I Have Had it With Waiting

Shortly after my pep talk with Dr. 'M', I was down in the NICU, grilling my son's nurses. Of course, they didn't have a lot of answers for me. Up until that time, every nurse had had different answers for us. One of them had said something about how she thought Michael's tongue was covering his airway, but she seemed a bit ... flaky ... and this answer seemed rather absurd to us, so we didn't really believe her.

Finally, I made enough of a pest of myself that someone called the social worker assigned to me. She came to see me, armed with lots of computer printouts and information and helped me connect with the NICU doctors that were difficult to identify among all the other people coming and going in the crowded room.

As it turns out, the flaky nurse was right. The doctors thought my son had something called Pierre Robin Sequence, meaning that his lower jaw was so small that his tongue was pushed up (causing the cleft palate) and had a tendency to roll back, blocking his airway. Thus, small chin = cleft palate + can't breathe. Pierre Robin Sequence as an isolated incident (meaning not caused by some underlying syndrome) is very rare -- something like one out of every 30,000 births, and is believed to be caused by uterine positioning. As time would later tell, we had an even more rare kind of Pierre Robin-- a genetic, non-syndromic kind, probably caused by the genetic micrognathia (small mandible) that ran in our family. In fact, small chins and clefts, or near-clefts, are scattered in my family tree. My son just took it that one step further and made a real problem of it. (Nice.)

But ... what did this all mean for Michael? When, and how, were we going to be able to take him home? The answer from the doctors was, "It's up to Michael." Basically, they were hoping he would get strong enough to be able to control his tongue and keep his airway mostly free without any further intervention. In certain positions, Michael was fine. He was working harder to breathe than they liked, as evidenced by the retractions in his pectus (the center of his chest) when he inhaled, but they had hope. Much had improved since Michael's birthday, though. He no longer became two-dimensional baby when he inhaled. He didn't require oxygen, and he was able to tolerate food given by tube down his nose without compromising his respiratory status.

I should point out that this NICU was very conservative, and babies in respiratory distress, especially those with cleft palates, are not permitted to try to eat by mouth. All food is given by IV nutrition at first, and then by NG tube, with the oral feeding coming only gradually. Emotionally, this fact was hard for us to accept, because we didn't think there was anything so "wrong" with Michael that he shouldn't be allowed to try to eat, but the hospital had its reason. One of the reasons was the risk of fatigue. Michael was already working hard enough, they didn't want him to burn too many extra calories trying to suck and swallow. Another reason was Michael's cleft palate. A cleft palate interferes with the ability of a baby to create an effective suck (making it harder to eat, already something they were worried about), and it increases the risk of aspiration. With a hole in the head where no hole should be, the doctors were concerned about the direction fluid would travel, and the last place they wanted it to end up was in Michael's lungs.

One of the other reasons the NICU had for playing the "wait and see" game was Michael's intubation status. They examined Michael's airway with that scope they use right before they intubate someone, and the NICU doctor on staff thought he could "visualize vocal cords". By that, they meant that they thought Michael was intubatable in an emergency, so they felt that they could give him time to try to work things out. (As it would turn out, this conclusion was about as wrong as wrong could be.)

I went home, and Michael stayed in the hospital. I attached myself to a breast pump around the clock, as one of the only things I could do to help my child. My in-laws had moved in for a little while so they could drive me to and from the hospital every day because I wasn't allowed to drive. My husband went back to work, deferring his paternity leave until Michael could come home with us.

After two weeks, though, not enough was changing. Michael quickly graduated to a "big boy bed" and was out of the incubator. He was maintaining his own body temperature almost right away, and once we managed to get the whole bilirubin/jaundice issue straightened out, there wasn't much need for the incubator anymore. Even better, Michael was able to get all of his nutrition by the tube in his nose, and the IV nutrition was removed. But ... he still needed the high flow nasal cannula. Without the pressure of the air through the cannula, Michael could not keep his tongue out of the way, and he couldn't keep his oxygen levels in a safe zone.

At first, and for a long time, I didn't understand that Michael could go home with the nasal cannula if he was safe. I didn't understand that he could go home with the NG tube in his nose, too. I was feeling sad and frustrated, and I thought we would be in that hospital forever. I wasn't allowed to stay with him, and twice a day I had to leave so the staff could perform rounds. I had to leave to eat, to drink, and to pump. I needed a nurse's permission to enter the NICU and visit with my baby, and I was not allowed to pick him up or hold him without someone supervising me, and depending on how I held him, he might obstruct his breathing.

In many ways, this situation was emotionally unendurable. I was now having regular "updates" from the doctors, which sometimes consisted of messages from them that they had nothing new to report. One day, the new doctor of the week rotated on shift, and he came to me when I asked to see him. He was very excited to report that Michael was on "full feeds" via his NG tube, was out of his incubator, and no longer required oxygen. Wasn't this great?

I was less than impressed. I said, "Sure, that is wonderful, but we are no closer to taking him home. Feeding has never been the issue. What are we going to do about his breathing and the tongue that you think is obstructing his airway? I know we are waiting, but honestly, what are we waiting for, and how long are we going to wait? What is the plan for bringing my son home?"

Well, I'm a bit chagrined to say that the doctor was shocked. He was familiar with Michael's condition, but on his very first day on Michael's rotation, Dr. 'S' was not prepared for anything other than the "wait and see" approach. Certainly no one had warned him that I might be starting a war dance.

To his credit, Dr. 'S' quickly got on board my train. He heard my concerns, my frustration, and my helplessness. He put his hand on my shoulder, and he said, "Ms. K____, I hear you. We need a plan, and I intend to get you one. I am going to call a pulmonologist to come look at your son, and we'll see what he says. If we don't get any answers from him, then I will move on to call an ENT. Either way, we will start to get some answers."

I have a love/hate relationship with that conversation, because very quickly our hospital life went from waiting, waiting, waiting, to frantic action. I often wondered what might have happened if I had kept my mouth shut and let us wait a little longer, but I did the right thing.

At the end of the journey, I can look back and say that at every moment I made the best decision I could with the information I had available. Sometimes, with hindsight, I can see that some of my decisions were right, and some were wrong. Either way, I did the best I could and I have no concerns in that regard. But, as Doctor House said on the TV show House (I'm sorry, but I don't know which episode, and I probably don't have the words exactly right): "Just because you can't know what the right answer is doesn't mean there isn't one."

So, while sometimes I wonder how things might have changed had I kept my cool and stayed quiet, I know speaking up was the right choice.