Outside the ICU
"Please just tell us what is wrong, are my daughter and her cousins sick, what do you need to do to fix the problem?" Nikolas said.
"Let's sit down over there and we will tell you everything we know so far," Dr. Ramsey said, leading the group to the ICU waiting area.
"Now as you know your babies were just far enough along to live after being delivered. They have done surprisingly well, but they do have a slight problem. Monica should explain it to you in more detail, since it involves the heart," Dr. Wexler said.
"This is going to sound more serious than it is right away. What the babies have is what is known as a fetal heart valve nondisjunction. What this means is there is an extra valve in the heart that allows the blood to circulate between the left and right sides of the heart freely, bypassing the normal blood flow," Monica said, pausing for a moment.
"What does this mean, is there something wrong with their hearts?" Lucky asked.
"In full term babies this extra heart valve closes off and the extra pathway for the blood supply disappears within 6 hours of birth. However since your babies were 12 weeks premature, it will not close by itself, and the blood will continue to bypass the lungs, for the most part. This means that the babies although they appear healthy will develop what is called "failure to thrive" and they could have severe complications," Monica said.
"What kind of complications?" Zander asked.
"They range from starvation, blindness, learning disablities, deafness, mental retardation, spina bifida, cerebral palsy, and an increased risk of SIDS and sleep apnea which can be fatal," Dr. Wexler said, looking through her notes on FHVND (the acronym for the defect).
"Is there anything you can do to prevent this from happening, or fix the problem?" Nikolas asked quietly, upset by the news that his daughter could have any number of problems because he failed to keep Autumn safe enough to carry their precious gift to full term.
"There is a surgery which will close off the valve and sever the pathway for the blood to flow through, which will force the blood to go the correct way through the heart. There are a lot of risks of surgery as well, that's why we said that we had to do something soon, but even if we do something we may still lose one or all of the babies, especially with them being this early," Monica said.
"How soon can you do the surgery?" Lucky asked, fighting to keep the tears in his eyes from falling. He failed and tears ran down his face as he thought about how he would ever be able to tell Elizabeth that they might lose their son before she had a chance to get to know him.
"That's the other problem. We can't do the surgery yet, the babies are too small to be able to anesthetize them without causing undo strain on their tiny hearts. We have to wait until they are at least 3 pounds before we can do the surgery with less risk," Monica said.
"How much risk are we talking about, what are their chances with and without the surgery?" Zander asked.
"If we do the surgery now they have about a 50% chance, if we wait until they are 3 lbs or more it goes up to 85%, if we don't do the surgery they have about a 30% chance of surviving and only a 10% chance of not having complications," Monica said.
"How long will it take for them to reach 3 lbs?" Lucky asked.
"Right now the girls are 2 lbs 4 ounces and 2 lbs 2 ounces.The boy is 2 lbs 6 ounces. They have already gained an ounce each from their birth weight 2 days ago, so at that rate it could take from 3 weeks to a month maybe a little more to gain all the weight," Dr. Wexler said.
"Can they wait that long?" Nikolas asked.
"That's what we have to find out, I recommend monitering them very closely for the next week or so and seeing if they are gaining weight consistantly and checking to make sure there is little to no stress on their hearts," Monica said.
"Will you be doing the surgeries?" Zander asked.
"Yes, I am the only doctor who has been trained in open heart surgery on neonatal cases, I observed a FHVND closing operation during the last conference I attended," Monica said.
"Will you be able to handle the fact that one of your patients is your granddaughter?" Luke asked.
"I will have to Luke, don't worry, I won't let anything happen to them," Monica said.
"Will someone please explain this to the girls? They will wonder what is going on, they still want to see the babies, but we don't want to worry them without having all the facts, and this will go over better coming from a doctor," Lucky said.
"Yes, I will go explain what is happening to them before I go do rounds," Monica said.
"And they can go see the babies in the next few days or so, they had some pain tonight, and I would like to see them go a day or two without pain before I let them move around," Dr. Wexler said.
"Another thing you may want to think about is having the babies baptized, just in case something were to happen, I can call the hospital chaplin if you want to have it done," Dr. Ramsey said.
"Let's wait on that, their mothers need to be there if they are going to be baptized, and we haven't picked out a name yet," Nikolas said.
"I agree, even though we have a name picked out, Elizabeth needs to be there," Lucky said.
"Just keep us updated on their condition," Zander said.
"We will, and I will go talk to the girls now, don't worry, we will do everything we can," Monica said.
"Boys, I know you are eager to get back to your fiancee's, but please sign these consent forms for the surgery, that way we will have everything set up beforehand," Dr. Wexler said.
Lucky, Zander, Nikolas signed the consent forms and then went outside quickly to gather their thoughts while Monica was inside talking to Elizabeth, Emily, and I about the situation. The boys came back about a half-hour later. Nikolas held me as I cried, all I wanted was something to go right for us.
A Week Later
Monica had been monitoring the babies heart rates over the past few days, as well as their weight and overall condition. At first everything had been going well but last night all three babies, especially Emily and Autumn's babies had started throwing unusual heart waves. These readings made Monica nervous because she had no way of telling how much damage was being done to their bodies, brains, or even their hearts themselves. The girls were now 2 lbs 6 ounces and the boy was 2 lbs 8 ounces, still 8-10 ounces short of the ideal weight, but time was not on their side. It was time to do the surgery, while they still were healthy enough to survive.
I was finally allowed to sit up for a short period of time each day, and I was eager to go see my daughter so that I knew for sure that she was still okay. Of course Nikolas had taken about 6 rolls of pictures in the last week and 3 videotapes, but I wanted to see her myself. Dr. Wexler promised that I would get to see her soon. Elizabeth, Emily, and I had been moved upstairs to the 7th floor and put in a room together. The room was quickly filled with balloons, flowers, cards, and drawings that Lulu had made of 3 little tiny babies playing with their dolls.
The next day the doctors told us that it would be a good idea to have the babies baptized because they had moved the surgery up to 2 days from now. Their chances of survival were 60% without some sort of complication. When we heard this we called the chaplin and set up a baptism ceremony for the next day. Now we just had to come up with names for our babies and decide who the godparents would be.