I spoke to the Pediatric Gastroenterologist(there are only 2 in the Greater Richmond area) over the phone this morning. She said that it appears that Emily's reflux is triggering the apneic spells. What happens is that when Emily refluxes her body goes into a protective mode to prevent aspiration of food contents (milk) into her lungs. She does this by closing her epiglottis, which is a flap that covers the trachea to prevent food from going into the lungs while eating and swallowing. The problem is that because of her immaturity, her body does not take the next step in this process, which is then swallowing and the epiglottis reopening to allow air to flow into the lungs. So when she refluxes (not every time), she does this process and has a "dusky" or apenic episode.
She's been prescribed two medications, Reglan and Zantac. The Reglan promotes gastric emptying and of course Zantac is an antacid. They prescribed her the lowest possible effective dose and they don't anticipate that she will be on it very long. They are ordering us a Tucker Wedge and Sling today also.
We're supposed to "room-in" tomorrow night (Saturday) at the hospital with Emily. So she won't be discharged tomorrow. We're hoping for Sunday (Mother's Day), but that may also be unlikely. Hopefully Monday at the latest... but I'm not holding my breath. This has been a huge exercise in practicing patience. The hospital is still very reluctant to release her to our care at this time. No episodes in 3 days. I think they are still holding out hope for the "5-7 days without an episode" standard. Let's cross our fingers she makes it 2 more days. At this point, it doesn't feel like they will let her go until she does go 5-7 days without an episode.
We'll see what happens...
From May 7th...
After 14 days in the hospital, we finally can see a light at the end of the tunnel. I spoke to the Pediatric Gastroenterologist(there are only 2 in the Greater Richmond area) over the phone this morning. She said that it appears that Emily's reflux is triggering the apneic spells. What happens is that when Emily refluxes her body goes into a protective mode to prevent aspiration of food contents (milk) into her lungs. She does this by closing her epiglottis, which is a flap that covers the trachea to prevent food from going into the lungs while eating and swallowing. The problem is that because of her immaturity, her body does not take the next step in this process, which is then swallowing and the epiglottis reopening to allow air to flow into the lungs. So when she refluxes (not every time), she does this process and has a "dusky" or apenic episode.
She's been prescribed two medications, Reglan and Zantac. The Reglan promotes gastric emptying and of course Zantac is an antacid. They prescribed her the lowest possible effective dose and they don't anticipate that she will be on it very long. They are ordering us a Tucker Wedge and Sling today also.
We're supposed to "room-in" tomorrow night (Saturday) at the hospital with Emily. So she won't be discharged tomorrow. We're hoping for Sunday (Mother's Day), but that may also be unlikely. Hopefully Monday at the latest... but I'm not holding my breath. This has been a huge exercise in practicing patience. The hospital is still very reluctant to release her to our care at this time. No episodes in 3 days. I think they are still holding out hope for the "5-7 days without an episode" standard. Let's cross our fingers she makes it 2 more days. At this point, it doesn't feel like they will let her go until she does go 5-7 days without an episode.
We'll see what happens...
Updates from 5/5 and 5/6
From May 5...
It has been 12 days after Emily was born, and she's still in the hospital. The doctors are completely clueless as to what is causing her apneic episodes. The last possible cause could be GERD (gastroesophagul reflux disease), which 80% of babies have. Her reflux has gotten worse recently, so the current Neonatologist she's seeing (she's seen 6 of the 7 in the NICU and PCN) feels very strongly that she needs a barium swallow test. Although he admits that the test will only tell him the severity of the reflux and rule out a bunch of other rare disorders that he says he doesn't really expect to find. Our main objection to the test is the level of radiation she's exposed to because a barium swallow upper GI study has significantly more radiation than just your regular x-ray. Infants are more sensitive to radiation than adults. We are already treating for reflux (i.e. elevating the head of her mattress 45 degrees, thickening bottle feeds, burping often), so I'm not exactly sure what knowing 100% unequivocally that she has reflux will help with. The doctor is already 99% sure she has reflux, and doesn't expect anything seriously wrong to show up on the study.
We were trained with the home monitor yesterday and it was issued to us. We had our Infant CPR refresher course last Thursday. And the doctor was ready to discharge us today (with or without the barium swallow test) until she had another small apneic episode yesterday while we were at lunch. Luckily she recovered on her own without any intervention. After that, he changed his mind and stated that he would be "really, really, uncomfortable allowing us to leave now" and that if we left it would have to be against medical advice and we would be asked to sign a liability waiver. He said that his goal is to be 100% confident that she's not going to have anymore apneic episodes when she goes home with us. While that goal is very admirable, I think it's very unrealistic. Gair and I never expected to go home and never have an apneic episode, which is why we got trained in CPR again and also agreed to a take home apnea monitor. Why would the hospital send us home with a monitor if they didn't think another episode would occur???
The deeper we get into this issue, the more I start to learn that a lot of babies have apneic episodes and a lot of babies have reflux. They outgrow both conditions before they reach 1 year of age. It seems to us that the reflux might be causing some apneic episodes, but it probably is not thecause of the apnea. It could be, but I don't think the doctors know any better than we do. I know that a lot of babies are sent home and have apneic episodes and nobody ever notices. It's common for babies to stop breathing on their own for as much as 20 seconds. That seems like an eternity to us, but it is normal for an infant. Could it be that what Emily is doing is normal and usually goes unnoticed (since she has recovered on her own some of the time, and only needed minor stimulation the rest of the time)? Would she have recovered on her own if nobody noticed the first apneic episode and came home with us? We don't know. We're actually glad that they caught the first episode because if it is something serious I'd rather come home with an apnea monitor than wake up to a SIDS death.
So we're still in limbo. No official discharge date. No progress made. It's very frustrating watching other babies go home each day, and they were much worse off than Emily when all of this started.
From May 6th...
A lot has h
appened since yesterday. We reluctantly agreed to the barium swallow, upper GI study. Our main objection was that the radiation level was significant for a newborn just to unequivocally diagnose something that they already suspected (GERD). But after weighing the options, and canceling the test twice, we finally decided that the small risk of cancer the radiation may create did not outweigh the risk that potentially severe GERD presented her at the present moment. We spoke to the lady who was going to perform the test, Kathleen. She reassured us that they would use the lowest dose of radiation possible because of Emily's age, and that she would make the amount of time she was exposed to the radiation was minimal. A barium swallow test is like an x-ray movie. Some tests can last as long as 6 hours. Kathleen told us that she may be able to get the results she needs within 20 secs. But she wouldn't be exposed to radiation for more than 5 minutes total (which still seems like a long time for a newborn). I guess it's better than 6 hours. The good news is that they did learn something. They discovered that she has "significant reflux". Kathleen said that it takes a lot to impress her, and she has seen a lot of reflux over the years, and she was impressed! They only fed her 20 cc of liquid (barium mixed in breast milk), and she refluxed almost immediately. So they were able to learn what they wanted to and Emily's exposure to radiation was minimal. I guess this is the best possible outcome considering the circumstances.
The course of action now is to continue treating the reflux. This is what we're going to have to do from this point forward until she outgrows it.
*Emily will sleep on an incline of 45-60 degrees. There is a product called the Tucker Wedge and Sling. http://www.tuckersling.com/
*Thicken feedings. Unfortunately, she will not be able to breast feed exclusively, but she can still have breast milk. We really wanted to avoid using formula. We will have to add a thickening agent to the breast milk for awhile to help her keep it down.
*Have Emily on an antacid, Zantac is what the doctor recommended. She wants to avoid stronger medications because they have undesirable side effects. The Zantac will help prevent damage to her esophagus.
*More frequent, smaller feedings. And pause periodically during feeding to burp. If she eats too fast, it will cause reflux. If she eats too much it will cause reflux.
*She will also be on an Apnea monitor. We've already been given one by the hospital. The alarm sounds if her respiration or heart rate slows down too much. The low limit on the heart rate is 80 bpm. So an alarm will sound if her heart rate drops below 80 bpm. For those that don't know, a normal infant HR range is between 130-150.
*Finally, we will just have to keep an eye on her and keep her upright as much as possible after she eats. We will also have to try and limit crying as much as possible (I know it's impossible to stop a baby from crying, just reducing it is all we will shoot for). Crying is one of the number 1 ways an apneic spell occurs. Because crying causes reflux, if she gets really, really upset, she could have an apneic episode and stop breathing.
So that's the plan. Hopefully she will be home sometime this weekend. It's been the longest 2 weeks of our lives... but at least it's almost over...
It has been 12 days after Emily was born, and she's still in the hospital. The doctors are completely clueless as to what is causing her apneic episodes. The last possible cause could be GERD (gastroesophagul reflux disease), which 80% of babies have. Her reflux has gotten worse recently, so the current Neonatologist she's seeing (she's seen 6 of the 7 in the NICU and PCN) feels very strongly that she needs a barium swallow test. Although he admits that the test will only tell him the severity of the reflux and rule out a bunch of other rare disorders that he says he doesn't really expect to find. Our main objection to the test is the level of radiation she's exposed to because a barium swallow upper GI study has significantly more radiation than just your regular x-ray. Infants are more sensitive to radiation than adults. We are already treating for reflux (i.e. elevating the head of her mattress 45 degrees, thickening bottle feeds, burping often), so I'm not exactly sure what knowing 100% unequivocally that she has reflux will help with. The doctor is already 99% sure she has reflux, and doesn't expect anything seriously wrong to show up on the study.
We were trained with the home monitor yesterday and it was issued to us. We had our Infant CPR refresher course last Thursday. And the doctor was ready to discharge us today (with or without the barium swallow test) until she had another small apneic episode yesterday while we were at lunch. Luckily she recovered on her own without any intervention. After that, he changed his mind and stated that he would be "really, really, uncomfortable allowing us to leave now" and that if we left it would have to be against medical advice and we would be asked to sign a liability waiver. He said that his goal is to be 100% confident that she's not going to have anymore apneic episodes when she goes home with us. While that goal is very admirable, I think it's very unrealistic. Gair and I never expected to go home and never have an apneic episode, which is why we got trained in CPR again and also agreed to a take home apnea monitor. Why would the hospital send us home with a monitor if they didn't think another episode would occur???
The deeper we get into this issue, the more I start to learn that a lot of babies have apneic episodes and a lot of babies have reflux. They outgrow both conditions before they reach 1 year of age. It seems to us that the reflux might be causing some apneic episodes, but it probably is not thecause of the apnea. It could be, but I don't think the doctors know any better than we do. I know that a lot of babies are sent home and have apneic episodes and nobody ever notices. It's common for babies to stop breathing on their own for as much as 20 seconds. That seems like an eternity to us, but it is normal for an infant. Could it be that what Emily is doing is normal and usually goes unnoticed (since she has recovered on her own some of the time, and only needed minor stimulation the rest of the time)? Would she have recovered on her own if nobody noticed the first apneic episode and came home with us? We don't know. We're actually glad that they caught the first episode because if it is something serious I'd rather come home with an apnea monitor than wake up to a SIDS death.
So we're still in limbo. No official discharge date. No progress made. It's very frustrating watching other babies go home each day, and they were much worse off than Emily when all of this started.
From May 6th...
A lot has h
appened since yesterday. We reluctantly agreed to the barium swallow, upper GI study. Our main objection was that the radiation level was significant for a newborn just to unequivocally diagnose something that they already suspected (GERD). But after weighing the options, and canceling the test twice, we finally decided that the small risk of cancer the radiation may create did not outweigh the risk that potentially severe GERD presented her at the present moment. We spoke to the lady who was going to perform the test, Kathleen. She reassured us that they would use the lowest dose of radiation possible because of Emily's age, and that she would make the amount of time she was exposed to the radiation was minimal. A barium swallow test is like an x-ray movie. Some tests can last as long as 6 hours. Kathleen told us that she may be able to get the results she needs within 20 secs. But she wouldn't be exposed to radiation for more than 5 minutes total (which still seems like a long time for a newborn). I guess it's better than 6 hours. The good news is that they did learn something. They discovered that she has "significant reflux". Kathleen said that it takes a lot to impress her, and she has seen a lot of reflux over the years, and she was impressed! They only fed her 20 cc of liquid (barium mixed in breast milk), and she refluxed almost immediately. So they were able to learn what they wanted to and Emily's exposure to radiation was minimal. I guess this is the best possible outcome considering the circumstances.The course of action now is to continue treating the reflux. This is what we're going to have to do from this point forward until she outgrows it.
*Emily will sleep on an incline of 45-60 degrees. There is a product called the Tucker Wedge and Sling. http://www.tuckersling.com/
*Thicken feedings. Unfortunately, she will not be able to breast feed exclusively, but she can still have breast milk. We really wanted to avoid using formula. We will have to add a thickening agent to the breast milk for awhile to help her keep it down.
*Have Emily on an antacid, Zantac is what the doctor recommended. She wants to avoid stronger medications because they have undesirable side effects. The Zantac will help prevent damage to her esophagus.
*More frequent, smaller feedings. And pause periodically during feeding to burp. If she eats too fast, it will cause reflux. If she eats too much it will cause reflux.
*She will also be on an Apnea monitor. We've already been given one by the hospital. The alarm sounds if her respiration or heart rate slows down too much. The low limit on the heart rate is 80 bpm. So an alarm will sound if her heart rate drops below 80 bpm. For those that don't know, a normal infant HR range is between 130-150.
*Finally, we will just have to keep an eye on her and keep her upright as much as possible after she eats. We will also have to try and limit crying as much as possible (I know it's impossible to stop a baby from crying, just reducing it is all we will shoot for). Crying is one of the number 1 ways an apneic spell occurs. Because crying causes reflux, if she gets really, really upset, she could have an apneic episode and stop breathing.
So that's the plan. Hopefully she will be home sometime this weekend. It's been the longest 2 weeks of our lives... but at least it's almost over...
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