Explaining Spina Bifida: The NICU stay.

First things first…NICU stands for Neonatal Intensive Care Unit. Like ICU, but with an N in front. And you pronounce it, Nick-U. Don’t spell it out. Nick-U gives you street cred.

These are the “sickest” babies that need constant care an attention. Donovan was in the NICU for a total of eight days, which I think is about average for a Spina Bifida baby. Here’s a picture!

Here's da baby!

(Side note: There is a good chance your baby will have his IV through a vein in his head – see the picture on the left menu bar. Babies are small…sometimes there’s just no other option. So, prepare for seeing that because it’s like a punch in the gut.)

If you find out you will be having a baby with Spina Bifida while you are still pregnant, most NICUs will allow you to visit and meet with a social worker. They will explain policies and procedures. You will get to see what a room is like, and sometimes you even get to see the little tiny babies (most babies in the NICU are there because of premature birth and/or low birth weight). You will also be allowed to ask as many questions as you need, and if you are pre-assigned to a Social Worker, you can stay in contact as your pregnancy progresses.

For us, being able to visit the NICU left us with SO MUCH reassurance. The people there were so incredibly kind. The facilities were so well maintained and state-of-the-art. We knew what to expect ahead of time, so there were not surprises along the way…

NICUs have a lot of rules.

Oh yes they do. And they are for good reason, even though you probably wont like some of them. First, you must be very clean. VERY. There is a scrub-in station when you enter. They have very clear directions about how you are supposed to wash, and you must do as they say. They are watching. Scrubby, scrubby with soap and special one-use brush all the way up to your elbows. You probably want to bring some lotion with you, because at some point your hands will probably start to bleed if you don’t.

Second, visitors are limited. This is the rule you don’t like. Typically, a baby can only have two visitors at a time, and the parent has to be present. The visitor has to check in, get their badge, and then scrub in. Not a big deal, right? Well, what ends up happening is you have a family of four come to visit. You are still in your hospital bed recovering from getting knifed, so your husband will take them to see the baby. But they have to go back one. at. a. time. very. slowly. because remember…ONLY TWO VISITORS! So, if each person spends five minutes scrubbing in, and then 10 minutes staring at baby, you can see how long a simple visit can take. God forbid you need to pump during this visit (we’ll talk about that later). Different NICUs have different limitation, but at Winnie Palmer, anyone under the age of 18 is not allowed to visit, unless they are the sibling of the baby. Further, NO ONE (not even siblings) under the age of two is permitted. Because kids are dirty germ-carriers. We all know this.

Third, don’t you dare bring a stuffed animal in there. Because germs live on stuffed animals. And hair. And fleas. And lice. And, well, you get it. They can’t wash stuffed animals, so they just aren’t allowed. Same deal with blankets. Additionally, a lot of children born with birth defects that will need constant medical attention are automatically put on latex precautions. Latex allergies are often caused by repeat exposure to latex, so the theory is by preventing exposure from the get-go, the child will NOT develop the allergy. For this reason, do not bring a balloon into the NICU. We bought Donovan a really cute non-latex monkey balloon for Valentine’s day (he was still in the NICU) and we were not allowed to actually give it to him. Bummer.

There are more rules, but they vary by hospital, so just ask for a list. Because I promise they have a list.

Finally, here are some questions you may want to raise with your social worker. Some good things to think about beforehand.

  • Does your hospital have a special floor for NICU mommies? I didn’t even realize mine did this until about two days into my stay. But it made a world of difference. It is really, REALLY hard not having your baby with you 24/7. Like, excruciating. So, to have been on a floor where I would have been hearing newborns cry and their momma’s soothing them. It would have been like taking a knife to my heart. A floor with no babies, or at least a wing with no babies, is a huge help to your mental stability.
  • Do they have a lactation consultant specifically for NICU mommies? Mine did, but I didn’t find out until way too late. If your child is having their closure surgery the day of or after birth, you getting to hold them may be delayed several days. Donovan was three days old before I could hold him. This means pumping, and lots of it. Combine that with a c-section, and you pretty much have breast feeding’s worst nightmare. A lot of this can be helped with the assistance of a good lactation consultant.
  • Can you help with the baby’s care? Donovan’s nurses were excellent at letting me know what would be going on when. Because of this communication, we were able to give Donovan his first bath and his first bottle, and pretty much his first everything. THIS IS VERY IMPORTANT. There is so much going on that’s abnormal, that you really need some level of normalcy during such a hard time. If a nurse gives your baby his first bottle or bath because you didn’t know to make it a priority to be there at a certain time, you will be very, VERY upset about it.
  • Are there places for your family to stay while the baby is in the NICU? The sad fact is that you will probably be discharged and sent home before your baby is ready. That moment…that drive…that night…was the worst pain I have ever felt in my life. I was not at all prepared for it, which probably is why it was so intense. I felt like I finally knew it was possible to die of a broken heart. Four days after a c-section and I was CLEANING MY HOUSE to try and keep my mind off the fact that my son was not in the next room. He was still at the hospital. Without me. With strangers. We didn’t bother staying at the Ronald McDonald house because we were only about 30 minutes away from the hospital, but if you are any further than that, I would recommend it. Not being able to see them as soon as you want to is pretty hard. It would have been nice to be only about two minutes away.
  • If your hospital charges for parking, can you have a pass? This is also something I did not find out until D’s last day in the NICU. Winnie Palmer charged $4 per day. It adds up quickly. Most of the time they will give NICU families a pass that allows them to park for no charge.
  • How many SB babies do you see a year? This will give you an idea of how familiar/comfortable the staff is with the entire process. Don’t have super high expectations. I live in the Orlando area, which is pretty heavily populated, and stayed at a hospital specifically for babies (not children, BABIES) and they only see 10-20 per year.

That is all I can think of at the moment, but I hope it helps. If you are reading this and had a baby in the NICU, please comment with your own thoughts/stories/questions.

Overall, the NICU is an amazing place, filled with amazing nurses and babies and parents. But it is still very hard. Probably the hardest part of the entire process. It just feels so unnatural. But knowing what to expect ahead of time makes a lot of difference.

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2 Comments Add yours

  1. MoDLin says:

    This is a great post. You hit on a lot of good points. I remember seeing our little grandson with the IV in his head – what a shock!!! You’re right about there being a lot of rules but, as you say, they are for very good reasons so read up and stick to them. The only thing I would add is to keep a running, written list of your questions so that you won’t forget to ask about something when you see the next nurse or doc. We always had tons of quesions and often couldn’t remember them when we had the chance to ask.

  2. wifeytini says:

    These are great tips! Our son also happens to have Spina bifida and spent a month in the NICU! I would agree with most of what you wrote, except that my husband and I weren’t chomping at the bit to bathe him or change his diapers. We loved to hold and nurse him, but when he needed a diaper change, we handed him back to the nurses 🙂 Must be a second child thing! Hah! Thanks for your informative post!

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