Friday, July 22, 2011

Special Roads the NICU

Since Ben is in the hospital I decided to do some writing and reflecting on the NICU experience Ben and I had.

Please check out my mom's website a support forum for parents of special needs children.

NICU! a scary place
3 days ago 1 comments Categories: Health Tags: NICU, special needs

Why are there so many tubes and lines and wires in the NICU? Why is it so hard to find a doctor? These are questions that haven't changed in the last 11 years as far as I know. In Feb/March of 2000 I spent 28 days in NICU with the boys. In 2010 my daughter spent 8 months with my grandson. Same questions, same problems. Same experience except that she had more knowledge than I did going in.

Mom was there to help make the experience better for her and hopefully for Ben as well. So how do you survive the experience? How do you make NICU or PICU a place you and your child can grow? You start by realising that you are the best thing your child has! You may be upset and trying to figure out what you did wrong, but right now the thing is to keep your child alive!

First ask questions! Make sure that you know who the nurse is for your child and that they are assigned to your child. Find out who the primary nurse is! She or he will be the best friend you have in this situation.

Next find out when doctors round and when they are available for questions. If you don't get an answer, leave the questions written down for the doctor..

Finally, take it a day at a time! Look at the little goals. The long term goal is to leave the hospital!

Have questions? Confused? leave a message and I will do my best to help and find you help!


My name is Stephanie I'm Sandy's daughter and the mother of Ben. My little man spent almost 8 months in two very different NICU's so I have seen two very different styles and approaches to NICU's.

Location Location Location
Houston's NICU was set up in open area pods of six with 2-3 nurses(per pod) with a 1 nurse to two babies ratio. In OKC the NICU is set up in suites with two babies, each nurse was responsible for 3 babies, two babies in one room and another baby in a second room.

With a pod set up there is built in back up for the nurses and built in support from other parents, from my experience the senior parent in the pod took the new mom or dad and gave them hope and showed them the ins and outs of the NICU and hospital. There was always at least one other parent there, so if you needed a shoulder to cry on you never felt like you were the only one. In the suite set up, I found I was the only mom around and had no one (in person) to share Ben's trials and triumphs with. After having all the support Ben and I had in Houston from other parents, in OKC I felt abandoned and alone, no parent should ever feel that way when there child is sick.

Doctors, Nurses, Teams and Rounding

Every hospital is different and every doctor rounds differently.

In Houston the residents and the attending changed monthly; in OKC they changed weekly. I think that changing the doctors weekly is probably too often because the doctors can not develop a relationship with the parent nor can they really get to know the patient well enough, as to know if there has been a minute but critical change. I also think that the parent has trouble trusting a care team if it keeps drastically changing so frequently.

Houston has primary nurses OKC, does not, and I like my mother I believe strongly in primary nurses. In Houston Ben had 6 primary nurses nad the occasional fill in on Thursday and Sunday nights, at times I thought that they knew his better than I did, if I did not notice something they would catch it.
In OKC I begged for a primary nurse for Ben and the hospital still would not let him have one. In OKC he almost never had the same nurse twice.

In Houston the all the attendings and residents from all the NICU teams briefly rounded together every morning at 6am and at 6pm, for overlap and for fresh eyes. Ben's NICU Team (Ben, the Nurse, the NP, the Attending Dr, The resident Dr, the nutritionist, RT, PT, OT, case manager, the Dr.s assistants(secretaries), any specialist that was involved that week, and most of the time me) met bedside between 9am and 11am everyday, to go over Ben's night and the plan of care for the day and week. Every morning at rounds the Resident and Attending always visually and physically assessed Ben and asked me how he looked to me. I was actively encouraged to be involved in rounds and ask as many questions as I wanted, bring up any concerns that I had, asking for any clarification down to how to spell something. At any point during discussion I knew I had the right to ask for a second opinion without feeling like I was putting my sons care at risk. I was dealing with the same basic team every day with only two or three new members every month, and after a while everyone knows Mom probably knows what she is talking about, or at least isn't stupid.

Rounding in Oklahoma was a very different experience. The doctors changed weekly though it felt like it was daily. I was never encouraged to be at rounds and when I attempted to be at rounds the Dr's always showed up when I was out of the room. Sometimes they never even came in the room to asses Ben. I only met two or three of Ben's doctors not including the specialists or surgeons. I felt ignored and as though I was kept out of the loop of my sons care. When I complained about this it only got worse. I hated not being involved in his care or even being asked my opinion on his care. I know that in Oklahoma having a parent that is also an advocate is a rare thing especially in a NICU but a parent should never have to repeatedly request to be involved in rounds nor should they have to demand that the doctor come and personally look at your child or come speak to you in person.

Parent Training
In Houston I was trained to be Ben's Advocate first and then his care giver, they taught me so well that in OKC it was assumed that I knew everything and the night of Ben's discharge they crammed everything that I was suppose to be taught in 6 week into 3 hrs. I can do trach care half asleep and blind folded because the nursing team in Houston expected excellence out of me and expected me to succeed. In OKC Ben had a G-tube and nissan put in, it was assumed that someone had taught me how to care for it, but, I received no education for this. I went home not knowing how to put it back in if he pulled the g-tube out (which he did) or that I was suppose to flush it after each feed. I got the general feeling that I was expected to fail (apparently that is just how it is in Oklahoma.)

Over all I liked the way Houston was set up and run better than OKC but like I said very hospital is different.

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