Tuesday, October 28, 2008

Developmental Post #22

As your preemie starts growing and developing there are more things that he/she can do and will need to learn how to do. If you are in an early intervention program (or even if you aren't), you will start to have goals and things to work on with your preemie. Sometimes it can seem overwhelming to try and fit therapy into your schedule however if you think about it - there are a lot of opportunities to work on various goals throughout the day.

For example - if you are working on playing peek-a-boo then you can you work on it during mealtimes, diaper changes, playtime, bathtime and even bedtime.

My son's developmental therapist created a great chart for him that had our general schedule on the top and his developmental goals down the side. We filled in the boxes with the various ways I could incorporate "therapy time" into these basic activities. As he progressed and had new goals, we simply made a new chart. Here's an example using Peek-a-boo:

Working on peek-a-boo:

Mealtime - cover small toys or objects with a dish towel and let him pull it off
Diaper/clothing change - cover your face (or his) with a diaper or clothes and then remove it
Play with mom/dad - hide behind furniture and pop out while saying peek-a-boo
Play on his own - give him different kinds of cloths and blankets to play with
Bathtime - cover up toys in the bath with a washcloth or hide behind the shower curtain an pop out
Bedtime/Wake up - after he wakes up, peek around the door until he sees you.

Sometimes just having it written down and going through the process of brainstorming various ways to do therapy can help you remember and come up with new ideas. If you make a chart, I would encourage you to hang it in a place where you see it everyday.

Tuesday, October 21, 2008

Being an advocate for your preemie: Part 2

This post about being an advocate for your preemie is devoted to trusting your gut.

I’m sure you have heard time and again that you should “trust your gut.” While my husband and I like to ask questions, think things through and then make a decision, I have often noticed that my initial gut reaction or decision is usually the one that we go with. Sometimes you gut reaction can be a loud “absolutely not” voice in your head or sometimes it can be a quiet, nagging feeling that just doesn’t go away. So how do you know when to trust your gut or whether your gut is choosing to speak to you? Here are some things to pay attention to:

Preemie parents are faced with many medical decisions that can be life or death. When this happens to you, listen to what the doctor/nurse/surgeon is telling you. What are the options? What does each option entail/mean for your preemie? Why does this need to be done? What if we do or don’t do something? As those questions are answered, what are the first thoughts that come to mind? Do you find yourself leaning one way or another? Concentrating on one option over another? Seriously against one of the options? Those are some key indicators as to what your may be thinking.

When and how should you pay attention to your gut? Just because you have an initial reaction to something doesn’t always mean it is the right decision. But it also doesn’t mean that it is automatically wrong either. The thought of surgery or a medically invasive procedure is never pleasant but is often the option that is chosen because it is ultimately best for your preemie. That’s why it’s important to listen to that gut reaction that happens once you have information. As you think things through and discuss and weigh the options, what is your gut telling you then? Just because you initially said “no way” or “absolutely” to something doesn’t mean that you should go that direction because it may have been an initial thought without the necessary information.

Here is an example:

I was admitted to the hospital with my daughter when she was 23 weeks and 6 days. They told us all of the potential issues, obstacles and problems that our daughter might face by being born so early. After getting all of that information, the doctor told us that we needed to decide what to do. If she was born that night, did we want them to do everything they could to save her or should they do nothing and let “nature” takes its course? What a question. That was a decision and a series of conversations that I wouldn’t wish on my worst enemy. My initial reaction was that of course we had to do everything, this was our baby! And then my husband and I really sat down and hashed it out. What would a baby that could have many, many problems face in this world? Could we do it? What would it mean for our family? For our son? I really sat and wondered if maybe we should let her go. Maybe she wasn’t meant to be in this world. Thankfully my gut was very loud and kept telling me that no, this was our baby and she deserves to be given a chance. And so we did and despite some obstacles she is absolutely the blessing that my gut knew she would be. I’m thankful everyday that I listened.

It can also be helpful to know your gut reaction to something as you start to talk to other people. As I’m sure you know, once you tell people or discuss the options with people EVERYONE will have an opinion. It can be easy to be swayed one way or another by a passionate argument or new idea. I do think that opinions are very valuable however sometimes they can lead you away from what YOU truly think or want. So as you listen to the opinions, remember what your initial reaction was and let that guide you towards the ultimate answer or decision you make.

Thursday, October 16, 2008

Life in our preemie world

Lately we have had a bit of a fussy preemie on our hands. I think our recent vacation to Disneyland took more out of her than we realized. Since Olivia is delayed in expressive speech, she can't communicate frustration very well. Well, unless you count the ear splitting screams that she now resorts too. Not a fun sound. When she's extra tired it can be difficult to really determine what she wants/needs.

So what's a tired preemie mom to do?

Turn on some tunes and get dancing. Physical motion tends to calm Olivia down and she really enjoys listening and dancing to music. I couldn't find my iPod so I had to frantically flip through our CD collection and find an album that wasn't full of slow songs but had lyrics that were okay for a five-year-old. So we rocked out to Elvis and eventually had her calmed down enough to go to sleep.
So tell me, what's your desperation moment strategy for calming/distracting your preemies?

Sunday, October 12, 2008

Being an advocate for your preemie

This is the first in a series of posts about being an advocate for your preemie. All parents are advocates for their children however preemie parents often have to take this role on in a larger and more active way. These posts will explore what it means to be an advocate and ways that I have found (through my own experiences and that of others) to be a good and useful advocate for your preemie.

According to the dictionary, the definition of advocate is: One that pleads in an other's behalf; an intercessor

While that is a very appropriate definition, I think that for a preemie parent the advocate definition would go something like this:

  • One that constantly tries to take care of his/her children to the best of their ability
  • One that makes sure the correct doctor visits are scheduled and pushes to find new doctors or specialists if needed
  • One that is often bombarded with new medical terms and issues and must come up to speed very quickly
  • One that keeps track of diagnosis, prescriptions, surgeries, medical history, issues, problems, etc
  • One that has to keep asking and searching for answers in order to best help their preemie
  • One that has to be at times outspoken or at times quiet in order to get the answer or help they need
  • A researcher
  • One that knows to ask questions and question the answer that he/she is given
  • One that must make sometimes life changing decisions even when they are not sure what is right
  • One that sometimes must look at new/different/alternative options for their preemie in order to get the best care possible
  • One that does not take no for an answer until all other options have been explored/questioned/exhausted
  • One that often has to argue why a decision was made or not made to family, friends and strangers
  • One that faces a constant battle that often doesn't have a clear end point
  • One who loves their children to the end of the earth and back

Saturday, October 11, 2008

Did you know?

Many parents of preemies try to keep their preemie out of traditional daycare in order to reduce germ exposure. On the flip side, daycare is also one of the key risk factors for receiving/being approved for the Synagis shots during RSV season. I recently learned that the definition of "daycare" is actually quite broad so if the definition below applies to you - make sure to let your pediatrician know so that he/she can accurately describe your preemie's risk factors when they send a request to your insurance company.

Daycare is defined as 2 or more children who are not siblings that are together for 4 or more hours. So think about it - do you have a friend who watches your preemie (while watching his/her own kid) while you run some errands or get some work done? Does your older sibling go to playgroups or other kid activities where he/she would be exposed to germs? All of that counts so make a note of it if it applies to you and your preemie.

Sunday, October 5, 2008

Favorite Product #27

This week's favorite product is the Melissa and Doug Shapes Chunky Puzzle

I absolutely love puzzles. There are some many opportunities to teach concepts, hand eye coordination and most importantly - have fun. We just found this puzzle last week and it has been an instant favorite with my littlest preemie. What I like about this puzzle is that the design is bright and colorful but also basic. Each shape piece is chunky so it is easy for little hands to pick up the pieces. This would make a great first addition to any preemie's growing puzzle stash.

Here are some ways to use puzzles to encourage development:

1) Touch and Feel - puzzle pieces are a great way opportunity for preemie's to feel a new object and surface. Encourage your preemie to feel the edges and sharp corners of each piece. Talk about how the pieces are smooth, the edges are round/sharp/pointy/etc.

2) Doing the puzzle - First let your preemie just experiment with taking the pieces out of the puzzle and then trying to put them back in. It doesn't matter if he/she doesn't put them into the right spot at first - the key is that he/she recognizes that each piece goes in and out. After he/she has that concept, start with just one or two pieces. The circle and square are the best ones to start with because they are simple and yet also very different from each other. If you can, user your hands to cover the remaining pieces so your preemie can concentrate on just those spaces. First hand him/her one shape and let him/her try to put into the matching spot. Hand him/her the other piece and then start again. Slowly expand to the rest of the puzzle once he/she gets the hang of it.

3) Shapes and colors - As your preemie gets older you can go back to a basic puzzle like this to start teaching him/her about shapes and colors. The simple design of this puzzle makes it a really great place to start.

Happy Puzzling!!