xfitrn

Oh and she had an NG. Our facility doesn't do OG's past the first few days if they can help it. She was still a very loud gurgle baby even on discharge but at least she could eat. I guess now we will probably never know. Probably the PICU RN's will be the ones to know down the road. Again...thanks to you all!

Hey All! Sorry it took me almost a week to get back! Time flies when you are scheduled to the hilt and short on staff! lol! So I went to work last saturday planning on the side lying feeding and changing her position. I got report and night shift said, "I fed her side lying and she's finishing all!" Now I am shaking my head wondering why it took us so long to try this or change her position! PT came and saw her - she finished over two ounces with her and during the day, Mom finished her first bottle EVER with her! Mom cried. I nearly cried. We high fived - it was pretty awesome. By Tuesday she was set to discharge. I discharged her which was pretty awesome too. I am still convinced, and the Neo's are too that there is something going on with this baby. I want to read up on laryngomalacia. It's just that feeling that something else is going on. I am thrilled that she went home to Mom and Dad though. So long as she is there, she can grow in love in her own home. If the time comes that something does develop - well that will be in time and until then she is home. I can't help but think that all the energy from all the folks on this board helped the solution come to light as well. There is a lot of good energy here. Thank you all again for your input!

oh and we do use chin and cheek with her all the time. Still no avail. ...sorry after thought reply....

Great video! I will try this tomorrow (provided she is mine). I am seriously so excited by all this great input from Everyone!

Thank you both for your posts. We have ruled out choanal atresia. The heart defect is interesting. I am working tomorrow and will likely have her so I will have to see if she had an echo. I am not sure if she has. I get so confused when I am in my off days as to which baby had which without my kardex in front of me. I want to say she has not. Do you think a four limb would be a place to start as nursing interventions? I could certainly knock one out on shift tomorrow. We usually do them prior to discharge. She does wear a pulse ox and has always had intermittent desats during feeds but I guess I attributed it to her inability to breathe airway related and had not thought heart. I will look into it more tomorrow provided she is part of my assignment and get back to you all. Thanks again for all your input and thoughts. I love this site!

I will keep working on it! She is seen daily by our PT. She has been doing baby feeding babies and doing what most speech do for preemies in our area for 25 years. She is angry as all get out and swears something else is wrong beyond normal IDM. She has been working with this baby since second week of life. I haven't tried side lying. I don't think anyone else has either. I am hoping to have her when I go back Saturday or Mon-Wed this week. I will keep the thread updated and let you know as it progresses. It's so dang bizarre! We get IDM babies all the time! (We are on the Mexico US border and have some of the highest rates of diabetes in the nation) but this one.....so strange. She's not even LGA. She's a little cute package of mystery.....

She has been tested for reflux. She hasn't been on meds but we have suctioned her when she is gurgly every way from Sunday. We get nothing. Nothing comes back at all - forwards backwards, bulb syringe or deep. Nasal or oral....it's very odd. It's like the gurgle is trapped somewhere in her that we can't reach. ...also part of the mystery...

Tiffy thanks so much for your reply! Yeah - the g-tube conversation has been broached and is imminent next week I believe. I guess as the level 2 RN caring for these babies and their parents, it kills me to see the heart break in Mom's face and the defeat in this baby's eyes. You can actually see her give up about 15 minutes into every feed but not before she tries her hardest. It's been sooooo heart breaking! You are right about the Neo's coming to see (or not rather). Her roommate was a baby with some influential parents last week and she also is a bit of a feeding mystery. They made a stink and suddenly our head neo came down to see the baby. Now that baby has all sorts of diagnostics and extra treatment. I was hoping that this baby would also get his attention as we (the bedside) keep bringing it up but apparently this baby just won't get his attention. That also kills me. *sigh* I feel so bad for this baby and her family. I guess it's just a "Time will tell". Thank you all so much for your replies. I guess I was hoping ... I don't know what I was hoping but it's still nice to have a place to come where we all know what it feels like. I don't post often (ok more like never) but read on here a lot. This site is fantastic. Oh well we shall see. I suspect your right Tiffy, that this is something that will manifest as she gets older. Until then we will do the best we can to help her now. *sigh* Thanks again to all of you.

We are a level 3 NICU. It seems like they are distracted by babies with more immediate problems such as micros. She appears normal from outward appearances. I just wanted to see if anyone had seen a baby that sounded like this one and had an idea. We will keep pushing our practitioners to see if we can get them to look at her again. Thanks for your input.

She is about 3200 grams right now. She keeps gaining because she gets the volume via the ng. She has decent tone. The arms thing is just strange but she has appropriate head control. Her legs are strong considering where she has been her whole life.

Hello All! I am writing to see if anyone has any idea or has seen a baby like the one we have now. She is 48 days IDM born 32 weeks gestation aga. She was all the norm initially and transferred to level 2 relatively quickly for feeding where she has stalled. She cannot finish a bottle and sounds very congested while feeding. While we say congested - think sounds like she needs to be deep suctioned A LOT! We suction from every angle and get nothing. This has been for since she was about 2 weeks old. We have done CT, MRI, Barium Swallow and nothing. They all show normal. This child cannot finish a bottle though! Our PT works with her daily. You can see defeat in her eyes when she is unable to finish. I also find it odd that when she feeds, she leaves both her arms limp. She does not flex her arms. She is a mystery but at this point it seems the docs are just waiting for mom and dad to give up and let a g-tube be placed. I am still bothered. It seems to me that she has something wrong but no one knows. Has anyone seen anything like this? Does anyone have any ideas? Thanks in advance.

I have been in this program since Sept. 2012. So far so good. I like the pace of classes: one class every 6 weeks for 2 classes per semester. I already have a few people who have agreed to precept me when the time comes. My husband is one that moves around with his job so I needed a program that would move with me. The school itself has been very responsive. I did ask about what would happen if we moved to a state that did not recognize Walden, and the short answer was I would probably stick behind in the state it was recognized in, take my boards, get my license then move my license. That is my plan if that should come up for us.

Thank you for that. I didn't even think about a docking station. That's a good idea. To your point, yes, this is for the area of our older babies. We actually use the lullabies now to help them calm down which works much better than some of the other methods (overused sweeties for example). Thanks for the docking station idea. I will look into it.

Hi there! First time poster. I looked through the threads and did not find one relating to this so if there if, I apologize for not finding it. I work in a level 2 & 3B NICU. We have our feeders and growers on a separate floor on a very nice little locked unit away from our level 3 babies. It's an 8 bed area little unit. Quite nice. As you all know though, once one of the little ones start crying they can feed off of each other like mad! If you've got 4 babies and 3 of them have the same touch time.....oh boy!!! I've downloaded a wonderful app for my iphone called "baby sleep" (It's free and has the best lullabies) which works great for one room at a time. It's made us wish we had a wireless system - or wireless speakers so that we could keep the lullaby machine at the nurses station and feed the lullaby into each of the 4 rooms with individual volume control for each room. Are there any NICU nurses out there who are aware of any such thing? I would like to get it as a Christmas present for our babies (and our nurses). I don't want to get four individual lullaby's as they would all just create noise if they are playing different lullabies at different times. I was hoping for something that would be in sync. Any thoughts are appreciated!