Hand to Hold's Official Blog: Written by Parents for Parents

Preparing for a Short-Term, Planned Hospital Stay

My son Jax was born at 23 weeks, 3 days gestation. He spent 93 days in the NICU. Luckily (and rather unusually), he did not require any surgeries while he was in the hospital. There were plenty of scares: heart ligation, laser eye surgery for aggressive and severe ROP, hernia repair, and more. But somehow, he skated by. We were very thankful!

But, now the surgeries seem to be piling up. Within the last 13 months, Jax has had five surgeries / procedures under general anesthesia. Thankfully, all of the surgeries were planned in advance and we we able to combine five separate surgeries into three short-term hospital stays.

I thought that a 93 day NICU stay had prepared me for Jax’s planned short-term hospital stays, but I was wrong. The experience was completely different.

Jax’s first surgery occurred when we were only two months out from his NICU stay – emotions were raw. We were terrified and very unprepared. It was a very long night.

I was a little more prepared, both emotionally and logistically, when Jax went in for his second procedure six months later. By the time Jax’s third surgery rolled around a month later, I finally realized that I was so focused on preparing Jax for surgery, that I had been forgetting to prepare myself!

Preparing for a Planned Hospital StayOne surgery is one too many for a baby. Sadly, many of us preemie parents know all too well what it’s like to worry about our children while they are under anesthesia. Planning ahead can help reduce anxiety and make the hospital experience less stressful.

Will your child be spending a night in the short stay unit of the hospital? Here are some things that helped us reduce the stress surrounding our child’s hospitalization. (Of course, you will want to follow all of the directions from your hospital and doctor for preparing your child for surgery.)

For You

  1. Bring a partner. Short stay is not like the NICU. You are expected to be there the entire time with your child (and you’ll want to be.) Arrange for another parent, guardian, or friend to come and relieve you so you can grab a bite to eat or take a walk around the block.
  2. Recognize your triggers. I knew that seeing my baby hooked up to monitors and hearing the alarms would bring back bad memories from the NICU. I prepared myself ahead of time by imagining the nurse unhooking the monitors when it was time to go home. This positive thinking helped me remember that the monitors were only temporary.
  3. Be open with the nurses about your triggers. I asked the nurses to turn down the sound on the monitors in the room and turn the screens so I would not see them. They were able to monitor Jax just fine from the nurses station and I did not have the added stress of staring at the monitors. By talking opening with them about my fears and triggers, we were able to work together as a team to make the experience less stressful.
  4. Do not bring a lot of stuff. Be selective in what you do bring. If you’re a planner like me (and even if you’re not!), make a list and have everything packed the day before surgery. Then you have time to fine-tune, if needed.
  5. Bring a reusable water bottle, caffeine, and a snack. It’s difficult to leave the room for an extended amount of time. Make sure you bring some thing to keep you nourished.
  6. Wear comfy clothes and bring slippers or flip flops. You won’t be leaving the room much and no one will care if you’re wearing sweat pants. I wore a shirt without a zipper or buttons so when Jax was snuggling up during recovery, he wouldn’t scratch his face. Slip-on shoes make it easier to quickly leave the room to go to the bathroom or get water.
  7. Bring your own comfort item and something to take your mind off of worrying. My friend brings her own pillow and blankets. I bring my Kindle loaded with mindless books, magazines, and games.

Logistics

  1. Try to combine surgeries / procedures into one event. Do you know of an additional procedure that your child will need later on down the road? Talk to the surgeons and ask if coordination is possible now. In our case, we combined laser eye surgery with hernia repair and ear tubes with a broncoscopy. Reducing the number of times Jax needed to go under general anesthesia was a high priority for us, especially with Jax’s history of extreme prematurity, Chronic Lung Disease, and bronchomalacia.
  2. Take the hospital tour. Since we had spent a lot of time in the NICU, we thought we knew all the logistics. We didn’t; we should have taken the tour specifically for short-term stays.
  3. Bring medical records that are related to the procedure. Even if your child receives regular follow-up care at the hospital where surgery will take place, often times departments do not share records in a timely way. Be certain to bring copies of recent test results, labs, and prescriptions.
  4. Bring a medication list with times of regular doses. Time flies (and stands still) in the hospital. A list will make sure no one forgets regular medications.
  5. Be prepared to be you child’s advocate. Tell everyone you meet, especially anesthesiologists, about your child’s history and your concerns about the procedure. This will help you feel more involved and will help the care team be more informed about your child’s unique history.

For Your Child

  1. Bring your child’s favorite food and special feeding supplies. If possible, pack your child’s favorite food. The hospital will offer food, but if your child has difficulty eating, you may not find something that he or she is willing to eat. Your child may want food “now” and won’t want to wait for the hospital food to arrive. Bring your child’s favorite bottle, nipple, or cup. We also packed disposable bibs and kid-size silverware for mealtime.
  2. Bring your child’s favorite toys. Depending on the procedure, your child may or may not be in the mood to play. Hospitals usually have toys available, but if you’re like me and are a complete germaphobe, you will not be comfortable with using them! I brought quiet, soft toys that were easy to clean like books, a stuffed animal, small foam blocks, and Jax’s favorite blankie.

I’m sure as Jax grows bigger, stronger, and older this will all change. Until then, I feel a little less stressed out preparing for his next planned hospital stay, which will happen in six months.

What are some other strategies you’ve used to make a planned short-term hospital stay more comfortable and less stressful?

Andrea Mullenmeister About Andrea Mullenmeister

Andrea Mullenmeister (MN) is a stay-at-home-mom for a little adventurer. Jaxson decided to meet the family while they were on vacation! After a terrifying helicopter ride, Jax was born at 23 weeks 3 days weighing 1lb 8oz. He suffered from severe ROP, humongous inguinal hernias, Bronchopulmonary Dysplasia and severe hyspospadias. After 93 days in the NICU, Jax came home. He is a happy and mostly healthy toddler with only minor issues. Andrea volunteers on a parent advisory council for "Jax's" NICU and shares their story to give other parents hope. She writes about the life of her micropreemie at An Early Start. You can also follow her on Facebook, Twitter, and Pinterest.

Comments

  1. This is an excellent article on the challenges of short-stay visits and surgeries for our precious preeemies. Luca has had a few himself now. I think coordination and communication is key in these circumstances. It is a wonderful suggestion and not always considered by the medical professionals to do two procedures at once if possible. You are your child’s voice and it needs to be a strong one every day! Another tip is to bring your pump to your child’s short-stay visit because, even if they are nursing, they may not be able to when coming out of surgery and sedation. Thanks Andrea!

  2. Excellent post! Great ideas.

  3. We recently underwent our son’s first surgery that didn’t happen while he was still in the NICU. It was such a different experience. I was shocked by how much I became part of the care team. Not that I didn’t want to, it’s just that in the NICU I felt more like a patient and part of a family. And had it not been for a friend who gave me a packing list, I would have been far less prepared for being on lock down 24 hours a day for four days. This is a great post. I’m sure it’s going to help lots of NICU families that unfortunately end up back at the hospital.

    • Thank you for commenting, Kathy! I was floored by how different the experiences were – I’m hopeful this can help other parents in our shoes! I’m glad you had a friend who helped you through your child’s surgery. I’m curious – what was on the packing list?

      • BATHROOM
        Bring all your toiletries plus things like eye drops or hand lotion as your eyes do get dry and so does your skin with all that hand washing.
        Bring a bin or tub to keep your stuff under the sink.
        Lysol. You have to keep all output to get weighed or measured. It can stink.

        BED
        Egg crate foam topper
        Sleeping bag or your own blanket (theirs are thin and lint-y).
        Your own pillow (theirs crunch because of the plastic).

        ELECTRONICS
        Tablet or laptop plus charger.
        Phone plus charger.
        DVDs
        ipod and speakers if needed
        White noise machine or lights machine if needed
        Indoor extension cord

        CLOTHES/SHOES
        Slip on shoes (do not walk barefoot in your room) or flip flops.
        Comfortable clothes.
        Sweater (hospital is cold).

        HIS STUFF
        Clothes, special toys, blanket.
        Any special medical stuff you think they may not have.
        Stuff to entertain him- mobile (theirs rarely work as far a moving or music), bubbles, shows/games on the tablet, mirror (they will have some), books, etc.
        Special medications/formula/etc. that he may need,

        OTHER
        Tape, Scissors, Paper
        -To block out the light from the window in the door if you’re in IMC or on the floor.

        Notepad
        -To take notes of nurses, who said what, questions you may have, if you need to take down concerning symptoms, names of visitors, etc.

        Snacks (ice, cups, spoons, refrigerator space are provided). Set up a little “station” of snacks and then some stuff in the fridge as well.

        Great list, right? It helped make our stay a bit more comfortable. I can’t take credit for it but I will certainly use it again if we end up back at that place!

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  2. […] procedure we knew Jax needed so he would only have to go under anesthesia once that month. We also prepared for a short-term hospital stay so nurses could monitor Jax as he recovered from the […]

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