Back to School Time

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

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

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

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

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

Medicine

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

Social/Sensory/Specific Issues

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

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

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: Part 2

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

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

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

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

Here is an example:

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

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

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