Day 5: Why we are in Portland

Brief Update;
Milo is doing well, he did not have a perforated bowel despite x-ray evidence that he might. Instead he had a yellowish mystery liquid that they cleaned out and hope will not return (tubes in stomach for now in case it does). We are in Portland for at least the next two weeks where they are more able to deal with this kind of thing and they are being very very hospitable. More details below.

Full Update:
Today was Milo's fifth day of life. At around 12:15 in the morning after I had slept about 2 hours and Shelly had slept about 1, Shelly woke up to pump and found that we had both missed a call from the nurse on staff at the NICU. Her message said that Milo was having some digestive issues and she wanted to connect with us about them. Shelly called her back right away (luckily only about 2 minutes after she had called us) and she told us that she was very concerned because it seemed Milo was having some air escape into his stomach and they were worried he would need corrective surgery. She told us the best hospital for that was in Portland and they were connecting with the Portland doctor on call to see if she thought it was necessary to fly him out there, but our NICU doctor thought that would be likely.

Of course we were very scared to hear that he may need surgery. Shelly and I immediately packed our bags with everything we could think of that we would need for a Portland trip and headed to the Medford NICU to talk to the doctors there in person and see Milo. Milo looked fine but the doctors said his x-ray showed air in his stomach and there was likely something wrong with his digestive tract. They heard back from the Portland NICU that the plane would arrive to pick him up in a couple of hours. They didn't know if there would be room on the plane for us so Shelly and I hopped in the car, made a quick stop at our house for last minute items, and hit the road to Portland knowing that if we hurried, we could arrive not long after Milo.

The drive, though one of the most distressing periods of my life, was thankfully uneventful, with two stops to pump and one stop for coffee, and we arrived in Portland around 8:30am. The Doernbecher hospital in Portland is much bigger than Medford's and you have to take three separate elevators to get from the parking lot to the NICU. When we arrived they were just doing a final x-ray on Milo before taking him to surgery. The doctor explained that they saw air in his stomach but didn't see what the problem was. They were taking him for an exploratory surgery on his bowels with the expectation that he had had a perforation that they could fix. The other possibility, they explained, was a necrotizing enterocolitis, a condition where part of the bowel starts to get sick and die. If this was the case, the doctor told us, they would pull that part of his intestine out of his stomach and attach it there in a pouch for about a week, giving it time to heal. As you may imagine, Shelly and I were not very happy with either of these options but hoped it was a simple (and small) bowel perforation that they could staple closed without fuss.

The doctor had told us that she hoped to complete the surgery in an hour but it could take up to two hours because they really didn't know what they would find but in a child Milo's age, long surgeries are not a good idea. The waiting room had a screen showing each patient (by private identifier number) and what status they were at in their surgery. We also had a pager that they could use to contact us with news. We received a page telling us that Milo was doing great and that the surgery was about to start and then we didn't hear anything back for a while. We tried to distract ourselves and Shelly fell asleep for a couple of minutes on my shoulder. 45 minutes in, Milo's indicator clicked from "In OR" to "Closing". A very good sign. The operation had taken less than an hour giving us hope that something totally fixable was found and fixed easily. Then the "Closing" status lasted another 50 minutes renewing our anxiety. Finally, Shelly had to pump so we found a nurse who was kind enough to show us to a back room and promise our doctor would come to us there for our consult. She found us and told us that Milo did not have anything wrong with his bowels. They had found evidence of air and a yellowish liquid in his belly where it should not have been but they did a complete check of his bowels and nothing was wrong with them. She wasn't sure where the yellow liquid and air came from but they left three tubes in his tummy to drain any additional liquid. The doctor said she thought it was possible he wouldn't create anymore and the liquid may remain a mystery. They would keep him off food for a week and see what happens and then watch him on food for a bit to see what happens, total time in Portland: at least two weeks.

Milo today after surgery sleeping it off

We went back to see Milo and he was doing great (though black and blue and having 8 tubes coming out of him; feeding tube, intubation, chest shunt, two IVs - one in each foot, and the three new tubes in his stomach). They had him pretty heavily sedated but all his stats looked great and he was doing really well.

We met with a lady from social services after the operation (and after lunch) and she told us that we qualify to stay in the Ronald McDonald House in a nearby hotel about 10 minutes from the hospital. This would entail a free suite including a full kitchen, free breakfast, and free transportation to and from the hotel. Unfortunately, they did not have a room available for tonight so the hospital gave us a voucher for $40 and set us up with a different hotel for the night in the hopes a room will be available in the Ronald McDonald House tomorrow. We covered the rest of the hotel cost but that didn't even matter, we were feeling so grateful to the hospital for setting us up with lodging and loving the idea of getting to move into a room at the Ronald McDonald House permanently (we'd get to stay there until Milo is ready to leave). The hospital also told us that while we are there, since Shelly is nursing, we are entitled to three free meals a day that they will deliver from the cafeteria and we are welcome to join in any of the parenting classes they have going on during that time.

Feelings:
Relief (that Milo is doing so well and that we have such great accommodations while we are here)
Trust (that the Portland hospital can handle any other challenges that may arise)
Tired (I slept two hours last night before driving to Portland and dealing with a huge amount of stress, sadness, and uncertainty)
Proud of our little boy and how strong he has proven to be.