Preemie Resources

Here are some articles I wrote for another blog. Unfortunately I didn't save all of them and left without transfering copies but I will find their rough drafts on my other computer and add them. As a mom to an older preemie and an awareness advocate I still have a lot of people who come to me and I think the articles I either wrote or compiled are still relevant and helpful.

My friend just had a preemie! How can I help?


I compiled and wrote this article while writing for The Preemie Mom Blog but have since parted ways. I think it's important, and since I wrote it, it will be here.

If you have a friend that has recently had a preemie, here are some suggestions on things that would be helpful while the baby is in the NICU and after discharge.

What can I do to help?

When someone you care about has a premature baby it’s natural to want to help out. Often their baby came unexpectedly so the new parents may not know how to answer that question. Chances are they are feeling overwhelmed and scared. Some  NICU moms  gathered together to make this list of ideas and suggestions to give you direction.

 Perhaps you are the new preemie mom – here are some ideas for when people ask. During this time you should be concentrating on your LO and your SO (and don’t forget yourself!). When someone wants to help, allow them. You won’t regret it!

Easy Ways to Help:   
  •  Drop off home cooked meals. Have the family leave a cooler on the porch and put food inside so they don't have to cook or entertain guests. 
  •  Prepare meals that can be kept in the freezer and used as needed
  • Walk pets, clean house, do laundry, tend to their garden/yard. 
  •  Provide rides to the hospital if mom cannot drive (after a c-section) or they rely on public transportation.
  • Sit with the family if they want company. Focus on your friend and don’t ask to hold their baby. They will offer you a turn if they feel comfortable.
  • Be the contact person so they don't have to call everyone with news/updates.
  • Pick up the following baby items: blankets, preemie/newborn clothes (no zippers or feet, these get in the way of medical equipment), hats, and socks. Also "normal" baby items like onesie month stickers that help keep NICU memories.
  • Ask about what kind of things the parents want in the NICU. Once cleared with their doctors/nurses most parents  bring in clothes and bedding, decorate the crib with pictures, leave a Boppy, or add other personal touches to their child's space.
  •   Some ideas for mom: nice water bottle, cooler bag for milk (Pack-it brand is excellent), good hand lotion, sanitizer, "to go" snacks, hands free pumping bra, nursing cover so she doesn’t have to rely on screens. Gift card for a mani, pedi or massage when Mom is ready. Haircuts are good ideas, too! We fall apart in there. Notebook/journal is great to keep track of time and events. “Mom’s One Line A Day” is a lovely gift and available on Amazon)
  • Gift cards for miscellaneous places (like Target or BRU), gas cards, a restaurant near the hospital, or parking.
  • Provide magazines to read for parents who sit in the NICU all day. 
  •  Help mom pick out clothes that are easy to kangaroo in. It’s terrible to show up to see your LO only to discover your shirt is too tight to slip LO against your skin.
  • You don’t have to be local to help! One preemie mom said she got a great care package from some friends when they were in the NICU.  It included gift cards to fast food restaurants, snacks, oatmeal (to help with milk supply), hand sanitizer wipes, playing cards, magazines, a blanket, some preemie clothes, and some little signs to decorate the NICU room.  


Things to Say and Things to NOT Say:
  • Instead of, "Oh, he's so tiny!" try "Oh, what a beautiful baby!" Preemie parents are well aware of how small their babies are but still need to hear how precious their little ones are. Compliment them on their adorable babies! Tell them how great they look in all those FB pictures. If you don’t see many give some gentle encouragement. Maybe she’s worried she’ll frighten others.
  • "So does this mean he'll have health problems later on?" Preemie parents are constantly worried about current and future health problems. No one, not even the doctors can answer questions like this so they just bring stress to an already stressful situation.
  • When a preemie mom tells you about her baby's success, rejoice with her and don't compare her baby to a full term baby even if it sounds minor to you. One mom shared that when she was bragging to her mom about how Lillian took 15mL from a bottle, her mother replied that was not much. Heartbreaking! We celebrate every gram, every mL, and every little thing. 
  • If you receive a mass email, read a public post or blog entry, or see a status, don't immediately call to talk. It doesn’t matter if the news is good or bad, that one update took a lot of emotional energy. By all means respond if you’d like, but in a non-rushed way (email, comment on the blog, or just text asking to call when I feel up to it). Feel out the situation – while preemie moms need our friends and family more than ever, it’s an emotional rollercoaster. Expect mood swings.
  • "This place is scary/creepy/etc"  The NICU is intimidating, full of noises and sights that you are probably not used to. Tune it all out or ask the parents to explain the sounds to you.
  • "What's going on with that baby over there?" In many NICUs you will be able to see other sick babies when you visit. Please respect that family's privacy but not asking about or staring at their baby. 
  • "When can I come visit you and bring my 2 germy toddlers who are sick? I really want to see the baby!"  Instead say, "I'd love to visit when you are up for it. I'll be sure to leave my kids at home and make sure my hands are washed." Preemie parents are cautious about germs for a good reason. What seems like a small cold to you could make our fragile babies very sick. This continues to be true after the baby comes home from the hospital. 
  • Don't ask when you'll get to hold the baby. Don't say "I don't feel like I am close to your baby because I didn't get to hold them." Chance are the preemie mom didn't get to hold her baby for days or even weeks. She just wants to know you love her baby. She will offer you a turn to hold the baby when she is ready.
  •  "I'm so afraid XXX will happen to your baby" OR "This is so hard for me" Whatever your fears, whatever your stress, do not share it with the preemie's parents. They have much more fear and stress than you can imagine and your fears will not comfort them.
  • Weeks later don't admit that you were worried their baby was going to have the "alien preemie look" and how glad you were they wound up looking "normal."  
  • Tell us about YOU – we want to be distracted!
  • However not all moms do. Again, tread lightly and assess her mood. One mom wrote, “Don’t assume since my baby is in the NICU that means I want to get out and have coffee and girl time. All I want to do is be with my baby. Offer to bring coffee to me, but don't think this is a great time to catch up after weeks of bedrest since I "don't have to worry about bringing the baby out." 
  • Remember that it's not just Mom going through this, it's Dad too. Please, please remember dad!  Volunteer to take on some of his "man tasks" like mowing the lawn; he’s scared and overwhelmed, too.


We hope this helps you help the preemie parents in your life! The NICU is an abyss. It’s hard. It’s tiring. It will end. It doesn’t feel like it will, but it does, and there will even have some fond memories. But during the NICU stay, preemie parents need to feel supported. Even if that means giving them space to deal with their emotions. Thank you for being the kind of friend or family member who searches for pages like this to find out the very best ways to help!

Love,

The Preemie Moms

Thursday, December 29, 2011

ATTACHMENT PARENTING WHILE MILES AWAY BY STEPHANIE

When I had my son at the end of 30 weeks it was pretty clear that he’d be living at the hospital for a while. I wouldn’t get to feel his skin against mine right away and we certainly wouldn’t be able to breastfeed during his first hour of life.

What happens when a neonatal hurricane whisks your baby out of an OR and it is hours before you know what he looks like? Then, on top of that, it might be days or even weeks until you can touch your little one.

How can you be an attached parent when you’re separate?

Parenting a preemie was the section you probably skipped over when reading about having your baby. I know I did. Those chapters have come to haunt me as well as any other section of a book that references what to do just after birth.

There are things you can do while living separately to aid in AP. We practiced kangaroo care every day to get as much skin to skin contact as possible. I slept with his hats or carried them around so he’d have my scent with him. I read him books and had discussions with him and also kept long periods of silence.

We live in the city without a car so I’d been planning on skipping the stroller and wearing him exclusively. I was really excited to find out that BabyHawk carriers are not only preemie-approved but are also used by a NICU in Florida! It felt good to support such a supportive company. Nine months later (and seven adjusted) we're still BW'ing and moving onto a sturdy German wrap.

It’s really hard to adjust to a preemie plan when you had envisioned something so different. That’s how it is for all of us, whether AP or otherwise, but I'd like to think that the extra time we spent together in NICU only strengthened our bond.

Thursday, December 29, 2011

ATTACHMENT PARENTING WHILE MILES AWAY BY STEPHANIE

When I had my son at the end of 30 weeks it was pretty clear that he’d be living at the hospital for a while. I wouldn’t get to feel his skin against mine right away and we certainly wouldn’t be able to breastfeed during his first hour of life.

What happens when a neonatal hurricane whisks your baby out of an OR and it is hours before you know what he looks like? Then, on top of that, it might be days or even weeks until you can touch your little one.

How can you be an attached parent when you’re separate?

Parenting a preemie was the section you probably skipped over when reading about having your baby. I know I did. Those chapters have come to haunt me as well as any other section of a book that references what to do just after birth.

There are things you can do while living separately to aid in AP. We practiced kangaroo care every day to get as much skin to skin contact as possible. I slept with his hats or carried them around so he’d have my scent with him. I read him books and had discussions with him and also kept long periods of silence.

We live in the city without a car so I’d been planning on skipping the stroller and wearing him exclusively. I was really excited to find out that BabyHawk carriers are not only preemie-approved but are also used by a NICU in Florida! It felt good to support such a supportive company. Nine months later (and seven adjusted) we're still BW'ing and moving onto a sturdy German wrap.

It’s really hard to adjust to a preemie plan when you had envisioned something so different. That’s how it is for all of us, whether AP or otherwise, but I'd like to think that the extra time we spent together in NICU only strengthened our bond.
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What would you say to NICU nurses?


Here are some preemie mom thoughts – if you have something to add please leave it in the comments. NICU nurses often lurk on preemie pages to hear what we’re saying about them so they can improve. 

What Would You Say to NICU Nurses? Preemie Moms Respond...

If you don't like working with babies, please find another job!

Please keep your personal opinions about our babies to yourself.. if a neurologist can not confirm that my baby will have CP or anything else wrong, please keep your opinions to yourself.

To the nurses who care about their babies & their parents.. THANK YOU!
-Medtwin

Something I loved about one of our NICU nurses... we were working on bottle feeds with DS, he had not been able to drink a whole bottle despite our efforts. Probably the third day we tried his nurse sat down with me and politely said, "Can I show you how we feed the babies?" And waited for my answer before taking DS out of my arms. She showed me a technique I would have never thought of (I've fed babies before, usually in the crook of my arm cradling them, not sitting up with my hand on their chin, etc.) She then handed him back and helped me get positioned. Then it got even better, he took all 2 ounces! The nurse stood up and announced to all the nurses "B just drank his first whole bottle" and they all applauded, I melted. Talk about making a major moment for us. It really is the little things that count.

Making a parent feel like their child is the most important baby you are caring for (let's say if you are assigned to more then one) is the best thing you can do for a NICU parent. Remember the compassion and why you do what you do...We had one or two nurses who just didn't have time do care for our babies the way they should have been cared for, or so they acted. I actually had a nurse tell me via phone, "I tried bottle feeding him but he was pokey so I just didn't want to bother, I poured the rest down his tube."
-JakesBride07

I had a NICU nurse that always fed LO early. It made me so sad when I'd walk into the room all excited to feed my baby and she'd already be feeding in the nurse's arm. She never even offered to let me finish the feedings. I *hated* when she was our daytime nurse.

I loved when the nurse would offer suggestions when she saw one of us struggling. She always made sure to not make it unwanted or unnecessary advice...I think her timing and tact were fantastic.

My favorite nurses were the ones who didn't make me feel like I was a bother when I wanted to breastfeed.

And finally, while I don't mine chit chatting, I did not come down here to entertain you all day. I am here to be with my child. 
-LegalPawn

This. Holy hell I hated when I called to ask her schedule or left for a little bit and they'd feed her early. Not because she was crying or hungry but because they had other babies to care for and needed to fit it all in. 
-KitKat145

Most parents know exactly how many minutes/hours/care times each day they spend in the NICU. Nurses telling me I spent too little time or too much time there was always hurtful. 

Let the parents help as much as possible during care times. Dont assume we dont want to. 

My daughter coded several times while in the NICU. The 2 times I remeber were the worst and the best handled by the nurses. One nurse totally ignored me and lost her cool in front of me. The other was really calm and communicated with me and talked to me while getting my daughter stable. Suprisingly the one who lost her cool was a seasoned nurse and calm and collected nurse's 1st code was my daughter. 
-Caitdana

Our NICU nurses were amazing for the most part. We were very happy with the care our daughter received. My worst experience with a nurse was this: I exclusively pumped because my daughter wouldn't breastfeed (at first she had a feeding tube and was too young, as she got older she just had no interest). I was also struggling with low production. I was pumping bedside one day when a nurse said to me "That's all your getting?". This comment was extremely hurtful as I already had major guilt at not being able to produce enough for all her feedings. When I recounted this episode to my husband, I burst into tears. 

Besides this experience, I thought the nurses were amazing, although it annoyed me when a new nurse would speak to me as if it were my first day there, which I found condescending. 
-Pips09

Treat the parents like they are the expert on their baby, not you. Yes, you may have the medical expertise. But, you don't have the "mommy or daddy sense" that the parent does. 

Also, be the person who stands in front of "the bus" and voices concerns to the neos and nnps that parents are to afraid to bring up. You will probably be talking to the parents more than anyone. If the neos or nnps are doing things you know are upsetting the parents, ask them to explain it better to the parents or speak up and see if there is another route that can be taken. Let the neos and nnps know the concerns the parents are having. It isn't always easy to 1) see the neos on rounds or 2) speak up.
-Katie4253

All of this, but especially the bolded part [Treat the parents like they are the expert on their baby, not you. Yes, you may have the medical expertise. But, you don't have the "mommy or daddy sense" that the parent does.]. If Z was having a tough day, we would usually not kangaroo with him. We learned that he did worse when he was held if he was already in a touchy mood. 

On the day of his first eye exam, he'd also just been moved back to the CPAP from the canula. He was having a tough day. The nurse offered to let me hold him, and, at first, I refused because I knew he needed rest. She pushed me a bit, and he had the worst apnea spell ever. He almost had to be bagged. It was terrifying. I still feel a bit of guilt about it - if I'd listened to my instincts, he wouldn't have had that spell. The nurse should have respected my opinion when I told her I didn't think it was a good idea.

We had one nurse that we loved in particular, and she always always always listened to what we thought needed to be done in terms of holding our son. If he was having a rough day, she always understood that we didn't necessarily want to make it worse by holding him. This same nurse also was willing to be the "bad guy" in a tough family situation we were having. That was awesome. Having the nurses stand up for you and your baby was much appreciated, even if it was outside of her normal duties.

I also agree with the thoughts about how important it is to have a caring nurse when it comes to feeding. I remember one nurse in particular who tried to rush my son through a bottle feed. The rule was that if he had 2 bradies during a feeeding, it went down his tube. Most of the nurses were very careful with the pacing to avoid a brady, but she just rushed through it. He bradied a couple of times very quickly, and it was like, "Well, that's the end of that! Down the tube." It broke my heart. 
-SushiNoMore

As my LO got older, it made me happy when I came in and LO was being held. I realize this is probably last on their to-do-list, but it's nice to see them gettin' some lovin' when they are in the hospital
-Lemen99

We loved the nurses who saw Henry as an individual and got to know him and us. ITA with pp that treating the parents like the experts they are is key, esp. in the feeder grower stage. I loved it when they asked me what he liked and how he did with certain things. I also liked it when they realized that chit chatting about random things helped me pass the time. Sometimes the silence was deafening!

Some "pointers": When parents call for updates remember that they are unnaturally separated from their LOs and every details DOES matter ( I hated it when I called at 2am and all they could say was "nothing much happening, you should be sleeping!"). My favorite nurses told me the funny positions he was in and the cute facial expressions he was making. 

Remember that parents notice everything going on around them. If you handle another baby a little too roughly, let it cry too long, or complain about another set of parents, we assume you'll be doing the same thing when we leave our LO. 

Esp. early on, every chance we get to touch our LOs and care for them is monumentous. Don't rush to "get things done" before we get there- save that dirty diaper, temp, or repositioning for us to do! Also I loved it when the nurses asked us to do these things and made it a given that we wanted to/were going to hold our LO as much as possible without us having to ask!

Finally talk to the parents of your primaries about their preferences for painful procedures. I liked to be there because I could offer some comfort by hand cradling or giving sweet ease. It would burn me up when he seemed to get stuck every time I left for a minute to grab food or go to the bathroom. It felt like they didn't want me to watch- like they weren't good at it or it made them nervous. 
-haziedaze

I pretty much agree with everything the PP have said. 

I liked the nurses who took initiative to go beyond their job. eg. (1) calling us when he did something cute, finished two whole bottles in a row etc. (2) asked me which of his clothes were my favourite so that if they had to change him when I wasn't there they would put him in something cute. (3) one morning I came in and the night nurse cleaned out his whole cupboard and organzied and folded all of clothes instead of reading a magazine when she wasn't busy. 
-jenmikw

Know that I'm the mom and while I respect that this is your job, it's my CHILD. Please help me and let me parent her. I have had issues with some nurses doing things without me ahead of her schedules times and while it may just be a diaper change to you, it is one of the few things I can do for my baby. 

Explain things! I consider myself a reasonably smart person, and I'd have to play context clues to figure out the jargon. I appreciate it so much when nurses answer my questions. I ask for updates and specific questions every time I call and visit. I shouldn't find out that she's coming off a med 5 days after you started it. 

Whew, lol that sounded quite vent-like. Overall, we've had a great experience with our NICU drs and nurses, but these are the things that irk me. 

It makes me feel absolutely wonderful when I hear that a nurse called when she was off to check on Layla. It helps to know that people care. :)
-jenifairies

This is tough for me, because I have half a preemie/NICU mom brain and half a nurse brain ;) 

The biggest thing to me is when they include us. Including us in rounds, daily care, feeding, ANYTHING, means so much to us. When my daughter was first born, I was on a Mag drip and couldn't see her for two days. When she had been in the NICU about 3 hours and had been stabilized and intubated, my husband got to see her. He was obviously very upset and terrified and our nurse, who we LOVE and is one of our primaries and is having surgery tomorrow and won't be back before we go *sob*, let him take her temperature. Such a small, menial task in a normal world, but my husband said he will NEVER forget her for being so kind and patient with him in such a scary situation. Makes me tear up just typing it! 

I also love that her primaries text & call each other to update each other on her. I heard all three of them were in a training class last week and one said, "uhh who's taking care of our baby?" LOL I know some parents don't like when the nurses refer to the babies as "my baby", but to me, as a nurse, that just means that I am taking ownership of what happens during my 12 hours. When I'm working, I am 100% invested in my patients!
-GatorNurse

Talk to my baby and talk to the other babies. Don't just silently go through the motions with your care. I think it's important to tell the babies how good they are doing, how great they look, how cute they are- all the things that mommy and daddy would say if they were there.
-spain116

There is so much but I can't think of it all right now. So I will contribute a DO and a DON'T DO:

1. Please DON'T hesitate when I ask to hold my child (when he is stable enough to be held of course). I had a few nurses hesitate in the beginning, like they didn't want the extra work. Most nurses are great with this though bc they see the importance of bonding. 

2. DO take the time to teach parents. There is one nurse who always calls us for bathtime and the first time or two she really guided us and explained how she does things (of course saying that we can choose to do it her way or find our own way). She gave us wonderful suggestions that really made bath time easier. And most importantly she took the time with us to teach. She didn't rush us or seem impatient.
-AlwaysSunny925

Ditto this [spain116: Talk to my baby and talk to the other babies. Don't just silently go through the motions with your care. I think it's important to tell the babies how good they are doing, how great they look, how cute they are- all the things that mommy and daddy would say if they were there.]

And approach the baby gently and with a quiet voice. Don't be rough with her, respect her space and tell her what's happening next, even if it seems like the baby doesn't understand. Don't speak loudly around the incubator and laugh with your friends. Especially for tiny babies, keep the lights dim when possible. 
-mariposa_atl

For me... something that was especially important was for the nurse to remember that although this is her 1 billionth blood transfusion/PICC line/Desat/Brady/Apnea/Choking episode/Intubation/CPAP/Cannula etc. etc. etc. It is most likely our first (of maybe many) and it is OUR baby that it is happening to. So don't be so non-chalant about it. Tell us what is happening and why. Explain that this is good for the baby because it is what they need right now. Hug us if we want or let us cry if we want. 

Also, as PP said, there was nothing I liked more than to call or arrive to see that my son was being held/carried/cared for by a nurse and not just during a diaper change/temp check/feeding. One day I showed up and my son wasn't in his crib and I couldn't see him in the room, until a nurse turned around and she was holding him at the table as she did her notes. Another time I called and the nurse on the line was like "he is doing great, so-and-so is dancing around the room with him and singing" I said, in a panic, "if he is off the monitors, how do you know he is ok?" But the nurse assured me that they "know" him and he was fine... and he was! (He was much older at this point tho!). 

Oh and... THANK YOU A MILLION TIMES OVER!
-mrsV719

I shouldn't be learning about how to take care of my newborn in NICU through message boards and websites. Please take the time to be sure another nurse has gone over things we can do - like laundry, baths, decorating the incubator, etc. I was so grateful when one of my nurses told me I was allowed to change his diaper! I'm still not tired of it. Sadly, I only learned that I could have been taking his temperature, too, after reading these responses nine months later.
-UrbanFlowerpot

List compiled by Stephanie of Urban Flowerpot 


Wednesday, August 1, 2012

THE A’S AND B’S OF NICU AND BEYOND

If you don’t know your A’s and B’s allow me to briefly explain.

A is for apnea, a temporary cessation of breathing.

B is for bradycardia, when the heart rate slows to 80 or less beats per minute.

Most babies in NICU will experience both of these at some point. They can be very frightening, but luckily most babies grow out of them quickly. A/B’s can become a hurdle for preemies leaving NICU because they’ll need to be episode-free for several days before discharge.

In some circumstances you’ll be given an apnea monitor to take home with you. They’re very loud (and sensitive!) so you’ll know by the lights and beeps what your child is experiencing.

Leaving NICU with a monitor.
While in NICU practice not watching the monitors – focus on your child! It’s harder than it sounds because when you hear the alarm you want to see what is happening. Leave the monitors for the nurses and instead focus on your child. You’ll need to see how they are doing and if stimulation is needed. Give your baby a chance to do it themselves as hard as it is to not step in immediately.

Like all preemie things they will grow out of A/B’s. For some it might be a matter of days but for others it might take a few months.

Your baby will be monitored by a team of apnea doctors who will analyze the information recorded on your monitor. At first your baby will probably have to be attached 24/7 but once their stats improve you’ll only have to keep them on it at night. Do not brush off your doctor’s instructions! It will only delay getting them off the monitor.

If your baby is turning colors, having a significant amount of A/B’s per day, and/or requiring stimulation on many occasions please contact your doctor immediately and/or go to the ER.

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