Ups and Downs and a New Hospital

It has been an insane last couple of days.  Sorry for the lack of updates on here, but we had gotten to the point over the weekend where not much had changed and I thought I could just lump the weekend together into one post on Monday.  Mr. Rowan had different plans and thought that he needed to make things a little more exciting on Monday and Tuesday.

As I said, the weekend was fairly uneventful.  Friday was a pretty smooth sailing day and we coasted through with good numbers and lab results.  Saturday, Dr. Navarro decided that Rowan was doing well enough to extubate him and try him on CPAP.  John and I were really surprised that they were doing this and it seemed like we were taking a huge jump forward.  They switched him to CPAP late morning and he did fairly well.  It became pretty obvious as the day went on though that he was not a fan of having to breath on his own and he became tired very quickly.  They decided they would let him stay on the CPAP through the night and see how he would do.  They also tested his CRP level and did a CBC.  His white cell count was a little elevated so they said it might be a sign that he might still be fighting a bit of an infection and his CRP was at 0.5.  John and I went home Saturday night and went to church Sunday morning.  When we got back to Topeka, they had reintubated and Rowan was back on the vent.  We totally expected this to happen, so this was not a surprise.  We were ok with taking a couple steps back since we had taken such a huge leap forward.  We knew that Rowan had gotten pretty tired from trying to breathe on his own on the CPAP because he let the vent breathe completely for him for most of the day.  He started to catch back up in the evening and was doing really well.

Monday, we ran into another hurdle.  When Janet, the nurse practitioner, came in to give me the plan for the day, I could immediately tell that she was concerned about something.  They had done more blood work and his white cell count had increased again and his CRP was now at 4.8. That was definitely out of the normal range and showed that there was some kind of infection happening somewhere within Rowan's body.  They were unsure at that point what was going on and they ordered more tests to find out.  One of these tests included doing an X-ray of his chest and abdomen.  They were still concerned that he hadn't really pooped in several days so they wanted to check and make sure that everything looked ok with his digestive system.  On the bright side, Rowan's lungs were starting to look better which showed that the steroids were doing their job.

After Janet left, I went to the hallway to call John and give him an update since he was in Wamego at work.  I had held it together up until that point, but couldn't any longer.  I was majorly concerned about Rowan's blood infection possibly being back or the possibility of a whole different infection.  John, being the awesome guy that he is, left work and headed back to Topeka without me even asking.  He knew that even though Rowan was doing completely fine, I would need his support.

As the day went on, they drew more labs and ran more tests.  I was able to hold Rowan again from about 2:00-3:00.  John still hasn't gotten to hold him, but he knew that I needed some cuddle time so he gave me his turn.  Around 4:00, they did another X-ray and that's when things really started to fall apart.  Rowan's team of doctors determined that his X-ray showed signs of infection and either a possible bowel obstruction or something called necrotizing enterocolitis or NEC (the nurse told us not to Google it... But you can read about it here.  It is the same information that the doctor gave us.) Basically NEC is when the bowel gets infected and either causes a perforation or causes bowel tissue to die.  This was very upsetting and concerning to hear.  I'm not going to lie, I was a complete mess. The doctor explained that the plan going forward was to add another antibiotic to Rowan's list of medications and stop feedings to give the bowel rest.  Rowan's stomach had also become a bit distended or swollen and it also appeared a little discolored.  By 5:00, Rowan's CRP had risen to 6.8. Since he once again had an infection, they stopped giving him the steroids for his lungs as they can weaken the immune system.  The rest of the evening was pretty rough for me.  At this point, Rowan was in obvious discomfort at times, especially anytime his abdomen got moved or touched.  There is nothing worse than standing beside your baby's bed and knowing that they are in pain and there is nothing you can do about it.  I wanted nothing more than to pick my sweet baby boy up and comfort him.  It was tough.  We finally left the hospital Monday night around 11:00.

Tuesday morning brought even more changes.  We arrived at the hospital around 8:30 after getting some much needed sleep.  We were pretty optimistic, but the nurse was very quiet when we got to his room.  Quiet nurses are never a good sign.  After the medical teams finished their rounds, Janet came to speak to us.  She told us that Rowan's most recent x-ray was leading them to believe that he had a bowel obstruction.  The only way to know for sure was to get a surgical consult.  No big deal, right?  Well, there aren't any surgeons that would perform this type of surgery at Stormont Vail, so they needed to transport Rowan to Children's Mercy (CMH) in Kansas City.  All signs were pointing at Rowan needing surgery; along with his x-ray, his CRP was almost 15, his white cell count had risen and his platelets had dropped.  We were told that the doctor needed to get in contact with CMH to get things worked out and then they would either send a helicopter or an ambulance to get Rowan.  John and I spent the next couple of hours getting things ready to head to KC.  We packed up Rowan's Room at SV and got all of our things from the Ronald McDonald House.  It was very hard to be leaving what had become home for the last three weeks.  We were incredibly sad to leave all of the nurses, practitioners and doctors at Stormont Vail.  They have really become family while we have been there.  When you trust someone with the life of your itty bitty baby they find a way into your heart very quickly.  However, we were assured that once they get things figured out with his bowel and everything looks good, we should be able to go back to Stormont for Rowan to continue growing and getting stronger.

At about 1:40, Rowan got loaded onto the ambulance (couldn't send a chopper because of the weather) and he headed to KC.  John and I grabbed a quick bite to eat and filled up the car with gas and then we headed that way as well.  Things are very different at CMH.  We had our own private room at Stormont which was amazing.  At CMH, it is an open ward.  We were placed in a semi-private room; we share it with one other baby.  It definitely feels like a more clinical environment.  When we arrived, the nurses were doing their assessment of Rowan.  He didn't tolerate transport very well and they had to place him on the oscillating ventilator.  They also had to give him a little bit of morphine for discomfort on the ride to KC.  Everyone got settled and the waiting game began.

Finally, at about 6:30ish the neonatologist came to talk to us.  He said that in looking at all of the information, he didn't see Rowan as a surgical case at the moment.  He said their plan was to basically do the same things they were planning in Topeka: antibiotics and bowel rest.  He stated that the importance of getting Rowan to CMH was because bowel issues can progress quickly and this way he is here in case the need for surgery arises.  The nurses continued to draw blood and run their diagnostic testing and we finally left to head to the Ronald McDonald House that is just down the street.  It was a. long. day!

Today has been a much less stressful day.  When the doctors rounded this morning they said that they are still suspecting that Rowan has NEC, but they want to do a few more tests to make sure.  They ordered an ultrasound of Rowan's bowels to check for fluid around them and they will continue to do blood tests to check for infection.  As of right now, we do not know the results of the ultrasound.  They will also be doing an echocardiogram in the next couple of days to check in the progress of Rowan's PDA.  Rowan's blood gases have looked great today and they were able to switch him back to the conventional ventilator.  He is still in some discomfort and does not like to be touched at all right now, but he's never really been a fan of being messed with.  :-)  His belly looks much less distended today and they have been able to suck quite a bit of gunk out of his stomach through a large NG tube.

We will probably be here for at least a couple of weeks.  John and I are getting more used to our surroundings.  They have a lot of great resources here for us, but we still miss the smallness of Stormont.  I know that they will provide great care for Rowan while we are here and we are once again in the best place for his needs at this time.  The doctors round each day sometime between 9 and noon, so I will try and do updates on here after that.

We may have had to switch amusement parks for our roller coaster ride, but we are confident and faithful that we will be able to get through this just like we have the last three weeks.

(Sorry for the long post... a lot had happened since the last time I posted!)