Love your pharmacist

Pharmacists and their technicians are often the most overlooked and under utilized part of the medical field. They can be a tremendous resource for you and your baby. If your baby is on a lot of medicines and/or a complicated regimen, than the pharmacists can be a life saver. Here are some tips to help maximize your experience with the pharmacy team.

1) Choose one pharmacy. Try and get all of your prescriptions from the same place. This makes it easier for you tell doctors where to send new prescriptions and it helps the pharmacists become familiar with you and your families needs. Where you go is entirely up to you. We choose a Target pharmacy because they have great service and I can get shopping done while I wait.

2) Refill services - find out if your pharmacy offers a service for fast and/or automatic refills. Some pharmacies allow you to sign-up for automatic refills so that your prescription is refilled within 5-6 days of the time it will run out. I haven't personally signed up for this service because I usually try to combine prescription pick-ups to eliminate extra trips to the store.

3) Ask for help - if you're confused about how or when to give a medicine - ask. That is what the pharmacist is there for. You can also ask about any side effects or potential issues with combining certain medicines together. The pharmacy staff can also help you with over the counter health items as well.

4) Give them information - people are naturally curious so if the staff asks you about your family, feel free to tell them. Once they know about your little miracle, they will often go even farther out of their way to help you. My pharmacy knows that I can't go out whenever I want so they will try and help me whenever possible.

5) Let them know about any medicine/medical changes - sometimes a doctor will have you change the dose of a medicine before the other bottle has run out. Make sure you get a new prescription from your doctor and give it to the pharmacist. If you run out too soon, your insurance won't let you get a refill so make sure they have any updated information.

6) Easy to use bottles - a lot of pharmacies are starting to use bottles that have special caps that allow you to put the syringe in the top, tip the bottle over and then draw out the medicine. This is the best thing I have found! At times I have to give my daughter up to 7-9 medicines at one time so these bottles make it much faster to draw them up. I know that Target uses this system as well as other pharmacies.

7) Supplies. Syringes will often start to lose their numbers after awhile. Don't be afraid to ask your pharmacist for more. They have plenty and should be able to give you some. Some places may charge a small amount for extras - try and find a place that will give them to you for free.

8) Mark the medicine - if you have more than one baby with a lot of medical needs, try and find a pharmacy that will mark medicines for each patient (such as color coding). If your pharmacy doesn't do that - I would recommend doing it at home with some color stickers or a marker. When you're in a rush you don't want to accidentally grab the wrong bottle.

9) Be friendly and patient - Just like with everything else, a smile goes a long way. Stop by and wave hi when you're there. Be patient if someone new is there and unfamiliar with your families needs.

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!

So how old is my baby?

Once you have a preemie, you will start to hear terms such as "gestational age," "chronological age," and "adjusted or corrected age." It can get a little confusing as to what the terms mean and where they do and don't apply.

Here's a general guide to help you understand what each term means and when they should be used.

Gestational Age - this is how many weeks your baby spent in the womb before he/she was born. For example, our daughter was born at 24 weeks and 4 days. They base this age on when your actual due date was.

Chronological Age - this age is calculated from the point that your baby was born. They add the number of days/weeks that your baby is old and add that to his/her original gestational age. For example, when our daughter was 2 weeks old, her chronological age was 26 weeks.

Adjusted/Corrected Age - this age is determined by subtracting the number of weeks early your baby was from his/her gestational age. For example, our daughter is now 13 months old. Since she was 16 weeks early, than her adjusted age is 9 months old.

When/where does each term apply and what does it mean?

Gestational age - once your baby is born, his/her gestational age is used to let people know how early your baby was. For example, my daughter was born at 24 weeks or she was 16 weeks early. My son was born at 31 weeks or he was 9 weeks early. A little tip: Doctors will want to know the gestational age in terms of how many weeks old your baby was at birth however most people will better understand if you say how many weeks early your baby was.

Chronological Age - This is the age that doctors will use to schedule check-ups and immunizations. Even though your baby may have born early, he/she should still receive immunizations and regular check-ups based on their chronological age. This is also the age that you will use throughout your child's life to reference how old he/she is.

Adjusted Age - Most people use your baby's adjusted age to determine what developmental milestones your baby should be hitting. Since our daughter's adjusted age makes her 9 months, the doctors and therapists will access her based on things that she should be doing as a 9 month old NOT as a 13 month old. Sometimes adjusted age is also taken into consideration for things such as eating solid foods, drinking from a sippy cup, etc. You should always check with your doctor to make sure that you are doing things at a rate that is appropriate for your baby. Some children may do things before, after or right at the time of their adjusted age.

How long does adjusted age apply?

Most people use adjusted age until a child is two. There are some people who think that people should continue to use it until a child is 2 1/2. Regardless, most premature babies have caught up by the time they are 2 - 2 1/2. Once they reach that age than you can just use their chronological age for reference. This timeline may change based on other conditions or factors your child may be facing.

When do I celebrate my child's birthday?

Even though your baby was born early and has an adjusted age, you should still celebrate their birthday on the day they were born. That will always be the day they were born regardless if you are adjusting for other things. You can also celebrate other things including the day they came home, the day big milestones were set, etc. Look for more on this in later posts.

Preemie Clothes

Depending on how small or sick your preemie is, they may spend a long time in just a diaper until they grow bigger and stronger. So the day that they get to finally wear some clothes is very exciting. Although it has gotten easier, it can still be a bit difficult to find clothes that will fit your little one. I’ve created a list of stores that carry a range of preemie clothes – both online and in stores to help you on your search.

Here are some tips to make buying preemie clothes easier:

1. Check with the hospital. Every hospital has a set of guidelines about when your baby will be allowed to wear clothes. It is usually based on weight, how your baby is doing and whether or not they are in an open crib. Some hospitals also have specific rules about what types of clothes are allowed for your baby. For our son, the hospital required all clothes to have snaps down the front so that they had easy access to his wires if need be. For our daughter the hospital didn’t have any restrictions on what she could wear. So before you go and spend a bunch of money, find out the rules.

2. Your baby’s size – Although there are some companies that make clothes to fit micro preemies (1 – 3 lbs), most hospitals prefer that babies remain in only a diaper during that critical growth period. Unless your hospital allows it, I wouldn’t bother purchasing clothes in this size range. On the flip side, even if your baby was born in the 4-5 pound range you may still want to purchase some preemie clothes to start because the 0-3 month size can be quite big for babies that size.

2. Your baby’s growth – All babies grow at different rates so take stock of how your baby is doing before you buy a bunch of clothes. Our son was a slow grower so he fit into his preemie clothes until he was about 3 months old so we got a lot of use out of them. Our daughter was in the NICU much longer and gained weight a little faster so she only got about 1 ½ months use out of her preemie clothes.

What type of clothes are best?

Regardless of your hospital’s rules, clothes with snaps up the front are easiest in the beginning. Onsies and sleepers are probably all you will need until your baby comes home because they will still be spending a lot of time bundled up in their crib or isolette. Once they get home it is up to you however keep in mind any special requirements your baby may have including an apnea monitor, feeding tube, etc. that might limit their clothing options.

Where can I buy preemie clothes?

Many stores are starting to offer preemie sized clothing which makes it much easier to find things for your little one. Major stores including Babies R Us, Gap, Gymboree, Carters, etc. have begun to come out some preemie lines however they aren’t always available in the stores.

Here is a list of online only and regular retail stores that offer preemie-sized clothes. Please leave a comment if you know of any other great stores that people should check out!

Online Only Stores

The Preemie Store – They have a large variety of preemie clothes in a number of styles that are very cute and fun.

Nurture Place – They also have a lot of choices for preemie clothes including some great onesies that snap on the shoulder to make access to wires and tubes much easier.

Preemies R Us – Another great store with adorable clothes that are separated by category so you can easily find what you need.

The Shepard’s Cradle – They offer heirloom clothes and have a line of preemie christening outfits that are very pretty.

Retail Stores

Baby Gap – I don’t think a lot of their retail stores carry the preemie clothes but you can order them online. They have preemie clothes up to 5 lbs. and newborn clothes up to 7 lbs.

The Children’s Place – They offer clothes that are sized for babies under 7 lbs. Both their online site and retail stores stock this size.

Babies R Us – Babies R Us has offered a small section of preemie clothes for a few years now. They are usually separated by gender and include a lot of cute outfits that go beyond just onsies and sleepers. They also offer Gerber’s preemie shirts and onesies that do have snaps up the middle or side. Their online store also offers preemie clothes.

Carters – Carters recently added a preemie size to their line of newborn clothes. I’ve never been able to find any in their stores but you can buy them online. The website might tell you which locations carry the preemie line.

Gymboree – Gymboree carries clothes that are for babies up to 8 lbs. You can buy this size online or in stores.

Burlington Coat Factory – I’ve haven’t shopped here for preemie clothes but I have had several people tell me that you can find some clothes for babies under 5 lbs. Their website doesn’t offer much of anything so I would advise going to the actual locations if you can.

Walmart – Walmart carries a surprisingly large selection of preemie clothes that are well priced. This is a good place to go for onesies and sleepers, particularly if you think your baby will grow out of things quickly.

Getting Organized

Whether your baby is in the NICU or at home, it is important to keep all of your baby's medical information organized and in one place. I am not an organized person by nature however with both of my kids I quickly realized that in order to stay on top of their ever increasing amount of paperwork and information I needed to create a system that would allow me to organize everything in one place and be able to take it with me when we went to the doctor.
This was especially true with my daughter. At one time she was on up to 13 medicines. It would take 5 minutes just to list, spell and go over dosages with the nurse every time we saw a doctor (which is a lot). I put together a binder that has been an absolute lifesaver for me (and them!).




In the binder I have a section with contact information for all of the doctors, therapists, and medical supply companies we deal with. I also have a list of all medicines, dosages and a schedule of when they are given. Now when we go to the doctor, I just pull out the binder, turn to the medicine page and let the nurse write everything down. This alone saves a ton of time and energy. I also keep all authorizations for services in the binder - that way I always know that we are covered when we go to other appointments. Any paperwork that the doctor or therapist gives me goes in the binder as well. I also keep receipts for co-pays, medicine and anything else that might be tax deductible.

If you haven't already created a system for yourself, I would highly advise that you start now. The tinier the baby - the more paperwork they will have. The keys are that it should be expandable, simple and portable.

For those that don't want to go out and put it together themselves, I've created a binder that you can purchase. There are three sizes - 1", 1 1/2" and 2" binders based on your needs. Each binder has multiple copies of key pages that can be filled out including contact information, medicine dosage and schedule, hospitalization and surgery histories, etc. It also has a calendar for scheduling appointments and an envelope for receipts. Click on the Paypal store that is just under my profile for more information and pricing.

Once you have a system - use it! If all of your information is in one place than you and anyone else who is caring for your child will know how to find things quickly and easily.

Bath Time

One of the things that NICUs like parents to do is give their baby a bath. This is another great opportunity to bond with your baby and take care of him/her just as you would at home. Given the circumstances it can be a little nerve wracking but it's a great experience to have.

Just like with everything else, every NICU has a different approach to things like giving babies a bath. Some NICUs will have you do it a couple of times to ensure you know how to do it while others may have you set-up a regular bath schedule. Once your baby gets stable enough to have a bath, find out what the policy is so that you can build it into your visit time and expectations. If you haven't been offered the opportunity, make sure to ask about giving a bath. Nurses may not realize you haven't done it or that you want to do it.

A nurse should be with you the entire time when you first give your baby a bath. They will help you through the process so that you learn the correct way to handle your baby and give him/her a bath. Try to block out the rest of the NICU so that you can just focus on your baby. Have your spouse or a family member there to take pictures and offer support. Don't be afraid to ask questions - this is the best opportunity to ask, especially if your baby requires any special positions, do's and don'ts or products.

Bath schedule - if your baby is going to be in the NICU for an extended period of time, you may be asked to schedule when you will give your baby a bath. They normally like you to choose specific days and keep that schedule as much as possible. Make sure to ask about timing - what is a good or bad time to give your baby a bath, are there better days to do it, etc. You want to make sure that the days/times work for you as well so that you have time to enjoy the process and not feel rushed.

Some babies need more baths than other babies. For example, babies who breathe fast due to lung issues tend to be sweatier than other babies. When that happens, nurses may step in to give your baby a bath more often than scheduled. If they start giving baths more frequently and on days when you were scheduled to do it - speak up. Let them know that you had planned (and wanted) to give your baby a bath that day. Again, not all nurses will know your preference or schedule so let them know.

Good luck and happy bathing!

Other families

Having a baby in the NICU can create a very special bond between families who otherwise might never have met. It can be really nice to have someone else to talk to, share moments with, celebrate milestones, and worry together and have them truly understand what you're going through. Even though a NICU is very open, it is often hard to foster those relationships with other families.

Here are some suggestions to help find connections within the NICU:

1. Eye contact and a smile - just like in regular life, sometimes that is all it takes to get a conversation started.
2. The sign-in desk, family waiting room, and the wash sink are easy places to start a conversation because you can speak openly. Introduce yourself and tell them who your baby is.
3. Information - since families often visit at different times and babies get moved around frequently, give people that you meet your contact information or blog address. That way you can stay in touch easily.
4. Support groups - most NICUs have support groups. This is a great way to meet other families and share information about your baby and learn from others.

As nice as it is to meet other families, please keep these things in mind:

1) Every family is different - some families are only able to focus on their baby so they may not be ready to start a relationship with other families. Don't take it as a slight against you - they are just in a different place.
2) Babies face different challenges - Your baby may be doing really well while another baby is struggling. Even though a baby may look okay, they may be facing health issues that make it difficult for families to reach out to others.

Fun Project

My little one has been a bit under the weather the past few days so during one of her naps, I found this great little project that I instantly fell in love with. Scrapbooking celebrity Ali Edwards created this project on her blog. I decided to make it a little tribute to my preemies. On the butterflies I wrote my kids names and then words that I associate with them and prematurity.

This is a great little project for anyone to do. You can use a punch to create the shapes or just trace and cut them out. I used some left over paper scraps to create the butterflies and put them on with 3-D dots. Here are the words that I used:

Happy Care Miracle
Love Proud Journey
Patience Hope Tough
Strong Fighter Hugs
Tiny Milestone Balance
Special Kisses Thrive
Precious Baby Small
Early Little Joy

Knowing Your Baby

When your baby is in the NICU it is sometimes hard to feel connected to him/her. You can't be there the whole time so it's hard to truly feel like you are thier parent or primary caregiver........but you are. Believe it or not, parents still know thier baby the best even if they can only visit once a day. Although nurses may do more of the day to day things (especially in the beginning), you are the most consistent person that takes care of your baby. That also means that you will get to know your baby the best and you can use that knowledge to help take care of your baby. Here are some examples:

1) Reactions - Babies will often react to certain things in certain, predictable ways. If your baby always cries when there are loud noises, likes to be held a certain way or always quiets down when you start up the mobile - let the nurses know. If a new nurse is taking care of your baby, he or she may not know that vital information. This information will also help you when you transition your baby home.

2) Feeding - When you are able to participate in feedings, you will notice certain cues that your baby has. Maybe your baby seems to do better when he/she is laying on their side (or not). If you go to fast he/she may desat or have trouble swallowing.

3) Specific Requests - If you do or do not want nurses to do something than leave a note to let them know. For example, if you don't want your baby to be given a pacifier - let them know. If you have made a tape of yourself reading stories to your baby and want them to play it every day - let them know. If you can leave a note that is very helpful because each shift can easily see it.

Of course on the flip side of this, be open to the advice of those in the NICU. The nurses, PT, OT or any other specialists may have recommendations for you and your baby. Some will work and some may not but the more open and accepting you are to this information, the more information you will go home with.

Have Questions?

If you have a question or comment about anything mentioned in this blog or if you are looking for a post or information about a specific topic - let me know! Leave me a comment or feel free to email me: lifeinthenicu at gmail dot com.

I look forward to hearing from you!

Thanks.

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.

Insurance, Part 2

Did you know that while your child is in the hospital, he/she may be eligible for Supplemental Security Income (SSI) payments and Medicaid?

SSI makes monthly payments to eligible people who have disabilities. SSI eligibility is based on income so many people don’t qualify however when your child is in the hospital they are considered separately because they aren’t living with your family (so your income is not factored).

Here are some of the conditions that can warrant immediate payment of benefits:

• Birth weight below two pounds, 10 ounces
• Cerebral palsy
• Down syndrome
• HIV infection
• Total blindness
• Total deafness
• Muscular dystrophy
• Severe mental retardation (child age 7 or older)

Please Note: Even if your child has one of the conditions listed above, the state agency may finally decide that your child’s disability is not severe enough for SSI. If that happens, you will not have to pay back the SSI payments that your child got.

Here is the website with information and details about payment and eligibility. You can also contact your local Social Security office for information and instructions for applying.

In addition to SSI, your child can also be eligible for Medicaid. If your child is expected to be hospitalized for over 30 days, your child should qualify for Medicaid during the hospitalization regardless of your family income.

When is this most useful? Obviously if your family doesn’t have any insurance than Medicaid will cover the NICU stay. However Medicaid can also act as a secondary health insurance for babies already covered by your insurance. Take advantage of this if your health insurance doesn’t cover 100% of all expenses and/or if your insurance has a lifetime cap.

Here is a link with details and information about Medicaid.

Talk to your NICU social worker about these issues – they should have all of this information and details as they pertain to your state.

Questions to ask

I found a great article that contained a list of suggested questions to ask when your baby is first in the NICU. Based on your baby's condition they may not all be relevant however I think it's a great place to start.

1. What are my baby’s chances for survival, of facing various degrees of handicap, and of having long-term health problems?
2. What medical problems are affecting my baby now?
3. How can I get more information about my baby’s problems?
4. How are those problems being treated?
5. What side effects could those treatments have?
6. Are there reasonable alternative treatments we could consider?
7. How can I get more involved in my baby’s care?
8. What can I do to best nurture my baby?
9. How do I find emotional or spiritual support?
10. Can the NICU’s social worker help me with transportation, local housing, financial aid, or other practical problems while my baby is in the newborn ICU?

The complete article can be found here. It also has a great glossary of common terms, conditions and medicines used in the NICU.