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...

New Preemie Parent?

Are you a new preemie parent? Is your baby in the NICU or getting ready to come home. Make sure and check out all of the entries in the NICU section for helpful information to get you through a very tough roller coaster ride.

Advocate Series: Doctors

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

General:

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

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

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

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

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

Being an advocate for your preemie

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

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


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

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

Developmental Post #18

This developmental idea/project comes courtesy of my sister. She just had a baby (full term) and yesterday she was telling me about a little project she made for him. I thought it was a great idea that would work well for preemies so I wanted to share.

As you probably know, when babies are small they can only see black and white. They like to look at high contrast pictures. Images such as checkerboards, circles, simple animal faces, etc. are a great way to keep a preemie interested and looking around. Here are some great, inexpensive ways to provide your preemie with some fun things to look at.

At home:
1) Paper plate faces - my sister took a black pen and drew simple happy faces on some paper plates and then hung them on her son's swing. This is a fast way to give your little one something to look at.

2) Paper mobile - create a simple mobile to hang over your preemie's crib, swing, diaper changing area or bouncy seat. Click here for some easy designs and instructions. Or create your own - you don't need to be an artist to draw faces, squares and circles for your little one to look at.

In the NICU:
When my daughter was in the NICU I cut out squares of paper with simple black and white designs on them. I covered each one in contact paper and then taped them to the sides of her crib. She really liked looking at them and I felt good being able to provide something simple and fun for her while she was in the NICU. Ask your preemie's nurse what is allowed in your NICU.

Developmental Tips are part of a weekly series. To read more developmental tips and ideas for preemies, click here.

Giving back to the NICU

As every parent of a preemie knows, having your baby in the NICU is tough. I think almost everyone who leaves the NICU ends up feeling grateful for the care that the staff gave their preemie. I have talked to a lot of parents who want to find ways to give back to the their local NICUs and help other families who face the same situation. Here are some ways that you can give back to your NICU:

General Tip
Call your local hospital/NICU and find out what they need. Some organizations have specific rules about what they can and can not accept so it's easiest to call ahead and get the details. This is a great opportunity to find out what they might really need. It may spark a new idea that you hadn't thought of.

Here are some option for things that you (and your family and friends) can do for your NICU:

Making Items

Blankets and/or hats - many people make blankets or hats for NICU babies. Whether or you sew, knit, crochet or cut out some lovely fleece - making something yourself is a beautiful way to show someone you care. One of my daughter's favorite blankets today is one of the first ones she got in the NICU. We gave a lot of them back when she went home so that others could use them but that one we kept.

• Project Linus is a non-profit, national organization that donates blankets to hospitals. Check out their site for local chapters, donation information, patterns, etc.
• Need a pattern to get started? Check out this Preemie Knitting/Crochet Patterns directory for a ton of great ideas.
• Local groups - many local churches, auxiliary or other organizations make blankets or other items for hospitals so check your local area
• Not a crafter? Consider donating supplies or gift cards to craft stores so that others can purchase what they need to make items.

Memory Boxes - It is a sad fact that many preemies don't survive. No matter how short a life is, there are mementos to take home and cherish. Many hospitals provide memory boxes for parents. Memory Box Artist Program is a national program that provides boxes to hospitals around the country. If you don't want to go through them, find out if your NICU needs these boxes and get decorating. It will mean a lot to parents who are grieving.

Volunteering - Most if not all hospitals have some sort of volunteer program. Many of them include a program for people to come into the NICU and hold the babies that are there. Find out if your local hospital has this program and sign-up. Since this is often a popular program - some hospitals require you to do other volunteering within the hospital first.

NICU Support Group - Most NICUs offer some sort of support group for families. Find out if your NICU would like you to come in and share your family's story. Many parents find comfort in hearing other parents talk about what they went through. It's a great opportunity for you to share stories, advice, answer questions, etc. If your NICU doesn't have that type of program, let some of the nurses know that you are willing to talk to parents who are facing similar issues.

Donations - There are many things that NICUs could use - here are some ideas to get you started.

• Disposable cameras - some parents may not have a camera or may forget to bring one. Provide parents with disposable cameras that can be left at the bedside.
• Notebooks/Journals - Provide a small notebook for parents to keep track of how thier preemie is doing.
• Parking Passes - for hospitals that have paid parking, purchase passes for parents to use
• Magazines - bring in some of your magazines for the hospital/NICU waiting room. It can make the waiting time go by much faster if you have something to look at.
• Preemie books - buy a couple copies of your favorite/most useful preemie books and leave them in the NICU for other parents to read.
• Food/Drinks - some hospitals have a family room for parents and family members to wait. Purchase some snacks to leave in there.
• Transportation - some babies are transferred to hospitals far away from home. With gas prices getting higher every day, some parents have to choose between visiting their baby or paying rent. If you have the ability, volunteer to drive parents to and from the hospital so they can visit with their baby.
• Children's Books - Purchase some favorite children's book for siblings to read or for parents to read to their babies while they are visiting.

Do you have an idea for how to give back to your NICU? Please leave a comment.

Visiting the NICU

Once you bring your preemie(s) home, it's natural to want to visit the NICU. It's your chance to thank all of the wonderful doctors, nurses, RTs, etc. that helped your baby, you can say hi to people who became like friends over time and show off how well your preemie is doing. Most NICUs want you to come back and visit - heck, I've had doctors and nurses demand it. Here are a few things to keep in mind in order to make your visit a successful one.

Pick a good time - Call and find out the best time to come for a visit. Although the nurses and doctors are always busy, there are certain times of the day that are less hectic so try and plan a visit during that time. This will give more people a chance to see you and visit with your family. Remember shift changes - you don't want to be stuck in the waiting area for a shift to change.

Who you want to visit - If there are a few doctors and nurses that you really want to see, call ahead and find out if they are working. You won't be able to hit everyone all at once but if you can see a few favorites or primaries than you'll feel even better about the visit.

Set expectations for yourself - Visiting the NICU after your baby has gone home can be a bit hard. Just being there can bring back a flood of memories and emotions that you might not be expecting. Keep in mind that everyone is busy working so they may only get to spend a few minutes with you - don't' take it personally! Depending on how long your preemie was in the NICU, you may have to remind them who you are. Again, don't take it personally - they take care of a lot of babies.

Bring a recent photo - NICUs love to celebrate their successes so bring a picture or two of your preemie. That way they can hang it in the break room for everyone to see.

Closing the PDA

Many preemies often face an issue with their Patent Ductus Arteriosus (PDA).

The PDA is a blood vessel that connects the main vessel leading to the lungs to the main vessel of the body. When babies are in the womb, this blood vessel is open because babies aren't using their lungs to breathe so it allows most of the blood to bypass the lungs and go to the rest of the body. Once babies are born, the blood vessel will gradually narrow and then close after a few hours or days. In preemies, especially those who have had respiratory distress syndrome, the blood vessel may stay open.

Doctors may suspect that a preemie has a PDA if a preemie:

• needs more oxygen or help breathing when s/he should be needing less
• his/her breathing is more difficult or there is much more apnea
• the doctor or nurse hears a murmur (an abnormal noise over the heart)
• the baby's heart rate increases and/or the pulse changes

If a doctor suspects a PDA, they will give your preemie an echocardiogram to determine the amount of blood flow through the PDA. The echocardiagram is pretty fast - it looks like your baby is getting an ultrasound.

The doctors have several options for how to treat a PDA. They are:

• Wait. If the PDA is very small with only a tiny amount of blood flowing through it, doctors may decide to wait and see if it closes on its own.
• Medicine. Indomethacin is the most common drug used to try and close a PDA. It can affect some of your preemie's other organs so they use the smallest dose possible. Some doctors use ibuprofen.
• Surgery. If the PDA doesn't close with medicine (or on its own), then they will need to do surgery to close the PDA.

Hearing that your baby needs heart surgery can be very scary and nerve wracking. Here are some questions to ask if your preemie needs surgery:

• What are the potential complications? Some preemies have had their vocal cord affected by this surgery.
• How long does it typically take? It's always nice to know how long a surgery is supposed to last however there may always be extra time if something is delayed. Ask if a nurse or someone else can come and tell you if there is a delay so you aren't worried unnecessarily.
• Where do they do the surgery? Some NICUs are equipped to have the surgery done at your baby's isolette. Others require the baby to be transferred to another hospital.
• What do they do during the surgery? Ask the cardiac specialist to explain the procedure to you so that you understand what is being done
• What are the long term effects, if any?

Our experience with PDA issues
Both of our kids had PDAs. We were told our son would need surgery because he was only able to handle 1/2 dose of the indomethacin and the PDA was still open. After spending a long night worrying about the next day's transfer and surgery - we went to the NICU the next morning and after one last echo, they found that the PDA had closed on it's own. The doctors aren't sure how it happened but we were so happy and relieved. With our daughter, they came in to my hospital room on her 2nd day and told us that her PDA was very open and she was too small to receive the indomethacin so surgery was a necessity. She was the smallest patient that our heart surgeon had operated on so that added a bit of extra stress. Thankfully all went well and with the exception of a scar on her back, you would never know she had it done.

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 Home, Part 3

This part of Going Home is devoted to saying thank you. Specifically saying thank you to the doctors, nurses, respiratory therapists and other staff that took care of your baby during his/her stay in the NICU. Many parents have struggled with how to say thank you to the people who have done so much for their baby and their family.

The important thing to remember is to say "thank you." I know this sounds easy but sometimes in the excitement of the moment and the anticipation of bringing their baby home, parents can forget those two important words. Be sincere and let everyone know how much you appreciate what they did for your baby. Taking the time to say thank you will mean a lot to everyone in the NICU.

Sometimes people want to give or do something for the NICU staff as a way to say thank you. Here are some ideas and suggestions to get you started:

1) Write personal notes to each doctor, nurse, RT, etc. that really went the extra mile for your baby and your family. Let them know how much they helped you.
2) Bake goodies for the NICU staff - this always goes over big because seriously, who doesn't want to have a brownie or cookie every once in awhile? Tip: Make a separate batch and divide them up for each shift so that everyone gets to have some.
3) Gift cards - this is a great idea if you have a select group of people that you want to give a gift to (i.e. primary nurses, doctors, etc). Choose a place that either you know they personally like or a common store/restaurant that most people enjoy such as Starbucks, Target, etc.
4) Personalized travel mug - Buy a travel mug with a paper insert that can be removed. Print out pictures of your baby (it's even better if you have a picture of the recipient holding your baby) and then glue it to some nice patterned paper and slip it into the insert holder on the mug.
5) Bath products - Hospital staff have to wash their hands a lot so giving some nice lotion or body scrub would be very appreciated - by them and their hands!
6) Personalized memento that means something to you and/or them - when our son went home we gave soap and lotion to the women in the NICU but for the men we made personalized hockey pucks (we are big hockey fans) that had our son's picture on it. One of the doctors still has it on his desk four years later!

Once your baby goes home, try and stop by the NICU for an occasional visit. The staff love to see how the babies are doing once they have gone home. It's also another great opportunity to show them how much you appreciate what they have done. When you visit, bring an updated picture of your little one along so they can hang it in the break room for all the staff to see. On our daughter's first birthday we brought in brownies and a thank you note that had a picture from her first day and a birthday picture. It was a great way to show how far she had come.

Going Home, Part 2

As your baby's discharge/going home date gets closer, you will want to make sure that you know how to take care of your baby. The NICU staff is there to help you so take advantage of them while you can. They will have specific things they want to make sure you know how to do and will often start teaching you as soon as possible. I've included a list of basic care items that you will want to know as well as things you can do to ensure that you are going home loaded with as much experience and knowledge as you can.

Before your baby goes home, at a basic level the NICU staff will want to make sure that you know how to do the following:

1) Give your baby a bath. Depending on how long your baby is there, you will probably have already given your baby a bath during his/her NICU stay. They usually like to see you do it at least twice to make sure your comfortable and that your baby is safely handled during the process.
2) Take care of his/her umbilical cord - this will only apply if your baby is in the NICU a short time. Both of my kids were in the NICU for a long time so I never had to worry about this.
3) Feed your baby. The nurses will want to make sure that you are comfortable and familiar with your baby. They want to make sure you know to breastfeed properly and/or give a bottle correctly. You should get a lot of practice while your there and don't be afraid to ask questions. If your baby is coming home with an NG or G-tube than you will be trained in other feeding aspects as well.
4) Give your baby medicine. If your baby has to take any medicine, the NICU will make sure you have the right prescription(s) filled, know how to draw up the medicine, get rid of air bubbles, and give the medicine. Make sure you know what your baby’s medicine schedule is and if there are any side effects or issues to watch out for.
5) Take a temperature. One of the first things that you get to do as a parent is take your baby's temperature under his/her arm. Beyond giving you a chance to take care of your baby, the nurses want to make sure you can do this at home too.
6) Use a bulb syringe. This can be an important tool for you - I have to use it on my daughter almost daily. Even though kids usually don’t like the bulb syringe and they can be hard to use, they really do work. If you have never used one, ask the nurse to show you how.

Overnight stay
Many hospitals offer parents the opportunity to stay at the hospital overnight and take care of their baby by themselves. If your hospital offers this program and you can do it - take advantage of it! Sometimes you don't realize that you have a question or that you don't know how to do something until you are faced with the issue. If you aren’t able to stay overnight, another good option is to come in for a whole day and take charge of your baby’s feedings, diaper changes, etc. We had to do this with our daughter and it was a valuable learning experience.

Follow-up appointments
Before your baby is discharged from the NICU, the staff will let you know what follow-up appointments your baby needs to have and when they should occur. Some hospitals will even schedule these appointments for you. At the very least you should see your pediatrician 2-3 days after you come home so that he/she can examine your baby and begin taking charge of his/her ongoing medical care. If your baby has other medical needs then you will need to see other doctors as well. Make sure you know who the doctors are, what their specialty is and where their office is located.

Equipment
If your baby has to come home on oxygen, a nebulizer, apnea monitor, feeding tube or other equipment, make sure you get the equipment ahead of time and are trained on how to use it before your baby comes home. Normally the company that is providing the equipment will send out someone to train you on proper handling and usage. It’s a good idea to have both parents and/or all care providers be trained on the equipment at the same time so that everyone has a basic knowledge of how to use it and how to troubleshoot any problems that may occur.

Breathing
This is general tip for all parents but an important one if your baby has any breathing/lung issues. I would highly advise that before your baby comes home (or soon after), you watch him/her breathe without any clothes or blankets on for a minute. This will tell you what their “baseline” is so that you will know if they are having trouble breathing or are in repertory distress. We didn’t do this with our daughter and ended up in the ER a few days after she came home because she looked like she was having trouble. Turns out that she normally “pulls in” and breathes fast but we didn’t know that prior to her going home. It’s also a good idea to have the nurse go over basic signs of distress and what to do in those situations.

Oxygen
If your baby is coming home on oxygen, make sure that you are trained on how to use the equipment and what settings your baby needs. Tip: ask the RT to show you how to change the nasal canulla before you go home. The first time I had to do it I realized that I had no idea if the prongs were supposed to be facing up or down. Ask the RT what other information you should know so that you can be prepared. Find out the best ways to tape the nasal canulla to your babies face as well.

Feeding Tubes
The nurses will make sure that you know how to give your baby feedings through the tube. Make sure you ask them any and all of your questions. Try and take part in as many feedings as possible so that you are comfortable with the whole process from start to finish.

Most NICUs have a discharge coordinator who will help you through this process. As I’ve said above, don’t be afraid to ask questions. This is your best opportunity to get information from the people who have been taking care of your baby.

Going Home, Part 1

As soon as a baby arrives in the NICU, parents are thinking and asking about when their baby will get to go home. Depending on your baby and how well he/she does, this could vary widely. You'll notice that doctors and nurses are usually quite hesitant to put a date or timeline on when a baby will go home because they don't want to raise hopes and they never know what may or may not happen with your baby. This may mean that you don't get a lot of notice for the big day so try and get prepared in advance. Our daughter was in the NICU for 5 1/2 months and we thought she still had a couple of weeks left on the day they told us her discharge was happening soon. There was a lot of scrambling to get everything ready in time.

Each NICU (and each baby) has their own set of guidelines for when a baby will be discharged however here are some of the basic milestones that most babies need to pass:

• A baby can control his/her own body temperature and keep him/herself warm without the help of an incubator
• A baby can breathe on his/her own without the help of a respirator or ventilator. Some babies do go home on oxygen. There are limited cases where a baby will go home on a ventilator however that is fairly rare.
• A baby is growing well on breast milk or formula.
• A baby's overall medical condition is stable.
• A baby hasn't had an apnea or brady episode for at least 5 days.

Once a baby is getting close to going home, the nurses will start preparing you with a potential date. This date may change - try not to get to discouraged if they have to push the date out.

As your baby's discharge date gets closer, here are a few things you can do outside of the NICU to be prepared:

• Complete a course in CPR. Most hospitals and medical groups offer CPR classes so find out where and when you can go.
• Complete a course on basic baby care. If this is your first baby, it's not a bad idea to take a class on general baby care. Taking a baby home is a big deal and if you feel confident in the basics, it can make the whole process a little bit easier.
• Pick out your baby's going home outfit. To be on the safe side, you might want to pick out two in case of a spit-up or diaper accident. Pack your diaper bag so that you are prepared.
• Put the car set in the car. It's best to have a trained professional at a CHP or fire station check your car seat to make sure it is correctly installed. Many hospitals offer a class in car seat safety as well.

Car Seats

A car seat is one of the most important baby gear items that you will buy for your baby. There are a lot of options out there today with a range of prices and colors. When you have a preemie, you may have to purchase a special car seat that can accommodate a smaller baby. Most standard infant car seats today are made for babies that are 5 pounds to 22 pounds. If your baby is going to go home at less than 5 pounds than you need to buy a car seat that is built for babies that are 4 pounds or more. Even if your baby will weigh 5 pounds at discharge, you may still want to consider buying a smaller car seat because preemies are often still smaller than most babies and need the extra support. On the flip side, if your baby is going home at a regular baby weight than you don’t need to automatically buy a special seat just because they are a preemie. By the time our daughter came home she weighed 8 pounds and she fit just fine into our regular car seat. We did have to purchase a smaller car seat for our son because he came home at 4 ½ pounds.

When you look at car seats, bring a measuring tape. If your baby is small, than you will want to buy one that has a low shoulder harness position that is 8 inches or lower from the seat bottom to the lower harness strap. That usually means that the car seat will need to have at least 3 shoulder harness position options. You also want to make sure that the distance from the crotch strap to the seat back is less than 5 ½ inches so that there is less of a chance that your baby will slump forward.

Here is a list of car seats that accommodate babies that weigh 4 pounds or more:

Britax Companion – from four to 22 pounds
Chicco Keyfit 30 – from four to 30 pounds
Combi Connection – up to 22 pounds (no minimum weight)
Compass – from four to 22 pounds

Modifications – some hospitals will roll blankets to help your baby better fit into the car seat. They may put blanket rolls on both sides of your baby to provide support for the head and neck and/or a small rolled blanket between the crotch strap to further reduce the risk of slouching. There are commercially made inserts that can be purchased from medical supply companies.

Car Seat Test – Before your baby leaves the NICU, they will most likely go through a “car seat test.” The nurse will have you bring in your car seat and they will have your baby stay in it for a couple of hours to ensure that they don’t have any breathing issues while sitting in it. This is also a great time to make sure that your baby will fit properly into the car seat that you have purchased.

NICU Transitions

Transitions are often difficult. When we move from one phase to another, we have to learn new rules, procedures, and expectations. This is very true in the NICU. Depending on how early or fragile your baby was when he/she was born, you may go through several transitions while you are in the NICU. Here is a brief overview of some of those transitions and some tips on what to expect.


1) Critical - Babies who are born very small, early or with major medical issues are classified as critical. Especially in the beginning, these babies often have 1:1 care which means one nurse is assigned to only take care of him/her. When doctors do their rounds, they see these patients first. The doctors will usually check on these babies more often throughout the day. During this time, the nurse can easily focus on you when you visit since they are only taking care of your baby. You will most likely feel a heightened sense of urgency as your baby is in an important time that can often determine how well they do down the line. They usually have to do more tests during this time including x-rays, ultrasounds, lab work, etc. Don't be afraid to ask the nurses what tests are being done that day and ask for the results of those tests when you call or visit.

2) Once babies move out of the critical stage but still require a lot of support, they will often have 2:1 care - meaning that one nurse will take care of two babies. Doctors will see your baby after the most critical patients. The nurses are still very focused on your baby however they may have to work with the other baby in their care while you are there.

3) Feeder/Grower - After your baby gets past big hurdles such as ventilation, being able to take regular feedings, etc. they usually move into the stage called "feeder/grower." This is literally the state where babies need to eat and grow bigger so they can go home. Some babies start in this phase and go home from there. During this time your baby may be on 3:1 care - meaning one nurse has three babies. They will often put newer nurses or nurses who are covering from pediatrics with these babies. This may mean that the nurse won't be as familiar with your baby or any special requests that you have. Don't be afraid to let them know if they aren't doing something that is normally done. The good news is that this is usually a phase where the parents get to spend a lot of hands on time with the baby. You can hold your baby more, give them more baths, feed them regularly, etc. This phase is preparing you for when you finally get to take your baby home. The doctors normally round on these babies last so don't be surprised if it is mid-morning or early afternoon before they give orders for the day.

Once your baby is getting closer to going home, it may feel like your baby isn't getting as much focused attention as before. In a way - that is a good thing. The nurses are still making sure that your baby is getting what he/she needs but they are in a much more stable condition and getting ready to go home to you so they don't require the same level of nursing care. I remember one evening when my daughter was in the NICU and had been there for 4 months already. I came in late one night and one of the nurses had her out and was trying to play paddy cake with her. It was great to see her being treated like a "normal" baby and really made me realize how far she had come.

As your baby moves through different phases, try and get an idea of what to expect. How many babies is your nurse assigned too? What new things can I do as a parent? When do the doctors normally come around to see my baby? If you get moved to a new room or floor, find out if there are different rules or locations for things.

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.

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.

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