Hospital tours and consults

On Friday, September 5, Tim and I drove to Children's Mercy Hospital in downtown Kansas City. It was about a 20 minute drive. We had a consultation set up with the first of the two pediatric cardiovascular surgeons, Gary Lofland, MD, section chief, at 9:30 a.m. The meeting was held in an exam room! I guess they don't have conference rooms like they have at the private clinic.

Dr. Lofland appeared, along with one of the nurse practitioners from surgery. He had the notes from Dr. Rajan in his hand, and went over with us again the diagnosis, the plan, and the prognosis. He told us that the surgical team meets once a week on Friday mornings to go over the patient cases and discuss schedules, staffing, etc. He assured me that if the baby came in afterwards, that we wouldn't have to wait a whole week before they would talk about the baby's case! If the baby comes in during regular business hours, they will schedule the echo as a matter of routine, and someone on staff would be assigned. If the baby came in during the night, they would probably wait until the morning to have the echo done, unless something was just not going right.

He said that the first shunt surgery was pretty noninvasive, compared to the Norwood Procedure which requires open heart surgery. I asked about time frames, and he said pretty cavalierly that the baby would probably be home within ten days. Baby would only need to stay in the PICU (pediatric intensive care unit) for a short while, until stabilized after surgery. He said they do these surgeries a lot, that as long as baby is on the prostaglandins (from the IV), that they consider the surgery elective. The shunt surgery will only take an hour. We asked about donating blood for the surgery, and he said with the short time frame involved, that this is not a good option for now. He said perhaps in the future, when there is time to have the blood processed, we could consider it.

We asked about storing the baby's cord blood in case in the future it could be used to help baby. His response was an emphatic yes. Although so far the future situations are unknown, and what medical science can do, he felt that it was a good thing to have in case they can do something useful with it. (Cord blood storage is very expensive.)

Another thing he mentioned was the time frame for the third surgery. They want the child to weigh 30 pounds for the Fontan Procedure. So that is why it could occur between 3 and 4 years.

We then met with Barb, a clinical nurse specialist. She brought us up to the NICU (neonatal ICU) for a tour. The patients are in "pods" rather than rooms. But each pod has a curtain that goes around it, with a couple of chairs in addition to the bassinets and medical equipment. We saw a few parents holding their babies, tightly swaddled. But we saw many more babies alone in their pods. Some were tiny, some bassinets were covered by a blanket, there even appeared to be some type of surgery going on in one pod. It made me a little teary-eyed to see all these poor little babies. But the area was quiet, new looking, and orderly. Barb showed us some parent waiting areas where we can stretch out and eat, the breast pumping room, an area with showers. She briefly showed us where the nurses' office was, it was so cramped! But the women we met were very friendly. Barb told me that I will be given three free meal coupons each day for the hospital cafeteria so that I can be sure to get proper nutrition while breastfeeding. They will loan me a hospital-grade pump which I can even bring home with me.

Barb also told us that there is a Ronald McDonald room for families with children in the NICU. She said volunteers bring in a hot supper about four nights a week that we can partake in.

Barb then had us meet with a neonatologist. This is a pediatrician who specializes in premature babies and newborn infants. They work for several weeks "in rotation" at the hospital in addition to their own private pediatric care practices. The doctor we met was happy to answer any questions we had, and talked a bit about how they handle the incoming babies before surgery. She was with us for half an hour. We were pretty impressed.

Then we met with a social worker who is on staff at Children's Mercy. She gave us a "care package" from the Congenital Heart Defects Families Association. (We opened it up on the way home and it had a homemade blanket, stuffed animal, crayons, toiletries, etc. It is probably usually given to parents who are checking in with their CHD babies.) She told us about the resources available to us, and how she will assist us with getting support. She was very nice.

After our meetings, Barb brought us down to the PICU. They have fewer rooms in the PICU. She was able to show us one room where they had a baby in a bassinet attended by a nurse. In the PICU, the ratio of nurses to patients is one to one. They remain in the room at all times. There is space for two visitors to be with the baby, no more than two are allowed, and one has to always be one of the parents. (I forget if the NICU allows two or three.)

Barb then brought us up one of the towers to try to show us a typical private room. This is where baby goes after being discharged from the PICU. Earlier in the meeting, Barb sort of laughed when I told her how the surgeon had thought we would be discharged from the hospital after ten days. She said that was really wishful thinking. In most cases, baby requires some time to learn to get proper nutrition. This is usually two to three weeks following surgery. The social worker told us that was pretty standard for 90% of the patients. She said 5% recover amazingly well, and require very little time in the PICU and go home right away, the other 5% have complications which require much longer stays (or worse, presumably).

The private rooms look much more comfortable. There is a twin bed sized window seat/bed, chairs, and the baby's bassinet and equipment. The rooms, I think she said, come with refrigerators. She said they try to move the patients who will be there for more than a week to the further ends of the hallways (where it is quieter), but it all depends on availability.

As we left, Tim and I agreed that the hospital was really nicely put together. The entry is very cheerful and colorful, there seems to be plenty of places to eat, there is a busy gift shop, and parking was not bad. It is also very secure; each person entering has to show a photo ID and sign in at a single guard's entrance. We never had to wait, but we were told sometimes the line is half an hour long! One thing that made Tim pretty sad were the memory quilts they had on the walls. These feature squares made by family members that showed a child who has passed away.

Two weeks later, we met with the second surgeon, James O'Brien, MD, Assistant Professor of Surgery. (Barb had told us in the previous meeting, "I love Dr. O'Brien!") This was a quick visit. We have explained to everyone that we wanted to meet with both surgeons because we just don't know who will get assigned to do the surgery, if baby ends up coming during the holiday week (Thanksgiving), and one is on vacation. Neither surgeon thought it was odd, but I think at first Dr. O'Brien wondered if he'd just be repeating everything Dr. Lofland said. Although he did to some extent, he also showed us something new and told us a few things we hadn't heard. It was a worthwhile visit. The thing that seemed new was that he showed us a picture of a left ventricle which he said was barely formed, so very small. He also said that they still didn't know how well formed the veins and arteries leading to and from the heart were in the baby. The better off they were, the stronger baby's heart would be able to operate.

The following Wednesday, the 24th, we returned to my OB's office for the second fetal echo cardiogram. Dr. Rajan again used the ultrasound to examine the baby's heart. While we were in the waiting room, it was pretty funny, baby did not stop moving! There were even hiccups! But when we got into the scanning room, baby laid perfectly still for the most part, chest up, a great position for Dr. Rajan to examine the heart, arteries, and veins. Afterwards, he met with us in the conference room and told us that the diagnosis has not changed. All the structures are the same as what they observed before. He did note, as Tim was also able to observe, that the blood flow in and out of the heart was very strong. So baby has good veins and arteries, and that is good news.

Dr. Rajan noted that we had seen both of his surgeons, and wondered if we had a preference. I actually have none, I thought they both seemed pretty similar. Tim, however, thought Dr. O'Brien was more outgoing. Dr. Rajan said that if we had no preference then they will just simply schedule the surgery with whoever is working that day. (Or something like that.)

After the conference was over, the hospital coordinator (who is due three weeks before me!) brought us on a tour of the St. Luke's NICU. She also showed us the Labor & Delivery ward, so we got to see one of the smaller rooms which was empty. All rooms are private. Things were more dated than the children's hospital, but she said the interior rooms were much larger and comfortable. They fill those up first. Most women labor and give birth in their rooms. But due to our special situation, I will only labor in the comfortable room, then be transferred to an operating room (for vaginal births) where they have room for a lot more people and equipment. That was disappointing, but not unexpected. The labor rooms have private bathrooms, CD/VCR/DVD players, birthing balls, and couches. There are waiting rooms and even a little snack area for expectant fathers where they can go and get (for free) mini deli sandwiches, drinks, and snacks. I actually had a Nutrigrain bar from one of the mothers' snack carts since I was very hungry at the time. We still have to go back for a formal tour of L&D, and do all the pre-admitting paperwork. But it sure was nice to get a glimpse of where baby is going to arrive!

The NICU looked very much like the PICU at Children's, with glass walled rooms and curtains. There are two bassinets per room. She showed us the ventilator that baby will probably be put on. (They call it "aspirating.") The transport group from Children's will stay with the baby in the NICU until baby is stable on their own equipment, then wheel baby out. If I haven't seen baby yet, they will bring baby to my labor room where I will be recovering. It was suggested a few weeks earlier that Tim could stay with me for the first hour after baby leaves since they will need that time to prepare for baby's arrival in the NICU at Children's.

I had meant to write about all this as it took place, but I got lazy! I am hoping I remember most of what we were told, although I know we've probably forgotten plenty.