Wednesday, February 20, 2013

Thinking out loud.

I hope that one of the most helpful things about this blog is that you get to watch me go through things that you might have to go through.

So today, I'm literally going to think out loud in a post (that I'm typing with one hand on my phone).

I'm having a very stressful day and I need a release.

It starts with the dog. She cannot stand to be confined and we can't stand to see her going insane. Yesterday when I got home, she broke out of her crate and was upstairs sleeping on our bed. Long story short, the bandage was irritating her foot (from occasionally putting weight on it) and the vet reiterated that we MUST crate her.

I can't handle it so I told dh that he is on dog duty -I don't want to make any decisions.

Because she needs to stay in the crate, my mom is not going to spend the day unpacking stuff from the house tenting which really needs to be done.

But that's just the peripheral stuff. We decided yesterday that we will take out Dylan's tube again today and that I will stay and do all of his feeds for 24 hours.

I need to devote all of my energy to solving his problems right now. Not the other stuff.

Lisa at Hapa Hopes posting a great article about preemie feeding on my last post. I read it before getting out of bed this morning and it set my mind racing.

First, I see all of the signs of feeding aversion in Dylan; arching, pushing nipple out, making faces. He doesn't so all of them all of the time but he definitely has issues due to months and months of having various tubes down his throat coupled with reflux.

I worry that I have pushed him too hard and have caused some of the aversion. That makes me sad and pisses me off at the same time because I am not a doctor or nurse. They leave me on my own a lot because I am competent and show confidence, but they need to ensure everything is going well. It is their responsibility to make sure I'm doing it right.

That being said, I do really follow his cues and give him lots of breaks, I just push him a little bit past where he probably wants to stop.

Because of all of these thoughts, I did some more research this meowing regarding reflux and feeding aversions. Lots and lots of babies have this issue Nd they are not in the NICU. So the bottom line is that we need to go home. I think I could push to go home without the g-tube, but I honestly think it might be the best thing. It will take all of the immediate pressure off of each feeding and will ensure that he doesn't lose weight.

If we do the g-tube, and I think we will, it should be next Wednesday. Then, he'll need about a week of recovery before coming home.

But last night he took 52, 66, 60, and 52 from 9:30 pm to 6:30 am. That is his best stretch ever!

Then for me at 9:30 am he only took 19...possibly because he had to take his nasty vitamin orally.

So that is all stressful, but I also have a nurse that I don't really like. I have talked with every level of nursing here and they have all promised to give us consistency, but it doesn't happen. Yesterday and today we've had nurses that have only had him once before. I think the issue is that the system of assigning nurses is not computerized, but still..,I've given them lists of nurses I prefer. The little babies should definitely have priority, but when a nurse that I've just had the week before for 4 days in a row gets assigned to a stable baby in neighborhood c and I get a brand new nurses, I get really annoyed.

So I'm sitting here on a really big day without feeling much support. I don't feel like I can ask this nurse many questions because she doesn't know Dylan. And frankly, I don't like her.

I did ask the OT to come in and voiced my frustrations and asked her advice on how to do things today, but why do I always have to ask? It's exhausting! What would happen if I weren't here every day?

I feel much better now than before I talked with the I just have to wait for Dylan to wake up and hopefully take 60 again.

The whole goal of taking the tube out is for him to get hungrier. I'm also really hoping it'll put him on more of his own natural schedule.

I think he's stirring...


  1. I can relate to so much of this!! Once we finally got C eating enough by bottle to come home, I'm trying to teach her to breastfeed and it's like starting the whole process again. Everyone says "don't push her, wait for her to grow..."

    And the nurses - I really don't understand why they can't be more consistent, both in who you have and in the care different nurses provide. Excitinng that Dylan may be coming home soon, though!

  2. My daughter spend eleven days in the NICU. She was a full-term baby but only weighed 5lbs 2oz and had trouble breathing.

    While in there, she also gave us some trouble with feeding and it came down to getting her to take the full feeds for 24 hours.

    I get your exhaustion (though you've dealt with it so much longer than I did, I'm so sorry you're still there.)

    I did want to say that I totally understand your feelings on the nurses. We got a few less than stellar nurses too and it was tough to deal with someone you don't feel like you can talk to, someone who doesn't seem to care enough to answer your questions or just support you as you try to figure this all out.

    Good luck with everything. I really hope Dylan figures it all out soon and you get to go home.

  3. Most states have a program that would allow for a therapist (OT or Speech....or possibly both) to come to your house to help him wean off of the tube and/or work on his aversions...just an FYI if you decide to take him home tube fed. As a Speech Therapist I've worked with a few kids like him myself.

  4. It is part of your responsibility to ask those questions, a new nurse may see things in a new perspective which could be very beneficial. You are the advocate for him you should be there all the time. If he were home u would be with him all day.

    1. Is this your first time reading my blog? Because I advocate for him every single day. I agree that different nurses have different perspectives. Every time a new person walks in the door I ask if they have any new ideas for him. But some nurses are more competent than others.

      Lastly, what do you mean by all of the time? Should I have been living in the NICU for the past 5 months? Are the 9 or so hours I spend there a day not good enough? Do you think I think I am lucky not to be with him 24 hours a day? I take major offense to that insinuation.

  5. This comment has been removed by the author.

    1. Coward. At least post with a link to your super mom of the year blog so that we ALL can bow down to your superiority.


  6. Mrs. GG - I can't even begin to imagine your situation. I rarely comment but always read your posts and am rooting for you and Dylan. I can't believe you're getting flak from these two people. Please try not to take their insensitivity and rudeness on board.Your love for Dylan shines through in every post you write. You have to do what you can do - which you are doing - in a really difficult situation. So many of us are out here and support you. Please try to ignore the trolls and their hurtful comments.


  7. It's not their responsibility it's yours! Stop acting so helpless, you put your son their in the first place by killing his siblings and likely causing cervical incompetence and pprom

    1. following your logic, it seems that Mrs. GG undoubtedly saved dylan's life. if she had cervical incompetence and went into labor this early carrying just him, it seems that there is no way she could have carried higher order multiples to viability. she was faced with an unthinkable decision and made the best choice she could.


  8. Oh my freaking word....Jennifer, Grace and Buttkiss.....get the hell out of here. If you do not agree with her choices from last year....then go....just go. You are the worst kind of people to just stick around so you can be cruel. get off your fraking high horses and go take care of your "oh so superior" family. holy cow.
    I can say this because I know I would not have made the same decision as GG....but guess what? it was not my decision to make and it is not my place to judge her...just as it is not yours.. I can be here to support and offer up prayer for her and her family. You can just go away. Watch out...Karma is a bitch and it takes one to know something tells me she is not too far from all of you~!!!! are doing a great job managing yourself and being Dylan's advocate. Please just let the universe take care of these negative, trolling, terrible hearted people!!!!