With this, the PT determined that Ellie needs 100% attention from the person feeding her so as to have the feeder assist her in remembering to breath so that she doesn't have a spell. This will most likely mean that her nurses will need to have another nurse cover for them while they are feeding her since they can't have any distractions while she's eating. And when Kit or I feed her we need to give her the same undivided attention. If you look away even for a minute, she can start into a spell. She especially goes into them if the person feeding her looks away and talks with someone. As I mentioned, she also has trouble if she's trying to eat and poop or pass gas at the same time so we'll take the bottle out of she starts to grunt and get red in the face (her cues that she's doing one of the two).
The PT only stayed for about half the feeding, including watching me for a couple of minutes. She said I was doing a great job and was very attentive and understanding of Ellie's cues (hurray!). After the PT left, I finished feeding Ellie and she didn't have a single spell!!! She did start to stop breathing a couple of times, but I was able to either tip the bottle or take it out to keep her from stopping for too long.
So we have a little high maintenance eater. They can't predict how long it will take her to grow out of this; however, we can take her home with it once we get it a bit more under control.
Here's a picture of the little cutie from last night. Dad was getting her dressed while I took this; hence, the deer in headlights look from Ellie.
12 comments:
wonder if the high maintenance trait will carry over into other things.... =). Sounds like you have great people helping you out.
It's hard when something that should be so simple as giving your baby a bottle can be so stressful. Cadence didn't really have too many spells that I remember, but she I think only took one or two complete bottles from me in the NICU up until the day before she went home(which really made me nervous as the nurses always had much better success than I did and I was nervous if I would ever be able to get enough food down her on my own). And she was a terrible burper too. OMG, my hubby and I would spend so long trying to burp her that in the middle of the night we would find ourselves dozing off in the middle of trying to burp her and then have to guess if she had burped or not. :) Hopefully Ellie will outgrow this soon as she gets a little older and a little more developed. Way to go on being able to read your daughter's cue's well and being an excellent feeder! Have you tried nursing lately?
Like I have said before this brings but so many memories. Stetson was one of those eaters. Of course I would have loved for my husband to have gotten up with him in the middle of the night but I was so scared that he wouldn't pay enough attention to him that I would just sit and watch him feed Stetson. He did come home a monitor and oxygen. And there were plenty of times that he would get choked during a feeding at night and the monitor would sound and my husband would jump up like we were having a fire. I am praying for you and Kit and of course Elise.
April
Hi, you don't know me but I have been following your blog for a little while. Your journey with your daughter is very similar to ours with our daughter. She was born at 27 weeks and thank God has had no long term problems due to being so premature.
I just had to stop in and leave a comment because we went through the exact same feeding problems. In fact, even after we brought her home we had several spells, and some were pretty bad. I'll warn you that there is nothing scarier than sitting at home and having your baby stop breathing. There are no doctors no nurses and no monitors. There was once or twice we literally had the phone in our hands getting ready to call 911 when she would finally come out of it.
Our pediatrition finally ordered a swallow study and it turned out that she was actually aspirating some of her milk. They put her on a thickener and it never happened again! If they haven't done one on your daughter already, you may want to at least ask about it. I wish we had known before leaving the NICU.
She did grow out of it by the time she was about 5 months because that is when she started nursing full time and she still never had a spell.
I just wanted to let you know that your not alone! Just remember everything they teach you and you'll be fine.
If you ever want to talk to a mom who has been there please feel free to contact me. Or you can read about my daughter's story on my blog. Whatever you feel comfortable with. :)
~Sassy
http://dancingintherain-sassy.blogspot.com/
P.S. Also, if no one has told you about BCMH (Bureau for Children With Medical Handicaps) you should call your local health dept. and get info. If your baby qualifies (and I think the majority of preemies do) then they will help pay for medical expenses. Also, Help Me Grow will help with any therapy she might need when she comes home!
Please don't think I am SO naive that I would think someone hasn't already probably mentioned this to you but... Our daughter had a "sucking" problem (which I know is COMPLETELY different than a breathing problem) when she was born... Our doctor suggested NUK bottles becaue of the way the nipple sits in her mouth. It rests on the top of the mouth. In the event you haven't heard of this... it's worth a try. By the way, I think your daughter is TOO cute! Girls are SO much fun!
she's getting so big!!!!
Hey Em,
I'm really glad you guys are figuring out what to watch for, Ellie really scared me on Tuesday. It was quite obvious to me that you are doing a great job with her, just watching how you handled the situation. If you need a ride in the future I can just keep to my knitting (without the small talk)so you can just focus on feeding her. :)I hope this week will calm down a bit for you I know it's been an emotional roller coaster. Love, Ya!
Wow! I'm glad this is something she'll grow out of! It seems so scary but it sounds like you're doing such a good job of staying calm for your baby. She's a lucky girl!
She is soooo precious! I'm glad that you were able to get alittle direction today and that you're alittle more comfortable. Hope these spells end quickly...I know you do too!!!
Emily, that physical therapist came to watch me feed Anthony yesterday and he did worse than he ever did before!!!
yep, i remember those feeding times being scary with the spells! I remember the first time I saw Ellie turn blue...not fun!
She also had a feeding consult, and she actually still to this day sometimes likes to be fed sidelying....i think she can control the flow better as it pools in her cheek.
OH MY GOSH!! She looks SO adorable!!! She sure is growing! Praise the Lord!
Blessings,
kendra
(amanda's little sister)
Post a Comment