The NICU

17 days in the NICU. Seems like a lifetime but compared to some of the sweet little preemies that Emmett rooms with, it's barely a start. Marcus across the way has been in since August 23...his parents haven't even held him yet. Emmett and I have had one precious hour in a rocking chair that was life changing. The NICU is a place where you learn quickly to appreciate the tiniest of things. I spent a long time this morning holding Emmett's beautiful left foot because it was the first time he didn't have any wires, cuffs or tape on it.

Emmett's situation has changed frequently. After several days on nitric oxide and prostecyclin, his pulmonary hypertension remained unchanged. Everything else about his body was functioning great, the heart looked good, he worked his way up to full feeds (breastmilk), was oxygenating his own body very well, and grumping at us every time he pooped his diaper. He got a new cardiologist last Friday, who seems much more concerned about his lack of progress than others have been, who restarted the prostoglandin to reopen the ductus on Friday night, and called us both in for a consult on Saturday afternoon.

We learned quickly that when the doctors want to sit down with you in a conference room and not consult by the baby's bedside, that it's not a good sign. We proceeded to have a long meeting where we discussed, quite simply, that Emmett's doctors are completely baffled by his hypertension. His heart problems, however severe they may or may not be, don't logically relate to the high pressure in the lungs, and they were very worried that he wasn't responding to any medication. They had an idea to surgically create a hole between his right and left atrium, something the surgeons had never done before. They began to list possible outcomes that could/would take place if the root of the hypertension problem isn't found. One example is that the pulmonary veins become permanently altered (incorrectly). Another example is that the heart starts to fail. It became quite clear that each example had the same prognosis...incompatibility with life. Patients with these outcomes can only be saved with lung and/or heart transplants. To date, there are no known heart/lung transplants that have ever been successfully done. Let's just say that we needed an hour or so to compose ourselves before we left the conference room. It's not an easy thing to be told by your baby's doctor, "We need a miracle."

After an intense night of prayer, brainstorming and licking our wounds, we woke up to a morning of more prayer, fasting and a greater resolve to keep the faith. When we arrived at the hospital, the doctors had a new working theory, that the coarctation may be a greater problem than originally thought. They were in much better spirits, thus we were in much better spirits...wondering if this was the miracle that we had prayed for.
All the cardiologists, neonatologists and surgeons meet every Monday morning to discuss each case. We had already been told by several people that Emmett's is the most confusing case that they had ever seen. Nothing adds up and his body changes every day, sometimes even every hour and they can't keep up with what's going on. His cardiologist went into the "big" meeting with a plan to do a coarctation repair, so we waited on pins and needles Monday morning to find out whether or not he would be added to the surgery board. By the afternoon, we were back to conferencing with the doctors (bedside, in the hall, anywhere but the conference room!).

The majority of those in the meeting were in favor of doing another heart cath procedure. This time, they want to add a balloon angioplasty, where they use a balloon to temporarily stretch the aorta as a way to relieve the high pressure in the lungs. They also want to see if the coarctation is worse than previously suspected, and/or see if there is anything else that they can learn with the procedure.

The doctors are not all in agreement on how Emmett's case should be handled. Some think that the coarc repair will fix the whole problem. Others think that the two problems are completely unrelated. Others, including the surgeon who would do the coarc surgery, think it may be necessary later on but would be extremely risky to do until the hypertension is gone. What do we think? We think that our emotions seem to mirror whichever doctor we are talking to...if he's tense and resigned..then we go home in tears. When she laughs, jokes and talks about all the great things that Emmett's body is doing...then we go home talking about what it will be like when he's home with us. I've begun to think that this is the most important NICU lesson that I have learned- how to own my own emotions and outlook and avoid letting the doctors' personalities and tendencies toward drama affect me. It's harder than it sounds.

Emmett avoided his heart cath today by spiking a fever of 103 last night. By the time we got to the NICU this morning, his fever was gone and he looked better than he had in days. Brian and I wonder if he's just trying to avoid another procedure and wishing we would just give him more time to get better on his own. We often wonder if everyone is looking too hard at the "data"...and missing out on the "baby" and what he tells us with his body. For now, his cath is rescheduled for Thursday. We anxiously await whatever baffling thing that he will do in the next 48 hours to completely change the situation. Maybe he'll just get better.