Keeping Your Preemie Safe

One of the big areas that new parents often hear a lot about is baby safety. There are a ton of great safety products out there for keeping your home baby proofed and safe from exploring little people. However preemie parents need to think beyond normal baby proofing and consider baby products and how safe they are for their babies.

The March of Dimes has a great page on Baby Safety. Here are some additional tips for keeping your preemie safe in baby gear or with toys that may not be designed for them.

1) Weight - Many preemies come home weighing less than 5 pounds so car seats can be a big issue. Make sure you check the weight requirements and belt position before buying one. Check my list of car seats for ones that are ideal for preemies. This is also true for other products like Baby Bjorn and some toys. While it may not seem that important - often the weight/size requirement is there to ensure proper positioning during use.

2) Actual/Adjusted age - Remember to use products that are appropriate to your preemie's adjusted age. Your preemie won't get the maximum benefit (and may not be developmentaly or physically ready) for a toy that is made for someone older.

3) Physical abilities - if your preemie has some physical issues or limitations than make sure you choose toys or equipment that will fully support them and enable them to use the item. This is important for equipment such as infant baths. My daughter has low muscle tone so we had to use a bath that allowed her to lay back with support but was also big enough to accommodate her. I like to choose toys that transition through phases such as tummy time, sitting and then standing. This allows you (and your preemie) to get the most use out of the product.

4) Small parts - some preemies tend to be mouth objects a lot longer than full term babies. Make sure that any toy you give your preemie doesn't have small parts (this goes back to the issue of choosing toys that fit their developmental abilities vs. actual age).

To check out potential products and toys for your preemie, here are some of my favorite
preemie products.

In Case of Emergency

Obviously every parent hopes to avoid the late night rush the Emergency Room or the panicked call to 911. With a preemie the chance of this happening is even higher than normal. It helps to be as prepared as possible - it will make it easier on the emergency personnel and you. Here are some tips to be as prepared in case you do have to call 911 or go to the emergency room:

1) Medical Information: In a previous post I talked about keeping medical information organized and together in one place. The best time it will come in handy is during an emergency when people need medical information and you are probably too frazzled/busy/tired to remember it all. Keeping a binder updated and ready is a great tool to ensure that emergency personnel know everything that they need to in order to give proper medical care. The key here is to make sure your binder is updated - especially the medicine information.

2) Fire Department - If your preemie has respiratory issues, call your fire department when you bring your preemie home. Let them know that your preemie has respiratory issues/is on oxygen/etc, so that if you have to call 911 they will come prepared with a pediatric oxygen mask. The fire department is often the first on the scene so it's really helpful for them to know in advance what they might be facing. Our fire department keeps a board with this type of information so they noted our address and our daughter's condition when we called.

3) Know what you know - I'm sure people have told you this - you know your child the best. This is absolutely true. Take confidence in that fact and make sure you assert yourself during an emergency if need be. Our daughter is a fast breather naturally so whenever I have had to take her to the after-hours clinic, I always make sure that they know what her baseline breathing/heart rate is so that they can make a diagnosis off of that.

4) Equipment - If your preemie requires specific equipment - oxygen, feeding pump, etc. make sure that you let the medical staff know. For visits to the ER, bring that equipment with you because you don't know how long you'll wait so it is always best to be prepared. Bring whatever medicine you will need for the next few hours as well as any food or formula.

5) Diaper Bag - Try and keep your diaper bag packed and ready all the time so that you can grab it on a moments notice. A couple of toys and/or snacks will go a long way towards keeping your child entertained during a long wait at the ER.

6) Siblings - if you have other siblings, call a neighbor, friend or family (someone who can get there fast) to watch them so they don't have to go with you to the hospital. If they can't get there quickly, arrange to have someone pick up them up at the hospital.

20 Ways to Calm your Crying Preemie (and You)

Sometimes your preemie will start crying and none of the usual tricks seem to be working. This can be very stressful for you and your preemie. Here are some ways to try and get your preemie to calm down and to help you cope with the crying:

1. Walk around the house with your preemie. If he/she is on oxygen, hook up the portable tank so you can go as far as you want without worrying up tubing.
2. Dance with your preemie. Put on some music and dance around the room/house. Make sure you make big body movements so your preemie will feel it.
3. Bounce your preemie gently in your arms. For both of my preemies I would hold them close and then go up and down as low/high as I could so they could really experience it.
4. Go for a walk in the stroller - sometimes the movement and/or change of scenery will help your preemie calm down.
5. Go for a ride in the car.
6. Put your preemie in an electronic swing
7. Turn up some music, run the vacuum or let the water run in the tub for a few minutes. When my daughter is too tired to sleep, running the water helps her calm down and fall asleep.
8. Offer your preemie a noisy toy like a rattle. Shake it so he/she can hear it. Sometimes the change in noise is just enough of a distraction to allow you to calm him/her down.
9. Sing or talk to your preemie in a quiet, sing-song voice. Sing easy songs like Twinkle, Twinkle Little Star, Itsy Bitsy Spider, Row Your Boat, etc. I've also found that if I'm going to be singing for awhile it's helpful to do songs like Old McDonald, The Wheels On The Bus and If Your Happy And You Know it because they can go on for a long time as you add on new animals, etc. If you're talking and run out of things, start going over your to do list or anything that will keep you talking.
10. Memorize a couple of short baby books so that you can quietly repeat them to your preemie. My go to books are Goodnight Moon, I am a bunny and Runaway Bunny. This is helpful if you are so stressed that you don't want to/just can't think of calming things to say/talk about. It lets your mind go on auto pilot for a minute or two.
11. Put your preemie in a baby carrier or sling and walk around the house. Being close to you will often help your preemie settle down. Sometimes if you bounce up and down as you walk this can help calm your preemie down as well.
12. Lay your preemie down across your lap and gently rub or tap his/her back.
13. Put your preemie against your chest and gently pat his/her bottom or back.
14. Give your preemie a massage.
15. Swaddle your preemie tightly if he/she is small enough.
16. Feed and/or burp your preemie one more time, just in case
17. If you use one, offer a pacifier or your finger. If your preemie is really upset, you may need to hold it at his/her mouth until he/she is calmed down enough to take it.
18. Hold your preemie close to you and breathe slowly and calmly, sometimes your preemie may just need to feel your calmness
19. Remove yourself from the situation and let someone else take over. If you're home alone - call someone. Your husband/wife, family member, friend, neighbor. Anyone that you trust that is available to come over long enough to give you a break.
20. If NOTHING works, than put your preemie down in his/her bed or a swing and leave the room. Check back at least every 15 minutes.

Taking Pictures

Obviously we all take pictures of our precious preemies - some of us might be accused of taking too many (if you're in that group well, come have a seat next to me). Preemies present some interesting and challenging photo opportunities. I've covered some of those suggestions and issues in previous posts but I thought I would pull them together into one post.

In the NICU:
When your preemie is in the NICU you will obviously want to take a lot of photos. You want to document this very important time in his/her (and your) life and be able to show off your miracle to those who can't visit him/her. Remember to check the flash before taking a picture in the NICU - your preemie's eyes are going to be sensitive to light. Here are tips and ideas for taking photos in the NICU:

• If your baby is in an isolette - try and find the best angle to hold your camera so that the amount of glare is reduced. Whenever possible, take a photo of your babies face through the hand openings so that you can get an unobstructed view of your baby. Step back a few steps and take a picture of the whole isolette too.
• Showing size - pictures always make a baby look bigger than they are. Choose one object and photograph your preemie with that object throughout their time in the NICU. You can use a wedding ring, bracelet, small stuffed animal, ruler, diaper, your hand, a pacifier, etc. It's helpful if you also take a picture of the actual item next to something else so that people know just how big or small the item is in comparison.
• Showing size, part 2 - My mom found one picture of my daughter that had the nurses hand in the picture near her head. She printed out the picture in a 5x7 size and realized that the picture was life-sized. This was a great way for people to really grasp just how small our daughter was.
• Photograph milestones - Obviously you want to photograph the big (and little) events that happen to your preemie in the NICU. Make sure you capture the first time you hold your preemie, give him/her a bath, if he/she is on a vent or oxygen support - photograph when they change oxygen support or come off of it completely, moving from an isolette to an open crib, if grandparents/relatives come to visit - photograph them interacting with your preemie (even if they can't hold him/her), first feeding from a bottle, the day the feeding tube is removed, etc.

Here is a picture of our son with a pacifier - we would show people the pacifier along with the picture and it was a great way for them to realize just how small he was.

At Home
Obviously once you get home there are a myriad of photographing opportunities. Just like with any full term baby there will be milestones such as rolling over, sitting up, crawling, walking, birthday parties, etc. For preemies, here are some additional opportunities and ideas for taking pictures that continue to show just how far your little one has come.

• Coming home - clearly you want to document this momentous occasion - hand the camera to someone else so they can photograph your preemie arriving home and checking out his/her new digs.
• First times at home - Although many preemie firsts may have occurred in the NICU, you still get to experience those things at home for the first time. The first bath at home, first time a sibling gets to meet/hold your preemie, first time in the crib, etc. It's a whole new experience doing these things at home than in the NICU.
• Other milestones to think about - first time meeting relatives and friends, first time going out of the house, first time at the park, first time in the stroller, etc.
• Siblings - Make sure you photograph the reaction of your other siblings to the arrival of your preemie. This is especially key if your other children weren't able to see your preemie in the NICU and this is the first time they are meeting their new brother or sister.
• Showing size - still - Your preemie still has a lot of growing to do. You can document this growth by having your preemie hold the same item from the NICU that was used to show size. Take their picture with that item every month, year, or whatever works for you. For our son's first two Christmas's we took a picture of him in a stocking - the first year he fit entirely inside it and by the second year it barely went to his knees. It still serves as the most dramatic proof of how much he grew that first year.

Do you have a tip for a milestone to document or how to best take a picture of your preemie? Please leave a comment if you do. Thanks!

Working therapy into every day

I don't know about you but as the parent of two preemies, I have always felt this enormous pressure to constantly be working with my kids on various developmental skills. Both of my kids have been or were in physical and developmental therapy for several years. The amount of things to work on can seem long and never ending. Trying to fit therapy time/skill building into your day can seem impossible but it can be done. Here are some tips to get therapy time into every day.

1) Play time is therapy time - Preemies spend a lot of time playing. Play time is the absolute perfect time to work on various developmental and physical skills. I normally try and work on one particular skill at a time. My daughter is currently working on trying to crawl so as soon as she is on her tummy I pull her into a crawl position and let her work on that for a few minutes before she starts playing with her toys independently. If you are working on teaching your preemie how to "share" objects than sit in front of him/her and start giving him/her toys and then asking for them back. Trying out one skill at a time throughout the day can go a long way towards helping your preemie develop and help you keep your sanity.

2) It's all in the set-up - If your preemie is working on a specific skill, set-up his/her toys to help facilitate that. For example, if your preemie is learning how to look from one side or the other - place his/her toys so that he/she has to look one way to see them. Put toys farther away if you want your preemie to try and reach for toys or move towards them.

3) Set a timer - We all get busy with the demands of life so it can be hard to remember to actively work with our preemie on something. If you need a small reminder than set a timer. When it goes off that is your cue to work with your preemie on something specific.

4) Short periods of time - You don't need to constantly work with your preemie on various skills. Most preemies do better if they only have short amounts of time where they are actively having to work on something. It also helps them remember a skill if they work on it several times in a day rather than a long period of time once a day. Work with your preemie a little and then let him/her play independently.

5) Sibling help - Older siblings can be a great help for teaching your preemie new skills and working with them on certain things. My son is four and a half and he is my daughter's favorite form of entertainment. I have often asked my son to come over and play a game with my daughter so that she stays interested and continues working on a particular skill. He loves to see her try new things as much as I do so he is also a great cheerleader for her.

Oxgyen

If your preemie has to come home on oxygen, it can cause a lot of worry, anxiety, questions and confusion. Here is what I have learned about questions to ask and information that can be helpful to make the process as easy as possible.

Equipment
- What size tanks do I have? Tanks all have different letters and numbers that correspond to its size. Ask your equipment provider what size or sizes you have and make a note of it. A customer service provider may not look at your records before placing an order so to make sure you are getting the correct tanks delivered – know what you’re ordering.

- How do I put the regulator on and off the tank? This is an important skill to know. Make sure that the RT who trains you on the equipment shows you how to put the regulator on and then take it off. After the RT has show you, do it yourself to make sure you can do it from start to finish. If you don’t know how to do it and you’re in a hurry than it makes the situation much more stressful and difficult.

- How do I open/close the tank once the regulator is on? This is also essential to know – you tank won’t put out oxygen unless it’s open. You also need to close the tank before taking the regular off. There is a specific tool that you need to open and close the tank – make sure you always have it with you. We attached ours to the oxygen tank travel bag so we never have to look for it or worry about where it is.

- How long does each tank last? Surprisingly enough I found this to be a tricky question. Many employees and/or companies aren’t used to dealing with babies on oxygen so they haven’t calculated out flow/timing for small amounts. My daughter is on ½ liter and most employees were used to patients who are on 1-2 liters. Obviously you need to know how long your tank will last so make sure you get the correct information. Sometimes it might just take some simple math – if a tank lasts 4 hours on 1 liter and if your baby is on ½ liter the tank will last for 8 hours (and so on). If the company can’t tell you for sure, put your baby on a travel tank at home and time out how long it takes for it to empty so you know for sure.

Equipment Provider
- Who do I call if there are problems on a weekend or after hours? This is important to know. Make sure that the company has an after hour number and the capability to respond if you suddenly have an issue with your equipment.

- When will my tanks be delivered? If possible, try and get an established date for when your new tanks will be delivered. It may take a couple of weeks while you (and the company) figure out how quickly you go through the tanks but when possible, ask for a scheduled delivery date. You may still have to call ahead to confirm the number of tanks needed. When you are ordering smaller tanks (for traveling), make sure you check your upcoming schedule so you know if you will need extra tanks for doctor visits, trips to the store, outings, etc.

Nasal Cannula
Getting the nasal cannula working and staying in my daughter’s nose was one of the most challenging things for me because my daughter is a regular Houdini when it comes to pulling that thing out of her nose.

- How often can I get new nasal cannulas? The equipment provider should provide you with new cannulas so find out how often you can get replacements. Some of the timing depends on your insurance. If your insurance or the equipment provider doesn’t cover nasal cannulas (or doesn’t provide enough), you can purchase them online.

- How do I replace the nasal cannula? – While your baby is still in the NICU, ask an RT to show you show to replace the nasal cannula. Find out if the prongs should go up or down, if you need to trim the prongs, etc. If possible, have them help you change your baby’s cannula so you know how to do it.

- Keeping the cannula on your baby’s face is a challenging part about having your baby on oxygen. There are different techniques to keeping the cannula on. Some of it depends on your child. Does he/she try and take the cannula out? Is his/her head big enough that the cannula doesn’t slip off easily once you tighten it?
- Duoderm and tape – this is a popular way to keep the cannula on. It’s pretty sturdy however it is hard to adjust the tube once you have taped it on. Some people cut the duoderm and tape into hearts which is quite cute and works just as well as standard rectangles.
- TenderGrips – these are often used in the hospital. They are easy to put on and you can adjust the tubing if need be. You do have to replace them every couple of days so make sure you have a good supply on hand.

Tubing
The oxygen tube can be one of the most frustrating parts of having your baby on oxygen. It can be tripped on, stepped on, pinched, etc.

- Long vs. short cord – depending on the liter flow that your baby is on, you may get to choose between a long or short cord. Find out what your options are as well as what length cord you need. We originally had a 50 ft. cord for our daughter however we quickly realized that we could make do with a 25 ft. cord. It took up less space and made it easier to move around because we weren’t dragging a huge amount of cord behind us.

- If you have other children, make sure they understand that they can’t step on or block the cord. It can take some getting used to but with continued reminders, your other kids will soon move past the cord without even thinking about it

- Visitors – the cord can easily trip people up so make sure you remind visitors to watch their step. Try and move it out of the walking path if possible.

Traveling
Taking your baby places while he/she is on oxygen can make things a bit challenging but with a bit of planning, it can be pretty easy.

- Before you go somewhere, determine how long you will be out and how many tanks you will need.

- If you are going somewhere where you can take a stroller, take one! It makes it much easier to get around. Use a stroller with a big basket so that your tank and any other necessities can fit underneath.

- If you’re child is older and walking, make sure they know to stay close enough to you that the cord doesn’t get stretched or pulled out off of the tank.
-
If you are going on a longer trip (overnight or more), make sure you bring an extra nasal cannula and adhesive for attaching it to your baby’s face. You don’t want to be stuck in case you need to make a change.