Preemie Apnea / AOP

My daughter was born at 25 weeks 1 lb 8 oz and had the same problems. She was in the NICU for 100 days. Soon these episodes will be a thing in the past. Ask your doctors tons of questions so you can be comfortable with the care they want to perform. My daughter is now 2 yrs old and you couldn't tell that she was a micro preemie

Hang in there. The NICU experience is so difficult. I had twin girls born at 34 weeks. One had Apnea, but hers was not neuro, it was kinked neck. She tended to curl up in a ball when she slept and she cut off the airflow. We had to work at keeping her neck more straight when she slept and then she was fine. If they need to do the caffeine, then I say let them. Unfortuneately, the NICU makes you feel like you have no rights. Do what needs to be done to bring your baby home and then you can do your own schedule and love on her, etc. I know MANY families with preemies and the caffeine did work.

L.,

I know wxactly what youare going through. My son was born at 28 weeks and was in NICU at Arlington Memorial Hosp for 51 days. We dealt with the apnea and bradycardia as well. Daniel came home on montitors for both and was on medication for both for about 1 month after being at home. He only had a few episodes at home but the monitor he had to wear while sleeping alarmed and that was enough to get him going again. I am not familiar with 'caffeine treatments'. They did not do that for my son. I will tell you though, my son is now 19yrs old and has no problems at all. He weighed 3lbs 10 ozs at birth and today he towers over his mom at 6ft 4in. He made it through with no problems. And, as hard as it seems right now.......mom, you will come through this ok as well. These little ones are pretty tough, even though they appear to be very fragile laying there in the incubator/bed...they have a very strong will to live and they are fighters. Hang tough mom. Contact me if you need to talk or just want to know that you aren't alone.

K. Barrow
____@____.com

Hello L.,
I am an NICU nurse and have been for about 6.5 years. What your daughter is doing is extremely normal for any premature infant. Caffeine is a drug we use for all babies experiencing As/Bs. I will tell you that she will grow out of this eventually, but it is hard to know exactly how long it will take her. The length of treatment with caffeine varies depending on the kiddo also. Then after treatment they remain in the hospital for several days to make sure that they do not resume having apnea after the caffeine is stopped. As much as I know you are worried and want your precious baby home with you, try to be patient she will get it all figured out on her own time. Good luck and I hope this helped.

L.
i completely understand your story, my son was born at 32 weeks and spent 7 weeks in NICU! We did the caffine treatments and it worked well!!! He went home on a moniter which we had for several monthes at home.....i think that was harder b/c it didn't have a screen, it just beeped and i had no idea what his #'s were!! its tough, i know but when its all said and done, you'll look back and wonder how on earth you did it...its then you'll know that it was the Lord's strength that carried you!! you are free to contact me for anything, questions, an ear to listen..ANYTHING!!! my son is now almost 20 monthes and is still on his reflux meds b/c he had acid reflux when he ws born!!! Glad to hear of your babies progress!!! Keep praying over your daughter!! (btw, i was a 28 yer old first time mom!)
S.

Hi L.,

I have 7 year-old twin girls who were in NICU for four weeks when they were born. One of my girls has a heart condition. Outside of that, the bradycardia instances were the biggest concern for boht babies. For us to be able to take the girls home, we had to be trained on monitors. Each girl has a monitor which detected if they wre having a bradycardia episode. If you can, you should speak with the NICU doctor about having a monitor when she is ready to come home. It gave both my husband and I peace of mind because it would detect if either of them stopped breathing for more than 3 seconds.

You will get through it!

Hi L.. S. W here. Our first son was also 4 lbs and born at 29 1/2 wks gestation. He developed some heart issues right before we brought him home from the hospital, after being there a month. They gave him caffeine which helped but did not sovle the issue. They sent him home on a heart monitor which he was hooked up to 24 hrs a day. Not a big deal really. It was very portable. We had to be CPR certified before he could come home as well, just in case. I will pray that God's grace will be sufficient for you to make it through these days of uncertainty

Both my girls were born in the 34th week and in NICU. My youngest did the same thing. (She was at Presby Plano) It was tough because I wanted her home but we were scared when we got her home it would happen and we wouldn't know it. The doctors assured us if she could go 5 days without a Brady she could come home and they wouldn't send home any monitors. It's so hard to be patient, but try to use this time to rest for when she comes home. It will be worth the wait. Congrats! I was a first time mom at 30 too. It's awesome!

L.: I was a foster mom to twin preemie girls who came to us on apnea monitors and oxygen. And yes, it was scary. At the time, I had never had children so it was very overwhelming. They were born 13 weeks early and the littlest one was in the NICU 3 months. We got her (from the hospital) when she was 3 months old. The bradycardia events were scary but she did fine. Talk to the doctors, ask for re-training on the equipment, and what to do when the alarm goes off. I'm assuming you will go home with the apnea monitor. If you want to talk more, let me know. Good luck. I will pray for you. I was overwhelmed when this happened to me.

My son was born in Jan. 2001, at 31 weeks. He stayed in the NICU for 4 weeks to the day. His last week there, he was having bradycardia/apnea issues and they told me he couldn't go home until he stopped. They discovered that they happened around feeding times, so they did a GI scan and found that he had reflux, as his sphincter wasn't developed enough to close off after his food got in his tummy. So, they put him on zantac and reglan (one for reflux and one to empty his tummy quicker). They watched him for a few days on the medication, and he did better, but still had a few bradies/apnea episodes. They let us take him home at the end of the week, but we had to take an apnea monitor with us. We roomed in the night before, so we could be "trained" to wake him every 3 hours for meds. and food and how to work the monitor. He was on the monitor at home for about 1 1/2 months then was fine. He was on zantac until he was about 8 months or so. He is now almost 8 and completely healthy. I have much respect for the NICU doctors and nurses. Without them who knows what would have happened with our little guy. I hope that I've been able to encourage you. I remember what it was like to have a preemie and no one to talk to who had been there. Best of luck to you.

My firstborn had this and took the caffeine for a few months, and there were no problems.

Congratulations!

Our first daughter was born at around 30-32 weeks and was in the NICU for 65 days. My friends gave me a number of books on premies and of course I read them carefully. It was nice to be informed, but we found that pretty much all you can do is trust the doctors. Our daughter went through a lot of ups and downs and I did a lot of praying.
She is now a beautiful healthy 15 year old with no problems that we can tell from the premature birth.
I know that this is and will be a scarey time for you and that there is nothing I could say that will make it easier, but hang in there and she will be older,stubborn and willful, and trying your nerves. That fight is what gets them through it.
I'll be praying for you and your family.

our son Daniel was born at 30 weeks and weighed 2 lbs 7 oz and was in the NICU for 6 weeks. They gave him the caffeine treatment and he did not have any abc's after that. The caffeine seemed to have done the trick and he just turned 6 yesterday and does not get "crazy" with too much caffeine like I have seen some kids, not sure if this is because they had to treat him with it or if it is just because he is our kid, kwim? :) Daniel came home on the heart monitor which at first was scary because I was home with him by myself but after a while I got used to what my DH called the boat anchor! :) He never had an "official" alarm, the alarm always went off, but never when he was asleep, just when he was awake and crying, and usually because the leads came loose and moved. I don't know how close you are to his hospital, but I was blessed to be able to be up there with him every single day, I learned how to hold him, bath him, change him all with the watchful eye of the NICU nurses, and even got to the point that a new nurse was told by a veteran one to "oh, sit back down, that's just the Acosta's, they know what to do...."....it was nice to know I had gotten the hang of everything before coming home with him, because it was really scary, having such a tiny little man for our first child. Preemie clothes were hard to find so he spent most of his days in the NICU in a t-shirt and a too big diaper!!!! :) Build A Bear clothes would have been perfect for him. He has now caught up with his Kindergarden class and we are very lucky and doubely blessed that he has been so healthy. Don't be afraid to ask questions, make sure if he is healthy enough to hold him daily if you can, take the CPR class if the hospital offers one, and don't ever hesitate to ask his nurses questions, they are there with him for hours on end so they get to know their little charges very well. Many hugs, blessing and prayers to you and your little one. PM me if you ever need someone to talk to..... but most importantly, don't forget about yourself. Hugs, G. A

Hi, L.!

Didn't have this.However, I did have a preemie (35 weeker) with issues who is doing GREAT now (he's 5). He was 4 pounds when he was born, too.

It's so tough to have your little one in the NICU...not sure which hospital you are in...but the very best advice I can give you is this: Ask lots and lots of questions and be an advocate for your child. Don't let them intimidate you into making decisions that don't feel right BUT take what they say into account as well. Don't be afraid to ask for a second opinion if you need one.

Look at each situation and weigh the pros and cons. Are there potential side-effects to the treatment? Do the pros outweigh the cons? Don't just assume that she will grow out of it. Having her home and having apnea is scary. From what I have read about the caffeine treatment it is safe and non-invasive and reduces the need for mechanical intervention. Apnea can affect the brain (and the small gaps in breathing can cause mild brain damage)so the quicker it is resolved the better off she will be and the sooner she will be home.

No one can make this decision for you. Go with your gut.
Good luck!

Stand strong and you demand how you want the treatment to go. Doctors and hospitals try to bulldoze parents and tell them what "treatment" they need, when most of the time the treatment is actually more harmful than the actual condition. I wouldn't let them do anything more until I've researched the specific thing they're talking about. Your baby will grow and develop naturally and it's not likely that these caffeine treatments are going to be of any benefit a year from now, and maybe even harmful now. Research and DEMAND your will to be done. Don't just agree with what they say and let them do invasive things to your precious baby. Follow the money trail!

My now 2 1/2 year old was born at 30 weeks. He spent a total of 70 days in the NICU at Cook's. He had lots of "A's and B's" (bradycardias/apnea episodes). He did receive caffeine treatments and the episodes improved but they did not stop until he grew out of them himself. He did not come home on any monitors. Although, he does still need an occasional nebulizer breathing treatment when he gets a cold. We have been told this still not uncommon for former preemies.
The best support that we found when he was in the NI was the parents of another baby whose bed was next to our son's. We still keep in contact with them.
Good luck and prayers that she comes home soon.

First, congratulations and my prayers are with you. Our son was born at 24 weeks, so I do understand NICU terror.

The caffeine treatments are not bad at all. Most of the kids respond well. Do what you feel is best, of course, but this was oour experience.

Good luck!
R.

I just want to tell you congratulations on your new baby girl. I hope she is doing better soon. I don't have any advice, but my now 10 year old twin nephews were born at 34 weeks and one had to be on the apnea monitor for about 6 months. They are healthy and happy now!

Hey L.,

My little one was born at 25 weeks and had this problem, the caffine won't hurt her. They did this for my little one for a little while. They even sent my little one home on Oxygen and an apnea monitor. Is your little one still on oxygen? She will grow out of it, but the caffeine will help her grow out of it faster. :)

Keep being positive. ((((((HUGS)))))) I know its hard with your little one in the hospital, but she will be ok.

Mine was 1lb 6oz and in the NICU for 30 days. If you need anyone to talk to, please e-mail me.

First of all... CONGRATULATIONS on your little girl. I was blessed to deliver a healthy 40 weeks old baby girl myself, but I work in the NICU for a good number of years and caffeine is a very common medication used for apneas. It is a stimulant (like your little starbucks fix), except it is in a syringe and a much smaller dose. It just keeps the babies slightly more aroused which follows a better breathing pattern. They usually grow out of A's and B's by the time they go home (around due date or so). But remember - if you have any concerns before you leave the place - it never hurts to ask to place the baby on the monitor for the first few months of being home. WEll.... enjoy your little bundle and have Merry Christmas. If you have any questions - let me know, I will be more than happy to answer them. Oh, one more thing, never fear to ask questions in the NICU (even if you think it is not a good question, you sound concerned and you have the right to be!). Lilla

Bless you and your little one. My granddaughter was born at 25 weeks. She to had the same issue which is normal. They said she would gradually succum this as time would pass. Which she did. She was in the icu for 2 months before being released. Which the breathing episodes is one reason they would not release her. She is now fine and very loud and very active. What theyn lack in size they sure make up in erergy she's like a little monkey. Good luck mom prayer are with you.

I just wanted to give you a BIG HUG! Most preemies dont go home until close to their due-date, so give her some time. She will get it down and be home with you soon. We did caffeine, among a million other things.

My little man was born at 24wks and he is doing great, he will be 4 in March. www.babiesonline.com/babies/a/alexdaniel

I know this is hard, but hang in there and she will be home with you soon!

C.

Hi, L.!

My youngest daughter was also born early, at 35 weeks. She spent 14 days in NICU at Presby Dallas. She also had bradycardia/apnea. The doctors never recommended caffeine, so perhaps her breathing problems weren't as severe. They did continue for awhile, and I remember being very nervous about bringing her home (although also anxious to finally get her home!). I don't have much advice, but I do remember that her breathing issues occurred mostly when taking the bottle (I wasn't able to breastfeed, unfortunately). I had to watch her very carefully as she took her bottle. Because I'm a lefty, I held her in the same position each time I fed her - I had my routine down on how to hold and watch for the breathing problems. I never realized I was creating another problem - her head developed a deformity from lying on my lap the same way each time! (I had to rest her on my leg in order to watch her breathing as she drank.) She wound up wearing the little helmet for misshapen heads...it wasn't the most effective thing and there is still an indentation, but with hair, it's not noticeable. I'm telling you this only to caution you on that one thing!

I will also say that my daughter had to have physical therapy because of stiffness...she is now developmentally considered "caught up" in all regards, but we'll have another check-up with a developmental pediatrician before she begins kindergarten. We just feel blessed that she is healthy and has no continuing issues. She weighed 4 lbs 10 oz at birth, so she was a big "preemie" (not a true preemie) and our hearts went out to all the smaller ones in NICU. But it is truly amazing how well most of them do!

God bless you both - hang in there and pray for wisdom in your decisions!