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How to Protect Your Baby in the ICU

By Elisabeth Snell
Printed in Practical Homeschooling #96, 2010.

If you should ever have a child or grandchild in the ICU, here's good advice to help the little one survive the experience.

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Rhonda Barfield


INTRODUCTORY NOTE from Mary Pride, Editor of PHS: We realize that this is not, strictly speaking, a “homeschooling” article. However, as the mother of a NICU baby myself, I instantly realized what a godsend this article would be to anyone in this position. I urge you to save this article in case you, a family member, a neighbor, or a friend end up needing its advice.

I am the mother of an heart/lung bypass baby. In the time we had to spend in NICU (Newborn Intensive Care Unit) and ICU (Intensive Care Unit) we learned some things the hard way. I wish I’d had this list beforehand.

1 Whatever your baby’s condition, it will become much worse quickly if they catch a virus or bacterial infection which is very likely while in the hospital. You must be fearsome in protecting your child from unwashed contact. Doctors, nurses, surgeons on follow-up: ANYONE who enters your room must be asked to sanitize their hands in front of you. Post a sign that says “Please wash your hands before touching me.” Hospitals encourage insisting on washed hands, but often in practice you’ll sense frustration when you ask a doctor or nurse to sanitize again. They’ll often say “I just did outside the door,” but then they touched your door handle, which is a germ pit. Or they enter wearing gloves which might have been used on other patients, or at the least have touched your door. Often doctors and nurses think of gloves as protecting themselves, and don’t automatically think about the patient. After they’re sanitized, watch for:

  • Answering a cell phone call. Studies have shown this is a major way illness spreads. Pretend all cell phones belonging to anyone in your room have just come from a horrible disease-filled room, because they probably have.
  • Touching handles of drawers, light switches, faucets—anything like that is a germ touchpoint.
  • Touching their face (especially the nose) or their hair.
  • Instruments: be certain they sterilize the stethoscope, sonogram, blood pressure cuff, anything they move from patient to patient.
  • If they come in isolation gear (gown, mask, gloves or any component of these things) and your child isn’t in isolation—LOOK OUT. They’ve just come from a room where someone is confirmed with a viral or bacterial infection. Even if your child has an infection already, the child down the hall probably has a different one.
  • If anyone appears to be ill or having “bad allergies” beware. Most illnesses are contagious a day or so before the first symptoms show.
  • Limit people coming right after being in a store or crowd. Their clothes are so germy.
  • If someone goes out of the room and right back in after fetching a blanket or something, they must resanitize.
  • If anything falls on the shiny hospital floor, pretend it fell into a toilet because a hospital floor is worse. There’s blood, pus, feces, etc. all over the floor because the bottoms of shoes are carrying it in from room to room.

2 Ask questions. What is that medication? Why does my baby need it? Will it interfere with my baby’s heart rate/breathing/whatever your crisis is. Many deaths occur because the wrong medication (or the wrong amount) is given to a child. This is especially important if you have new staff on duty.

3 Keep everyone up to date on your child’s sensitivities. If you know your child is allergic or has a bad response to something (whether drug, shampoo, adhesive, whatever), post it in LARGE LETTERS on their bed in a prominent place. Don’t assume everyone knows because it’s in the chart. Be vocal about these things, because every new doctor or nurse will go back to the default drugs or treatment for the condition unless they are aware your child is sensitive. They don’t have time to read every patient’s chart from cover to cover before treating. Also, the little shampoo rashes and things are important to note because they can lead to the child being treated improperly for infection.

4 If you look at the swine flu deaths you’ll see a spike in deaths every weekend. There’s often a transition in staff, and they don’t know the child as well. If you have to be there over the weekend, keep someone who knows the baby there overnight.

5 Every time the doctors rotate (usually every two weeks) you need to meet the new doctor and give them history, allergies, any special things. Explain why you don’t use drug x, or why this normal treatment didn’t work well in the past. A lot of these things don’t get passed along.

6 If a doctor is, in your opinion, making poor choices for your child and will not listen to you, go to the floor supervisor and request a different doctor from a different team. This will not affect your nurses, usually. This does happen. The doctor may (probably will) come and try to pressure you, so make sure you have someone with you. We had many, many wonderful doctors, and one who wanted to experiment on our child with his own private theories of treatment instead of going the traditional route. When we argued because of the deterioration of our child’s condition, he came to “listen” but really just tried to sell us again on his course of treatment and admonished us for taking time out of his rounds every day. So we relieved him of the hassle of working with us, and were much happier with Doctor #2. After the fact, we learned other medical staff had thought his decisions were rash, but no one came and told us until we stepped up and insisted on a different doctor.

7 Go with your gut. While in the ICU we met a young mother who had a baby she thought from the beginning was very ill. She asked the doctor to transport the baby to the area hospital with the highest level ICU. The doctor argued with her and said she was a first-time mom and was being overprotective. Nevertheless, she insisted, but when the doctor called the other hospital for transport, he told them the baby was fine and it was just an anxious mother. So, the transport team took their time getting there and were furious to find the baby had declined so much that she was too unstable to transport. They had to work on stabilizing her for four hours before they could even move her. She was a very, very sick little baby and mom was right. Don’t worry about people thinking you’re crazy—you know this baby better than anyone else, and you are probably right. If no one will listen to you, call guest relations and ask for an advocate. Ask for a social worker to help you.

8 If teams of nurses are touring through to show off your baby’s high-tech equipment to other nurses and say things like, “We hardly ever have to use this,” or, “In my time working here I’ve only seen three babies on this,” odds are good you are in the wrong hospital for your baby’s condition and should get out NOW. If your hospital is consulting with other doctors at a larger hospital to figure out treatments, go to the larger hospital. Don’t worry that it’s far or that you don’t know how to get there. Usually the big hospitals are much more equipped for longer ICU stays and have things like showers for the families, beds to sleep in the room, a much smaller nurse-to-patient ratio, and more knowledge on treatments for your baby.

9 Don’t wait until things are going down to transport. If the baby may need more equipment, transport when the baby’s stable. Otherwise they sometimes die in transport. As the mom of a baby who required the very most life support you can receive, I was very thankful for this advice. I think it probably helped save my baby’s life.

10 Bring little snacks or gifts for your nurses and doctors. If you have other children post their pictures in the room. Make little signs for the baby. Bring in cute blankets. Whatever you can do to make it more obvious your baby is a person and not a very sick project, the more attention the child will likely get.

11 Do bond with your baby. Try to enjoy the little moments of happiness in the middle of all of this. DO TAKE PICTURES. If your baby heals up perfectly you’re going to want a chronicle of this terrible walk. If your baby doesn’t get better, you will treasure every single picture you have, tubes or not.

12 Sing to your baby, touch your baby—even if he or she appears to be unconscious. This matters. Often babies are given a paralytic to keep them from tearing out the tubes, but though they appear asleep because they can’t move, they can hear and feel. Ask for music therapy if the hospital has it.

13 Make eye contact as often as possible. Nurses are often doing something else while handling your baby and can’t make eye contact. Eventually after this “neglect” a baby will stop making eye contact when people talk. Combat this by touching and eye contact as much as possible. If your baby is “low stimulation” find out why and see if it’s actually helping. If the answer is, “Oh because all of the babies in this area are,” advocate for more skin contact.

14 Try to protect the baby’s sleep as much as possible. Being constantly disturbed can make a baby frantic and jumpy. Try to set aside some hours after a narcotic dose to let the baby sleep without disruption.

15 Wear a washcloth in your shirt without any perfume or lotions. Sleep in it, then leave it in the baby’s bed or cover baby’s eyes with it so your scent is with him. This seems to improve healing.

16 It’s OK to grieve. You don’t have to put up a brave front for everyone. It hurts to see your poor baby in tubes and drugs.

17 It’s OK to pray. We certainly did!
 
18 It’s OK to hope. Remember, you’re not the first parents to ever go through this. Other families have found the strength to handle this terrifying time, and you will, too.


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