Back to School Time

We are FINALLY (I hope) over the horrible cold that took over our house for two weeks.

With September just around the corner and school starting - it's time for a back to school post. We have a kindergartner in our house so we are all pretty excited (and a little nervous) about school starting this year.

Here are some tips to help make things easier for preemie's that are going to school or daycare.

The more they know
If your preemie has any medical issues and/or is taking medicine, be sure to talk with his/her teacher at the beginning of the school year.

1. Let teachers and administrators know basic information about any conditions or issues that your preemie has. Some examples are: asthma, CLD, GERD, delays, etc.
2. Siblings - If you have older children, let their teacher know a brief summary of your preemie's issues just in case a problem arises. We will be telling our son's teacher about my daughter's oxygen and feeding issues. That way if our son makes reference to it or other kids ask - the teacher will have a basic idea of the issue which will hopefully avoid any confusion.
3. Services - If your preemie is receiving EI services that will take place during school hours - make sure you let the teacher know so proper arrangements (and expectations) can be made.

Medicine

1. If your preemie is taking medicine that must be administered at school, find out who will be giving the medicine and speak to them about proper dosage, how to give it, reactions, etc.
2. Put a Personal Medication Card in your preemie's backpack. I highly recommend having the card for your preemie and carrying it in your purse, in the diaper bag, etc. The link I've provided is to the card that Standford Hospital hands out. If you want to make your own be sure to list the conditions your preemie is being treated for, known allergies, and medicines he/she is taking including dosage.

Social/Sensory/Specific Issues

1. Social - if your child has any issues with peer (or adult) interaction - make sure your preemie's teacher is aware. Be as specific as possible - what triggers the problem, how to help calm your preemie down, etc.
2. Sensory - if your preemie has any specific sensory sensitivities - tell the teacher. Again, be specific. Let them know exactly what causes the problem and how your preemie calms down. If the teacher knows in advance they can help prevent issues before they happen.
3. Specific - Let your preemie's teacher if there is something specific that you want him/her to do or not do. Or on the flip side - if there is something specific that your preemie needs to do each day to ensure a smooth time.

Most importantly: Embrace the new beginning and opportunities for your preemie to learn new things!!

Documenting the Experience: 20 Questions

Many preemie parents that I talk to have a hard time thinking, talking, or writing about their preemie’s birth experience and time in the NICU. Unlike healthy pregnancies, a preemie birth is far from a joyous, happy experience. Instead it is filled with fear, sadness and missed opportunities. Although it wasn’t the perfect experience, I feel that it is important (perhaps essential) to document the experience. Think of what it will mean to your kids as they get older. Whether you scrapbooking, blog or simply write in a notebook, capturing this experience can be a wonderful way to remember those beginning moments in your preemie’s life.

Ali Edwards has been a huge inspiration for me over the years. She has always made a point to focus on documenting the story. Using words and photos you can remember the memories of your little ones start in the world. She did a great series on using words and photos that I think is fantastic.

I think sometimes part of the problem that preemie parents have is that as they tell the story, the emotion of the whole experience comes flooding in. Most of us can quickly dissolve into a puddle of tears as we remember how we felt and what our babies went through. And that’s okay. I think that if you can concentrate on small parts of the story than you can really capture the whole experience. And hopefully by isolating specific moments, you won’t be so overwhelmed.

I have created 20 questions that I think will give any preemie parent a chance to write down and record their preemie’s experience and hopefully get through it. They might even help you remember things that you forget when faced with the whole experience. You can use the questions to write about their birth, the NICU experience, first year or all of them. In the next few days I will post my answers to the questions.

So take a deep breath. Dive in. Remember the moments. Enjoy the process.

1. What are the facts?
   a. Weight/height/gestation info.
   b. Birth info – why did you have to deliver early?
2. What are some of the firsts you remember most?
   a. First seeing him/her
   b. Holding him/her for the first time
   c. First bath
   d. First time on room air
   e. Feeding – first time breastfeeding, first time with a bottle, full feeds
3. Beyond your significant other, who was the first person you told about what did or was going to happen? Why?
4. What was the scariest moment?
5. What was the happiest moment?
6. When you look back, what makes you laugh?
7. What was the hardest part?
8. What surprised you the most?
9. Who was there? Who helped you the most?
10. What are you most grateful for?
11. What sounds or smells do you remember?
12. If you could capture one moment in time and take a picture of it – what would it be? Why?
13. What would you change about the way you did things or a decision you made?
14. What have you learned from the experience?
15. Have you changed from the experience?
16. How did it make you a better person?
17. What would you tell other people who are going through the same thing?
18. Would you/could you do it again if you had to?
19. How did it feel when you knew you were going to be taking your baby home?
20. Five words that describe the experience

Let's Hear It For The Dads

With Father's Day just a few days away, I wanted to devote a couple of posts to dads.

Did you know that the March of Dimes has create a site with information geared just for dads? Check it out: March of Dimes site just for dads. There is a lot of great stuff there. I love that they made a separate section. I think too much of the time all of the pregnancy/new baby information is only talking to the moms so dad's tend not to read it. They miss out on some good information.

Here are some things that I have noticed/learned/discovered as the parent of two preemies:

1) Ask him too - With both of our kids I've heard many people ask "how are you doing?" or say "this must be so hard on you." And while I greatly appreciate the concern, I realize that many people don't/didn't ask my husband how he was doing. It's his baby in the NICU too. So take a moment and ask the new dad how he's holding up.

2) Guys are different - Although there are thousands of articles and talk show segments devoted to the fact that guys react and think differently than women, in the stress of the moment we often forget. We maybe in the corner crying our eyes out and look over at our husband/partner and see him zoning out watching a ballgame. Your first instinct maybe to yell "What is wrong with you?" but before you do that - take a moment (or two). Guys often internalize a lot of stuff - just because he isn't sitting next to you crying doesn't mean he isn't just as upset. Now if he normally cries at stuff and suddenly he has the emotional depth of a doorknob than maybe you should talk about it. Make sure he isn't burying those feelings too deep. I still remember the day that the social worker came to see us after our son had been born. He was born very early Saturday morning and she didn't see us until late Monday afternoon. Now, if I can help it I try not to cry in front of random strangers. We had already talked and cried with so many people that I was able to hold it in. So, it bothered me SO much when after talking with us she said "I'm a little concerned that you guys aren't more upset. You know, crying more." Remember that outward appeareances often hide what's going on inside.

3) Dads need to take care of the baby too - I know how hard it is to watch your baby in the NICU and see the nurses doing all of the day to day care. You just want to jump in there and say "that's my baby. I want to do that." So I also know how exciting it is to change a diaper and take a temperature. Finally - mom gets to do something. And while that is very important and a huge bonding moment, don't forget about dad. Let him (even encourage him) to get in there too and change the diaper every once in awhile.

4) Dad may not want to be at the hospital for as long as you do - this goes back to the whole concept of guys are different. You may be content to see at your baby's bedside for hours at a time. Your husband may be good with a 10 minute visit. Or vice versa. One is not wrong or better. Try not to get upset with your husband. Talk about it and just accept that he is doing what he needs to do and you get to do the same.

More later this week...

Valentine's Day Craft

If you are looking for a great Valentine's Day decoration craft to do with your preemies - I posted one at http://www.giftsbyhand.blogspot.com/

I think I'm going to add new hearts each year to show how much bigger my little ones are getting.

Have fun!

Siblings and Doctor Visits

Depending on the level of issues/needs that your preemie has, you may end up going to a lot of doctor's appointments. If you have other children who are not in school or with a babysitter, that can usually mean that they are dragged along as well. In my case, I have to take our son to most of my daughter's appointments. Here are some things I have learned to make it easier on everyone.

1) Entertainment - when you pack the diaper bag, be sure to pack things for your other kid(s) too. Books, coloring books, small toys, stickers - whatever will keep them entertained and at least marginally quiet for awhile. For my son I always carry around a few cars, this race track, a small pad of paper, some crayons and one toy of his choice. This ensures that he has several options to keep him occupied.

2) Snacks - little ones (and big ones) get hungry. And they often get hungry at the exact moment that your doctor is outlining a new plan of care for your preemie. I always bring an assortment of fruit snacks or other non-perishable items that can be quickly handed over to my son during those moments.

3) Set expectations - let your kids know where you are going and what is going to happen. They need to know what it means to "be good" during the appointment - stay quiet, let mommy/daddy talk to the doctor without interruptions, etc. For our son he knows that going to PT means he gets to play without taking toys from his sister, the pediatrician means he gets to see the trains when we are done, etc. Setting a routine helps to make the trips a lot easier.

4) Rewards - try and find small rewards that can be given to siblings who have to tag along. Many doctor's offices now have train sets or fish tanks to look at - let your kids look at the trains/fish tank before and after the appointment. Spending a couple of extra minutes after an appointment letting them look at the trains can go a long way towards making them feel better about going somewhere they don't want to go. A lot of doctors have stickers and/or lollipops. My son always gets to choose one of each (and our pediatrician is great about handing him the box of stickers so he can stay occupied for several minutes picking one out).

5) Come prepared - if you know the doctor is going to need some specific information, try and have it ready before you get to the appointment. It makes it much easier to balance your kids and listen to the doctor if you aren't also looking for paperwork, etc.

With a little extra planning, bring a sibling to a doctor's appointment can be far less painful and distracting.

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.

Thankful

Happy Thanksgiving to everyone. If you aren't celebrating this day, than I hope you have a fantastic day full of things to be thankful for.

We are sick but thankful this day. Despite all of the challenges that preemies and preemie parents face, there are many things to be thankful for this year. Take a moment to give some extra loves, hugs and smooches to your family today.

And enjoy!!

I'll be back later this week and throughout December with a lot of new posts about staying healthy this winter, being an advocate, feeding and reflux issues and of course a preemie holiday gift list.

Sign Language

Sign language can be a very useful tool for helping your preemie communicate with you and the rest of the world. Both of my preemies were delayed in speech so I know how frustrating it can be to try and understand what your preemie wants. There are a lot of books, videos, and websites that can help you learn and teach sign language. Here are some things I have learned while teaching my daughter sign:

1) Start simple. Your preemie isn't going to pick up every sign right away. Pick a few key signs and work on them until your preemie gets the idea and then slowly add more.

2) What signs to start with? Start with signs that can be used in multiple situations. Good ones to start with are: more, all done, help, open, drink, eat, and play.

3) Use playtime to teach signs - When you are playing, start using the signs and encouraging your preemie to do the same. Here are some good way to use some basic signs:

• More - blow some bubbles and let your preemie pop the bubbles. Before you blow more, say more? while you make the more sign. Help your preemie make the sign so he/she can start to get the idea.
• Open - put a toy in a clear container with a lid that is hard to open (zippered bag, peanut butter, lotion container). Have your preemie see you put the toy in and then hand him/her the container. If he/she hands the container to you or tries to open it, say open? while you make the sign. Open the container once your preemie tries to make the sign or you have at least encouraged it several times.
• Help - if your preemie is getting frustrated or tries to indicate that he/she needs help than do the help sign before helping him/her. Try to get him/her to do it before helping them

4) Adapt. Even though it is usually best to use the correct gesture for each sign (so that others understand them), if you need to change them to better suit your preemie's abilities than do it. We have changed the play and help sign so that our daughter can actually do it.

Have fun communicating with your little one!!

Let's party!!

This party post is devoted to celebrating that special milestone in a babies' life - turning one! Turning one is a big milestone for any baby but for preemies it is often a truly momentous occasion and an opportunity to celebrate just how far your preemie has come. Here are some ideas for celebrating a year in the life of your preemie:

1) One and a half is the new one - if your preemie was born during RSV season, hold off having a big party for him/her until the safer summer months. Our daughter was born in January so we just had her "1 1/2" year birthday this month. We told everyone in her coming home announcement that this is what we would be doing so it wasn't a surprise. Our friends and family still had a chance to celebrate her first birthday with her and we didn't have to be as worried about people touching and interacting with her.

2) A year in photographs - Pictures speak volumes so put together a collection of photographs of your preemie's first year for people to look at. Choose a selection from the NICU to now so that guests can really "see" how far your preemie has come. Here are some ways to incorporate them into your party:

• Hang them up around the room - make them a part of your party decorations.
• Create an album or spread them on a table.
• Make them into place mats - Laminate them so the pictures don't get ruined.
• Make them a game - have people put them in chronological order or guess which one came from a certain time frame.
• Make small pictures, glue or tape a toothpick to the bottom and then put them on cupcakes.

3) Look What I Can Do - celebrate the developmental/physical/emotional milestones that your preemie has achieved. Make an "I Can" board with words and/or pictures of your preemie doing various things. You can add to it through out the year or make it a "one year" project to celebrate.

4) NICU Memory - See how many of your guests remember things about the NICU. Create a game that tests their knowledge. Feel free to email me if you would like a word find or word definition match game to use at your party.

5) My own space - Depending on where you have your party, make sure you set up a spot with toys, shade (if needed) and anything else that your preemie might want for a little down time. Give him/her some time to hang out away from everyone if he/she is getting overwhelmed by all of the people and activity at the party.

6) Fun Themes - Here are some fun themes that can relate to preemies -

• Alice in Wonderland "Unbirthday" - this is a great theme if you have a 1 1/2 birthday. Butterfly - I like using butterflies because they signify great, beautiful change that often occurs with preemies too.
• Turtle - Slow and steady. Another great animal that matches the pace of some preemies.

Do you have a great idea for celebrating preemies? Please leave a comment or email me!

Early Intervention - Making it work for you

Many families of premature babies are offered early intervention (EI) services. While these services can be helpful and useful, it can also be frustrating. Here are some tips to make your early intervention program work for you.


1. Early intervention vs. doctors. Unlike doctors (who are normally there to do procedures, tell you when/how to treat something, etc), early intervention services should give you ideas and suggestions for things you can do at home with your preemie. EI is there to help you help your preemie. Giving you physical, developmental and emotion ideas and support to ensure your preemie continues to develop appropriately. This is a key difference and keeping it in mind will help you determine if the services you receive are what you want/need.

2. Establish goals. Your EI team should create goals for your preemie (with your help). Normally they are 6 month goals however there is nothing wrong with creating shorter term goals as well. These goals are a great way to determine if things are working and if progress is being made. Your preemie may not always meet the goals in the time frame specified, but it is a good way to know if things are on track. Make sure you put your input into the goals. You know your preemie the best so you can help establish realistic goals. If you aren't happy with a goal or think that one is unnecessary - speak up! For example, my son was a horrible sleeper as a child. He wouldn't go down on his own and we didn't opt to do the "cry it out" technique. Every 6 months our developmental therapist would put down "go to sleep on his own" or some variation and every 6 months he wouldn't meet it. I had to explain that this was not an area where I needed their assistance so we finally were able to let it go. On the flip side, if you think something should be on there that is not - ask to have it included.

3. Personality fit. It's important that you and the specialists are a good fit personality wise. This doesn't mean that they need to be friend material - just that you can handle seeing them frequently and you appreciate their approach to things. I had one specialist who really got on my nerves - it made it hard to really focus what she was talking about because I just sat there annoyed. That isn't helpful for anyone. If you don't like someone (to the point that you can't work with them) or you don't like how a specialist works with your child and/or their approach to early intervention than ask for someone else. This is especially important if you are seeing this person frequently and they are working closely with you and your preemie.

4. Ask questions. The early intervention specialists should be showing you how to do things with your preemie at home/when they aren't there. Make sure you understand what they are saying or showing you. Also find out why they are suggesting something - what is the goal of the movement, activity or game. The more you understand, the better you will be able to work on it yourself (or come up with a personalized way to do it).

5. Ask for more or less. Some preemies end up "catching up" up faster than others so you may want to scale back the number of times you see the developmental therapist. Other preemies need more services. Let your coordinator know what you require so that changes can be made. The more you take control of these services - the more you can ensure that you are getting what you need (and not more or less).

6. At home vs. School setting - Depending on your preemie's health/situation and/or regional offerings, you may receive early intervention services at home or in a school setting. Both options have their pros and cons. I encourage you to try out what is offered and then decide if it is something you want to continue doing.

Developmental Wednesday #6

Reading your baby's signs/cues

Preemies can easily become stressed or overstimulated - especially when they are in a new environment or surrounded by a lot of people (familiar or unfamiliar). Once you recognize your own preemie's signs of stress and over stimulation, you can help him/her calm down and reorganize. For example, our daughter gets over stimulated in large crowds and when she does she simply stares at everything with no expression and breathes with her mouth open. Being able to help your preemie calm down, can go along way towards helping him/her interact better.

If your preemie is getting overstimulated or stressed, he/she may:

• Turn his/her body or face away from you
• Arch his/her neck and back
• Cry or fuss more than usual
• Start having rapid-shallow breathing
• Avoid looking at you or shut his/her eyes
• Spit up
• Hiccup and then cough
• Change color
• Straighten his/her arms out to the side
• Withdraw

You can try one of the following techniques (or something that works for your preemie) to try and help him/her reorganize and calm down. Note the emphasis on trying one technique - you don't want to further stimulate your preemie by doing several things at once. This is an important thing to talk about with family or other caregivers. People tend to naturally talk to a baby, while they rock them and smile or look at them. This can often be too much for a preemie. It's a hard concept to learn but easy to fix once people are aware of the situation.

• Give your preemie some quiet time - put your preemie in his/her crib or just let your preemie play by him/herself. Don't force any toys or other noises on your preemie - he/she just needs time to relax and reorganize.
• Place your hand on his/her chest
• Talk to him in a soft voice
• Gently rock him/her in a cradled position
• Let him/her suck on his/her hand, your finger, or a pacifier
• Stay quiet and look away from him/her - sometimes eye contact is too much for a preemie
• Hold your preemie's hands so he/she is grasping your thumbs and slowly bring his/her arms folded close to his/her chest
• Change your preemie's position - if he/she is on his/her tummy, put him/her on his/her back or vice versa.
• Just like in the NICU, place one hand on his/her head and the other at his/his feet to help get him/her into a "tuck" position

Tip: if you're with a group of people who just "don't get it" when it comes to the issue of over stimulation or you need to try and quickly help your preemie before a full on melt down you can: tell people you want to check his/her diaper and then go somewhere quiet to help your preemie, say that you need some mommy time with your little one and gently take your preemie back to help him/her calm down, tell them he/she looks tired and needs to rest. Anything that works for you!

Once you start to recognize the signs of stress and over stimulation in your preemie, you can quickly try and help your preemie with whatever technique works best for him/her.

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!

Going Places, Part 1

With the weather getting warmer (in most places), RSV season coming to a close and the urge to get out of the house growing stronger, preemie parents are going to start taking their precious miracles out into the world. While most parents can't wait to show off their baby's to the world - preemie parents are often nervous, apprehensive and downright scared about the potential risk to their babies. It's a germ filled world and I don't know about you, but I can't help thinking I'm living in a Lysol commercial where you can literally "see" the germs everywhere.

Here are some tips to try and stay as germ free as possible during your outings.

1. Timing. If you are going to the store, try and go early in the morning when there are less people. If you aren't sure when the store's downtime is - call and ask. Any employee should be able to tell you when they are most busy or slow.

2. What to Bring - make sure you pack plenty of Purell (or any variant of it) and put the bottles in easy to find places. If you or your kids touch something "questionable," don't hesitant to put some Purell on. Put a pack of Clean Wipes in your purse or diaper bag. They are perfect for wiping down shopping cart handles or playground equipment.

3. Stroller/Carrier - Depending on where you are going, try and have your preemie stay in the stroller, car seat or baby carrier. When we take our daughter out in her stroller, I pull the sun shade down most of the way and then throw a blanket on top so she is totally covered. She's not a huge fan of this but it helps keep little (or big) hands from reaching in when we are in a crowd of people (like the doctor's office). A baby carrier or sling is perfect for shopping trips. Make sure to face your baby towards you - strangers are less likely to reach towards your personal space to touch the baby. Or if they do - they will only be touching the back of his/her head.

4. Keeping people away - if your baby is in a stroller or other covered carrier, the best way to keep people from trying to touch, cough or breath on your preemie is to tell them he/she is sleeping. This is especially useful for small children who are naturally curious about babies. Just gently tell them your baby is sleeping and slowly start backing up/moving forward so you and your baby are out of reach. If they can plainly see that your baby is awake - just tell them he/she is tired and then move along. A lot of people also use signs to gently remind strangers they need to be careful.

5. Outside vs. Inside - If your friends and/or family want to get together for lunch/play date, ask to meet a park. Or in a backyard. It's much easier to have kids play outside - they have more space to move around without swapping germs on every toy available.

6. Older siblings - While your protecting your preemie - don't forget about protecting your other children. Before we go into any store I have my son use Vick's Early Defense on his hands. We then Purell afterward - just in case. I also remind him that he shouldn't touch his face for the entire time we are in the store. Siblings can also be a helpful diversion from your preemie. If a friend or stranger wants to touch the baby - try and divert their attention towards your other kids. "Bobby is so excited about his little sister," "Alison is really excited about playing soccer," etc. Anything to move the focus away from your littlest one.

7. Take it slow - We've been stuck inside since July of last year so I know about the urge for freedom and well, spur of the moment shopping. You still want to take it slow. Try one trip and see how it goes. How do you feel? How did your baby do? If you take it one day at a time, you'll learn the best ways to handle things for you and your baby.

This weekend I'll post part 2 of Going Places - how to handle stares, questions and downright rudeness.

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.
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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.

100 Ways To Praise A Child

I received this great list "100 Ways To Praise A Child" from my son's developmental therapist a few years ago. I'm not sure who created it. Some of the praises are a bit outdated (in wording) but the sentiment remains the same - praise your child and let them know how special they are to you. This is a concept that is important for all children but can be especially helpful for a preemie. Preemies are asked to do a lot of things that can be difficult and challenging for them and making sure they know that you think they are doing a great job can go a long way towards success. So yeah for praise!!

100 Ways To Praise A Child

1. Great
2. Way to go
3. Outstanding
4. Wow
5. Super job
6. You look stunning
7. Awesome
8. Good for you
9. Right on
10. Excellent
11. I knew you could do it
12. Impressive job
13. Well done
14. Remarkable
15. Neat
16. I'm proud of you
17. You made my day
18. Fantastic
19. Nice work
20. Looking good
21. It's great to know you
22. Now you've got it
23. Bravo
24. Wonderful
25. Far out
26. You're a real trooper
27. You're important
28. What do you think?
29. You're a winner
30. Nothing can stop you now
31. You're incredible
32. You're catching on
33. Hot dog, you did it
34. Bingo
35. Hooray for you
36. You're on target
37. You're on your way
38. How smart of you
39. What a big help you are
40. You light up my life
41. That's incredible
42. Dynamite
43. Remarkable work
44. You're beautiful
45. You're unique
46. Nothing can stop you now
47. I like you
48. Spectacular job
49. You're precious
50. Good discovery
51. You figured it out
52. Hip, hip hooray
53. Three cheers for you
54. Magnificent
55. Super work
56. Creative job
57. Good thinking
58. Exceptional performance
59. You're exciting
60. What an imagination
61. What a good listener
62. You're fun to be with
63. You tried your best
64. You're growing up
65. I care
66. You're a good friend
67. I trust you
68. You're important
69. You'll go far
70. You make me smile
71. You mean a lot to me
72. You make me happy
73. You belong
74. You brighten my day
75. I respect you
76. You mean the world to me
77. You're a joy
78. You're a treasure
79. You're wonderful
80. Awesome
81. You're a.o.k.
82. I love you
83. A big hug
84. You're so enthusiastic
85. There's nobody like you
86. You're sweeter than candy
87. Cool
88. Keep up the good work
89. You shine
90. What radiance
91. I admire you
92. How lovely you look
93. A+ job
94. Artistic
95. Brilliant idea
96. You've got spirit
97. All right, that's the way
98. It wouldn't be fun without you
99. Thanks for your help
100. Get down to eye level and smile

Fighting "Lockdown" Boredom

If your baby is in the NICU or already at home, you and your family want and need to avoid all of the cold and flu viruses that are going around right now. Even a small cold can be extremely hard on a preemie so try and stay as healthy as possible. Since we are nearing the end of RSV (and cold and flu season) and the weather is slowly getting better, it can be hard to stay on "lockdown" and keep the kids away from others. Trust me I know - we brought our daughter home in July of last year and have been on lockdown ever since. It has been hardest on our four year-old since he wants to be out playing with other kids or going to indoor events.

The end is insight so instead of risking a trip somewhere, try some of these great activities to keep you and the kids entertained.

1) Crafts - Make a quick trip to the craft store and pick up some easy to do kits or supplies. You can do Shrinky Dinks, Fimo beads, Perler beads, knitting, drawing/painting, etc. Stores like Michaels have a $1 section that offers some cheap and fun mini-projects to do as well. If your kids are older, buy matching kits and hold contests for most unique design, creative use of materials, etc.

2) Bay Area Parent Magazine had this great idea - create a Literary Café. Read a book that has to do with food in some way and then have the kids help you make one of the foods mentioned. Some classics include Cloudy with a Chance of Meatballs by Judi and Richard Barrett and Thunder Cake by Patricia Polacco. Or try out a new recipe or change the ingredients in a favorite recipe and have a tasting night.

3) Build a fort or create a maze or obstacle course. Have the kids build their own tent city or design an obstacle course in the house. Anything that gets them using their body and their mind to create something new and fun. If you can, leave it up at night and let them sleep inside with a flashlight and a favorite book or toy.

4) Redecorate - Have kids create a new theme for their room and then make decorations to match. Use this time to clean-up and move furniture if need be. Same goes for the rest of the house - this is a great time to try out a new idea in a room or finally hang those pictures you bought three years ago.

5) Movie Night (or Day) - let kids pick out a movie and hold an all family movie night. Make popcorn or other snacks and relax together. If it's just adults - pick out a movie you've been meaning to watch but haven't had the time.

6) Make cards - if a holiday is coming up (like Easter), have the kids help make cards that you can send out to relatives. Get started now and then you won't be a in a mad rush at the last minute. Or you can get started making cards for the rest of the year - have a stack of birthday cards that you can use when you need them.

7) If the weather is nice, go for a walk or to the park. We leave our daughter in the stroller and let our son run off some of his pent up energy. We all love getting some fresh air and it's a nice change from the house.

8) Play games. Pull out board games that you haven't played in awhile and have a game day/night. Create new rules to old favorites to make a new game.

Do you have a fun activity that you want to share? Leave a comment!

Taking Care of You

When you have a baby in the NICU, it can be difficult to focus on anything but him/her and how things are going. If you have other kids at home than you end up balancing time and energy between them as well. The person who ends up getting lost in the shuffle is well, you. A baby in the NICU can bring feelings of guilt, stress, anger, confusion, and sadness (just to name a few). It's important that you find time for yourself - it will make it easier for you to handle what is going on as well as make you a better parent.

Here are some ideas to get you started:

1) Go out to dinner
2) Grab coffee with a friend. Or ten friends.
3) Take a bath
4) Go for a walk or some other form of exercise
5) Rent or go see a movie
6) Run errands - grab a coffee and bring your iPod for a chance to chill out and get things done - that's what I call multitasking.
7) Make something - food, scrapbooking, knitting, sewing, whatever you have fun doing
8) Read blogs - people blog about anything, find one you like and read up
9) Play a game
10) Read a book
11) Get a massage. Or a manicure/pedicure. Or all three.
12) Go shopping. To buy or to window shop. Either way can be fun.
13) Go to a concert or sporting event

Basically find something that you can lose yourself in, even for a little while. Something that relaxes you and will help you focus on something other than the little miracle waiting for you at the NICU.

For those of you feeling guilty about not staying as long as your normally do one day or night because you are doing something for you - don't. Not only will it make you a better parent, your baby won't remember and you can make up for any lost time when he/she comes home.

So take a deep breath and start planning!

Siblings

If you have other children, it can be difficult for them to fully understand why their brother/sister is in the NICU. This is especially hard if your child(ren) are too young to visit the NICU. My son was three when my daughter was born. With that experience I learned some tips that I hope you can use to make this time easier on you and your children.

1) Be general, not specific - Obviously they will want to know where their new little brother or sister is and why they aren't at home. Depending on your baby's situation and the age of your child(ren), let them know that their brother/sister is small/sick, etc. and needs to stay in the hospital for awhile. Let them know that there are doctors and nurses who are taking good care of their brother/sister. NICU stays can often last longer (or shorter) than you think so be careful about giving a timeline for when your baby will come (you can simply say that when he/she gets bigger, better, etc.)

2) Photo - To help them connect with their brother/sister, give them their own picture to look at. Depending on your baby's condition, you may need to be selective as to what picture you choose. We were worried about how our son would react to seeing our daughter covered with wires, tubes, etc. Luckily I had a wonderful friend who took a picture of our daughter and altered it so she was covered in a blanket and all the tubes and wires near her face were gone. Our son loved the picture - he carried it around for a long time. Eventually he saw the other (non-altered) pictures but the first picture was a good starting point.

3) Visiting the NICU - If your other child(ren) can visit your baby in the NICU, make sure you prepare them in advance. Show them pictures of what your baby looks like. Let them know that your baby is hooked up to monitors/machines that are helping him/her get better. Make sure that they know that they need to be quiet, stay by your baby's bedside and don't look around (too much) at the other babies. Most NICUs have specific rules about how often kids can visit - make sure your kid(s) know that ahead of time so they aren't expecting to visit every day.

4) Going to the hospital - When our daughter was first in the NICU, we took our son with us to the hospital to visit her. We would take turns - one person would visit our daughter and the other would stay with our son. It was tough at first but he got used to it fairly quickly. One of the keys to success was having him bring things to do. I would suggest creating a special "Hospital visit bag" with specific toys. Good options are coloring books/crayons, small toy figures, travel version of games, cars, trains, doll, etc. Anything that doesn't take up a huge amount of space because sometimes waiting areas can be full or small.

5) Gifts - Even though your baby is the NICU, you can still have your kids exchange gifts. We bought a "big brother" shirt for our son and told him it was from his sister - he loved it. He also had a great time picking out something for her. While your baby is in the NICU you can have your other child(ren) draw or color a picture for them. Hang the picture on the isolette or crib and take a picture so they can see it (or have them bring it in if they can visit).

Finding even small ways to keep your other kids involved and connected with your baby will go a long way towards a smooth transition from the NICU to home.

Family Updates

Family and friends always want to know how new babies are doing. The information requests can start to multiply by a 100 when your baby is in the NICU. One of the best ways to keep everyone updated is to create a family blog or website. There are many services out there today that make it fun and easy. Your family will enjoy reading about your little miracle and you won’t have to repeat yourself as many times (a win win!). I’ve created a list of popular sites that are available as well as some tips for good things to include in your blog.

1) Regular Updates. Once you start your blog, try and update it on at least a semi-regular basis. You could update daily, weekly or whatever works for you. If you get yourself on a schedule it will be much easier to stick to it when things get busy or stressful. You can add a reminder to your calendar or even create a post-it on your computer. Whatever works best for you.

2) Information Please. When your baby is in the NICU you are constantly faced with new information which can often be complicated or hard to understand. Trying to write about it and explain in to others is even more of a challenge. Or you may also get to the point where there isn’t as much new to report so you run out of things to talk about. Here are some basic things to report:
General comments - how is your baby doing, feeling, etc.
Weight. How much do they weigh today. Did your baby gain or lose.
New milestones. Report when your baby started eating from a bottle, you changed his/her diaper for the first time, you held him/her, gave him/her a bath, etc. Not only is it good stuff for others to read, it allows serves as a great reminder for you in the months that follow.
New or changed diagnosis – If they have changed or discovered something new about your baby you can talk about it.

3) The Whole Family – Even though you might have created a blog because of your baby in the NICU, that doesn’t mean you can’t talk about the rest of the family. Tell people what your other kids are doing or what you guys are doing. They will want to know that as well.

4) Keep it simple – As I’ve said before, things in the NICU can get complex. For people who aren’t there every day, it can be even harder to understand. Try and keep things as simple as possible – explain acronoyms, tell them what specific doctors do (i.e. a pulminologist is a lung doctor), why certain things are or are not happening, etc.

5) Photos – Don’t forget to add photos of your baby. Provide details of what’s in the picture or when it was taken. And again, don’t forget about the rest of the family.

Here is a list of blog and website services to get you started:

Free
Caringbridge – this site is specifically designed for people who have someone in the family with critical health issues
Blogger – a service from Google that offers a variety of templates
Myfamily– a website service for families
Wordpress – a free blog service that also offers optional paid options
Birthvillage – offers baby journal and online baby announcements

Paid Sites
Typepad – blogs start at $4.95 a month
Babyjellybeans – family website/blog starts at $8.95 a month
Familysays – private family website starts at $5 a month

March of Dimes

Although most people have heard of the March of Dimes, many don't know that their focus and mission for the last 20 years has been fighting premaurity and birth defects so that every baby can be born healthy. Obviously this is an organization I fully support. They have helped get folic acid into whole grains for better prenatal nutrition, supported research that created Surfactant, a drug given to many preemies to help their lungs and their website provides a ton of great information for parents and would be parents.

Check out their website to find a lot of great articles and resources.

Every year the March of Dimes holds a national fundraiser - formerly called WalkAmerica, it is now called March for Babies. The money raised helps the March of Dimes:

• Fight for health insurance for all women and children
• Push for newborn screening that could save lives and prevent mental retardation
• Provide comfort and information to families with a newborn in the neonatal intensive care unit, or the NICU
• Support all-important Nobel Prize winning research offering hope for preventions and solutions for babies born too soon or with birth defects

Last year our family created a team and it was great. We raised money and did the walk in honor of both of our kids. It was a great event as we enjoyed meeting other families who had gone through simliar (and different) experiences and it really helped us feel like we were doing something to help other people.

Visit the March for Babies website to find out about this year's events and how to form a team. Over the last few years the number of family teams has been steadily increasing - I think it is an exciting sign that families who have been affected by prematurity or those that want to support a great cause for all babies are coming together and trying to do something to help.