Hi All!! I hope everyone is doing well. If you can't tell by our lack of updates, we are still buried, but doing much better. We are keeping our head above water, trying slowly to get some resemblance of our life back. The girls were starting to sleep through the night but reverted for some reason. So, we are back to getting little to no sleep. They are growing and it's hard to keep them full. If anyone has any hints please email us.
The girls are smiling, laughing, cooing, following us with their eyes, batting at toys, doing tummy, finding their hands and we think they are starting to interact/see one another! Too cool! Get this -- Emily is pretty much rolling over (check out the new videos)! They love the swing and jumperoo, their head control is getting very good. It's so confusing b/c while the girls are 4+ months old, they are really only 2+ months old b/c they were so premature. So, their size is more like newborn to 2 months, but they are coordinated and interested in activities that a 3 or 4 month old would like. Kind of strange. It all evens out, apparently. We are also starting them on sign language. As most of you know, my brother is deaf, so this comes very natural for us. They are definitely reacting to our signs and starting to immitate "mama". Bob and I have a little contest to see if they start signing "mama" or "daddy" first by me only saying and signing mama and him daddy!
We are burning the candle at both ends, but slowly getting organized - which seems to make all the difference. Again, kudos to any parent, it ain't easy. This is the hardest thing we have ever done, but definitely worth it. It's so hard to swallow that LITERALLY every second is spent on their basic needs (forget ours!) - and that's not even enough. Wow.
The many trips to specialists take lots of time, but we are definitely pleased with our new hospital/team of drs. So far, so good. Their apnea and drops in heart rate are doing much better. They are still on the monitors, can't get them off yet. Oh, well. Some of you may have noticed pink patches on the girls' foreheads. This is called 'stork bite' or 'angel's kiss', or a group of blood vessels close to the skin from being cramped in my belly. The docs say it should be gone by 6 months or shortly thereafter. Nothing permanent.
All in all, we are so happy not only that they are in our lives, but that they will have each other. Thank you all for your prayers and wonderful cards and gifts. See below for some of my thoughts for new parents......
My favorite products and hints for new parents --
**Keep all boxes and receipts, and don't take tags off of things, you never know what you will or won't need until the time comes**
Make up bottles for 24 hours in advance.
Get help getting organized!
Pampers swaddlers are great!
Can't live without:
**********BOPPY NEWBORN LOUNGER**********,not your average boppy,
Pottery Barn kids 'SLING' diaper bag,
Bottle warmer (any brand - one for upstairs, one for down),
JJ Cole (or Skiphop makes one) Diaper Caddy to have in other rooms besides nursery - houses diapers, wipes, drawer for creams, etc.,
Purell with moisturizer (white not clear),
Small toys/rattles - get something with a mirror on it,
Bathtub with a SLING in it....have several and use the cheap one with the sling to hold them securely.
"Sheet savers"/changing pads soft and waterproof
Nice to have:
Mountain buggy stroller is the best! Especially with the double carry cot attachment.
Swing of some kind - have the Newborn soothing center by Graco, old kind works just fine too
Jumperoo - my girls already love it and they can barely hold their head up (prop with blankets)
Gym - anything with lights and music, but Baby Einstein is good
Toy thing that makes bubble noise with good music - Fisher Price Aquarium
Something that gives off white noise/womb sounds, even a fan or a/c
Music in nursery - mp3, cd player so you can put something on repeat and it never stops playing
Recliner in nursery
Pac n play or Co sleeper
Make sure to have a breast pump that is portable, can be thrown into tote for impromptu trips to grandma's
Would not recommend:
A mobile that winds up, see if you can find something with batteries.
More later....
Heather
Wednesday, August 13, 2008
Wednesday, July 16, 2008
Long time, no blog
Hi Everyone,
We apologize for taking so long to update. Needless to say we have our hands full. Basically, as soon as both girls got home from the hospital we had to plan for Emily's bilateral hernia surgery. She had it two weeks ago and is healing, seemingly with little pain left. Also, Bob's mom came into town to lend a hand -- we cannot thank her enough for her "baby whisperer" insight. THANK YOU!!! Another thank you to my fam as well - we literallly couldn't do it without you. So, here are the updates:
Avery - MUST weigh 11-12 lbs, 21 inches long. She is a monster and gaining by the second. I think she could knock someone out with her cheeks! Developmentally doing really well, she is doing great with eye contact/following things and started smiling this weekend. Miss Avery Claire is very curious about the world with her big blue eyes taking it all in like a sponge.
Emily - Weighs a whopping 7 1/2 lbs., 20 inches long. Emily is our lean, mean grunting machine. We hoped the surgery would solve all of her grunting, but it hasn't. The Pediatric Gastroenterologist thinks she might have a milk/soy protein intolerance. So, I have cut out anything with these ingredients...which is a lot of products! We have basically gone completely organic - probably not a bad thing. This may have helped slightly, but we are just going to give her time and hope she outgrows it. She has thrush she cannot get rid of b/c she is on an antibiotic to help her pass her food through her system more easily. The good news is - she is eating much better since the surgery. We took her off of all formulas (even the Alimentum for soy/milk allergy) and put her on plain old mama milk and she can't get enough - she's gaining like a champ. Sometimes you have to be your own doctor. Emily started smiling this weekend as well but needs a little more time to make it legitimate.
Overall, all is well in the nyen twins household. We have our wonderful Christina (Newborn Specialist) who has saved our sanity by helping us get through some of the nights. The nights she is not here are rough, not going to lie. Bob and I have resorted to making pallets on the floor in front of their cribs. They are still on Apnea monitors, which is a love/hate relationship. Their events have MUCH IMPROVED I am happy to say.
Avery slept through the night Monday night (besides a diaper change at 2:30am - thanks mom)!!!!! And Miss Emily Lane is a close second with only a 2:00am feed then went right back to sleep...yeah! I think we are getting the hang of things - or as my friend said, "You just get used to it". The key seems to be to surrender control, understand that your life will be utterly consumed by them for the first little while. From what I understand it "gets easier". It is getting rather fun to see them growing and developing on a daily basis. The part right now that's hard is what we call (borrowed from a friend with twin girls) is "code red". This is when both of them wake up and go crazy to eat at the same time. WOW, this will stress anyone out....but, we are coming up with ways to handle the code red - like swings (Graco Sweetpeace is pretty cool).
I am making a list of all the products that I have found useful to new families (since we know so many people either pregnant or have newborns). There's a lot out there and it can get super expensive. However, there are some items worth their weight in gold. Hopefully I will post those in the next few days. ALSO, we are working on getting annoucements together (which also contain special thank you notes). Please accept our apology for the totally and completely delinquent thank you notes!!!! They are coming, I promise!!!!
Love to all,
Heather
We apologize for taking so long to update. Needless to say we have our hands full. Basically, as soon as both girls got home from the hospital we had to plan for Emily's bilateral hernia surgery. She had it two weeks ago and is healing, seemingly with little pain left. Also, Bob's mom came into town to lend a hand -- we cannot thank her enough for her "baby whisperer" insight. THANK YOU!!! Another thank you to my fam as well - we literallly couldn't do it without you. So, here are the updates:
Avery - MUST weigh 11-12 lbs, 21 inches long. She is a monster and gaining by the second. I think she could knock someone out with her cheeks! Developmentally doing really well, she is doing great with eye contact/following things and started smiling this weekend. Miss Avery Claire is very curious about the world with her big blue eyes taking it all in like a sponge.
Emily - Weighs a whopping 7 1/2 lbs., 20 inches long. Emily is our lean, mean grunting machine. We hoped the surgery would solve all of her grunting, but it hasn't. The Pediatric Gastroenterologist thinks she might have a milk/soy protein intolerance. So, I have cut out anything with these ingredients...which is a lot of products! We have basically gone completely organic - probably not a bad thing. This may have helped slightly, but we are just going to give her time and hope she outgrows it. She has thrush she cannot get rid of b/c she is on an antibiotic to help her pass her food through her system more easily. The good news is - she is eating much better since the surgery. We took her off of all formulas (even the Alimentum for soy/milk allergy) and put her on plain old mama milk and she can't get enough - she's gaining like a champ. Sometimes you have to be your own doctor. Emily started smiling this weekend as well but needs a little more time to make it legitimate.
Overall, all is well in the nyen twins household. We have our wonderful Christina (Newborn Specialist) who has saved our sanity by helping us get through some of the nights. The nights she is not here are rough, not going to lie. Bob and I have resorted to making pallets on the floor in front of their cribs. They are still on Apnea monitors, which is a love/hate relationship. Their events have MUCH IMPROVED I am happy to say.
Avery slept through the night Monday night (besides a diaper change at 2:30am - thanks mom)!!!!! And Miss Emily Lane is a close second with only a 2:00am feed then went right back to sleep...yeah! I think we are getting the hang of things - or as my friend said, "You just get used to it". The key seems to be to surrender control, understand that your life will be utterly consumed by them for the first little while. From what I understand it "gets easier". It is getting rather fun to see them growing and developing on a daily basis. The part right now that's hard is what we call (borrowed from a friend with twin girls) is "code red". This is when both of them wake up and go crazy to eat at the same time. WOW, this will stress anyone out....but, we are coming up with ways to handle the code red - like swings (Graco Sweetpeace is pretty cool).
I am making a list of all the products that I have found useful to new families (since we know so many people either pregnant or have newborns). There's a lot out there and it can get super expensive. However, there are some items worth their weight in gold. Hopefully I will post those in the next few days. ALSO, we are working on getting annoucements together (which also contain special thank you notes). Please accept our apology for the totally and completely delinquent thank you notes!!!! They are coming, I promise!!!!
Love to all,
Heather
Sunday, June 15, 2008
My two cents then let's move on
Hello,
Bob just spoke about the request to remove/censor pics with nurses in them. Now that we know that hospital staff is digging into our site (including pictures from 10 weeks ago) I would like to take the opportunity to say something. As Bob mentioned, there were several nurses in the NICU that absolutely did a wonderful job and we formed outstanding relationships with them. To these individuals we are eternally grateful for your help and dedication in watching our girls (and coaching us) when we could not.
For this, your humor, caring attitudes, and attention to them ------ we thank you and will never forget you. In fact, we wish all the time we could bring the girls up for you to see....they are so big (Emily just hit 6 lbs!!!!!). We envisioned coming up to visit through the years. When the girls were first born I told everyone I knew that the staff in NICUs have a special place in heaven. It's not easy. This is why we feel that the good being done there deserves recognition, but unfortunately the bad aspects are overwhelming the good.
Our disappointments are not with 'you' at all.....it's the rules that the NICU has in place as standard procedure, such as only checking on babies every three hours. There is a drastic difference in the care received between nurses. Inconsistency was one of the problems and we understand is ongoing and challenging problem to remedy. However, there are a few simple things that can be done:
Rule #1 - Take turns making milk or taking breaks so that there is always someone in the room with babies.
Rule #2 - Decide on consistent terms for cares, not so much subjectivity.
Rule #3 - Realize that you are in an ICU, an INTENSIVE CARE UNIT, this is a BIG DEAL and very traumatic. Parents have been to heck and back trying to get these babies into the world and the only person we CAN trust is you to care for them as we would. Be sensitive to that. I beg you not to treat your job as any other office job out there. It's not....what you do is important and critical and we as vulnerable new parents depend on you.
Rule #4 - QUIT THE CHIT CHAT!!!!!!!!!!!!!!!!!!!!!!!! I have never, ever shot the bull at work as much as some of the ladies do (and everyone knows I am a talker!! :)). I would have been fired --- heck, I would feel guilty taking a paycheck if I acted like that. The bottom line with this rule goes back to Rule #3, these may not be YOUR babies but you MUST act like it - it's insulting and hurtful to act otherwise. And for the $5oo,000 bill (to our insurance) just for the NICU piece of the pregnancy and delivery, you should! (Keep in mind this does not include the extra $100,000 for the subsequent stay in pediatrics b/c they went home too soon.) If you do not have compassion and understanding for the delicate situation of the NICU....get a different job.
Rule #5 - Do not become immune to the severity of the situation, as it may have consequences. When the babies have A's and B's right in front of us and no one is around to document, it appears as if they are getting healthier than they really are. The Dr's depend on this information to determine release and medication adjustments. This affects the livelihood of the babies. They were released TOO SOON. What if Emily had died before I could get her help? What if we were not as vigilant (or festidious, as one specialist called me) as we are in managing their care? This leads me to rule #6.
Rule #6 - Dr's.......PLEASE make sure these babies are ready to go home. Do not answer only to the insurance companies. We went through absolute hell the days they were at home (particularly Emily) and begged for your help at all hours of the day and night to no avail. MANY people's lives are affected by this error. Not only the obvious error of damage or fatality to the children, but also consider the coordination it takes to manage these tiny, sick babies. We have had to depend on people to no end. As I sit here Emily is have been solidly grunting for two hours and weazing in and out. She is still sick. We don't know what to do, it's heartbreaking when you are with them 24/7. Everyone who has been around her notices there is still a problem.
We completely understand and agree that the babies should not be disturbed/stimulated between cares for developmental reasons, but they should absolutely have someone peeking under the cover to make sure all is ok more often than that -- especially when they have A's and B's. In fact, we have had so many people who either work in NICUs across the country or have friends in the medical industry who are mortified at the negligence. We do understand that each hosptial with a NICU have various ways of operating, but know this.............you have a choice which one you entrust your babies.
Well, it's up to us to advocate for them and care for them the best we can. They go the pediatrician tomorrow so I will let everyone know how it goes.
Heather
Bob just spoke about the request to remove/censor pics with nurses in them. Now that we know that hospital staff is digging into our site (including pictures from 10 weeks ago) I would like to take the opportunity to say something. As Bob mentioned, there were several nurses in the NICU that absolutely did a wonderful job and we formed outstanding relationships with them. To these individuals we are eternally grateful for your help and dedication in watching our girls (and coaching us) when we could not.
For this, your humor, caring attitudes, and attention to them ------ we thank you and will never forget you. In fact, we wish all the time we could bring the girls up for you to see....they are so big (Emily just hit 6 lbs!!!!!). We envisioned coming up to visit through the years. When the girls were first born I told everyone I knew that the staff in NICUs have a special place in heaven. It's not easy. This is why we feel that the good being done there deserves recognition, but unfortunately the bad aspects are overwhelming the good.
Our disappointments are not with 'you' at all.....it's the rules that the NICU has in place as standard procedure, such as only checking on babies every three hours. There is a drastic difference in the care received between nurses. Inconsistency was one of the problems and we understand is ongoing and challenging problem to remedy. However, there are a few simple things that can be done:
Rule #1 - Take turns making milk or taking breaks so that there is always someone in the room with babies.
Rule #2 - Decide on consistent terms for cares, not so much subjectivity.
Rule #3 - Realize that you are in an ICU, an INTENSIVE CARE UNIT, this is a BIG DEAL and very traumatic. Parents have been to heck and back trying to get these babies into the world and the only person we CAN trust is you to care for them as we would. Be sensitive to that. I beg you not to treat your job as any other office job out there. It's not....what you do is important and critical and we as vulnerable new parents depend on you.
Rule #4 - QUIT THE CHIT CHAT!!!!!!!!!!!!!!!!!!!!!!!! I have never, ever shot the bull at work as much as some of the ladies do (and everyone knows I am a talker!! :)). I would have been fired --- heck, I would feel guilty taking a paycheck if I acted like that. The bottom line with this rule goes back to Rule #3, these may not be YOUR babies but you MUST act like it - it's insulting and hurtful to act otherwise. And for the $5oo,000 bill (to our insurance) just for the NICU piece of the pregnancy and delivery, you should! (Keep in mind this does not include the extra $100,000 for the subsequent stay in pediatrics b/c they went home too soon.) If you do not have compassion and understanding for the delicate situation of the NICU....get a different job.
Rule #5 - Do not become immune to the severity of the situation, as it may have consequences. When the babies have A's and B's right in front of us and no one is around to document, it appears as if they are getting healthier than they really are. The Dr's depend on this information to determine release and medication adjustments. This affects the livelihood of the babies. They were released TOO SOON. What if Emily had died before I could get her help? What if we were not as vigilant (or festidious, as one specialist called me) as we are in managing their care? This leads me to rule #6.
Rule #6 - Dr's.......PLEASE make sure these babies are ready to go home. Do not answer only to the insurance companies. We went through absolute hell the days they were at home (particularly Emily) and begged for your help at all hours of the day and night to no avail. MANY people's lives are affected by this error. Not only the obvious error of damage or fatality to the children, but also consider the coordination it takes to manage these tiny, sick babies. We have had to depend on people to no end. As I sit here Emily is have been solidly grunting for two hours and weazing in and out. She is still sick. We don't know what to do, it's heartbreaking when you are with them 24/7. Everyone who has been around her notices there is still a problem.
We completely understand and agree that the babies should not be disturbed/stimulated between cares for developmental reasons, but they should absolutely have someone peeking under the cover to make sure all is ok more often than that -- especially when they have A's and B's. In fact, we have had so many people who either work in NICUs across the country or have friends in the medical industry who are mortified at the negligence. We do understand that each hosptial with a NICU have various ways of operating, but know this.............you have a choice which one you entrust your babies.
Well, it's up to us to advocate for them and care for them the best we can. They go the pediatrician tomorrow so I will let everyone know how it goes.
Heather
Saturday, June 14, 2008
Vaccine
Here is a link to a good article that addresses our concerns about two things relating to vaccines:
1. Too much, too soon
2. Preservatives and other things in the vaccines
http://chanceforchange.wordpress.com/2008/06/08/a-user-friendly-vaccine-schedule/
1. Too much, too soon
2. Preservatives and other things in the vaccines
http://chanceforchange.wordpress.com/2008/06/08/a-user-friendly-vaccine-schedule/
When did a hospital become our webmaster?
Our intent with our website is to allow friends and family around the country to keep in touch with us and follow the progress of our new babies. It seems that more than "friends and family" are tapping into our site and we are now having to make certain changes because of this. Earlier this week we received the following email:
photos
From: [name deleted so nobady will get a burr under their saddle (which would happen with "that place")]
Sent: Wed 6/11/08 11:02 AM
To: bnyen@hotmail.com
As per our conversation, several of the NICU nurses have requested their photographs be removed from the blog. I do appreciate your agreement to remove them. I have listed the images and information:
Emily weeks 5-6 img 04272008 E02 and img 04272008 E03
Avery 2-4 weeks img 04223008 A11
Emily at 1 week img 3479
Avery 2-4 weeks img 04162008 A21
Thanks so much and am glad everything is going so well at home!
[name deleted]
AVP, Patient Care Services
email: [deleted]
office phone: 610-954-xxxx
pager: 610-508-xxxx
This email followed a telephone call from the same Vice President. She called Heather directly and "requested" the changes to our website. I believe that our site is for our personal use. We have no advertisers on our site and do not promote it using any of the various methods to promote a web presence. When we took our pictures in the NICU we NEVER were asked to not include personnel. There are no postings anywhere that even suggest "NO PHOTOS ALLOWED". We always had our camera out and were using it without any interference from anyone on the staff. We even told people that we were building a site for our friends and family around the country. In addition, if we felt comfortable enough in that place to take pictures we were usually with staff we liked, trusted and actually did their job. We never took pictures of the nurses that had a bad attitude or didn't care enough to pay attention to the babies in the NICU.........
All that aside, I've decided to kowtow to "that place" and edit the pictures so nobody up there has their feelings hurt.
Question: when did getting feelings hurt become cause enough for a large institution to waste their time and force changes on a private website?
Bob
photos
From: [name deleted so nobady will get a burr under their saddle (which would happen with "that place")]
Sent: Wed 6/11/08 11:02 AM
To: bnyen@hotmail.com
As per our conversation, several of the NICU nurses have requested their photographs be removed from the blog. I do appreciate your agreement to remove them. I have listed the images and information:
Emily weeks 5-6 img 04272008 E02 and img 04272008 E03
Avery 2-4 weeks img 04223008 A11
Emily at 1 week img 3479
Avery 2-4 weeks img 04162008 A21
Thanks so much and am glad everything is going so well at home!
[name deleted]
AVP, Patient Care Services
email: [deleted]
office phone: 610-954-xxxx
pager: 610-508-xxxx
This email followed a telephone call from the same Vice President. She called Heather directly and "requested" the changes to our website. I believe that our site is for our personal use. We have no advertisers on our site and do not promote it using any of the various methods to promote a web presence. When we took our pictures in the NICU we NEVER were asked to not include personnel. There are no postings anywhere that even suggest "NO PHOTOS ALLOWED". We always had our camera out and were using it without any interference from anyone on the staff. We even told people that we were building a site for our friends and family around the country. In addition, if we felt comfortable enough in that place to take pictures we were usually with staff we liked, trusted and actually did their job. We never took pictures of the nurses that had a bad attitude or didn't care enough to pay attention to the babies in the NICU.........
All that aside, I've decided to kowtow to "that place" and edit the pictures so nobody up there has their feelings hurt.
Question: when did getting feelings hurt become cause enough for a large institution to waste their time and force changes on a private website?
Bob
Tuesday, June 10, 2008
Home at last
Hi All - We are all back at home after spending the weekend at my parents. The girls are doing much better than in the past. They still have their breathing/heart rate problems but we are learning ways to handle and even sometimes prevent them. Emily is doing ok, she still grunts a lot and has thrush again.
Ok, so to the real bottom line.......this infant thing is HARD!!!!!!!!!!!!!!!!!!!!!!!!!! Holy cow, is this really how it's supposed to be? NO sleep ever? Then, when you are awake it's complete chaos? You know that really hard/transitional time when you come home from the hospital? This is our fourth time (Avery home, then Emily home, Avery home again, Emily home again). I feel like we will never get past the "beginning stage" and they are 10 weeks old. Bob and I are used to taking on challenges head on so we thought we could definitely handle it, but this is the hardest thing we have faced (besides the pregnancy). One baby would be hard enough but two is a constant juggling act. I have come to the conclusion that one is going to have to fuss at any given time while I am doing stuff with the other one. Once they are bigger and can hold their own bottle it will free me up to watch them both eat, but for now the feedings are so labor intensive and they each need full attention. Everyone talks about the joy of parenthood, the good are obvious....it's the other stuff that gets covered up. It's definitely revealed now....it's just plain hard and so dramatically changes your life. I thought they would just enhance our life not completely take over. So, kudos to all parents out there.
I promise we will get pictures up, they have changed so much since the last ones online. Thanks to everyone for all the gifts, I promise we are working on the thank you notes.....they are coming! :)
Heather
Ok, so to the real bottom line.......this infant thing is HARD!!!!!!!!!!!!!!!!!!!!!!!!!! Holy cow, is this really how it's supposed to be? NO sleep ever? Then, when you are awake it's complete chaos? You know that really hard/transitional time when you come home from the hospital? This is our fourth time (Avery home, then Emily home, Avery home again, Emily home again). I feel like we will never get past the "beginning stage" and they are 10 weeks old. Bob and I are used to taking on challenges head on so we thought we could definitely handle it, but this is the hardest thing we have faced (besides the pregnancy). One baby would be hard enough but two is a constant juggling act. I have come to the conclusion that one is going to have to fuss at any given time while I am doing stuff with the other one. Once they are bigger and can hold their own bottle it will free me up to watch them both eat, but for now the feedings are so labor intensive and they each need full attention. Everyone talks about the joy of parenthood, the good are obvious....it's the other stuff that gets covered up. It's definitely revealed now....it's just plain hard and so dramatically changes your life. I thought they would just enhance our life not completely take over. So, kudos to all parents out there.
I promise we will get pictures up, they have changed so much since the last ones online. Thanks to everyone for all the gifts, I promise we are working on the thank you notes.....they are coming! :)
Heather
Saturday, June 7, 2008
Emily home last night, interviewing nannys!
More later.....but, we brought Emily home last night. She is doing much better. Also, we have fully admitted we cannot do it without help. So, interviewing today for our immediate need.
Heather
Heather
Sunday, June 1, 2008
Some results...finally
Hello All,
It's Sunday and we are still splitting our time between the hospital with Emily and my parents' house with Avery -- one of us in each location. Avery is doing ok at home, still having A's and B's but mostly with feeds now. Emily had thrush starting Saturday and it's mostly gone by now with meds. One of the reasons she is in the hospital is b/c she is grunting CONSTANTLY.
We have insisted that they explore this and sure enough they found "delayed emptying of the stomach". After 90 minutes she had only digested 38% of her milk (normal is 100%). Keep in mind they eat every 2.5-3 hours. So, she has old milk in her tummy when she is hungry to eat again. It's torture to listen to her all day and all night. Does anyone have any advice? They are giving her erythramicin to help move her bowels along. If this doesn't work we are going to try an easily broken down formula to see if she is lactose intolerant. I have also cut out all dairy from my diet to see if that helps with the amount of lactose in the milk. Poor Em....
Meanwhile, we are all burning the candle at both ends. One baby is hard enough, but having one in the hospital and one at home is tough. My mom and sister to the rescue again!!!! Hopefully we are on the home stretch. We will bring her home this week and see how it goes.
So.......this whole infant thing is for the birds. By the time the baby is changed, fed, burped and consoled to sleep - it's time to change them again. It's a nonstop cycle that will hopefully only last a couple of months. Please share with us your advice in this area too - just hit "Comment" under the post. With twins we have them on the same schedule to get more sleep.
Hope all is well with you all. Please excuse our lack of communication while we get over this (hopefully) last hump and find help at home. We are trying to get a nursing student (thanks for the idea Raquel!) so they are familiar with medical care for the girls. If anyone has any contacts please let us know.
Heather
It's Sunday and we are still splitting our time between the hospital with Emily and my parents' house with Avery -- one of us in each location. Avery is doing ok at home, still having A's and B's but mostly with feeds now. Emily had thrush starting Saturday and it's mostly gone by now with meds. One of the reasons she is in the hospital is b/c she is grunting CONSTANTLY.
We have insisted that they explore this and sure enough they found "delayed emptying of the stomach". After 90 minutes she had only digested 38% of her milk (normal is 100%). Keep in mind they eat every 2.5-3 hours. So, she has old milk in her tummy when she is hungry to eat again. It's torture to listen to her all day and all night. Does anyone have any advice? They are giving her erythramicin to help move her bowels along. If this doesn't work we are going to try an easily broken down formula to see if she is lactose intolerant. I have also cut out all dairy from my diet to see if that helps with the amount of lactose in the milk. Poor Em....
Meanwhile, we are all burning the candle at both ends. One baby is hard enough, but having one in the hospital and one at home is tough. My mom and sister to the rescue again!!!! Hopefully we are on the home stretch. We will bring her home this week and see how it goes.
So.......this whole infant thing is for the birds. By the time the baby is changed, fed, burped and consoled to sleep - it's time to change them again. It's a nonstop cycle that will hopefully only last a couple of months. Please share with us your advice in this area too - just hit "Comment" under the post. With twins we have them on the same schedule to get more sleep.
Hope all is well with you all. Please excuse our lack of communication while we get over this (hopefully) last hump and find help at home. We are trying to get a nursing student (thanks for the idea Raquel!) so they are familiar with medical care for the girls. If anyone has any contacts please let us know.
Heather
Tuesday, May 27, 2008
updates
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
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
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
Tuesday, April 29, 2008
We've been busy......
Hi All! We apologize for taking so long to post anything new. The NICU has kept us very busy since the 20th. The girls moved to the "growers and feeders" side and it has been a whirlwind. They are on the fast track to coming home, but it takes a lot of work for them, us and the nurses. There are three basic skills that preemies have to obtain: Regulate their own body temperature (get to wear clothes and sleep in a crib not an incubator); Eat from a bottle (perfect the suck, swallow, breathe reflexes); and the final and often last one is to remember to breathe without apnea episodes (a's and b's). So, here's what we have been up to.....
Avery - Regulates her own temp and is now sleeping in a regular crib with clothes on. She has been taking her food through a bottle and even did well with breastfeeding. She remembers to breathe most of the time, but still has the occasional episode. We were told that she could be home in as soon as a week if she progresses as she has been!!!!!!!
Emily - Still working on regulating her own temp, but she is ALMOST there. She has been taking her food through a bottle as well and is doing very well with it. She is getting better with breathing, less episodes, but she is still working hard in this area. Nevertheless, she is just right behind her sister!!!!!!!
They are both growing and changing SOOOO much. Avery weighs 4 lbs 9 oz and Emily weighs 3 lbs 7 oz, up from birthweights of 3 lbs 5 oz and 2 lbs 5 oz respectively. Miss Avery has hit a growth spurt, wait until you see her cheeks, OMG! I noticed yesterday that Emily is just starting into a growth spurt right now also. They definitely have their own personalities already. Avery is slightly dramatic since she is out of her crib, putting her hands over her face and ears to block out noise and light. Emily is the sportier and more coordinated of the two...she is all over the isolette, kicking and moving. She already knows how to hold her pacifier in her mouth as well as take it out and put it back in!!!!!!! Are you kidding, she's 3 lbs!
The nurses have wanted our involvement so much recently. It's been very important for us to spend as much time as possible with them, as this seems to speed their development. So, we have been learning how to feed and burp them, bathe them, handle them, etc. Also, since there is a chance they might come home on apnea monitors we have wanted to educate ourselves as much as possible in this area, as well as CPR. We have had to move interviewing pediatricians to the top of our list. We are very confused about vaccinations. There is a lot of research for and against. If anyone has any good info on this subject please email us.
We did have quite a trying week with little Emily. A few times we walked into the NICU and she was in less than a desirable state. One time her arm was down in a crack of the bed about an inch wide. Another time she was struggling so hard to breathe that I started bawling and immediately got the Dr. involved. He suctioned her nose out and said she was bleeding quite a bit in there b/c the nasal cannula (oxygen) dried her out. Then she had an apnea episode and there were no nurses in sight despite her alarm dinging. This was very scary. In fact, it prompted us to pop up to the hospital in the middle of the night (when we had just left a few hours before) to keep the nurses on their toes. We ended up staying until 4 am asking many detailed questions about the breathing and monitors. We have decided to take a more vocal approach with the nurses, otherwise they will just go about their job and maybe not take such a proactive approach with checking on them.
More to come, but just wanted to give everyone a quick update! Thank you so much for your wonderful support and keep praying, we are not quite out of the woods yet.
Heather
Avery - Regulates her own temp and is now sleeping in a regular crib with clothes on. She has been taking her food through a bottle and even did well with breastfeeding. She remembers to breathe most of the time, but still has the occasional episode. We were told that she could be home in as soon as a week if she progresses as she has been!!!!!!!
Emily - Still working on regulating her own temp, but she is ALMOST there. She has been taking her food through a bottle as well and is doing very well with it. She is getting better with breathing, less episodes, but she is still working hard in this area. Nevertheless, she is just right behind her sister!!!!!!!
They are both growing and changing SOOOO much. Avery weighs 4 lbs 9 oz and Emily weighs 3 lbs 7 oz, up from birthweights of 3 lbs 5 oz and 2 lbs 5 oz respectively. Miss Avery has hit a growth spurt, wait until you see her cheeks, OMG! I noticed yesterday that Emily is just starting into a growth spurt right now also. They definitely have their own personalities already. Avery is slightly dramatic since she is out of her crib, putting her hands over her face and ears to block out noise and light. Emily is the sportier and more coordinated of the two...she is all over the isolette, kicking and moving. She already knows how to hold her pacifier in her mouth as well as take it out and put it back in!!!!!!! Are you kidding, she's 3 lbs!
The nurses have wanted our involvement so much recently. It's been very important for us to spend as much time as possible with them, as this seems to speed their development. So, we have been learning how to feed and burp them, bathe them, handle them, etc. Also, since there is a chance they might come home on apnea monitors we have wanted to educate ourselves as much as possible in this area, as well as CPR. We have had to move interviewing pediatricians to the top of our list. We are very confused about vaccinations. There is a lot of research for and against. If anyone has any good info on this subject please email us.
We did have quite a trying week with little Emily. A few times we walked into the NICU and she was in less than a desirable state. One time her arm was down in a crack of the bed about an inch wide. Another time she was struggling so hard to breathe that I started bawling and immediately got the Dr. involved. He suctioned her nose out and said she was bleeding quite a bit in there b/c the nasal cannula (oxygen) dried her out. Then she had an apnea episode and there were no nurses in sight despite her alarm dinging. This was very scary. In fact, it prompted us to pop up to the hospital in the middle of the night (when we had just left a few hours before) to keep the nurses on their toes. We ended up staying until 4 am asking many detailed questions about the breathing and monitors. We have decided to take a more vocal approach with the nurses, otherwise they will just go about their job and maybe not take such a proactive approach with checking on them.
More to come, but just wanted to give everyone a quick update! Thank you so much for your wonderful support and keep praying, we are not quite out of the woods yet.
Heather
Friday, April 18, 2008
We've graduated!
When I say "we" I mean the girls. The NICU here at St. Lukes has two separate areas. The one where the girls have been since they showed up is the critical care side. The nurses and docs there spend a lot of time just trying to stabilize their guests. The doc said the other day that our girls were in the best shape of all the babies on that side so they were going to "graduate" to the step-down side. They say that side is for the "growers and feeders"!
So both girls now are off IV, off CPAP, and off the heater in the isolette. Both still have a nasal cannula supplying air, temperature monitors, feeding tubes, heart rate monitors and pulse oximeters. The docs are actually talking about moving Avery to a regular crib soon! Emily is still having some A's and B's so they are kind of watching her closely. She actually had one while I typed that last sentence. dang it. STOP THAT, PEANUT!
Heather is kangarooing Avery while I'm typing and the nurses are trying to see why Emily keeps having bradys.
ok... so we aren't totally out of the woods yet. It still is a time where things happen that are scary. Even three weeks into this the rollecoaster continues. So please keep them in your thoughts and prayers.
bob
So both girls now are off IV, off CPAP, and off the heater in the isolette. Both still have a nasal cannula supplying air, temperature monitors, feeding tubes, heart rate monitors and pulse oximeters. The docs are actually talking about moving Avery to a regular crib soon! Emily is still having some A's and B's so they are kind of watching her closely. She actually had one while I typed that last sentence. dang it. STOP THAT, PEANUT!
Heather is kangarooing Avery while I'm typing and the nurses are trying to see why Emily keeps having bradys.
ok... so we aren't totally out of the woods yet. It still is a time where things happen that are scary. Even three weeks into this the rollecoaster continues. So please keep them in your thoughts and prayers.
bob
Wednesday, April 16, 2008
"What is Kangarooing?" you've asked.
from babylinq.com
The Benefits of Kangaroo Care
Kangarooing Care BenefitsBy Krisanne Collard
Kangaroo Care has been studied in depth since 1983 when neonatologists Edgar Rey and Hector Martinez first implemented it in Bogota, Columbia. Kangaroo Care consists of placing a diaper clad premature baby in an upright position on a parent's bare chest - tummy to tummy, in between the breasts. The baby's head is turned so that the ear is above the parent's heart. Due to lack of power and reliable equipment, Kangaroo Care was found to be an inexpensive and very beneficial experience to babies in Bogota. The mortality rate fell from 70 % to 30 %.
Most studies have proven that Kangaroo Care has a major, positive impact on babies and their parents; some studies have proven there is no change; but no study has proven that Kangaroo Care has hurt either parent or baby. In this article, my goal is to inform parents, nurses, and doctors on the benefits of Kangaroo Care. I have selected one study or article in each group that best sums up all the studies done to date. If anyone wants a complete copy of all Kangaroo Care research, please feel free to E-mail me at roopage@yahoo.com.
Most studies have proven that Kangaroo Care has a major, positive impact on babies and their parents; some studies have proven there is no change; but no study has proven that Kangaroo Care has hurt either parent or baby. In this article, my goal is to inform parents, nurses, and doctors on the benefits of Kangaroo Care. I have selected one study or article in each group that best sums up all the studies done to date. If anyone wants a complete copy of all Kangaroo Care research, please feel free to E-mail me at roopage@yahoo.com.
Sleep Time/Colic
Researchers have come a long way in determining the major cause of colic. The common conclusion in 1999 is that colic is caused by a baby's (whether premature or full term) inability to transition from one sleep state to another - like from an alert state into a sleep state and back again. The gas associated from colic is caused by the excess of crying during these transitions. Kangaroo Care performed in a quiet, low light environment with ANY baby has been proven to reduce crying and help the baby learn to transition from one sleep state to another. A study done by Patricia Messmer, et al (Pediatric Nursing,23 (4): 408-414) in 1997 found a significant increase in sleep time for the neonates during Kangaroo Care. I want to impress upon all that Kangaroo Care works just as well with full term infants as it does with premature infants.
Apnea, Brady, O2 Saturation, Respiration and Heart Rate
The newest studies that are being done in Sweden and other countries concentrate on full term babies in respiratory distress. They take these babies, who would normally be put on respirators, and place them on the mom's chest immediately after birth in the Kangaroo Care position. Babies stayed on mom until the respiratory distress was gone - within 48 hours for most babies. Oxygen hoods and canulas were used if needed. In preterm babies, the effects of Kangaroo Care on these functions is just as dramatic. In 1998, Susan Ludington (Acta Paediatrica,87 (6): 711-713 ) found a four-fold decrease in apnea during Kangaroo Care and mechanically ventilated babies were able to tolerate transfer and position changes without increased oxygen requirements. In 1997, GM Cleary, et al (J. American Osteopathic Assoc., 97 (8): 457-460) concluded there was no increase in bradycardia episodes during Kangaroo Care. In 1998, Gay Gale and Kathleen Vandenburg (Neonatal Network, 17 (5): 1-3) concluded that the heart rate was more regular for Kangarooed infants. All-in-all, the baby fared much better when placed in Kangaroo Care. With my own ventilated preemie (1 pound 12 ounces at birth) I noticed a 50% reduction in oxygen requirements, no apneas or bradys, more stable heart rate, and more spontaneous respiration when I held her skin-to-skin.
Apnea, Brady, O2 Saturation, Respiration and Heart Rate
The newest studies that are being done in Sweden and other countries concentrate on full term babies in respiratory distress. They take these babies, who would normally be put on respirators, and place them on the mom's chest immediately after birth in the Kangaroo Care position. Babies stayed on mom until the respiratory distress was gone - within 48 hours for most babies. Oxygen hoods and canulas were used if needed. In preterm babies, the effects of Kangaroo Care on these functions is just as dramatic. In 1998, Susan Ludington (Acta Paediatrica,87 (6): 711-713 ) found a four-fold decrease in apnea during Kangaroo Care and mechanically ventilated babies were able to tolerate transfer and position changes without increased oxygen requirements. In 1997, GM Cleary, et al (J. American Osteopathic Assoc., 97 (8): 457-460) concluded there was no increase in bradycardia episodes during Kangaroo Care. In 1998, Gay Gale and Kathleen Vandenburg (Neonatal Network, 17 (5): 1-3) concluded that the heart rate was more regular for Kangarooed infants. All-in-all, the baby fared much better when placed in Kangaroo Care. With my own ventilated preemie (1 pound 12 ounces at birth) I noticed a 50% reduction in oxygen requirements, no apneas or bradys, more stable heart rate, and more spontaneous respiration when I held her skin-to-skin.
Body Tempature and Lactation
I believe this is truly the most amazing benefit of Kangaroo Care. In 1990, Susan Ludington (Heart and Lung, 19 (5): 445-451) concluded that mothers showed thermal synchrony with their babies. A recent study placed babies in Kangaroo Care position on the mother's chest and temperatures were taken periodically of both the mother's chest and the baby. The study concluded that when the baby got cold, the mother's body temperature would increase to 'warm' the baby up. The reverse was also true. Given a suggestion of "Your baby looks warm to me" by a nurse, the mother's chest temperature would decrease within minutes to compensate. Extra blankets and monitoring of baby's temperature might be needed when Dad or others practice Kangaroo Care, but in 1997, Karl Bauer, et al (Journal of Pediatrics, 130 (2): 240-244) concluded that one hour of skin-to-skin contact (Kangaroo Care) was no cold stress to preterm infants.
In 1998, Papi A Gomez, et al (An Esp Pediatr 1998 Jun;48 (6): 631-633 - Spanish) found infants in Kangaroo Care for > 50 minutes were 8 times more likely to breast feed spontaneously. Kangaroo Care allows for easy access to the breast, and the skin-to-skin contact increases milk let-down. A receiving blanket, strategically placed to catch extra milk is extremely helpful - especially if the baby is unable to breast feed.
In 1998, Papi A Gomez, et al (An Esp Pediatr 1998 Jun;48 (6): 631-633 - Spanish) found infants in Kangaroo Care for > 50 minutes were 8 times more likely to breast feed spontaneously. Kangaroo Care allows for easy access to the breast, and the skin-to-skin contact increases milk let-down. A receiving blanket, strategically placed to catch extra milk is extremely helpful - especially if the baby is unable to breast feed.
Weight Gain/ Shorter Hospital Stay
Holly Richardson (Why Does it Work? International Midwife Winter. 1997.) concluded that more rapid weight gain was observed in Kangarooed infants. The NICU is a busy, noisy place. Kangaroo Care allows the baby to fall into a deep sleep, there by conserving their energy for far more important things. Left alone on a warming table, a baby cries more and sleeps less.
This increased weight gain also leads to shorter hospital stays. N Charpak, et al (Pediatrics, vol. 100 #4: Oct 1997, pg 682-689) showed a shorter hospital stay in the Kangaroo Care group; primarily in infants -/<1800> grams. Kangarooed infants can have as much as a 50% shorter hospital stay than babies who aren't Kangarooed. This in turn means less expense for the hospitals and/or parents.
This increased weight gain also leads to shorter hospital stays. N Charpak, et al (Pediatrics, vol. 100 #4: Oct 1997, pg 682-689) showed a shorter hospital stay in the Kangaroo Care group; primarily in infants -/<1800> grams. Kangarooed infants can have as much as a 50% shorter hospital stay than babies who aren't Kangarooed. This in turn means less expense for the hospitals and/or parents.
Conclusion
In 1998, Gay Gale and Kathleen Vandenburg (Neonatal Network, 12 (6): 49-57) found an increased intimacy and attachment between baby and parent. Kangaroo Care was found to help a parent feel connected. Eye contact led to an experience of "knowing" infant.
I wish that every doctor and nurse in this country could experience Kangaroo Care themselves. As a Mom who was able to Kangaroo her little 1 1/2 pound miracle for two hours every day, I have few words to describe my experience so that others can truly understand. You can liken it to a full term delivery where the baby is immediately placed on mom's chest, kicking and screaming, then quieting to look into mom and dad's face with wonder. Holding that tiny body next to mine, feeling her little hand clutch my collar bone, feeling her drift off to sleep in my arms.... truly the most amazing experience of my life. I hope that soon, VERY soon, all parents of premature infants will be able to experience the same.
I wish that every doctor and nurse in this country could experience Kangaroo Care themselves. As a Mom who was able to Kangaroo her little 1 1/2 pound miracle for two hours every day, I have few words to describe my experience so that others can truly understand. You can liken it to a full term delivery where the baby is immediately placed on mom's chest, kicking and screaming, then quieting to look into mom and dad's face with wonder. Holding that tiny body next to mine, feeling her little hand clutch my collar bone, feeling her drift off to sleep in my arms.... truly the most amazing experience of my life. I hope that soon, VERY soon, all parents of premature infants will be able to experience the same.
Tuesday, April 15, 2008
It's been a long journey.....
Hi All, it's Heather! Has Bob done an exceptional job with the website or what!?! Well, it's been a VERY, VERY long and trying journey to get these babies into the world. It took every ounce of strength I had to make it through. Having been essentially incapacitated for the last seven months, I thank all of you for your patience, help and understanding.
I would like to take this opportunity to personally thank the literal hundreds of people who have prayed for us over the last several months. We feel so blessed to have such support and love for us and our babies. Thank you to those who have shared our story with your networks of friends and family. Also, I would like to say a special thank you to my wonderful husband and family for their unbelievable daily support every step of the way.
These babies are our own personal miracles. For those of you who may not know the truth of the grim picture most drs. painted for the outcome of this pregnancy, let me put it bluntly.... Emily would not be here today if we had followed their orders instead of trusting God and our gut and moving on until we found drs. who we felt comfortable with. We also did our own research and chose to believe the other miracle stories.
It took seven hospitals for us to find St. Lukes in Bethlehem, PA. Dr. Sarno and team are brilliant, positive, timely and professional. I would NOT recommend anyone go to Robert Wood Johnson, Somerset or St. Peters Hospitals for OB (although they are supposed to be "the best").
Some drs. have said I experienced "pretty much everything pregnancy has to offer." If you know anyone experiencing troubles in pregnancy please contact me, I would be happy to help. Also, you MUST take control of your health care. Even after my C-section I had to keep the nurses on track with my medicine after they forgot to give me any pain medication in recovery. Needless to say, I felt everything they had just done to me. Not fun...please make sure and stay on top of your pain meds in this situation. Also, request a belly band (thanks Jami)...this was a great help and still helps for support.
OK, back to the girls. We are getting used to the fact that they are just monitoring them and waiting for them to grow, instead of needing constant attention and treatment. At first we felt ignored and annoyed but we now see it as a good thing that they are not really on the drs' radar right now. Avery weighs 3lbs 9oz and Emily is now 2 lbs 12 oz -- yeah!!!! They are really starting to look alike now. Most of the nurses think they will have curly blond hair....how about that!!
To get an idea of how long they will be in NICU, the drs. said to plan on one or both of them coming home around week 36 (if they were still in utero). They are/would be 32 weeks 3 days. There are certain criteria that they must meet in order to come home. The first one is feeding by themselves. Starting on april 21st we will hopefully start feeding and see how that goes.
Thanks again to everyone reading the website and sharing this experience with us.
Heather
I would like to take this opportunity to personally thank the literal hundreds of people who have prayed for us over the last several months. We feel so blessed to have such support and love for us and our babies. Thank you to those who have shared our story with your networks of friends and family. Also, I would like to say a special thank you to my wonderful husband and family for their unbelievable daily support every step of the way.
These babies are our own personal miracles. For those of you who may not know the truth of the grim picture most drs. painted for the outcome of this pregnancy, let me put it bluntly.... Emily would not be here today if we had followed their orders instead of trusting God and our gut and moving on until we found drs. who we felt comfortable with. We also did our own research and chose to believe the other miracle stories.
It took seven hospitals for us to find St. Lukes in Bethlehem, PA. Dr. Sarno and team are brilliant, positive, timely and professional. I would NOT recommend anyone go to Robert Wood Johnson, Somerset or St. Peters Hospitals for OB (although they are supposed to be "the best").
Some drs. have said I experienced "pretty much everything pregnancy has to offer." If you know anyone experiencing troubles in pregnancy please contact me, I would be happy to help. Also, you MUST take control of your health care. Even after my C-section I had to keep the nurses on track with my medicine after they forgot to give me any pain medication in recovery. Needless to say, I felt everything they had just done to me. Not fun...please make sure and stay on top of your pain meds in this situation. Also, request a belly band (thanks Jami)...this was a great help and still helps for support.
OK, back to the girls. We are getting used to the fact that they are just monitoring them and waiting for them to grow, instead of needing constant attention and treatment. At first we felt ignored and annoyed but we now see it as a good thing that they are not really on the drs' radar right now. Avery weighs 3lbs 9oz and Emily is now 2 lbs 12 oz -- yeah!!!! They are really starting to look alike now. Most of the nurses think they will have curly blond hair....how about that!!
To get an idea of how long they will be in NICU, the drs. said to plan on one or both of them coming home around week 36 (if they were still in utero). They are/would be 32 weeks 3 days. There are certain criteria that they must meet in order to come home. The first one is feeding by themselves. Starting on april 21st we will hopefully start feeding and see how that goes.
Thanks again to everyone reading the website and sharing this experience with us.
Heather
Saturday, April 12, 2008
I'm at the NICU
I'm entering this on my cell phone while sitting at the nicu. heather is "kangarooing" Emily right now. Emily gained 2 ounces in the last 24 hrs. She is back to alternating between the CPAP and the nasal cannula. Let's hope she doesn't tire out this time. Avery is just getting over the hiccups and is trying to get to sleep. She is so cute. she also gained 2 ounces today!
All the nurses here believe kangarooing make a huge difference in the development of preemies. they take the baby, in only the diaper, and place her directly on the chest of mom or me then wrap us both up to keep us warm. they like to do that for at least 1.5 hours. heather is right at 2hrs 45min with Emily right now.
amazing.
i'd better run. time to change her and get her settled in. heather thinks Em has a stinker waiting under there.
bob
All the nurses here believe kangarooing make a huge difference in the development of preemies. they take the baby, in only the diaper, and place her directly on the chest of mom or me then wrap us both up to keep us warm. they like to do that for at least 1.5 hours. heather is right at 2hrs 45min with Emily right now.
amazing.
i'd better run. time to change her and get her settled in. heather thinks Em has a stinker waiting under there.
bob
Wednesday, April 9, 2008
The ABCs of A's & B's
Both girls are experiencing continuous issues with apnea and bradycardia. Here is a little info on this:
from babylinq.com
"Apnea of Prematurity or apnea and bradycardia (A & B's) is when a premature baby stops breathing for more than 15 seconds, the baby's heart rate may slow down (bradycardia), and her skin may look pale, purple, or blue. Because this is a very common occurrence in premature babies, preemies are constantly monitored for apnea by a machine that will sound an alarm if breathing stops or if the heart rate drops lower than 100 beats per minute. If a premature baby is born under 31 weeks, she will almost always experience apnea.
One reason that apnea occurs in a premature baby is because her brain is not developed enough, and it needs to mature. This kind of apnea is called Central Apnea. Another reason that your premature baby may develop apnea is from a blockage caused by mucous or by an awkward position. This kind of apnea is called Obstructive Apnea
Many times a premature baby will begin breathing again on her own, but sometimes she may require stimulation such as a nurse touching or rubbing her arms, back, legs, feet, and etc. Occasionally a baby will require oxygen, a changed body position, a Nasal CPAP, a ventilator, medicine and/or minerals to keep her breathing more regular. As your premature baby gets older the frequency of apnea diminishes significantly.
Bradycardia is the slowing down of your premature baby's heart rate to less than 100 beats a minute. Many times bradycardia will follow apnea, transient tachypnea, feeding tube insertions, and attempted bowel movements. Premature babies with bradycardia also have apnea because the same things cause both medical problems. For this reason, these two conditions are often lumped together and referred to equally.
Bradycardia can be caused by infection, hypoglycemia, anemia, body temperature abnormalities, over-stimulation, airway difficulties, acid reflux, and neurological complications."
from babylinq.com
"Apnea of Prematurity or apnea and bradycardia (A & B's) is when a premature baby stops breathing for more than 15 seconds, the baby's heart rate may slow down (bradycardia), and her skin may look pale, purple, or blue. Because this is a very common occurrence in premature babies, preemies are constantly monitored for apnea by a machine that will sound an alarm if breathing stops or if the heart rate drops lower than 100 beats per minute. If a premature baby is born under 31 weeks, she will almost always experience apnea.
One reason that apnea occurs in a premature baby is because her brain is not developed enough, and it needs to mature. This kind of apnea is called Central Apnea. Another reason that your premature baby may develop apnea is from a blockage caused by mucous or by an awkward position. This kind of apnea is called Obstructive Apnea
Many times a premature baby will begin breathing again on her own, but sometimes she may require stimulation such as a nurse touching or rubbing her arms, back, legs, feet, and etc. Occasionally a baby will require oxygen, a changed body position, a Nasal CPAP, a ventilator, medicine and/or minerals to keep her breathing more regular. As your premature baby gets older the frequency of apnea diminishes significantly.
Bradycardia is the slowing down of your premature baby's heart rate to less than 100 beats a minute. Many times bradycardia will follow apnea, transient tachypnea, feeding tube insertions, and attempted bowel movements. Premature babies with bradycardia also have apnea because the same things cause both medical problems. For this reason, these two conditions are often lumped together and referred to equally.
Bradycardia can be caused by infection, hypoglycemia, anemia, body temperature abnormalities, over-stimulation, airway difficulties, acid reflux, and neurological complications."
Tuesday, April 8, 2008
wow
What truly amazes me is how with a look and a finger grab they can take your breath away.
Both Avery and Emily tonite were able to interact with Heather and I. Their eyes were open and they were both very active. Emily was off the jaundice lights b/c her bilirubin numbers went way down. Avery's blood tests came back showing NO signs of infection anymore. Both gained a little weight and both were active again.
whew...
rollercoaster again.
but both girls actually kept their eyes open long enough to look at Heather and I. I know the docs say that their field of vision is less than 6 inches, but they opened their eyes and looked directly at us and held our fingers. wow.
bob
Both Avery and Emily tonite were able to interact with Heather and I. Their eyes were open and they were both very active. Emily was off the jaundice lights b/c her bilirubin numbers went way down. Avery's blood tests came back showing NO signs of infection anymore. Both gained a little weight and both were active again.
whew...
rollercoaster again.
but both girls actually kept their eyes open long enough to look at Heather and I. I know the docs say that their field of vision is less than 6 inches, but they opened their eyes and looked directly at us and held our fingers. wow.
bob
Monday, April 7, 2008
They said this would be a rollercoaster.
One of the toughest things about the girls being in NICU is that every day can be drastically different from the day before. Yesterday both of the babies were doing well. They were breathing easier with less apnea and bradycardia events. Emily was off her IV. Avery was off her CPAP. Avery was looking better after her rounds of antibiotics (they thought she was fighting an infection).
Today we walked into NICU in a good mood. We had just picked up their Mountain Buggy stroller (off Craigslist!) and were excited to see the girls to tell them about it. Our good mood turned quickly when we saw that little Emily was not just back under the bilirubin lights (for jaundice) but she was under the "double" lights. In addition we found out that she was having a bunch of A/B events which means she forgets to breathe. When she does that the nurses have to stimulate her to start breathing again. So now she is back on her CPAP as well. Also, she was not acting like she was feeling well so now they are running blood tests to determine if she is fighting an infection like her sister.
So the rollercoaster continues.....
The doctors have told Heather and I not have really high "highs" or low "lows", but this is tough.
We will call the NICU again tonite for an update and be back over there in the morning.
Please keep them in your prayers.
Bob
Today we walked into NICU in a good mood. We had just picked up their Mountain Buggy stroller (off Craigslist!) and were excited to see the girls to tell them about it. Our good mood turned quickly when we saw that little Emily was not just back under the bilirubin lights (for jaundice) but she was under the "double" lights. In addition we found out that she was having a bunch of A/B events which means she forgets to breathe. When she does that the nurses have to stimulate her to start breathing again. So now she is back on her CPAP as well. Also, she was not acting like she was feeling well so now they are running blood tests to determine if she is fighting an infection like her sister.
So the rollercoaster continues.....
The doctors have told Heather and I not have really high "highs" or low "lows", but this is tough.
We will call the NICU again tonite for an update and be back over there in the morning.
Please keep them in your prayers.
Bob
First Posting
This is our first post on the new blog. We will be adding daily updates about the changes for our NICU girls.
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