Wednesday, July 14, 2010


I'm so frustrated, Every time I go in I ask the nurse how ellinas doing and they say she is doing great, very well for her age. A few days ago I asked if I still could only hold her once a day or if we could make that 2. My nurse said she was looking like she would do fine with 2 times so lets just try it and see what happens. They took her pic line out yesterday and I was told that Ellina could get a bath 24 hours later, she kinda smells =). Any way this morning the they moved Ellinas bed down one so now her regular nurses are now switched to a different group. Her nurse this morning made a comment about why is she being held twice and when I asked about giving her a bath she looked like I was asking to endanger my child. I said its fine whatever. Then tonight I had a nurse Ive never had. Ellina has certain times that they call hands on time every 6 hours, every 3 hours she gets messed with a little but they really try not to more then every 6. So if I cant make it during those times I try to make sure and call. Well tonight Mom and I went to home depot and of course it took forever so I didn't get to the nicu till past 9. The nurse came over and started asking me questions like "What do you know about whats going on with her?" And "whats the plan do you know bout her feedings how many times do you hold her?" etc. I really felt like I was being attacked, and pit on the spot. I really don't want to put my baby under too much stress, She went on to explain lots of things I wasn't aware of so although I didn't feel that she approached me right at the same time she was saying that it seemed like I wasnt as well informed as I thought I was. Ellinas heart not only has a thickened wall it also has a problem where its not as efficient as it should be and doesn't open and close all the way. She went into great detail and at one point I thought I was gonna really freak out it just sounds so bad, she explained that most of the problems people can live with their entire life and not know it plus we don't know if it ll be better by the time she is full term. Also she lectured me that Ellina is already working so hard that holding her is too stressful, that I should hold once a day and only for an hour saying its just too stressful, yeah its important that she see and hear her mom so its important that I make sure to come in on her hands on time. I feel terrible that I cant be together enough to go over right on time and that I have so much other stuff going on, I miss my kids and my husband because I'm gone all the time but they consume enough of my time that I cant be on time for everything. I don't know with the holding thing cause obviously every nurse has a different opinion but this nurse made me feel like I should just leave and come back when shes all grown up. Also she said that Ellina is way too small for her age, she showed me the charts and its showing her in her 10th percentile if that. Kept saying that Ellina should be closer to 3 lbs. I'm scared I'm frustrated but at the same time I don't fall for it all. I'm hoping that I get one of my favorite nurses and I can see what her take is on it. I will visit with the doctor about it soon too. I know that everyones praying so I don't need to ask


  1. I have a few suggestions for you. I spent 6 1/2 months in the NICU with one of my triplets. I was unaware until they were almost 3 months old that your could have primary nurses for your child. My son was very difficult and very sick. I used to get so upset when he had nurses that did not know him, (esp the older he got)they would make me feel bad and do things he did not like. Ask your charge nurses, supervisiors, managers whom ever you need about getting her a primary nurse on each shift. Speak out and put your foot down why they are not doing something you like. Esp like when they move your baby room to room to make room. Finally I am not sure if I told you about this before, but all the stuff your daughter is going through is in this wonderful book that I think NICUs should provide to all parents. Is is written by a doctor who actually delivered micro preemies. She lost one of her sons as well. She goes into detail about almost every complication a preemie can have, the care and why they do things the way they do.

  2. You need to use your voice here Mishael. Number one, do not get a guilty conscience about anything here. You are doing the best you can in this situation and right now, you are doing far better than most parents could do. So stop feeling guilty.
    Secondly, do not listen to the nurses when it comes to your baby's condition. Yes nurses are knowledgeable and skilled but in my experiance of working with a ton of them, they all try to play doctor and try to take things like this into their own hands. If it doesn't come out of the mouth of your doctor, do not take it to heart okay? They did the same thing when my dad was in the hospital before he passed away. They had me believing the doctor didn't know what they were doing and it was just a bad sirtuation. When they start scaring you with the talk of what's going on just hold up your hand and tell them that you prefer to discuss it only with the doctor. You hear too many things from too many people so you want to hear things only through him/her so you get one story and only one story.
    When it comes to your baby, again discuss things with your doctor. The next time you see him/her talk to him/her about the daily plan. How often may you hold her, how often is too much, that sort of thing. Then you take what your doctor tells you and bring it to the nurses. Tell them that this is what he/she said and that is what you and the nurses will go by and you don't want to hear anything different unless there is an MD after their name. You tell them that you also need the times of hands on time because that is the time you plan on holding your child, or doing whatever with her, because that is not only your God given right but also what the baby needs to get better and to thrive. This will also help with not missing any precious time with Ellina but also allowing you to be home or with the kiddos and Cody more to. That way you aren't fighting to be two places at once or running late for anything. Less of a guilt trip you know?
    Also explain to the specific nurse that you do not need to be lectured or scared or pressured about anything. You are taking your baby's health one day at a time just as it should be. Your baby has defied odds to this point and will continue doing so so her point of view and opinion on how your baby is doing is not needed. God is in control and that's how it should be. And if she can't make you feel comfortable then yes, you can ask for a different nurse and don't have to put up with this one. You are going to be tested Misael so you need to stick up for yourself and for your baby and there is never ever anything wrong with using your voice and with having to request different nurses. I've done it and had it done to me when I worked in the hospital and you know what? There isn't anything wrong with it. Don't be afraid or worried or frustrated. I'm praying for you all over there and wish I could be of some help. If you can think of something let me know.

  3. I remember going thru all of what you're talking about. Don't let the nurses push you around - they are just pushy people. Then, as far as getting places on time, write a schedule. You're a super busy mom! Get military-strict on yourself and organize everything so you can make it there. She needs you as much as, if not more than, the rest of your family, and it will take a lot of work & discipline on your part to care for your two-place-family until they're all one-place again! ask Martha for a book/resource on time management and organizing your home. It's what I'm doing right now too, as I'm too overwhelmed to function and care for everybody's needs effectively without more structure. I don't like it, but its necessary! Ask for help from those around you! If not for my friends and family, I would not have survived the first year, especially with all the problems I had from the surgery on top of NICU, and Zoe's special needs (2-6 appts per week!). Plus it was so much easier for Zoe to be in the NICU because all the skilled help took care of her when I had to help with the rest of the family. Maybe you & Cody could work out a schedule where you alternate when he's home? I don't know, but there is a lot you can do to make it work, so don't get frustrated!

  4. Mishael there is really great advice in those comments!! What I found for me was I was too emotional to talk to the nurse when I felt attacked like that. Then she would go further insulting me because I was being overly emotional. Maybe it would help if you always have someone with you to do the talking for/with you. Have them take notes of what the nurse says. You do need to know what's going on of course, but you need to be there for your daughter, and if they are affecting you this way it doesn't help things much and you are less likely to remember what the nurse says. I would definitely talk to your favorite nurse and see what she has to say. Go talk to the nurses on the other level, but go over their head too. They should not be telling you two different things OR they should be telling you WHY. Do this at a time you can't be holding her anyway. So it isn't taking away from that special time, or stressing you when you want to be enjoying your baby. If you do find yourself being "too emotional" your companion can remind the person you're talking to about what you have been through. Your hormones are not the only thing making you emotional but they alone are reason enough. I think even nurses who have had babies tend to forget. But I was shocked how many times my emotions were used against me by medical personnel. Hugs to you....have you been back to Triplet Connection? The bereaved parents board would be a great place to get support and understanding. Take care. You are all in our prayers every day!


  5. I agree with the previous two comments, Mishael. While I see nothing what-so-ever wrong with Beckie's approach and I'm sure it worked for her (and might for you) I definitely could not be that confrontational. (She's obviously a stronger personality than me :-) Everyone handles these situations differently.

    Here's what I did, though - another option for you to keep in mind just-in-case. There were two nurses who upset me during Chloe's 5 months in the NICU. One, because I thought she handled Chloe too roughly and the other because she acted annoyed every time I called for an update. Both times I was able to handle it without confrontation. I went to the charge nurse and told her that I didn't want them assigned to Chloe again. The charge nurses (the ones who make the schedules) were very courtious and concerned about what it was that made me unhappy. They put a note on the schedule and the nurses I "black-listed" never got Chloe again. I also agree that you should talk to the doctor asap about any questions that arose after talking to her.

    And if there are nurses that you particularly like, definitely ask them to be Ellina's primary nurses. It makes a world of difference to have the same person caring for your baby day in and day out. I even had two nighttime and two daytime primary nurses!

    One more thing. That nurse shouldn't make you feel bad or like you're doing a bad job. You're an excellent mother and doing everything you know to do. I can practically feel the stress oozing out of your post. You have a baby in the NICU and two babies at home - it's no wonder you're overwhelmed. (I had a 4 year-old at home and know it's difficult to get to the hospital with a little one) Do what you can but don't drive yourself crazy. Ellina will be in the hospital for more than a week and more than a month and you can only run on fumes for so long. I know it's easier said than done but you need to take care of yourself at least a little bit so that you can take care of your kiddos.

    Praying for you and your sweet girl.

  6. By the way, there were only two comments posted when I wrote, "I agree with the previous two comments." I now agree with them all. :-) These ladies have some good advise here...

  7. Hi Mishael - my son was in the NICU as well. I don't know how they do it in every NICU but in ours the dr. called us everyday. There was a nurse that made me feel, actually told me, that pushing to nurse my son when I would go was going to prolong his stay in the NICU and that it wasn't that beneficial - actually more stressful. So when I spoke with the Dr. the next morning I asked him if that was the case - I just wanted my baby home. He got furious that the nurse was diagnosing and giving me false information. We never had her again. I am not confrontational, but it's so overwhelming when you are in that situation that you need to feel the people who are taking care of your baby are on the same page as you. Hang in there.

  8. Hey Mishael, Hang in there eh and don't worry. God is in control. He will help you through this crazy time. God also knows more and is more in control than any nurses! Love you and will keep praying that all goes well.
    Love and prayers, Elisa Grace