Advocate Series: Doctors

When it comes to being an advocate for your preemie one of the best (and often frustrating) resources you will have is doctors. You will often have various specialists involved in your preemies care. Every doctor has an opinion or a way of doing things. The key is to find out how to work with all of them in order to get the best care possible for your preemie. So this part of the advocate series is devoted to doctors. There will be three parts including general tips, practical advice and specific ways to get the most out of your team of doctors.

General:

Ask Questions. It is your right and your responsibility to ask your doctor questions about any procedure, medicine, test that they want (or don’t want) to do on your preemie. Make sure to ask the “who, what, why, where and how” questions. This will give you a better idea of what they want to do so that you can make a more informed decision.

Do research but use it appropriately. The internet and message boards can be a great tool for giving you as much information as possible when it comes to various issues your preemie may face. If can be helpful to better understand what your doctor is talking about or to find new options. But a word of caution – spending 5 hours on Google does not take the place of an medical degree. Use your research wisely. It can help you suggest something new or understand why they want to do something. If you read something that indicates your doctor isn’t doing what other doctors have done for other preemies than ask.

Ask for time. If you are being faced with making a decision about a procedure, surgery, medicine, etc and you aren’t sure about it, ask for time to discuss it and decide. There may be times when this isn’t possible however a doctor can usually give you some time to really be comfortable with a decision before moving forward.

Follow up/follow through. I’m sure you have heard the old adage “the squeaky wheel gets the grease.” This can be very true with doctors – especially in the NICU. If you have more questions or if you feel like something isn’t being done than ask. And ask again. On the flip side – do it appropriately. We were told that line in the NICU for our son so we would ask to see the doctor every time we came in but we quickly realized that the doctors didn’t really have an important update and we were more annoying than anything else. Also, if it is something small that you are worried about than bring it up but then give them time to fix the issue. Don’t expect an instant response to everything.

The Ultimate Goal. For preemies there are often many specific goals they need to attain such as eating orally, weight gain, getting off oxygen, going home, etc. Sometimes it can appear like nothing is being done to accomplish those goals or the amount of time/steps it would take to get there is too much. So find out what the ultimate goals are for your preemie and more importantly, have your doctor outline the steps that it will take to get there. Sometimes when you know “the plan,” it is easier to see when and why things are being done. For example, some preemies that go home on oxygen end up getting the rate increased at first rather than decreased. This can be frustrating for parents because it seems like an unnecessary step backwards. Often times it is actually paving the way towards weaning off oxygen. For weight gain – find out exactly how much weight they want your preemie to gain and what they are doing to get your preemie there. Or what you should do to get your preemie there.

Focus on sign language: All Done

This sign language post is devoted to the sign for "all done." This is a great sign to teach preemies because being able to indicate that you are done eating/playing/doing something is very important. It gives your preemie a sense of control over the situation which can help ease potential meltdowns.

Go here for an explanation and pictures on how to do the sign.

For beginning tips on introducing sign language to your preemie, click here.

How to incorporate the sign:

• Start by using the sign in specific situations where you know that your preemie is "all done" such as at the end of a bath, at the end of a meal/feeding time or when you are done with an activity that has a specific end to it (time at the park, playing a game, reading a book, etc). Tell your preemie "bath all done" and make the sign for all done as you say "all done." Repeat this over numerous occasions. The key is to let your preemie be all done when you do the sign. He/she needs to know exactly what all done (and the sign) means.
• Use meal time or playtime to ask your preemie if he/she is all done. Are you "all done?" and then point to whatever it is you are doing. Encourage your preemie to do the sign. Honor any small motion that indicates the all done sign.
• When your preemie makes the "all done" sign, encourage him/her to tell you what he/she is all done with. For example, if you are reading a book and your preemie makes the all done sign, ask him/her - Are you all done with the book and touch the book. This will encourage your preemie to start telling you (by touch or later verbally) what he/she is all done with. This is an important part of extending the communication process and understanding for your preemie.
• Word to the wise - your preemie may start using the all done sign during times when you don't want him/her to be all done. My daughter will say she is all done before we are done with a specific therapy activity or meal. Acknowledge that he/she has said all done but let him/her know that the activity isn't done quite yet. This may take some time to work out but as long as you honor him/her being all done as much as you can it should be just fine.
  

General signing tip: Make sure that you teach your spouse, other children and other caretakers the signs that you are teaching your preemie. This will help your preemie use the signs more often and they will be able to understand what your preemie is saying. It can also be a helpful part of the learning process - when your spouse or other children make the sign be sure to offer lots of praise just like you would if your preemie did the sign.

Focus on Sign Language: More

Recently I did a beginning post on sign language that you can find it here. I thought I would devote some posts to specific signs with some suggestions on learning and using the sign with your preemie.

Today's post is focused on the sign for "more." Asking for more can be used throughout the day - especially during meals or playtime. This site has a great photo of the sign to get you started.

Introducing the sign:

• Once your preemie has some hand eye coordination (doing things like waving, pointing, clapping, etc) and is starting to understand the concept of asking for something (or saying no to something), it is a good time to encourage him/her to sign.
• Start introducing the sign by saying the word as you make the sign. I've found it useful if I put emphasis on the word you are signing (i.e. Do you want MORE?) so that my preemie knows which word I'm signing.
• Spend a few days using the word and sign whenever possible. Put your hands where your preemie can see them so that he/she can really notice what you are doing. If you have older children, encourage them to do the sign as well (with lots of praising when they do).
• Once you have shown your preemie the sign a number of times, show him/her how to do it. The sign for "more" is a great one to start with because you can easily put your hands over his/hers and form his/her hands into the sign. As you help your preemie make the sign, say the word so that he/she again associates the sign with the word.
• After you have taught your preemie how to make the sign, encourage him/her to make the sign every time the word is used. Help him/her make the sign for the first few times as it will take time to remember how to do it. Once you feel like your preemie has the idea, start expecting him/her to make the sign. In the beginning, any small gesture that looks like a purposeful attempt to make the sign should be praised and treated as if he/she did the whole sign.

Good activities to use the sign "more"

Mealtime - give your preemie a small amount of food. Once he/she has finished, ask "Do you want more?" and sign "more." Wait for your preemie to sign (or at least try to) more before giving more of the food. If you are spoon feeding your preemie, ask if he/she wants more between bites.

Playtime - A great way to encourage using more is to play with a toy that has multiple parts or various things to do so that your preemie needs to sign more if he/she wants to continue playing. Good activities are blocks, mega blocks, parts to a toy (like Mr. Potato Head), toys with buttons that play songs or flash lights, etc. Another great activity is blowing bubbles. After you blow some bubbles, stop and ask your preemie if he/she wants more. Wait for the sign before blowing more bubbles. When your preemie is done playing with one toy and indicating that he/she wants something else, ask "Do you want "more" toys?. Wait for him/her to sign back before offering a new toy.

Over time you will notice your preemie doing the sign automatically. Remember in the beginning that any effort or indication to make the sign should be praised and rewarded (as if he/she had done the entire sign).

Don't forget to take it slow. Just like any other skill, your preemie will need time to figure out how to do it, when to do it and what is expected of him/her.

The next sign will be all done.

Holidays with preemies

The holidays can be a fun but sometimes difficult time for the parent of preemies. Smack dab in the middle of RSV season comes a holiday that usually involves celebrating with family and friends. It can be hard to spend holidays without everyone with you and if you are allowed to be in groups, you have to remain ever vigilant about hand washing and any other issues you might be facing with your preemie. Here are some tips and ideas for celebrating the holidays with your preemie and enjoying the season despite the challenges we face.


Keep it small - Even though you may normally celebrate with large family gatherings or holiday parties with friends, don't forget that this is RSV season. Try and celebrate with just your immediate family or keep the gathering very small. For parties, either find a babysitter for your little one or forgo attending parties where you can't control who is there (or how healthy they are).


Celebrate - Even if you are just celebrating with your husband/wife and kids, still create a festive environment. I've talked to several preemie parents who have said "why bother if it's just us" but trust me - you are worth the effort too! Make a special meal, follow the holiday traditions you normally have and still take the time to simply celebrate how far your family has come this year.


Let your preemie be has involved as he/she wants to be - The holidays can be overwhelming for all us but especially to preemies. The lights, the excitement, the people, the noise - it can all get to be too much. Be mindful of your preemies' cues and try to make sure they don't get too overwhelmed with all of it.


Have some fun - Even if you preemie is small and doesn't really understand what's going on - still keep him/her involved in the holidays. Keep your preemie in the room with you while you open gifts. Let your preemie play with the wrapping paper, ribbon, boxes or anything else that grabs his/her attention.


Capture Growth - The holidays are a great time to take an annual picture that shows just how much your preemie has grown. We use a stocking that in our son's first year he could fit inside of and now he just holds it up. A great reminder of how far he has come. Other great ideas are a special ornament, hat, candy cane, decoration or anything else that you have around the house.

Enjoy your little miracles!

Favorite Product #29

This week's favorite toy is the great classic - Mr. Potato Head.


Mr. Potato Head has been around for generations and for good reason - it is a great toy. Beyond the fun of making silly faces, this toy has some great developmental aspects as well. Here are some tips to get the most of this toy:

1) Body parts - Let your preemie look at each part and name them for him/her. Help your preemie name each body part his/herself - you can point to each body part on Mr. Potato Head and then point to the same one on your preemie. Encourage your preemie to put the pieces in - you can first let him/her put them in any spot but then slowly encourage proper placement.

2) Fine motor - Having your preemie put each piece into the hole is great for practicing fine motor skills

3) Role Playing - Mr. Potato Head and "talk" to your preemie or your preemie can try and feed Mr. Potato Head too. Anything that encourages interaction.

There are a bunch of extra pieces you can get now - They even have Rock Star Mr. Potato Head. How cute is that?

Developmental Post #23

I've decided to call this post - How to do developmental therapy while lying on the couch.

You know when you've had one of those days at work (or you're just plain tired) and you get home and there your preemie is - waiting to play with you. Or if you stay home with your preemie, you may want to relax on the couch for a couple of minutes but your preemie wants to play. Guess what? You can play with your preemie, provide some great developmental therapy and still be laying on the couch. Win-Win. Here are some ways to do that:

1) Tummy time - lay your preemie down on your chest and spend some quality one on one time checking each other out. He/she works on his/her head control and neck muscles and you can give your feet some well deserved rest.

2) Cause and effect - have your preemie sit on your stomach (or pull your knees up and have your preemie lean back (depending on gross motor skills) and play Peek A Boo. Use your hands or a blanket.

3) Stimulation/Speech - Bounce your preemie up and down while he/she sits on your stomach. If he/she is old enough, start bouncing and then stop. Before you start bouncing again, say Ready, Set and then pause before saying go. Wait for your preemie to either say go or indicate in some way that he/she wants you to bounce.

4) Mirror play - Place a mirror near your face and let your preemie look at him/herself in the mirror. Encourage your preemie to smile at the baby in the mirror or if he/she is older, have him/her point out various body parts.

5) Sing Songs - have your preemie sit or lay on you and sing some songs. Anything will do. Your preemie will enjoy the entertainment

6) Books - grab a book and read something to your preemie. Encourage him/her to turn the pages, point to various pictures and touch the pages.

7) Body parts - point out body parts on your preemie and yourself. Try and get him/her to do the same.

8) Nap time - Sometimes the best developmental therapy is a good old fashioned nap. So cuddle up with your little one and enjoy some much deserved shut eye.

Keep it clean: part 2

Now that the winter season is fully here, parents of preemies need to be extra careful about keeping their preemie healthy. Last winter I did a series of posts about staying healthy so please check here, here, here , and here for more tips and information.

On a recent trip to Target we added a new soap to our bathroom. It is called Soap Tunes Foaming Soap.



When you press down on the dispenser, it plays a little song while you wash your hands. There are three different options - all based on something educational like counting or the ABCs. My son loves it. Soap tip: If your youngest happens to be in the bedroom right across from the bathroom, you might want to have your oldest use a different soap in the middle of the night. It can be a jaring wake-up at 2am.

Here are a few additional tips to use while you are getting through this winter/RSV season:

• Bring your own pen so that you can use it when signing credit card receipts at the store. You never know who used the store pen before you. If you have to use the store pen - use Purell when you are finished.
• Watch what your preemie (or other kids) touch when you are at the store. The check out counter area, store shelves, and other areas are prime spots that your preemie might touch.
• Ask to be put in a room at the doctor's office rather than in the waiting area. It will mean you're in the exam room for longer however there are far less germs
• Bring your own toys with you in the diaper bag - you know where your toys have been and who has touched them so try and keep your preemie interested in those vs. toys in the waiting room, friend's house, etc. that have been touched by many hands.