Saturday, March 12, 2011

Surviving the NICU

Do we really ever survive the NICU? I’m not sure. I think we cope the best we can. We, in our own ways find a new sense of normal. It may not be the normal we planned but it our normal and it just as good if not better.

I can’t count how many times I heard “I don’t know how you do it!”.

Well...that pretty simple really. You sort of don’t have a choice. Do you? You “just do it”.

As I would sit by the isolette for 8-12 hours a day, and  as the weeks slowly went by, I slowly, came to accept what was happening.

By simply accepting I somehow felt empowered. I remember thinking “I have no control over what’s happening to my son, but I do have control over how I cope with it. I can either sit here and do nothing or I can try to make this stay tolerable. Create 'my own normal' for the time I was here.
I needed a “plan” to survive the NICU journey.

The way I survived the NICU was to fill myself with knowledge. Not only about my child’s illness and care but also on how I would cope on a day to day basis. What did all those numbers mean on the machine he was on?  What did blood results mean?  How do I know if he's in distress, color of skin/lips, breathing etc..... What was I was going to do when we got home. What was my plan?

I started talking other moms in similar situations. Mom's I met in the NICU, searching online in forums such as there are now many Facebook pages out there that are a great support. I learned the ins/outs of home nursing. I learned how to deal with homecare agencies. I learned how to set up our very own NICU in our home! My original plan just wasn’t going to work.

I started to get get to know the ‘team’, the people responsible for taking care of my baby. To my amazement I realized these people were actually human! Who’d of thought! This also helped me become more comfortable when I couldn’t be there.

Then I started to create a temporary ‘home’ right there, in the NICU. I downloaded some music and books on ipod .

I also recorded  a my voice reading books on the voicememo app  so that voice reading stories so that when we couldn’t be there the nurses could play the recorder he could hear our voices. Our personal favorite books were  were The Little Engine That Could and Oh, Baby, the Places You'll Go!

 I brought in clothes and dressed him up! (that is, as much as the nurses would allow me to).

We bought the Tiny Love Classic Mobile (This was his favorite, he went through 3 of them! To this day plays with little monkey and frog).

A boppy pillow, so that he could sit up and look around.

A portable baby swing. For days when he could get some soothing movement other than having to just lie there.

NICU crib art is something new and fun.  Check it out!

Keep a Journal  download My Preemie App!  this is a great way to vent, reflect and keep track of how far your baby has come.

I was also in touch with the child-life specialist within the hospital. They have toys and will take the time to play with your baby when you aren't unable to be there.

Spend as much time in the NICU as you can.  Be with your baby, know your baby.  When you can't be there call and check in.  No matter how long or short your stay in the NICU is.  It's still quite the journey.

Aside from this, how did I survive the NICU? Well,I just took one day at a time. Prayed for patience, strength and peace of mind. Then I just let the rest be as it was meant to be.


Tuesday, March 8, 2011

Medical Disclaimer

Medical Disclaimer

The purpose of this website is to provide general information only.

I am not a physician or any type of medical professional. I am just a mom who has learned a lot through the years and wanted to share my experiences. The accuracy on this website is not guaranteed.

The information should not be used in place of the advice of a physician or other health care professional.
You should never disregard medical advice or delay in seeking it because of something you have read on this website.

Should you have any health related questions, speak your physician, NICU team or other qualified health care provider.

Wednesday, March 2, 2011

About Me

Hi! My name is Linda, I am married and I am a stay at home mom.

Our NICU journey began a little over ten years ago....

On September 28, 2001, at 30 weeks gestation, our son Collin was born. He weighed 2lbs 1oz, and was 14 1/2 inches long.

He was delivered via emergency c-section. I had developed severe pre-eclampia and HELLP syndrome during my pregnancy. He was IUGR (small for gestational age) and had RDS (respiratory distress syndrome).

He was immediately intubated and sent to our local Children’s Hospital (20 miles away). I wouldn’t see him again for seven days.

As most preemies do, he did very well his first three weeks of life (I believe they call this the “honeymoon phase”).

During week three, he was 3.5lbs. Doctors felt he was doing well enough to be transferred back to the hospital he was born in, to feed and grow.

Little did we know that our nightmares were only just beginning?

Collin contracted a staph infection (staph epi). He was re-intubated and transferred back to the Children’s Hospital NICU.

He eventually recovered from the infection, however he now had Severe Bronchopulmonary Dysplasia (BPD) and the NICU team was unable to be wean him from ventilator.

On December 18th 2001, Collin received a tracheostomy and g-tube.

Once at home and away from the hospital environment, Collin made tremendous strides. He started to reach some milestones such as sitting up and crawling.

He was off the ventilator by June 2003.

In August 2003 Collin was decannulated. He just loved the sound of his voice (and so did we) and talked in sentences rather quickly!

He started walking in January 2004 he was 2yrs 4mos (ironically the same day he came off Oxygen).
In August 2004 we no longer required home nursing.

Collin started eating 100% orally (yes, the feeding journey was long) by June 2010, no longer requiring the use of his g-tube. His g-tube stoma was surgically closed in September 2011.

As a result of his BPD, he developed exercise and cold induced Asthma and still Collin does require his flu shot yearly.

How is he doing today?
He has had many specialists that follow hi through the years.

He  is now a teenager, who is quirky funny teenager, w, and oh how I cherish the sound of his voice.  He also continues to be OH SO strong willed child! (just so you know that preemie "strong will" does NOT go away).

Of course this is just a short summary of the past 17 years.

I couldn't  begin to tell you in just one page all the ups and downs and emotions of our journey as it continues.

What I can tell you, is would I have change anything, probably, however,  I have learned so much about myself and about this unique world they call special needs, My son teaches me more about life on a daily basis than anyone could in a life time.

Contact Me

I would love to hear from you! If you have any questions, would like to comment on this blog or even share your story, contact me. Fill out the form below or email me at

Please remember that I am not a physician or any other type of healthcare professional. I cannot offer you medical advice or tell you what treatments should be used in the care of your child.

I am just a mom and I can offer you support and help you to learn as much as you can about your child's condition and get you through the toughest days.

For medical advice please talk to your NICU team.


Welcome to my page and congratulations on your new miracle! s/he is truly a miracle.

Chances are if you’re finding the Nicumama website you have a preemie or a baby in the NICU (neonatal intensive care unit) or a special needs childs.

So...your pregnancy and/or delivery wasn’t as “perfect” as you imagined or as everyone said it was going to be. I know. I get it.

Collin 2 days old
Over 17 year ago our journey started in the NICU. I remember feeling so lost in every way imaginable. Overwhelmed with the noises of all the machines and monitors that my baby was hooked up to. My eyes were constantly glued to those monitors NOT my baby.

Aside from my husband I felt as though the only people I could talk to were the doctors and the nurses in the NICU, (which isn’t a bad thing because you may find that some of these special people eventually become good friends) It happened to me!

Outside of the NICU, talking to family and friends was a bit tough. Most of the time I felt as though I was speaking a foreign language.

I remember thinking. " one will ever 'get' it".

The NICU can certainly be a scary and lonely place. Especially when you had imagined and had different plans for the birth of your child.

This is why I created

This blog was created all of you moms and dads, grandparents, aunts, uncles etc...who have or have had the NICU experience and beyond it.

If you are seeking some information, guidance or and reassurance then you have come to the right place.

Use as a tool, a source for information. Remember that knowledge is power! The more you know, the more in control you will feel (especially when you have no other control over what is happening to your baby boy or girl).

There will also be information on "the former preemie". After all your preemie WILL grow up and sometimes your NICU experience may not end after leaving the NICU.

Now, I know that there may be a lot of information that may not be covered this website. If you see something that you think should be covered and it's not on this blog contact me, If you would like to do a guest post, also contact me. 

All the best on your NICU journey and beyond,

Tuesday, March 1, 2011

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