Thursday, April 28, 2005

Wireless Revolution

Yesterday morning was terrible. I walked in with my video camera to take a little movie of Jack to show to Janie. What I found was Jack sleeping in a puddle of his own vomit. It was caked over one side of his face, all over his bed, his clothes, and his blankets. I looked around and in this room of 10 babies, there was only one nurse who was far on the other side and very busy with another baby. Okay, I'll work on cleaning him up. His nurse or another will be along shortly. I start cleaning him up.

I want to take him out of his bed but the nurse has tethered his feeding tube to a giant syringe on the side of his crib. I read the notes and she tried feeding him for 15 minutes about 30 minutes earlier, then put the rest in this syringe to go in his tube. His feedings had been increasing so much that he's been throwing up when taking in large doses through the tube. I wait for a nurse, any nurse, to come into the room besides the one that is very busy (and a yell away). I wait a little more. A little more. There are no nurses coming in, only mothers. Besides the one nurse across the room, the usually busy room is completely empty of nurses. Is there some sort of party going on somewhere? Where are all the nurses?

Then I start to get upset. They left my baby alone! He was sleeping in his own vomit and no one noticed! This isn't some 3rd world orphanage, this is the NICU! Where is everyone? Finally a respiratory tech walks by, sees my face and asks if I need help. Yes, I do. Can you get a nurse? My nurse is on break but she's able to get another nurse to come into the room who immediately starts helping me.

By the end of the day I've talked to many people about it including his nurse, the charge nurse, the social worker and the nurse manager. No one can tell me how long he had been laying like this. Instead they tell me that nurses need to take breaks. Yes, I understand that, but shouldn't someone have been watching her babies for her while she was on break?

They try to tell me that the monitors were on so he was in no danger. Perhaps, but I don't want him laying in vomit. Besides, if monitors were all that were needed, then why have so many nurses? They need that human touch. A baby with a history of throwing up on a large feed needs to be checked on after being given an even larger feeding. A monitor is not enough. They need someone to look in on them now and then. A person who cares.

They also tried to tell me that this could have happened to me at home. No, I have a daughter and I never found her like this. When I'd feed her, I'd burp her and if she needed to spit up, she'd do it then. If I did lay her down in another room, I would have heard her get sick on the monitor and checked on her. Heck, I checked on her all the time anyway just to make sure she was breathing.

I tried to explain to them that it's all about trust. I can only leave at night because I'm trusting they are taking care of my baby. This means more than just making sure his heart is beating and his respirations are normal. This is about taking care of his needs. I don't think they got it. Even though they would apologize, they would follow it up with "But..." They have no idea how hard it is to not be there with him all the time. They see bad stuff all the time that a baby laying in and covered with vomit must not be that big of a deal. To me, it was very distressing. I'd had enough of the feeding tube.

So during rounds, the neonatologist and his gaggle of interns, residents and who knows who else (who all happen to be young and female and nodding at whatever he says) were discussing my Jack and his difficulties eating. I then offered up the information on how well he had done at the recreational breastfeeding. I sold my neonatologist on letting me breastfeed on Jack's demand (not scheduled) and suspending all bottle feeds while I'm there. (I think they also wanted to appease me considering that morning.) The free breastfeeding went so well that this morning they removed his feeding tube.(!!!) No more forced feeds. If they give him a bottle, they have to take the time to hold him.

Because we got a second culture back indicating infection in the deep line, they also removed that this morning. (!!!) He then had to have an IV put in and as much as I hate him getting poked, I'm really glad to have that deep line out. (He's finally wireless! I must have said that a million times today. No one gets it but I get a kick out of it every time.)

Today I got to unplug his monitors and carry him off into the pumping room for breastfeeding in private. No beeping, no people, no other baby emergencies, no fiddling with the scales or portable screens, just Jack and Matt and I. (Matt got the day off today on account of rain.) He latched beautifully each time and stayed on for regular feedings. It was like Pinnochio turning into a real boy. Jack was a real baby; untethered by tubes or wires or monitors and able to easily breastfeed.

Matt and I joked about taking him and running. I asked him to act as a block, and I'd run with the football. Our nurse warned us that she had installed lojack. He was not yet paroled, just on conditional probation with house arrest. It was just so nice to hold him and walk with him and feed him in private. The good news is that he should be able to leave on probably Monday or Tuesday when he finishs with the antibiotics. Actually, he should be home by now if it weren't for the infection and SVTs (that one time 12-hour heart trouble).

And I didn't have to pump once at the hospital today. I hate that pump. I really, really do. Pumping doesn't feel anything close to breastfeeding. It's so mechanical. So utilitarian. So cold and bland and colorless. I become a producer of milk instead of feeder of baby. Technically its the same thing, but I think you know what I'm trying to say. I'll be really glad to get him home and be able to pump only 'recreationally' if you know what I mean.

I'm starting to feel like I can exhale a little. I even left tonight at a reasonable hour. I'm very, very excited.

P.S. Thank you all for advice yesterday. I had to delete a couple of entries including last night's because Matt was fooling around on Netscape and found my sight after searching the name of our family's website. It had to do with the picture I had posted of Jack a few days back. Some people could find this in that way, then read what I wrote and take my personal feelings very personally... and so on with all my paranoid stuff. I read each comment at least a few times before I deleted the post and got some great ideas. Definately not assvice. I feel like Sally Fields in her famous oscar acceptance speech except to change it to "You get me. You really get me." I really have been beating myself up over all these feelings. Feeling that I am such a piece of dirt. You are so good to me, helping me up when I'm feeling so low. Thank you. Truly.

Also, although I say a lot of things about the nurses, almost all of them are very kind and very caring. There are a few kooky ones and maybe a negligent one here or there, but for the most part I really love them. They do take good care of Jack and try to see to what we need too. I'd love to think of something I can do for them when he finally gets to come home. I know it sounds funny considering how I started this post, but it is the exception and not the rule. Any ideas to express my gratitude?

23 Comments:

Blogger chris said...

I'm sorry you had to go through the scary vomiting episode but am relieved that you are finally able to BF your baby.

I've been filling my husband and close friend in on your progress--you have people who "get" you all over the place.

Take care.

4:02 AM  
Anonymous Anna V said...

I get you. Ummmm, my sister who is insane but also works on the cystic fibrosis ward says that they get overloaded with chocolate.

Yay the bf'ing. Yay the wireless baby. I so hope he is home soon and all goes smoothly.

4:44 AM  
Anonymous Anonymous said...

Pazel, if you don't want to bring the nurses sweet stuff (if they get that too often) why not bring them a big ol' pizza? Or some empanadas?

I found myself in full weep mode as I read your post, before I even knew why I was crying. I realized that I totally related to the "wireless" thing. My son was not in the NICU, but hospitalized at 2 months old (actually 7 through 11 weeks), and lost weight, so he was very tiny with all sorts of wires and tubes. When it got to the point where I could pick him up and carry him around the hallways (or outside in the sun!) it was such a huge relief. Indescribable, really. And, since his problem was digestive as well, I completely relate to the bfing instead of pumping thing.

One memory that flooded back was of my sister. She came to visit in the hospital and she changed his diaper--which was a big deal to me because all the stuff that he was hooked up to made that job much more difficult. It didn't phase my sister in the slightest bit. She sang to him too. It was like she knew just what to do, while I was mostly clueless (in that first week anyway).

I'm so happy with how everything is going. Almost home!!

bec :D

6:34 AM  
Anonymous Anonymous said...

I am sooo excited for you and your family, you have been in my prayers. One day soon this will all be a distant memory, and you can laugh and say "remember when". What dosen't kill us makes us stronger.

Soon Jack will be running all over the house tearing the cabinets off the walls! Won't you be glad!

My suggestion for the nurses would be something for break, (no pun intended) like a tray of sandwiches from Subway or something, and some drinks in a cooler. It would be a welcome break from sweets and such.

I am so glad you have a light at the end of this nightmare!

6:35 AM  
Blogger cat said...

Sorry to hear that the nurses couldn't figure out how to take breaks and give the babies care.

Yah on Jacks "wireless" situation and the private time you got to spend together. You are an amazing advocate for his care and an inspiration he's one lucky little man to have such a great momma.

Soon you will all be home and that private time for just the four of you is round the corner.

7:07 AM  
Anonymous Anonymous said...

It's amazing, and inspiring, to see your growth through all of this. I love that you are now challenging the nursing staff about Jack's care. And lying in your own vomit IS a big deal.

When my little guy was 6 weeks, and back in the hospital for 3 days, I only left one time. I alerted the nurses that I was running down the hall to the showers. And when I got out, I could hear him screaming. And they were standing at the nurse's station outside his room having a gabfest, completely oblivious. I think you are right, that they see so much that it doesn't bother them. But yes- it was about trust. And we never left him alone again.

Wow, Monday or Tuesday! Can't wait!

7:22 AM  
Anonymous Anonymous said...

Sorry, forgot to sign my name - Jill

7:22 AM  
Anonymous terri c said...

Counting the moments with you until Jack is at home. SO very glad you are able to BF now, so good for you both. The nurses might like a basket of fruit, healthier than chocolate? And a card and note.

7:23 AM  
Anonymous Anonymous said...

I'm a physician. I'm glad that you stood up for yourself and for Jack. That whole vomit thing was unacceptable!

As far as a thank you gift, I can honestly say writing a letter to the administration letting them know how you felt about the care you recieved is always appreciated. Especially if you can use specific names and the charcteristics that made their care compassionate.

If you want to go with something more tangible....as someone said above they constantly get sweets. Do you have a Panera Bread, or Cosi or something like that? You could get a gift certificate that they could use.

Depending on how much money you want to spend, or effort you want to put into raising....I've seen patients donate needed items to the NICU. Anything from wipe warmers to a rocking chair.

Hope that helps and you and Jack are in my thoughts.

7:27 AM  
Anonymous Anonymous said...

I am very sorry for the vomiting episode. Yes, another nurse WAS responsible for Jack while his nurse was on a break. That nurse covering for the original nurse was the one that screwed up. I'm very glad to hear that the majority of the nurses are good.

Speaking as a nurse in an adult ICU, there is nothing we like better than pictures/visits after a patient has gone home. We LOVE when our patients come back, all better, and talk to us and hug us. I can imagine that the NICU staff see a lot of bad outcomes so to follow up on the good ones makes the job worthwhile. We still talk about patients that were on our unit years ago and how they're doing now.

If you do bring food (which we always love!), please consider bring it at shift change. As a night shifter, we often missed out on the food and fun that occurred during the day. Or some of our families bring 2 gifts and ask the charge nurse to not bring out the second round until the night shift. Just a thought.

Really, though, pictures/visits and follow up from a healthy baby and happy family is the BEST gift.

Linda
http://indigogirl.typepad.com

7:47 AM  
Anonymous Anonymous said...

Food is always good, but a letter to the administration, mentioning specific names, might be better. It will go in their permanent personnel file and can be a help to them come raise/promotion time. Plus, there's really nothing better than your boss coming to you with a letter written to him/her that sings your praises. It's better than pizza.

8:30 AM  
Anonymous Heels said...

Real food (non crapmo sweets, I mean) is always appreciated according to my L/D nurse mother, but she would agree with the above poster that a letter to the higher-ups at the hospital is BIG.

Mention specific names. It's a huge big deal.

I cannot wait for baby Jack to be home with y'all. I look for updates every day and I am so happy you got to nurse him and snuggle privately.

Be well.

8:56 AM  
Blogger Wavery said...

Declaring major victory for you. Little Jack is going have stories to tell.

9:33 AM  
Anonymous Rebekah said...

Reading about your private time breastfeeding Jack was just wonderful. Amazing. I'm SO glad that you're able to do this now, and that he's doing so well with it! What a champ. I'm so sorry about the whole vomiting incident, too. That must have felt just AWFUL.

Thinking of your family and praying for all of you ...

10:38 AM  
Anonymous Wrin said...

unsolicited assvice:

make sure she's a respiratory TECH before you call her a tech -- in the U.S., there is a difference between the three, aide, tech, and therapist, and as a therapist, even in Canada where there is no such thing as a 'tech' anymore, we've been denied university certification because "tech schools teach tech jobs and they aren't smart enough for university".

Just something that gets my back up.

end assvice.

10:46 AM  
Anonymous Amy said...

What a joyful image...you breastfeeding your "wireless" son in peace and quiet.

My sister is a nurse and it is such a difficult, important and underappreciated job. The best gift she ever recieved was when the husband of a woman she had cared for at the end of her life wrote a beautiful letter to the editor of her local paper praising the job that nurses do and thanking several of his favorite nurses by name. She framed it and hung it in her home office. Of course a gift certificate to see a movie or to go out to lunch would be wonderful too but the importance of kind words can not be overestimated.

11:44 AM  
Anonymous Kris said...

You are a GREAT advocate for your son -- my hat is off to you. My twins were in the NICU for seven weeks so I get it, I get you. I am so, so, so very glad to hear that he will be home soon. Stay strong.

12:24 PM  
Blogger Erin said...

Good for you, Pazel. Be the mommy bear. I cry almost every time I read a new post. I don't know if it's because I'm pregnant, or what. It's just so hard, what you're going through. Celebrate the breastfeeding! Celebrate the wireless baby! I hope your whole family is together at home soon.
-Erin

1:13 PM  
Anonymous Anonymous said...

It is always frightening to come into the NICU and find your baby in a state that he would never be in at home - if you were taking care of him. It is difficult to balance the confusing feelings you develop for your nurses. Our Jack had a wonderful primary nursing team, but they couldn't always be there.

Anyway, I know the feeling of wanting to give something special to the people who helped care for your son. We ended up having Andrea at Superhero Designs make Superhero necklaces for each of our nurses. We were able to find colors and bead shapes to match each personality of our nursing team. If you want to check out her stuff it is at superherodesigns.com

We are thinking of you and your family and hope Jack comes home soon!
-Amy

1:41 PM  
Anonymous Janice said...

I have been following your story since Julie's post on NICU suggestions. I have no NICU experience (and hopefully never will) but thank you for sharing your candor and raw emotion. Your warmth exudes in every entry. I am so glad to hear the end of the tunnel is just around the corner and will continue to keep you and your lovely famiy in my thoughts.

7:48 PM  
Blogger job opportunitya said...

Unique blog my friend, I can hardly wait to vist
this site again. I just worship the site its comes
from! Believe me in my extra time I'm consistently
looking up blogs like this.
Go and click my plastic surgery picture blog.

12:46 PM  
Anonymous Corporate Basket said...

Hi there! While out blog surfing today for specific info on california gift basket, I ended up on your page. Your site shows that I ended up a little off base, but I am certainly glad I stopped by. I will bookmark your site for a future visit, and should you ever need it, there is plenty of information on this site about california gift basket.

4:11 PM  
Anonymous Gift Basket said...

Hi there, you have a nice blog. Today I was out blog surfing looking for detailed info on beer gift basket when I found your page. Your site is not an exact match but it did catch my interest. I am going to add you to my favorite list of blogs for future reading and reference. Should you ever need information on beer gift basket then drop by the site above and check it out.

9:57 PM  

Post a Comment

<< Home