ok... quick updates.
Heather told you that Avery went home again on Friday and Emily is still in the hospital.
Both are doing ok. Emily is now 5 pounds and chunk-o is up to SEVEN pounds!!! Avery is having a few apneas while Emily is still having bradycardia events.
btw.... all the things we said about the hospital and NICU we still stand by.... but I believe the pediatric floor of St. Luke's Hospital has turned out very nicely. (amazing what happens when you become the squeaky wheel) I feel that the girls are getting better medical help in pediatrics than in the NICU. The NICU was basically a baby sitting service (and poor one at that), but the pediatric floor has become an organized, caring, prepared, logical and quality medical program. That is not to say it is perfect, but compared to NICU... WOW!
more soon....
bob
Tuesday, May 27, 2008
Saturday, May 24, 2008
Avery home again, Emily still in hospital
Hi All,
Hope this email finds you all doing well. We are blown away by all of your support and advice during this neverending saga. I stayed at the hospital (Pediatric floor) in the room with first Emily then both girls for 8 days. It may be insane but I never even went outside in those days, the only time I left the room was if Bob or my mom was in the room with them. This is how little faith I have in the monitors and the medical staff's ability to monitor the monitors/babies.
Once again I was pushed to voice my displeasure with the lack of monitoring the girls. Alarms would go off constantly, some real events some false alarms. However, no one came into the room no matter what. Guess they figured I would handle it. They basically didn't do anything but check vitals and were around in case they needed CPR. Keep in mind they eat every 2.5-3 hrs and hardly ever at the same time. I was starting to expect my paycheck for being a nurse to two patients. I fed them (which is why we were there - feeding issues), changed them, catered to their every need, etc. etc. etc. Hours would go by without seeing a nurses face. What if I weren't there? When we were admitted they said we could either stay there or go home, our choice. There is no choice......although it meant I literally never closed my eyes. Finally, I was about to collapse (after asking the nurses for help and getting pushback).
This time instead of trying to resolve directly with the nurses or staff I went directly to the social worker and actually got results!!!!! After this I got help. Bob is up there now with Emily and I am at home with Avery. Avery is HUGE! She weighs 6lbs 8 oz. -- she gained 4+ ounces in one night! She is doing well. With diagnostic testing and help from the Speech/Lang Pathologist we have learned to feed her to help her apnea/bradycardias. Her problem is that she LOVES to eat, gets too excited and gulps.
Emily weighs 4 lbs 14 oz. She is doing better with help in eating techniques, but her congestion is terrible. She has Nasopharengeal Reflux -- the milk goes behind her nose, creates mucus and clogs her nose. Babies only breathe through their nose so this is a problem. She burns so many calories trying to breath and keeping her heart regulated that it's hard for her to gain weight. The only solution is suction. I make the nurses suction her nose before every feed so she can breathe and maybe eat better. After she eats her nose is stuffed again.....milk. More to come, but basically just watching and waiting on her. For now she will stay in the hospital. Please pray for little Emily. The dr's say it's just a matter of time before she will outgrow this problem, but she pretty much hates life right now.
Heather
Hope this email finds you all doing well. We are blown away by all of your support and advice during this neverending saga. I stayed at the hospital (Pediatric floor) in the room with first Emily then both girls for 8 days. It may be insane but I never even went outside in those days, the only time I left the room was if Bob or my mom was in the room with them. This is how little faith I have in the monitors and the medical staff's ability to monitor the monitors/babies.
Once again I was pushed to voice my displeasure with the lack of monitoring the girls. Alarms would go off constantly, some real events some false alarms. However, no one came into the room no matter what. Guess they figured I would handle it. They basically didn't do anything but check vitals and were around in case they needed CPR. Keep in mind they eat every 2.5-3 hrs and hardly ever at the same time. I was starting to expect my paycheck for being a nurse to two patients. I fed them (which is why we were there - feeding issues), changed them, catered to their every need, etc. etc. etc. Hours would go by without seeing a nurses face. What if I weren't there? When we were admitted they said we could either stay there or go home, our choice. There is no choice......although it meant I literally never closed my eyes. Finally, I was about to collapse (after asking the nurses for help and getting pushback).
This time instead of trying to resolve directly with the nurses or staff I went directly to the social worker and actually got results!!!!! After this I got help. Bob is up there now with Emily and I am at home with Avery. Avery is HUGE! She weighs 6lbs 8 oz. -- she gained 4+ ounces in one night! She is doing well. With diagnostic testing and help from the Speech/Lang Pathologist we have learned to feed her to help her apnea/bradycardias. Her problem is that she LOVES to eat, gets too excited and gulps.
Emily weighs 4 lbs 14 oz. She is doing better with help in eating techniques, but her congestion is terrible. She has Nasopharengeal Reflux -- the milk goes behind her nose, creates mucus and clogs her nose. Babies only breathe through their nose so this is a problem. She burns so many calories trying to breath and keeping her heart regulated that it's hard for her to gain weight. The only solution is suction. I make the nurses suction her nose before every feed so she can breathe and maybe eat better. After she eats her nose is stuffed again.....milk. More to come, but basically just watching and waiting on her. For now she will stay in the hospital. Please pray for little Emily. The dr's say it's just a matter of time before she will outgrow this problem, but she pretty much hates life right now.
Heather
Monday, May 19, 2008
update
bob here...
It's after 10pm here in beautiful Bethlehem, PA. I'm sitting in a room on the pediatrics floor of St. Lukes Hospital... between the babies... and Heather is sleeping for the first time in days. She is sleeping on this fold out sofa that they have here, but I'd bet she could sleep on rocks right about now.
Heather posted about Emily's trip back to the hospital via the ER but I wanted to update you a bit on where we stand.
Emily - has had a chest xray, barium swallow test, blood tests, virus, tests, pertussis tests, etc... and basically what we have is a swallowing problem. This is what is leading to the massive amounts of phlegm she has, which leads to breathing problems, which leads to apnea and bradys. In addition, her hernia was caused by the tremendous straining she was doing for over a week in the NICU and then at home. The negligent care she received in the NICU created this situation and now she has to have surgery to correct this... i'm VERY unhappy about this... more about this in a second.
Avery - was starting to experience more bradys and apneas at home so we told the pediatrician at the hospital what was going on and she said she wanted Ave admitted. I brought her to St. Luke's on Sunday and they have been running tests on her as well. Her issues are a bit different than Em's. While Emily is sending her food back between her throat and nose, Avery is actually having true GI reflux. This is causing the increase in the A's and B's. When they downloaded the data from Avery's at-home monitor they got 160 pages of data with over 90 brady's since she went home! try to tell me that the NICU didnt discharge her too early.... just try.
Where we go from here: both girls are being closely m0nitored for A's and B's. Both are having thickener added to their food to try to keep it down. Both are being watched to ensure they have proper weight gain and growth. Emily is having her nose suctioned every three hours and having milk of magnesia added to her food to try to keep her more regular. The docs say to expect another week and a half up here.... at least.
Now... to explain my ABSOLUTE, UNMITIGATED, FURIOUS DISPLEASURE with this freakin place....
1. NICU staff unprofessional. Ignored patients. Absolutely a liability to the hospital and a danger to the tiny babies they are supposed to care for.
2. When we tried to address our concerns with the NICU manager she ignored our concerns and told us that was how a NICU worked.
3. When we tried to discuss our concerns directly with the NICU staff they rolled their eyes at us, ignored us and did their own thing.
4. When we loudly, directly and forcefully asked the NICU staff to just "DO THEIR JOB" and watch the babies we were ignored and ridiculed.
5. At 9:30am the morning after Item #4 above we got a call from a NICU doctor informing us they were transferring us out of the Bethlehem NICU to the Allentown NICU and giving us no explanation or choice.
6. The Allentown NICU staff made it very clear they thought we were troublemakers that needed to be shut down. They expressly told us that we would be causing them no problems.
7. The NICU doctor told us that we were definitely moved due to us expressing our concerns and that we should not have tried to resolve this through proper channels and should have just gone to him (who, coincidently, we hadnt seen in 2 weeks).
8. Even though we had 2 doctors and various nurses say our babies would be in the NICU for a few more weeks the doctors had both babies discharged within 1 week of transferring even though Emily had failed her car seat test less than 24 hours before miraculously passing it.
9. We were discharged with no CPR training other than the nurses suggesting we watch a CPR video.
10. We were discharged with no training on what to do if the home-monitors sounded.
11. We were discharged with one baby that had been constipated for a week to the point that she developed a hernia.
12. We were discharged with a baby that could NOT breathe out of her nose due to massive amounts of phlegm.
13. Neither baby had been given a swallow test, even though this is considered a standard and necessary test for premature babies.
14. When discharged we were told to not call NICU if we had problems or questions but to call the pediatrician or 911 (even though we had never brought the girls to the ped and he had never seen them).
15. After the ambulance ride back to the hospital the ER pulled AVERY'S chart even though we told the ER staff numerous times that we brought Emily to them.
16. The nurses on the pediatric floor told Heather it is NOT their job to help feed or care for the babies and she has to do everything herself.
17. This doesnt account for the little fact that the anesthesiologist "forgot" to give Heather any pain med to prepare for the spinal to wear off. She left the recovery room basically as if she had never been numbed for a c-section at all.
so... needless to say... i'm furious. and taking action. believe me, I'm going up the chain of command here at the hospital. they have a system-wide problem that, if it hasnt already, WILL result in the demise of a patient. and neither Heather nor I are willing to sit idly by and let our babies be these patients.
on one hand I'm happy that the girls are getting some of their issues evaluated and addressed. on the other hand I have such little faith in the system here that neither Heather or I feel comfortable leaving the girls for more than a few minutes for fear that the staff will NOT respond to alarms, crys, needs, etc... Not fun.
please let us know if you've experienced anything like this, have any thoughts or ideas, or think we are just expecting too much from our health care providers!
we will keep you up to date as things progress.
bob
It's after 10pm here in beautiful Bethlehem, PA. I'm sitting in a room on the pediatrics floor of St. Lukes Hospital... between the babies... and Heather is sleeping for the first time in days. She is sleeping on this fold out sofa that they have here, but I'd bet she could sleep on rocks right about now.
Heather posted about Emily's trip back to the hospital via the ER but I wanted to update you a bit on where we stand.
Emily - has had a chest xray, barium swallow test, blood tests, virus, tests, pertussis tests, etc... and basically what we have is a swallowing problem. This is what is leading to the massive amounts of phlegm she has, which leads to breathing problems, which leads to apnea and bradys. In addition, her hernia was caused by the tremendous straining she was doing for over a week in the NICU and then at home. The negligent care she received in the NICU created this situation and now she has to have surgery to correct this... i'm VERY unhappy about this... more about this in a second.
Avery - was starting to experience more bradys and apneas at home so we told the pediatrician at the hospital what was going on and she said she wanted Ave admitted. I brought her to St. Luke's on Sunday and they have been running tests on her as well. Her issues are a bit different than Em's. While Emily is sending her food back between her throat and nose, Avery is actually having true GI reflux. This is causing the increase in the A's and B's. When they downloaded the data from Avery's at-home monitor they got 160 pages of data with over 90 brady's since she went home! try to tell me that the NICU didnt discharge her too early.... just try.
Where we go from here: both girls are being closely m0nitored for A's and B's. Both are having thickener added to their food to try to keep it down. Both are being watched to ensure they have proper weight gain and growth. Emily is having her nose suctioned every three hours and having milk of magnesia added to her food to try to keep her more regular. The docs say to expect another week and a half up here.... at least.
Now... to explain my ABSOLUTE, UNMITIGATED, FURIOUS DISPLEASURE with this freakin place....
1. NICU staff unprofessional. Ignored patients. Absolutely a liability to the hospital and a danger to the tiny babies they are supposed to care for.
2. When we tried to address our concerns with the NICU manager she ignored our concerns and told us that was how a NICU worked.
3. When we tried to discuss our concerns directly with the NICU staff they rolled their eyes at us, ignored us and did their own thing.
4. When we loudly, directly and forcefully asked the NICU staff to just "DO THEIR JOB" and watch the babies we were ignored and ridiculed.
5. At 9:30am the morning after Item #4 above we got a call from a NICU doctor informing us they were transferring us out of the Bethlehem NICU to the Allentown NICU and giving us no explanation or choice.
6. The Allentown NICU staff made it very clear they thought we were troublemakers that needed to be shut down. They expressly told us that we would be causing them no problems.
7. The NICU doctor told us that we were definitely moved due to us expressing our concerns and that we should not have tried to resolve this through proper channels and should have just gone to him (who, coincidently, we hadnt seen in 2 weeks).
8. Even though we had 2 doctors and various nurses say our babies would be in the NICU for a few more weeks the doctors had both babies discharged within 1 week of transferring even though Emily had failed her car seat test less than 24 hours before miraculously passing it.
9. We were discharged with no CPR training other than the nurses suggesting we watch a CPR video.
10. We were discharged with no training on what to do if the home-monitors sounded.
11. We were discharged with one baby that had been constipated for a week to the point that she developed a hernia.
12. We were discharged with a baby that could NOT breathe out of her nose due to massive amounts of phlegm.
13. Neither baby had been given a swallow test, even though this is considered a standard and necessary test for premature babies.
14. When discharged we were told to not call NICU if we had problems or questions but to call the pediatrician or 911 (even though we had never brought the girls to the ped and he had never seen them).
15. After the ambulance ride back to the hospital the ER pulled AVERY'S chart even though we told the ER staff numerous times that we brought Emily to them.
16. The nurses on the pediatric floor told Heather it is NOT their job to help feed or care for the babies and she has to do everything herself.
17. This doesnt account for the little fact that the anesthesiologist "forgot" to give Heather any pain med to prepare for the spinal to wear off. She left the recovery room basically as if she had never been numbed for a c-section at all.
so... needless to say... i'm furious. and taking action. believe me, I'm going up the chain of command here at the hospital. they have a system-wide problem that, if it hasnt already, WILL result in the demise of a patient. and neither Heather nor I are willing to sit idly by and let our babies be these patients.
on one hand I'm happy that the girls are getting some of their issues evaluated and addressed. on the other hand I have such little faith in the system here that neither Heather or I feel comfortable leaving the girls for more than a few minutes for fear that the staff will NOT respond to alarms, crys, needs, etc... Not fun.
please let us know if you've experienced anything like this, have any thoughts or ideas, or think we are just expecting too much from our health care providers!
we will keep you up to date as things progress.
bob
Saturday, May 17, 2008
Update on Emily
I am staying at the hospital with Emily and Bob is home with Avery.
After a Barium swallow test, the speech path/swallow expert saw that milk is getting into Emily's nasopharynx (between her nose and throat) when she eats/drinks. This is creating mucus in there that we cannot get out by suction at home. Therefore, after so long of not getting that stuff out it just finally clogged her up and she couldn't breathe. I am making the nurses suction her out with their high powered machine a few times a day. This seems to be helping dramatically. We thickened her milk to help gravity keep it going down, not back up into her nose/throat. Hopefully this will help until her anatomy is mature enough keep the milk where it is supposed to be.
The other problem is constipation. Apparently the hernia she has is from pushing and grunting so hard from not going to the bathroom. The GI specialist examined her and the hernia last night. We are giving her 1ml of milk of magnesia in her milk to get the pipes flowing. It worked!!! It seems she might be getting better.
So, keep in mind that the main problem is that she stops breathing and drops her heart rate often. Mucus caused these things in her nose and constipation when they grunt/strain they hold their breath which drops her heart rate -- vagal response. These issues may sound like the sniffles and trouble pooping....basic baby stuff that goes away. But, they can be detrimental. We should have followed our gut once again and pushed these issues when everyone in the NICU told us its just "normal preemie stuff" or "paranoid". We are not idiots. Lesson learned AGAIN, you have to push and second guess everything.
The apnea monitors have a memory card in them that records all of the A's and B's that occur. When the NICU got this report they were shocked at how many episodes she was having. No kidding, we have told everyone we have been complete wrecks the last week with the number of times both of them stop breathing and turn blue. Can you imagine your babies turning blue in your arms? It's not fun. Now imagine it happening 20 times a day -- per kid. Unacceptable. The stress is tremendous. At least now they are paying attention to us.
By the way, when we mentioned that Avery has many events also they want to admit her as well. If this is what it takes to get them healthy we will do it. Doesn't it seem like it would have been easier to run these tests in the NICU??? Why are they experimenting with these babies by sending them home? Will they sink or swim? Not their problem any more once they are discharged, so why not get them out as soon as possible?
They are both gaining weight, yeah!!! Emily - 4 lb 8 oz and Avery 5 lb 12 oz. Avery is a CHUNKY MONKEY!!! :)
Heather
After a Barium swallow test, the speech path/swallow expert saw that milk is getting into Emily's nasopharynx (between her nose and throat) when she eats/drinks. This is creating mucus in there that we cannot get out by suction at home. Therefore, after so long of not getting that stuff out it just finally clogged her up and she couldn't breathe. I am making the nurses suction her out with their high powered machine a few times a day. This seems to be helping dramatically. We thickened her milk to help gravity keep it going down, not back up into her nose/throat. Hopefully this will help until her anatomy is mature enough keep the milk where it is supposed to be.
The other problem is constipation. Apparently the hernia she has is from pushing and grunting so hard from not going to the bathroom. The GI specialist examined her and the hernia last night. We are giving her 1ml of milk of magnesia in her milk to get the pipes flowing. It worked!!! It seems she might be getting better.
So, keep in mind that the main problem is that she stops breathing and drops her heart rate often. Mucus caused these things in her nose and constipation when they grunt/strain they hold their breath which drops her heart rate -- vagal response. These issues may sound like the sniffles and trouble pooping....basic baby stuff that goes away. But, they can be detrimental. We should have followed our gut once again and pushed these issues when everyone in the NICU told us its just "normal preemie stuff" or "paranoid". We are not idiots. Lesson learned AGAIN, you have to push and second guess everything.
The apnea monitors have a memory card in them that records all of the A's and B's that occur. When the NICU got this report they were shocked at how many episodes she was having. No kidding, we have told everyone we have been complete wrecks the last week with the number of times both of them stop breathing and turn blue. Can you imagine your babies turning blue in your arms? It's not fun. Now imagine it happening 20 times a day -- per kid. Unacceptable. The stress is tremendous. At least now they are paying attention to us.
By the way, when we mentioned that Avery has many events also they want to admit her as well. If this is what it takes to get them healthy we will do it. Doesn't it seem like it would have been easier to run these tests in the NICU??? Why are they experimenting with these babies by sending them home? Will they sink or swim? Not their problem any more once they are discharged, so why not get them out as soon as possible?
They are both gaining weight, yeah!!! Emily - 4 lb 8 oz and Avery 5 lb 12 oz. Avery is a CHUNKY MONKEY!!! :)
Heather
Friday, May 16, 2008
Emily back in hospital....
So my mom and I are driving Avery and Emily to their 2nd pediatrician appointment Thursday morning when Emily's apnea monitor went off. This is nothing unusual, but my fear was that it would happen while I was driving and I couldn't pull over in time. Luckily we had just pulled into the parking lot.
We are used to the A's and B's and we just have to stimulate them by tapping their feet or rubbing their back and they start breathing again and their heart rate comes back up. This time was different.....the stimulating did not work. She would start to get her heart rate up a little (to about 110) then dip back down over and over again. Also, she was limp, blue and her eyes were rolling back in her head. We started doing "mini compressions" on her chest and I ran into the ped's office to get help. Dr. Braff ran to the car, promptly assessed her and quickly carried her inside. By this time the paramedics were there and they all began working on little Emily. They suctioned out A TON of mucus out of her nose which had basically blocked her airway and she couldn't breathe.
The staff at Hunterdon Pediatrics was awesome. Dr. Braff was incredible, thank you, thank you, thank you. After they got her on oxygen she stabilized enough to get her into the ambulance and get her to the ER. We went back to St. Lukes since they are familiar with her (since she was just discharged 6 days ago). This begs the question....was she ready to leave the NICU? NO! Somehow both Bob and I knew we would end up in the ER, she was not ready to come home.
In the ambulance and the ER Emily dropped her heart rate several times. We were admitted into Pediatrics and we currently sit in the hospital room trying to figure out what happened. Bob and I have been telling everyone that she flat out cannot breathe, it's torture listening to her 24/7. We also kept telling everyone that she was constipated. These are not good things in general, but especially not in a 4 lb baby. Why will medical staff not listen to us?
Today we finally feel like they are getting a plan of action together to find out why they are having so many apnea/bradycardia episodes. More on that as it happens....
We are used to the A's and B's and we just have to stimulate them by tapping their feet or rubbing their back and they start breathing again and their heart rate comes back up. This time was different.....the stimulating did not work. She would start to get her heart rate up a little (to about 110) then dip back down over and over again. Also, she was limp, blue and her eyes were rolling back in her head. We started doing "mini compressions" on her chest and I ran into the ped's office to get help. Dr. Braff ran to the car, promptly assessed her and quickly carried her inside. By this time the paramedics were there and they all began working on little Emily. They suctioned out A TON of mucus out of her nose which had basically blocked her airway and she couldn't breathe.
The staff at Hunterdon Pediatrics was awesome. Dr. Braff was incredible, thank you, thank you, thank you. After they got her on oxygen she stabilized enough to get her into the ambulance and get her to the ER. We went back to St. Lukes since they are familiar with her (since she was just discharged 6 days ago). This begs the question....was she ready to leave the NICU? NO! Somehow both Bob and I knew we would end up in the ER, she was not ready to come home.
In the ambulance and the ER Emily dropped her heart rate several times. We were admitted into Pediatrics and we currently sit in the hospital room trying to figure out what happened. Bob and I have been telling everyone that she flat out cannot breathe, it's torture listening to her 24/7. We also kept telling everyone that she was constipated. These are not good things in general, but especially not in a 4 lb baby. Why will medical staff not listen to us?
Today we finally feel like they are getting a plan of action together to find out why they are having so many apnea/bradycardia episodes. More on that as it happens....
Saturday, May 10, 2008
What a Mother's Day....
TOGETHER AT LAST!!!! The day has come....they are home and together, and they couldn't be happier (neither could we). As we wheeled the double decker out of the NICU we had mixed feelings, however. We wanted to get the heck out of there, but I was also scared about the monitors. The weight is literally on our shoulders to make sure they breathe now -- no pressure. They are both still experiencing A's and B's (forgetting to breathe and dropped heart rate), which is why we have the monitors. This is incredibly scary without nurses, drs., staff, oxygen tanks, etc. The problems mostly occur during feeding. After a couple of midnight calls to the NICU for advice we got through the night. It was not easy at all.
God bless all mothers on this Mother's Day. The experience is fresh in my mind and believe me, we owe our mothers everything. Not leaving out fathers, etc.....but, moms really go through a lot to get little miracles into the world and I guess the love and giving never stops.
I could not ask for anything more today. Just to know that BOTH girls are in this world and safe with us is blessing enough for me.
FYI -- To new moms: When you get your first haircut after delivery.....don't do anything drastic! I felt daring and got bangs, not a good idea. So, my look is a little rough right now btwn the extra weight, the leftover breakouts and the new hair. Yikes! ;)
Gotta go feed some babies!
Heather
God bless all mothers on this Mother's Day. The experience is fresh in my mind and believe me, we owe our mothers everything. Not leaving out fathers, etc.....but, moms really go through a lot to get little miracles into the world and I guess the love and giving never stops.
I could not ask for anything more today. Just to know that BOTH girls are in this world and safe with us is blessing enough for me.
FYI -- To new moms: When you get your first haircut after delivery.....don't do anything drastic! I felt daring and got bangs, not a good idea. So, my look is a little rough right now btwn the extra weight, the leftover breakouts and the new hair. Yikes! ;)
Gotta go feed some babies!
Heather
Thursday, May 8, 2008
One home, one on the way!
Hi All, sorry it took so long to give an update....we actually ended up bringing Avery home yesterday (Wednesday) afternoon after a long day and night at the NICU. The monitor people trained us, got CPR training and practiced being alone with Avery in a hospital room. This was nice b/c the monitor kept beeping with false alarms which would hve been really scary at home.
It's been a tiring couple of days and nights, as all of you parents know. At this point we are just trying to put everything into practice that we have learned about caring for preemies. They sure do squirm and squeak a lot!! Overall, it's been fine, although it was hard to leave Emily in the NICU.
We just got the news a minute ago that we will be able to bring Emily home TOMORROW! This is where the reality begins, I'm afraid. It was nice to ease into it with Avery home for two nights. The only problem is Emily has a little hernia and has to have surgery -- not right away, in a month or two. Apparently she is not in pain, just something that has to be fixed. This is pretty common in preemies and equates to a kid having their tonsils out. It seems like the saga never ends. So, I ask for more prayers for little Emily and for us to get through this time.
Thank you all for your support,
Heather
It's been a tiring couple of days and nights, as all of you parents know. At this point we are just trying to put everything into practice that we have learned about caring for preemies. They sure do squirm and squeak a lot!! Overall, it's been fine, although it was hard to leave Emily in the NICU.
We just got the news a minute ago that we will be able to bring Emily home TOMORROW! This is where the reality begins, I'm afraid. It was nice to ease into it with Avery home for two nights. The only problem is Emily has a little hernia and has to have surgery -- not right away, in a month or two. Apparently she is not in pain, just something that has to be fixed. This is pretty common in preemies and equates to a kid having their tonsils out. It seems like the saga never ends. So, I ask for more prayers for little Emily and for us to get through this time.
Thank you all for your support,
Heather
Saturday, May 3, 2008
It's official - new NICU!
Love the new NICU! Although it took stepping on some toes, the new NICU is awesome. The dr. did confirm that it was b/c we complained that they moved us. How about that? They didn't want to hear our side of things and just defended their nurses, they basically just ignored the problems and wanted to put out the fire. Oh, well.....I guess they are scared we will sue them or something b/c everyone is walking on eggshells and watching the girls like hawks --- AS THEY SHOULD. It's very small, quiet, the lights are dimmed.....this is how any NICU should be for proper development of preemies. If the girls even make a sound they are right on it. There are 5 nurses/staff for 4 babies at the new place, and they sit right by the crib to monitor. Love it, love it, love it.
Things are moving very quickly. Avery is eating from a bottle all the time so she got her feeding tube out yesterday. So, get this.....she has nothing aiding her any more!! She looks like a real baby now! The only things attached to her are the sticky monitor things on her foot and tummy to make sure her heart rate and breathing saturation are ok.
Miss Emily is no longer on oxygen and in an open crib (which means she is regulating her own temperature)!!!!!!!! She is taking the bottle very well so they will be upping her to all bottle before we know it. They are both about even as far as the Apnea is concerned. They will both be coming home on monitors, so we have to get trained on that and CPR. We are pretty nervous about them coming home still having breathing issues, but figure they wouldn't do it if the risk was too high.
So, the big news is that Avery is coming home TUESDAY!!!! We are spending the night at the hospital Monday night in a room called "night watch" where we practice everything on our own, but if we need help we call and the NICU nurses walk around the corner into the room. I think we will feel better if this goes successfully. We are in crunch mode buying the little things to finish off our stockpile of supplies. Wow this is happening so fast....but we are ecstatic!! Also, we have a sneaking suspicion that Emily is only about a week behind Avery.
We got the straight scoop on twins running in families. The bottom line is that some families are predisposed to twinning (doesn't matter if it's fraternal or identical) and some are not. There is no exact science as to who might have them (skipping generations, etc) but just know that if you have twins in your family you have a chance. In our case, my great-grandmother had boy/girl fraternal twins and Bob's great-grandmother had identical girl twins. So, together we had a pretty good chance of twins.....who knew!!!!!!!!!!!! The other interesting thing we learned is that since they are twins, the genes are actually pulled back from prior generations. Therefore, certain characteristics are passed from them not us - like hair color and eye color. That's why sometimes parents with both brown hair and eyes can get red haired, blue eyed children. B/c twinning is a recessive gene it tends to pull other recessive genes with it. Cool, huh?
FYI...announcements will be sent out in few weeks. We have this really great photographer for kids magazines lined up to get newborn shots (www.heathermosher.com). As soon as they are both home we can get it done and get them send out.
Thanks again for all your love and support. We have only had this site up for a few weeks and we over 600 people (ip addresses) who have logged on!!!! That's awesome. Thank you all again for helping us get through this crazy experience.
Heather
Things are moving very quickly. Avery is eating from a bottle all the time so she got her feeding tube out yesterday. So, get this.....she has nothing aiding her any more!! She looks like a real baby now! The only things attached to her are the sticky monitor things on her foot and tummy to make sure her heart rate and breathing saturation are ok.
Miss Emily is no longer on oxygen and in an open crib (which means she is regulating her own temperature)!!!!!!!! She is taking the bottle very well so they will be upping her to all bottle before we know it. They are both about even as far as the Apnea is concerned. They will both be coming home on monitors, so we have to get trained on that and CPR. We are pretty nervous about them coming home still having breathing issues, but figure they wouldn't do it if the risk was too high.
So, the big news is that Avery is coming home TUESDAY!!!! We are spending the night at the hospital Monday night in a room called "night watch" where we practice everything on our own, but if we need help we call and the NICU nurses walk around the corner into the room. I think we will feel better if this goes successfully. We are in crunch mode buying the little things to finish off our stockpile of supplies. Wow this is happening so fast....but we are ecstatic!! Also, we have a sneaking suspicion that Emily is only about a week behind Avery.
We got the straight scoop on twins running in families. The bottom line is that some families are predisposed to twinning (doesn't matter if it's fraternal or identical) and some are not. There is no exact science as to who might have them (skipping generations, etc) but just know that if you have twins in your family you have a chance. In our case, my great-grandmother had boy/girl fraternal twins and Bob's great-grandmother had identical girl twins. So, together we had a pretty good chance of twins.....who knew!!!!!!!!!!!! The other interesting thing we learned is that since they are twins, the genes are actually pulled back from prior generations. Therefore, certain characteristics are passed from them not us - like hair color and eye color. That's why sometimes parents with both brown hair and eyes can get red haired, blue eyed children. B/c twinning is a recessive gene it tends to pull other recessive genes with it. Cool, huh?
FYI...announcements will be sent out in few weeks. We have this really great photographer for kids magazines lined up to get newborn shots (www.heathermosher.com). As soon as they are both home we can get it done and get them send out.
Thanks again for all your love and support. We have only had this site up for a few weeks and we over 600 people (ip addresses) who have logged on!!!! That's awesome. Thank you all again for helping us get through this crazy experience.
Heather
Friday, May 2, 2008
Lots of changes!!
WOW!!!! What an exciting last few days. The girls are doing well, just working on temperature, feeding and breathing. Avery is weighing in at a whopping 4 lbs 13 oz and Emily at 3 lbs 10 oz. They change every single day, it's wild. Considering they should still be in utero, it's pretty cool that we get to actually see their rapid growth. More pictures are to come, I promise, we are getting them on soon.....we are at the NICU pretty much all the time now.
In the last post we were getting bent out of shape b/c the NICU nurses were getting really lax. Well, yesterday we decided to go up in the morning instead of afternoon into the night. We had a sneaking suspicion we needed to keep them on their toes and BOY WERE WE RIGHT!!!!!! When we walked in there were two nurses (Rosanne and Jen) on the "feeders and growers" side for 10 babies. Ok, they got a lot of admissions so it was a little crowded, no big deal. Jen had the girls and all was fine.
Roseanne on the other hand, clearly did not want to be there. I have never heard senseless chit chat in a work environment. She completely ignored the monitors dinging meaning babies were having trouble breathing and might need stimulation. She never once introduced herself or checked on our side of the room. She sat in a huge recliner facing the wall and fed one baby with her back to all of the other 9 babies when Jen went to lunch. It was worse than any babysitting job could be. Still, she didn't have our girls so we were ok with Jen so we went to the cafeteria. Just as were were about to leave Bob thought maybe we should go back up there at 3:00pm when there is a shift change to meet the nurse coming on (Ellie) that we didn't know.
First of all, it took Ellie 45 minutes to recognize that we were in the room. Normally within our first steps into the NICU whoever has our kids greets us and gives us an update immediately. Then we converse with them throughout our time there. So, here we are taking care of Avery and Emily ourselves while waiting for our nurse to come over to us. Sometimes they are busy with other babies so we are patient, but they at least make eye contact with us. It turns out that it was our nurse (Ellie) who was sitting with Roseanne chit chatting about nonsense in the corner. Mind you, these are women in their 40's-50's not teenagers. We heard about everything from their kids to grandkids to text messaging, their cars, relationships with husbands, etc. etc. etc. Finally Ellie comes over and introduces herself.
Very long story short....we arrived at 11:30am and did not leave until 11:00pm. We were so uncomfortable with how Ellie and Rosanne were managing the babies that we felt we couldn't leave our babies and all the others unattended. Let's put it this way, there were three times where there was NO NURSE on that side of the NICU for over 5 minutes. One time there was NO NURSE for over 15 minutes. How is that acceptable????? Do you know any daycare, church nursery or babysitter that would leave 10 sick babies under 5 pounds alone for 15 minutes?
After 6 hours of frustration and biting our tongues over the terrible care the babies were receiving (we will spare the details)......we lost it. Bob had to physically walk out of the NICU as not to explode and I was still pretty calm. But, here's the straw that broke the camel's back......I asked Ellie for a pacifier for Emily 4 times b/c she was still upset, rooting, sucking air and raising her heart rate after she ate (which we had to catch and handle). She brought me one that was WAY too big for Emily's little mouth. I let her know that she had never had one this big and asked for the smaller one instead. She said it would be good for her to have the bigger one. Well, every other nurse to this point thinks she needs the smaller one. Emily gagged over and over with the big one. I finally asked another nurse that we know from the other side of the NICU to help me. Emily loved the smaller pacifier and went to sleep immediately.
Keep in mind, the whole time Rosanne and Ellie are again talking about nonsense not even thinking about the babies. Then Avery's alarm goes off and they didn't even look up!!! Finally, I lost it. Bob walked in just in time to see the fireworks...he said I was firm but not over the top. There were other parents in there and everything, but I didn't care, they need to be warned also. They actually thanked me later for enlightening them as they had just arrived the day before. It's simple.....keep your mouth shut and watch the babies. I would not have paid these ladies one dollar to watch our kids, much less the thousands that it costs per baby every day in there. We are very displeased with St. Luke's NICU.
So, we get a phone call this morning that our girls will be transferred to another NICU by ambulance today. We knew they were terribly overcrowded, but if the nurses would get off their butts and actually do their job maybe they could handle it. I am sure the timing is coincidence, as Avery and Emily are the healthiest on that side, but one has to wonder!!! We are off for another full day at the hospital to monitor the transfer. Sorry for the rant, but people don't need to assume these sick babies are in good hands. Luckily there are only two babies and two nurses at the other hospital, so maybe, just maybe they will be watched. Wish us luck!!!!!!!!!!!!!!!!
Heather
In the last post we were getting bent out of shape b/c the NICU nurses were getting really lax. Well, yesterday we decided to go up in the morning instead of afternoon into the night. We had a sneaking suspicion we needed to keep them on their toes and BOY WERE WE RIGHT!!!!!! When we walked in there were two nurses (Rosanne and Jen) on the "feeders and growers" side for 10 babies. Ok, they got a lot of admissions so it was a little crowded, no big deal. Jen had the girls and all was fine.
Roseanne on the other hand, clearly did not want to be there. I have never heard senseless chit chat in a work environment. She completely ignored the monitors dinging meaning babies were having trouble breathing and might need stimulation. She never once introduced herself or checked on our side of the room. She sat in a huge recliner facing the wall and fed one baby with her back to all of the other 9 babies when Jen went to lunch. It was worse than any babysitting job could be. Still, she didn't have our girls so we were ok with Jen so we went to the cafeteria. Just as were were about to leave Bob thought maybe we should go back up there at 3:00pm when there is a shift change to meet the nurse coming on (Ellie) that we didn't know.
First of all, it took Ellie 45 minutes to recognize that we were in the room. Normally within our first steps into the NICU whoever has our kids greets us and gives us an update immediately. Then we converse with them throughout our time there. So, here we are taking care of Avery and Emily ourselves while waiting for our nurse to come over to us. Sometimes they are busy with other babies so we are patient, but they at least make eye contact with us. It turns out that it was our nurse (Ellie) who was sitting with Roseanne chit chatting about nonsense in the corner. Mind you, these are women in their 40's-50's not teenagers. We heard about everything from their kids to grandkids to text messaging, their cars, relationships with husbands, etc. etc. etc. Finally Ellie comes over and introduces herself.
Very long story short....we arrived at 11:30am and did not leave until 11:00pm. We were so uncomfortable with how Ellie and Rosanne were managing the babies that we felt we couldn't leave our babies and all the others unattended. Let's put it this way, there were three times where there was NO NURSE on that side of the NICU for over 5 minutes. One time there was NO NURSE for over 15 minutes. How is that acceptable????? Do you know any daycare, church nursery or babysitter that would leave 10 sick babies under 5 pounds alone for 15 minutes?
After 6 hours of frustration and biting our tongues over the terrible care the babies were receiving (we will spare the details)......we lost it. Bob had to physically walk out of the NICU as not to explode and I was still pretty calm. But, here's the straw that broke the camel's back......I asked Ellie for a pacifier for Emily 4 times b/c she was still upset, rooting, sucking air and raising her heart rate after she ate (which we had to catch and handle). She brought me one that was WAY too big for Emily's little mouth. I let her know that she had never had one this big and asked for the smaller one instead. She said it would be good for her to have the bigger one. Well, every other nurse to this point thinks she needs the smaller one. Emily gagged over and over with the big one. I finally asked another nurse that we know from the other side of the NICU to help me. Emily loved the smaller pacifier and went to sleep immediately.
Keep in mind, the whole time Rosanne and Ellie are again talking about nonsense not even thinking about the babies. Then Avery's alarm goes off and they didn't even look up!!! Finally, I lost it. Bob walked in just in time to see the fireworks...he said I was firm but not over the top. There were other parents in there and everything, but I didn't care, they need to be warned also. They actually thanked me later for enlightening them as they had just arrived the day before. It's simple.....keep your mouth shut and watch the babies. I would not have paid these ladies one dollar to watch our kids, much less the thousands that it costs per baby every day in there. We are very displeased with St. Luke's NICU.
So, we get a phone call this morning that our girls will be transferred to another NICU by ambulance today. We knew they were terribly overcrowded, but if the nurses would get off their butts and actually do their job maybe they could handle it. I am sure the timing is coincidence, as Avery and Emily are the healthiest on that side, but one has to wonder!!! We are off for another full day at the hospital to monitor the transfer. Sorry for the rant, but people don't need to assume these sick babies are in good hands. Luckily there are only two babies and two nurses at the other hospital, so maybe, just maybe they will be watched. Wish us luck!!!!!!!!!!!!!!!!
Heather
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