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