Diary of a NICU Mom - NICU Survival Kit

I am finding that there is a list of essential things I think necessary to bring with you to survive the NICU. And I thought I’d share it for other families with new little ones in the NICU.

Must Have’s:

1. Unscented lotion - You will wash your hands a million times with a NICU baby,so dry hands come with the territory.
2. Hand sanitizer - To sanitize after touching items such as cellphones, books, or other items that carry germs.
3. Drinking Water - NICU’s are often warm, dry places, staying hydrated, especially for new moms is important.
4. Notepad/Pen - You will be inundated with terms, acronyms and numbers that mean things for your baby’s well being. (Click here for my NICU Dictionary)  Having something to write down all these things as well as the multitude of questions that arise is really helpful.
5. Distraction material - At times, you might not be able to hold your baby. Sometimes, not being able to hold your child is really stressful. Having a book, craft project or something to keep you occupied can provide a respite from the beeping monitors until you can put your little one in your arms again. 

 My NICU bag, with bottles, milk storage, pump parts, water, hand lotion,
pen and paper for questions and sketchbook. 

Nice to Have's:

1. Layers - Did I mention NICU’s are warm? Also, if you want to kangaroo hold, having layers of clothes you can remove or add helps.
2. Pillows - While our little ones are not very heavy, when they have tubes and sensors going every which way, you find yourself sitting still a lot and a pillow can help prevent achy arms/backs.
3. Receiving blankets - having something from home (If your NICU allows it) like receiving blankets gives the familya great sense of normalcy. Even if you can’t have toys or gifts in the isolette, the receiving blankets can be used as preemie sheets and really can personalize your baby’s first room. Later, you will be able to swaddle your baby in them!
4. Cameras - since your baby isn't at home it is nice to be able to capture moments to share with friends and family... or even just to memorialize the time for you. 
5. Preemie hats - the little one's heads get cold, many hospitals will provide cotton caps, especially if they are on CPAP (They pin the tubes to the cap). Give your little one a gift and make or buy teeny preemie hats!

Must Have’s for the nursing/pumping mom:

1. Your traveling pump part kit - flanges, tubing whatever you need to affix to the pump.
2. Storage Bottles/caps - Most NICU’s can provide these free of charge.
3. Nipple cream - lanolin creams or coconut oil are good for keeping skin soft and prevent skin from drying or cracking.
4. Paper/pen - Especially if you are exclusively pumping, keeping track of the time/quantity is helpful to keep track of your schedule and trends of production.

This is the most basic list I could come up with. If you have things you found helpful please let me know!

All our love!

Diary of a NICU Mom - NICU Dictionary

In our time in the NICU we have been inundated with terms that deal with our daughter's care. Initially, we knew little. but each day we would ask more questions and each day we would get familiar with the words to help us understand how she was doing.

I thought it might be helpful to list words with which we became very familiar. I'm obviously not a doctor, so if you have questions, please contact your neonatologist, pediatrician or NICU nurse. 

There is additional support on the March of Dimes NICU website. 

• Bilirubin – is a byproduct of red blood cell breakdown. In preemies, this presents visibly as jaundice. Depending on the severity of the jaundice, your baby might look yellowed or even bright red. This can be easily treated with photo (light) therapy.
• Chest Tube –a flexible plastic tube that is inserted through the chest wall, used to relieve pockets of air (see Pneumothorax).
• CPAP – (Continuous Positive Airway Pressure) is a machine that provides constant mild air pressure to keep the airways open

(CPAP tubes in the nose and along either side of the face.)

• Emesis -vomiting
• Gavage –using a tube to feed a baby too young or too ill to be bottle fed. (a G-tube is inserted through small abdominal incision, NG, or Nasogastric is inserted through a nostril and down into the stomach.)  
• Hyperbilirubinemia – severe jaundice
• Incubator – an enclosed bed used to maintain the environment necessary for newborns and preemies, including temperature and humidity.
  

  

  "Giraffe" brand incubator covered with a quilt to reduce ambient light

• Intubation –(or tracheal intubation) is the insertion of a tube to facilitate ventilation for patients who are unable to breathe on their own.
• Isolette – synonym for incubator.
• Kangroo Care (or Kangaroo Holding) –holding your baby skin to skin to help regulate their heart rate and temperature.
  

  

  Holding baby skin to skin. 

• Necrotizing Entercolitis –(NEC) tissue death in the bowels of premature infants
• Neonate – a newborn baby
• Neonatologist –physician who specializes in newborn babies.
• NG Tube - Nasogastric tube is inserted through a nostril and down into the stomach
• PIC Line – (Peripherally inserted central catheter) IV access for extended periods of time.
• Peep –(Positive End Expiratory Pressure) pressure added to exhalation to assist in back end breathing.
• Pneumothorax – A collection of air or gas in the pleural space between the lung. It can cause difficulty breathing. In preemies, it is possible that the pressure from a “pneumo”, as they are sometimes called, can even cause the collapse of a lung. This can be found by x-ray and possibly resolved with the use of a chest tube.
• Residuals – undigested food left over in the stomach from a previous feeding.
• Retinopathy of Prematurity (ROP) - A disorder often found in premature or low birth-weight babies. It is thought to be caused by use of oxygen therapy and creates impediments to normal vascular growth in babies eyes. In severe cases it can lead to vision impairment, retinal detachment or in rare cases, blindness.
• Room Air - unassisted breathing of surrounding air. Average room air contains about 21% oxygen as opposed to cannula which delivers 100% oxygen.
• Spell –a desaturation of O2 in the blood or deceleration of the heart rate. This target number is usually no lower than 85% O2 and between 120 and 200 heartbeats per minute  

Also if you are reading this, you might also be interested in reading my NICU Survival Kit link. 

Diary of a NICU Mom - The Little Things

And I'm not just talking about our little ones

My daughter is one month and four days old now. She's growing and is a whopping two pounds and around eight ounces.

We went to a meeting for NICU parents Thursday and I couldn't help think about all the things my husband and I think about that most full term parents might take for granted.

As I said earlier to the group, my pregnancy which ended three and a half months early, felt like it was so panicked and rushed I didn't get to enjoy it. But now that she's here, it seems like the act of becoming a mother has been drug impossibly slowly. Things that are glossed over in the first hours of a baby's life experience have been stretched out over the course of weeks for us.

So I thought I'd give an idea of what little things make our NICU experience different and still special for us.

My sweet embraceable you:

As an example, I know that most parents either never take notice or lose track very early on how many times they've held their child. Not so much for me. I wasn't able to hold our daughter until she was ten hours old. It was emotional, scary and wonderful to have her laid on my chest for the first time after a very long day and amid a sea of preemie worries.

I know that as of today, I have held my daughter thirteen times since she was born. The first two times was only for a half an hour each, the others were an hour. So since she was born a month and four days ago, I've held her for a total of twelve hours.

And last night was the first time I held her swaddled in my arms instead of kangaroo'ed at my chest.

For the first time I could hold her and see her face while I did. It was amazing!

Not many parents can tell how many hours they've held their child, I an truly grateful each time I have her in my arms.

The poo's the thing:

Never in my life have I practically begged to change a diaper! And yet on December 26th, twenty days after she was born, I jumped out of my chair when the nurse offered to let me change my daughter's diaper. And again, on January 4th. For me, being able to change my daughter's diaper even twice, is a huge deal for me. I can't imagine parents scrambling to get a chance to change a messy diaper, but there I was.

Turn around bright eyes:

Our baby was so early, her eyelids were still fused shut. So December 14th, when we went into the NICU and saw her little dark eyes for the first time, it was such a wonderfully sweet surprise. To see our little girl finally open those gorgeous peepers was a milestone that I think most term parents take for granted.

Itsy bitsy teeny weenie yellow polka dot onesie:

With all the monitors, IV's and machines attached to our little girl, she has spent most of her time wearing a diaper and a hat so they can attach a CPAP to her. As a new parent, you want to buy all kinds of little things for your baby to wear. Socks, onesies, little bonnets; all the cute tiny outfits that you see in the stores. But for preemies and even more so micro-preemies, there's a whole lot of nothing to fit these most tiny of newborns.

On January 4th, two days shy of her one month birthday, we showed up to the NICU to a sweet surprise. Our little girl was wearing (mostly swimming in) a preemie onesie! It was gray and said "My daddy makes me smile".

To see our little girl wearing something even if it was too big for her was so reassuring. Not only was it a small step towards normalcy, but it showed us that the staff was comfortable enough with her progress that they felt they didn't need to have immediate and urgent access to her veins and was well enough to not need to watch her lungs to see her status.


Little moments making it big:

All of these things seem so very small and insignificant for most new families. But for us and likely other NICU parents, they are huge milestones and signs that each day our child is growing and getting stronger.

These little things remind us we're making progress and are one more day closer to her coming home with us.

Much love to you all.