Decided to move in with Adalyn...(a little vent and a little long..)

DrRx

So, Monday Adalyn was having an AMAZING day, took all her bottles (8 in a row!) and there was the talk of discharge next week.  Yesterday, with her 8am feed, the nurse decided that Adalyn "looked" too tired and so she just tube fed her, to make sure that we would be able to bottle feed her when we came for her 11am. 

Ok, I thought, perhaps she was tuckered out from the 8 bottles in a row.  At 11am she was ready and screaming for food and took her whole bottle.  We left before her 2pm since we have about a thousand things left to do in the house. 

I called after her 2pm and 5pm, and the nurse said that Adalyn was, once again, really tired, and that for both times she just took about half of her feeds (but she only tried for 15 minutes) and then just tube fed the rest.  When I called the night nurse (who knew we were coming for the 11pm), she told me that since Adalyn didn't take her full feeds, she decided to just tube feed her 8pm! I was annoyed, but, ok, maybe she is not doing as well because of the decrease in calories? 

Well, once again, she was screaming and ready for her food at 11pm, and although it took her about 22 minutes, she finished her full feed.  I thought that maybe she was rounding the corner.  I called after her 2am feed (I was up pumping) and the nurse said that she only took 19ml and had to tube feed her the rest.  When I called this morning, the new day nurse, said that Adalyn only took about 20ml and was just not having it, and so she tube fed her the rest after trying for 15 minutes. She also told me that at 5am she only took about half her feed and had to get the rest tube fed.

Well, at 11am, we were here and she was up and screaming for her food. We decided to feed her using the regular nipple instead of the slow flow. We fed her, HER WHOLE BOTTLE, with a little bit of patience and looking at her cues.  And she once again drank HER WHOLE BOTTLE at 2pm, and again at 5pm.  We decided that from now on, DH or I would be here to feed her her bottles.  Perhaps it's because she is our daughter, or maybe she will only do it for us, but I find it interesting that we are able to get her to take the whole bottle and 3 different nurses the last 2 days have not.  Maybe it is because we are now using a regular flow nipple and she's not working as hard.

Whatever the case may be, it's a good idea for either DH or I to be here around the clock (we can do shifts, etc) to also get used to what it will be like when we're at home.  Right now she is asleep on DH's chest (she fusses when he tries to put her in her bed) and he's playing Words with Friends.  I'm on the sofa/bed thing, on the laptop, watching Law and Order on TNT.  So, it's pretty much how it will be at home.   I don't think that the nurses are being lazy or anything, but since it's not their child, I don't really think that they're going the extra mile and having that extra patience.  

Ok, sorry, vent over.  

AlwaysSunny925

Sorry - I know it's frustrating.  We went through something very similar with Aiden and it came to the point where we made sure we were there for *almost* every feed in order to get him home.  At a certain point the neos saw how dedicated we were and that we were capable of feeding him (because he would only take full bottles for us and one nurse who actually took the time with him) and they sent him home...even though he skipped one or two bottles the day before he was discharged.  I think you are doing the right thing by moving in.  I hope she gets to go home very soon.  Hang in there.  The end is the hardest part.

kaylaaimee

Yup, I really think it is an issue of the nurses having to stick to their schedule. I fought and fought and fought to get Scarlette on 2 hours feeds. I was like "listen, she gets HUNGRY and then she gets so worked up about it that by the time another hour passes to hit the 3 hours feed, she's exhausted from screaming" I told them, listen: I WILL DO IT. I would do it if I were home, I'm here all day, I'll do it. And it totally changed everything. She took every bottle and didn't need to be tube fed for the rest. She came home on night tube feeds for her weight so I had it a little easier in that I only had to be there all day and not all night like you, but I really hope you'll see lots of improvement too!

Honestly, I know it is so much easier to keep the babies on their schedule but not all babies are the same!

ashk7

So first off as weird as this may sound coming from someone you've never met, I thought of you and ms adalyn today, I was walking down to mia's room and glanced up at one of the name boards and there was a new little girl named adalyn! 

 Your post is EXACTALY what we are going through!!!! Actually we are on our way home from the hospital right now because of this! I called into see how her 6pm bottle went, normally I am there but had a ruff day and was trying to take a little break. Well the nurse said she "wasn't sure if I was coming in so she held off on the bottle and then tube fed her, without even trying" I was furious!!!!!  I was sobbing beating myself up for not being there and not giving her a far chance! This was after some of the same issues you mentioned happening in the last few days. DH snd I decided we are doing the same thing, one of us being there for every feed. We actually had one nurse say to me when I questioned her when she said Mia was "too tired" tell me that there is "no rush to get her home" Needless to say she will not be assigned to Mia ever again!! I am sorry you are going through this frustrating time but it's kinda nice to know others have had the same issues. I will be damned of a nurse keeps dd from being home with us!!!! Her drs have her discharge papers ready and car seat challenge wrote for. Its just the bottles we need to do to get the NG out. Good luck momma you are doing the right thing and have been such a wonderful advocate for adalyn throughout this whole process, I have followed your amazing story from the beginning and am amazed at how far you all have come!!!! Here's to our girls finishing their bottles and coming HOME!!!!! ??

vsalt31

Ugh sorry that you are going through this. It sounds like she'll be home soon. And if you can, why not stay all night? Ps- your nicu sounds like the ritz compared to mine. We had 4 hard a$$ chairs and white walls. Oh & a rocker that also kind of sucked (and we were at a major university teaching hospital).

shanlubey

Advocate 100%. I had to stay for five days to BF round the clock because the nurses would just tube him. Adalyn knows and loves her parents, for sure!

jennifer1w

Sorry to hear that . I am glad to hear she is eating well for you two. That is really awesome. Hope she is home with you soon!

Mrs. Alice

Oh that is frustrating!  I think we all at one point had to deal with something to that extent.  I remember being there way more near the very end.  I hope the regular flow nipples help her finish the bottles.  We always used to Dr. Brown's level 1 and while they were slow at it, they did finish bottles.  I hope her homecoming is just around the corner!  Those last few days and weeks drag on forever!

sroddy12

How frustrating   I remember when we were giving Chance his very first bottle, he was doing well and the nurse said after 5 minutes (literally), "okay are you guys done trying so we can put the rest down his tube?"  I think she got the clue when I gave her the glare of death and she didn't ask me that question ever again lol.  Really, his first time eating and you expect him to be done in 5 minutes?  Obviously tube feeding is quicker and easier for nurses but seriously, your job is to help the baby grow and develop!!

allieatlanta

The exact same thing happened to me when my son was in the hospital...it was so frustrating. Hang in there, you're in the final stretch!

dvwalborn

Oh, that stinks! I'm glad you and your husband are going to be there for her feeds so you can show those nurses what she can really do. You're so close to getting home ... hang in there!

JuliaJAG

This exact thing happened to us too, last week!! Jack was taking his bottles beautifullly for us. Then when I came in both Wednesday and Thursday morning, the day nurse told me that he had done terribly for the night nurse. 

This didn't make sense to me... the previous 3-4 bottles I'd given Jack, he'd downed them quickly and did PERFECTLY. What was going on that he was falling apart while I wasn't there?? The neo called a "patient care meeting" with herself, DH and me, Jack's nurse that day, the nutritionist, and the speech (feeding) therapist to figure out what to do. This was around the time Jack's hematocrit had plunged to 26 so they were thinking he might need a trasnfusion.

The meeting was okay... afterward Jack took a bottle perfectly for me yet again, but I was still so upset and confused that I bawled several times that day right there in the NICU (that hadn't happened since week 1!).  

THEN, the neo came in and told me they figured something out. The night nurse had been recording "0 PO feed, 20 minutes" for his feedings. The day nurse thought that meant he had taken 0 of his bottle. It was actually "O" for "organized," meaning he did beautifully, coordinating breathing well etc.  

GOOD GRIEF!!!! How can a NICU make a mistake like that?! They said the night nurse was new and was used to a different notation system, but for Pete's sake, wouldn't they be trained to be consistent? Because of a misunderstood notation, they had me thinking my son was falling apart and losing all the progress he had made with bottle feeding!!! Grrr! Sorry to vent on your vent, but they have no idea how detrimental things like this can be both to the baby and parents. You are totally doing the right thing to be there for all her feedings to make sure a lazy nurse doesn't short-change her. 

snoangel79

I would think they would 'want' to bottle feed her to get her out of there more quickly. Insurance doesn't obviously like to pay for babies that can bottle feed and regulate temp and are in an open crib. We found that out as the pedi was "pushing" us out the door at the end. More in concern for us as she's seen parents charged huge amounts of money if babies seemed well enough to go home and were not. I don't know why the heck a nurse would do this! Their job is to get that kid ready to go home... Do you know this nurse well? I would bring it up with her and ask why does it seem ok when you are feeding her but not ok when she tries...

lwmooney87

I know it's so frustrating! We dealt with the same issues when Reagan was in the NICU. I had a couple of really lazy nurses. One time I decided to come in for every single feeding for 24 hours. The nurse KNEW that but when I came in to feed her that morning, the nurse had already started feeding her! and she said "She's got 10 more minutes or it's going in her tube!" Really hateful. She also said to me "If you keep forcing her, she's never going to get it!" and I just broke down. She made me feel like i was force feeding my child.
It's so hard to know what to do. You want your baby home with you so bad but you don't want them to hate eating and get an oral aversion, so I backed off for a little. The next day, one of her nurses said she "pulled her own feeding tube out" and she just left it out to see how she did...she took all her feedings from then on and we went home a couple days later. She did so much better without the tube in her nose. I later found out that the nurse pulled the feeding tube and just said Reagan did it. lol I loved her!

In a nutshell, do what you feel is right for your baby to get her home!

Also, your accomodations sound great! We had to sit in hard chairs in a room full of other babies. There was a curtain for privacy but that's it. No TV or anything. It was hard to stay for hours...at least for DH. He got bored. But I stayed for hours at a time and pumped at her bedside. It sounds great where you are!

lilmejo

I know exactly how you feel, most of our time in the hospital with Ethan was trying to get him to eat and I remember the day before they put the tube in he was drinking his whole bottle and I came in the next day to a tube in his nose. I cried and cried. I couldn't understand why all the sudden this was necessary. I was told that during the night he was tired and drank less than half of his feedings. This went on several times, he would drink 3 bottles in a row and then over night the tube would be put to use again. Our theory was how is that helping him to learn if after 10 minutes you're just shoving it in a tube. But we tried to be at as many feedings as we could to make sure they were giving it their best shot in trying to bottle feed. I even tried having him latch on more despite their feelings that it tired him out and ended in a tube feeding. Eventually he made it through 24 hours of feeding and then his open air crib and then home, but those days of tube feeding and bottle feeding were the most frustrating for us. Even now Ethan is still a finicky eater with his bottle but hopefully soon your persistence will pay off and your LO will be home

lilmejo

Also forgot to mention to make sure they're all using the same nipple. I finally made a note and stuck it to the outside of his diaper drawer on which nipple to use becuse one nurse "preferred" the slow flow, one nurse preferred the nuk nipple and we found the red one worked best. All that changing of the nipple I think confused him and once we designated a nipple for everyone to use it seemed to help alot

PhDMomma

What you're doing makes sense.  I my own experience the nurses would sometimes wait too long to feed Will, and he would use all of his energy up crying and then fall asleep while eating.  Or he would 'look tired' and would get tubed.  Although I do feel like a great deal of it depends on the nursing staff.  It was one of the nurses who notice that after he finished his allotted 55mL that he was snacking on his hands (which he still does at almost 6 months actual) and that he might like a little  more.  She was the one that got him switch to on-demand feeds, where he decided that he really preferred 70mL every 4 hours....

 Good luck and hope that things get better

katie4253

I think this is part of NICU life.  The nurses think they are being helpful, and yes, some are lazy.  We had to give a lot of push-back to the doctors and nurses to assure that this happens.  Glad she is eating well for you!!!!

mmooki

Feeding was Claire's final issue as well.  It definitel depended on which nurse was assigned to her.  It didn't help that the nurse who was assigned to her was also assigned to another baby who was very needy and the nurses basically had to sit there and watch for his monitors to go off.  So I think sometimes, rather than letting her finish her bottle on her own, they would just tube it so they could go deal with the other baby.  Hopefully you being there will help Adalyn come home faster.  xoxo

haziedaze

We did this too, but it was that he nursed better than bottle fed, so I tried to be there for 5 feeds/day so he could just nurse. I also stayed for 24 hours to prove he would gain on nursing alone. I think this is a common story. Sounds like you are SO close to getting your girl home, congrats!

jlc071903

we went through this SAME thing with our girls...they would ONLY eat full feeds from my DH or I...it was so weird. They were like that their entire 1st year..they did get better with Grandparents and our Nanny, but it was insane that they were still like that. THANK god I was good with pumping b/c there is no way we could have enticed them to eat their full feeds off of the breast. I'll never forget our NP saying, "You know your babies best!"