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

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/

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

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

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

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