The problem is she stops breathing fairly often due to choking on milk/snot. Her body straightens out like a stiff board with her head arched backwards. Her face turns red and contorts into a scream face. I grab her and pat her on the back begging her to breath and trying to convince her to use her mouth. The nurse told me too much aspiration inflames the sinuses further and I don't want it even more difficult for her to breathe. Sometimes she calms down and looks up at me trusting me completely and things work out but not often. The usual is me grabbing the aspirator and sucking out her nose for any milk or boogers and then I get the beautiful scream of terror which I am grateful for.
This happens right after she eats or 1 hour. She eats every 1-3 hours. This behavior started in NICU where they blew me off. I am a first time Mom with no help and my family has passed on. Imagine the first time it happened in NICU and it was just me. I was terrified. She use to spew milk out of her nose and now it's only a little out of her nose and sometimes vomit. I can deal with spit up but not the lack of breathing.
I called the nurse who gave me some advice and I've told her pediatrition a few times and they chalk it up to her preemie-ness and that she will grow out of it. She is on neosure preemie formula as the lack of being able to be with her dried me up though I pumped like hell and I feel guilty about that also.
I can't lose her. She's everything to me. I may not have that bond since she was wisked away to strangers first but it I were to lose her I'd be more than devastated. I'm not sure how much more stress I can take. What if I fall asleep and she can't cry or I don't sense her? I so fear she will be a SIDs baby all because I stupidly fell asleep. I am in total fear for her.
I have an a/c, an air purifier, a cool mist humidifer next to her pack n play. Despite all the have nothing in your crib you just can't do that with a preemie. I'm just now getting it where she doesn't panic not being swaddled on her side. She has a body wedge with a blanket under her to put her at an angle. Now that she has gained weight she has been sliding out of it putting her at risk with the wedges. Plus the angle I guess isn't severe enough b/c it doesn't help THAT much. After feeding her I hold her for an hour upright to keep the milk down but I get so tired I am starting to fall asleep.
I want to enjoy these prescious moments as it took me a decade to conceive her but all I can think of is getting her through the sids 11 month milestone but then I think of all the other dangers and I don't know if I can ever stop being scared to death.
The only other thing the nurse suggested was salt water drops but I'm scared to drop anything up her nose.. you can die in a teaspoon of water etc. I also give a pacifier to encourage the continueing swallowing motion to push food down further after meals a good amount of the time.
I try not to feed her till full and she gets mad. Surprising because she just about died. She throws it up and of course is hungry again but I hate feeding her again after that.
I know she was born extremely intelligent. She had so many expressions and thoughts wandering through her head. I am so worried all this junk with her not breathing is causing damage to her brain. Does anyone know anything about this? Her expressions have dropped dramatically since her due date.
I thought things would be better as soon as she was due and in a way they are.. less milk through the nose.
She has another pedi appoint this friday and I again will bring it up. I hate going as last time I got the worst cold and somehow she hasn't caught it. I'm the only one who cares for her really. I ONLY went to the pedi and got sick.
I'm a little exacerbated with people who have "normal" kids and think nothing is a big deal and let her roll around with germs but I don't think they have a clue what it is to have a preemie and then everyone else says it's normal. This can't be normal else I'd be hearing similar stories.
I did get a movement monitor but she flails when she can't breathe and by the time it went off she'd already be gone so it's not a great comfort. I spend all my day and night resting my fingers on her to feel her belly move in and out.
I already suffer regular and ppd. Is this really normal? I CAN'T lose her. I cry all the time worrying about her. I try to stay calm but as soon as the issue passes I cry.
I haven't timed it but in reality I guess she can't breathe for only a few seconds but when she's in my arms it feels like an eternity.
She's put on a lot of weight with the neosure and since i couldn't breastfeed I want her on a special preemie formula so I don't want to change formulas really. She is not "bigger" but her belly is getting rounder and she's pushing I bet 8 pounds now! She had dropped to 4 in NICU. Never having siblings or friend's kids around I don't even know if this is normal though but by the shocked look the nurses and doctor's give me I'm thinking it's really good.
Sorry for the rambling. Needed to vent also, anyway..
Can anyone relate?
So, why didn't they send you home on an apnea monitor? Can you request one? Ours was paid for by insurance and it is sort of a pain, but at least I can leave her sleep without feeling like I need to be near her every second. And when she eats, it lets me know when she is about to do her thing and I can pull her off the boob and start stimulating her. Sometimes she also refluxes in her sleep and the monitor goes off, so its helpful for me to have it for that too. It may give you some peace of mind. They also talked about thickening her breastmilk bottle supplement to keep it down and also to slow her eating. She also has a slow-flow nipple.
Hang in there!
my two preemies do have it, but not to the extent of not breathing like in my eldest. it is so, so scary, especially as a first time mum. hugs to you.
spread a lot of love
Hello! I wish I had seen this thread a few days ago. I registered just so that I could post to your thread...:-)
I am not a writer and I have a hard time condensing my thoughts into something that isn't random, so I hope that you can follow me! I must add a disclaimer: I tend to sound pushy at times, and I certainly don't mean to! I just want to help, so please know that my intentions are honest!
Our daughter was born 8 weeks early, so we went through some similar things. I know how terrifying it is to witness your baby stop breathing at every feeding - it makes feedings absolutely dreadful. In the NICU, I could see it coming 5-10 seconds before the monitors even showed anything was wrong. And our NICU nurses were very supportive of my "delicate condition" (read: panic!) but we also understood that this is something that is par for the course for them.
They see this on a daily basis and they KNOW these kids get better. They understand that a parent is coming from a different perspective, but keep in mind that they have seen the process run its course many times...so the fear that we have as parents has been put into an experience-related perspective for them.
I was terrified to bring our daughter home from the NICU because of the apnea related to feeding. I had a major meltdown. I probably would have left her there indefinitely because I knew that if anything happened to her, someone could help! I did not have that confidence in myself...I was so scared.
It is amazing how with every meal my hopes would rise and every time my hopes were dashed because she'd do the exact same thing you are describing. What I can tell you that this typically subsides slowly and before you know it, she's eating like a champ! Now, what is the quickest path to getting there?
I guess you didn't really ask for suggestions but I am going to offer them up anyway!
I suggest finding a low flow breastfeeding style nipple and/or bottle system. It might be advantageous to buy several different styles. There are many out there if you google "bottles like breast". Buy a few, add some tea (easier to taste/gauge flow than water) to them and try it out yourself. You are looking for the slowest flow.
There are a few reasons for this. First, you don't want to "flood" your baby. The NICU bottles are designed to get food in your baby fast. Why? These babies typically fatigue easily and the ultimate goal is to get them discharged. In order to discharge, they must meet certain eating guidelines. Those guidelines are measured in volume.
Feeding goals, NICU pediatricians and nurses: eating efficiency leading to weight gain. Total ounces per day leading to discharge!
Feeding goals, parents post-NICU: steady eating leading to oral strength and weight gain. Eating stamina.
Our hospital sent us home on their feeding system, and we soon realized that the flow rate and nipple shapes weren't compatible with providing our daughter with strength, stamina and less apnea episodes. I am not saying that the hospital was bad - I am just saying that their goals were different!
We fought with store brand style bottles once we started down our own path. They have several disadvantages, including long nipples, contoured nipples, and fast flow (even for the slow ones).
Long nipples deposit a lot of milk at the back of the throat and most do it quickly. Hence, gagging, choking and apnea problems. In addition, these nipples require little to no oral effort to use.
A shorter, breastfeeding style nipple is closer to the front of the mouth and the flow tends to be slower. The result is that the baby has to be resourceful to eat! These nipples must be actively sucked, which requires use of the lips, tongue, cheeks and palette.
Weak babies do get fatigued by this new system initially because they are gradually building up strength for eating. And this is wonderful! Through eating smaller portions, slower and more often, the risk of choking and "freezing" is reduced! Of course it still happens, as oral control is a learning process for the baby.
Another benefit is that the baby has to work to be satiated. If she eats slower, it takes her longer to fill up. The longer it takes her to fill up, the more time the gastrocolic reflex has to kick in and get things moving. And the less back up there is in the system, the less reflux-related discomfort there will be.
Just a few other comments! :-)
Our baby is 6 months old and she still needs to be swaddled to sleep. That's not too unusual for preemies! And term babies usually love to be swaddled until 4-5 months of age. I'd suggest reading "The Happiest Baby" by Dr. Harvey Karp.
Bonding: I know exactly what you mean! But trust me, that intense bonding comes with time. Not as fast as I have heard the non-NICU moms talk about, but trust me in that it DOES COME!
I'd also suggest looking into lots of kangaroo time, and once she gets past the apnea, wearing her in a sling. If you'd like to wear her upright, a Maya Wrap is a good option and it seems to be more compatible with apnea because of the position of the baby's head.
I can vouch that wearing your baby gives one a better sense of calm because the she is always with you, right up against your chest. If changes in breathing pattern start, you are right there and aware of it instantly! Not to mention that it works wonders for bonding...for her and for you!
Pumping + Breastmilk: They say that stress can make milk go bye-bye. And you have been through a lot! If you really want to put her on EBM, there are ways to do it. First, your doc can prescribe it and you can source it via a milk bank. I think some insurance plans do cover it. You can also go online to "milk share" to solicit milk donations directly from other moms. Just google search and the forum will come up. I think you have to register.
BM might be beneficial for the reflux, as formula requires more effort to digest.
Falling asleep and SIDS worries: You can "test drive" your daughter to find out if you really should be worried! Of course, this is a personal decision and its not something you should undertake if you are all at uncomfortable.
I can tell you that I, too, was super paranoid - literally to the point that I could not sleep. So we ended up experimenting with our daughter's reactions to certain things. Of course, she was absolutely supervised during these times, and we did try to minimize the stress to her as much as possible. (hopefully I don't get flamed here)
We laid a blanket on her face to see if she'd "tell" us about it in case of an accident. Another time, I let her roll gently backwards in my arms as if I had accidentally fallen asleep. A different day, I even placed her on her side to sleep and allowed her to roll face first into the mattress.
And we did some other things that could happen in real life...the point being, I wanted to see if she would react so that I knew for SURE whether or not she would ALERT us if something was wrong. I hope no one faults us for testing our little girl - we had to do it for our sanity. I was not sleeping because I was so worried that she would be hurt and unable to communicate with us. What I learned in the process is that she DID have a way of letting us know that she needed assistance!
OK, I have to go attend to a dirty diaper! Please know that things do get easier as time passes. I know that it all seems overwhelming now, but there are little steps you can take to reassure yourself along the way. You can do it! You have come this far and this little girl has so much to offer you on your journey together...keep up the good work!
And if it helps, it doesn't happen to every baby or even every preemie. My next child was a 33weeker and she had no issues with eating or apnea.
Wow, this is almost comforting to see this thread. My daughter is 5 months old and this has been happening since she was born (which was full term). Just as babygirlie said, she stiffens up, her head arches back, she stops breathing and formula will come out of her nose, no matter how long it's been since she's eaten last. The good thing is, it doesn't happen as frequently (it used to happen every day, at LEAST once a day in the beginning). After several calls to her doctor, switching her formula to Enfamil Gentle Ease and gas drops, nothing seemed to help her. He told me to have her sleep in her car seat. I would keep her in her car seat and sleep on the floor next to her with my hand on her chest, since these "episodes" are silent. I never slept in the beginning. I, like everyone else here, am scared to death, as much as the doctor says it would clear on it's own. Nobody seems to understand unless they are going, or have gone through this themselves or have witnessed my daughter doing this. It is so frustrating. She gets so upset after this happens, I'm afraid the anxiety and fear she is experiencing will have a long lasting effect on her.
I see all of you, with the same exact problems I am dealing with, but nobody has any real answers. I wish someone could post something to ease our minds. I am hoping this is something they will just grow out of.
My now 6 yr old preemie was born at 27 weeks, and we dealt with reflux too. When she was flat on her back, the reflux would happen and she would sometimes stop breathing to protect her airway, and then forget to breathe again. She had a couple of episodes while still on the monitor at the hospital (the morning she was to be discharged from the NICU) so they put her on meds, and we brought her home a few days later, still paranoid it would happen again. She was about a week shy of her due date at that point. My husband and I slept in shifts so we could watch her to make sure she was breathing, because the only visible sign we could see when it happened was that her forehead would turn a subtle ashy complexion. She stopped breathing twice at home when we laid her down to change her diaper after a nap, and we went back to our local children's hospital, where she was evaluated, they did a swallow study with formula that was colored with dye to watch the liquids come back up, and see if she was aspirating into her lungs. We worked with a speech therapist that specialized in feeding in the hospital to find the right combination for her, which ended up being thickening the formula with rice cereal and the right type of nipple that would allow the thickened formula through at a slow rate that she could handle. Then we had support through the outpatient clinic at the hospital.
When we took her home we elevated her mattress with a foam wedge, and I remember putting a buckwheat neck pillow around her feet so that she wouldn't slide to the end of the crib. Kept her upright for 30 mins after each feeding, whether in our arms or sitting up in her swing. Pausing halfway through a feeding to burp her so that the gas wouldn't build with a full bottle behind it.
I would strongly suggest getting a referral to a speech therapist for feeding and evaluated for reflux meds. Eventually she grew out of it, the physical therapist told us that they usually do around 9 months once their core muscles strengthen and start eating more solids, and that helps to strengthen the gastric flap too that is supposed to keep food down. Once she was old enough to start holding her head up I put more emphasis on tummy time to give her the opportunity to strengthen those muscles.
Listen to your instincts, and I hope this gives you an idea which type of professionals can help!