Brad and Elisa Hill spent the first 9 and a half months of their daughter Eden’s life in the hospital. Together they learned the best ways to survive life in the ICU during an extended inpatient stay.
A parent’s survival guide to navigating a long hospital stay
My wife and I had a measure of difficulty in getting pregnant. After three years, 14 intrauterine insemination treatments, two rounds of in vitro fertilization and a surgery, we were overjoyed to find we had been blessed with a pregnancy.
Initially we were told to expect twin girls. We told our parents and enjoyed the pregnancy. After a few more weeks, we were told that both embryos had stopped developing and we were not going to have a baby. Then a week later we were told one embryo would survive. At our anatomy ultrasound, our doctors found pulmonary artresia, which is a heart defect. We were told she would need surgery, but that it wasn’t a huge deal. However, at seven months, we got the news that our little girl also had a severe case of major aortopulmonary collateral arteries (MAPCAS). The doctors gave her a 60 percent chance of surviving birth and only a 50/50 shot at living more than a few years if she did survive initially.
After birth we were told to expect a hospital stay of two to three weeks. The estimates of the length of our stay grew longer and longer through reintubations and surgery. At day 64, she was stable and ready for her unifocalization surgery. We tried not to develop an expectation for when we’d get home.
We spent more than 9 and a half months in the PCICU in the first 10 months of Eden’s life. Rolling with these changes in expectations and staying mentally, emotionally and physically healthy was challenging.
Early in our stay I was discussing how to cope in a healthy way with a doctor on rounds. I said “You’ve seen thousands of families go through this process. Some do well, some don’t. What are the traits of families that do well versus families that don’t?” I asked this question to many doctors and nurses. The following are the habits my wife and I setup that we felt were helpful:
1. Take shifts
Each day of the week we had shifts to be with our daughter. With this system we also decided that if a person couldn’t take a shift that was OK. We were not going to beat ourselves up if we couldn’t make it. We found that we had to wean ourselves more and more the longer we stayed. By week 8 inpatient we were doing 3 hour shifts per person per day with most of the weekend covered by one of us so the other could take time off.
2. Make time to exercise
Each day we made an effort to walk outside for 45 minutes. Most of these walks ended at an ice cream shop.
3. Have a daily huddle
Each morning, we both would say a prayer together and then ask if the day’s shift was doable. Some days, we needed more rest; some days, one of us could take the other’s shift.
4. Remove any non-critical tasks
We burned through some savings to keep the day to day tasks off our plate. We outsourced tasks like cleaning our home, walking our dog, washing our clothes, used Uber Eats for meals and other tasks of that nature.
5. Prioritize sleep
Both of us felt an alarm clock should not be set unless absolutely needed for an event like a surgery. Some days we would sleep longer than we usually would. This was probably due to emotional fatigue.
6. No alcohol
I don’t do well with alcohol when I’m under lots of stress. This decision helped me to keep my energy high, allowed me to drive anytime needed and kept my emotional state more settled with fewer peaks and valleys.
7. Foster good communication
We set up a weekly consult with our medical team so we could sit down for 15 minutes and get a complete picture of what the whole medical team was thinking for the strategy for the week. This helped us understand the reasoning behind the day to day decisions being made in rounds.
8. Consider counseling
During the 3rd trimester of our pregnancy we began meeting with a counselor on a weekly basis. We’ve continued this throughout our ICU stay as it’s a great way to be proactive with our mental states both individually and as a couple. Depression is very common for mothers with children in ICU who are also under the stress of postpartum changes. We specifically focused on the threat of depression and are ready to adapt if that illness strikes.
9. Guilt management
We found it difficult to not feel a sense of guilt during this process. Guilt for not being at the hospital. Guilt in the way we compared ourselves to other family’s “successful” or “normal“ pregnancy. Our response to this was in trying to intentionally recognize our feelings and address them with each other in an attempt to manage and reduce our negative emotional responses.
Public Relations (how to deal with the docs)
One the hardest aspects of this process was dealing with the almost complete lack of control in one of the most important things we’ll ever do. Of the few things we could control the most valuable was how we influenced the medical staff though our behavior as parents.
The most important decision we made was to trust our healthcare team. When we thought about it we had two options, trust them or move hospitals. We accept that they are not perfect, they all have the same issues everyone does. Some are going through a divorce, drowning in debt, sick children of their own, etc. Also, on a day to day basis we considered some got very little sleep or had a long night the night before. We tried to tailor our communication accordingly. For example, if we wanted to have a long, meaningful chat about an issue our daughter was having we would find a doctor who was fresh, just coming on as opposed to one that was ending their 24 hr shift.
Many times we wanted to scream and yell. “Get someone in here!” “Why is the test taking so long?!?!” etc. We chose not to do that (as best we could) because it would alienate the medical staff. If they feel they are coming into a room with hostile parents it’s reasonable to think they are less likely to come in unless they need to. That said we choose to bleed off anger outside the hospital so we are perceived as friendly, helpful, engaged parents.
How the ICU Works
In our first few days in ICU we saw so many different doctors and nurses. We would make friends with a nurse or doctor, start to understand how they worked and how to work with them and then the next day we would have to start all over again with a new doctor and new nurse. It helped to understand how the doctors and nurses organize themselves.
Medical Staff Positions
There is a hierarchy of sorts to the network of medical staff in the hospital that may be a little confusing to sort out at first.
Attending – This is an experienced, specialized doctor. There are certain “boss” docs among the attendings that oversee the whole floor or wing or specialty.
Fellow – This is a full blown doctor who is putting in the time to get experience in a specialty. They are very good, but will often seek guidance and counsel from the Attending they are working with.
Nurse Practitioner – Boss nurses. They have some doctor level authority and would be analogous to a Sergeant in the Army. NPs are influential in that they often suggest the medical treatment strategy to the doctors who OK it.
Nurse – Backbone of the whole system. Nurses have a lot of autonomy and authority in how much pain (and other) medicine our daughter received. Nurses are the eyes, ears and hands of the medical team (95% of the day). They will escalate things if needed, issue warnings to the doctors about issues they see and generally be the tip of the spear for the whole team.
Attendings in the daytime work a minimum of 12 hours for 5 days in a row then work a continuous 30 hours and are on call for 2 days. So for example Dr. Name will be the attending for Mon-Thursday being present for a minimum of 12 hours (starting at 7AM). Then she will be present for 30 hours (Thursday night – Friday) and will be available for the following 2 days if she’s needed.
Fellows work 6 days on for 12 hours each day and then 7 days off. Their schedules can change in minor ways based on training and other factors.
NPs work (in general) 13 shifts per month. They sometimes pull overtime or have other factors that skew this number.
Nurses work (in general) 3 12-hour shifts every 7 days.
Rounding – “Rounds” are when the medical staff get together and talk about a patient. Nurses round with each other when they change shifts. In the nurse rounding they tell each other what to look out for and what type of meds and care they are providing. After the nurses are rounded the whole care team will round. This is when each Attending/Fellow/NP/Nurse will review each patient. They will discuss what the plan for the day is and it’s a good time to ask questions. In the rounds in the morning they will try to make headway on the patient. The rounds at night are usually a little less of a push to try new things and let the patient rest.
Our experience in ICU was the most challenging thing we’ve ever been through. We hope this document has been helpful in finding a few things that can help your experience be a little less stressful and a little more healthy and bearable.
Currently, Eden is thriving at home! She is thankfully exceeding expectations and we are on track to begin trials off her ventilator this spring. She’ll even be enrolling preschool this summer or fall!
The hospital photos in this blog post are part of the CHD awareness inititives of photographer Suha Dabit and World of Broken Hearts.