Not too much is new since the mobile update earlier.
Brendan is still stable. I heard that they had tentatively scheduled his heart surgery for Monday, but now because of the perforation and leakage in his gut, he will need some more healing time, so it could be the end of next week. If things go well, he may begin eating again in approx 10 days (maybe longer). The ileostomy will stay for 4-6 weeks before it will be reversed. It could be a merry Christmas rejoining of the intestines.
My last phone call was the very beginning of the night shift, so the nurse didn’t have a lot of information yet, but she told me he was comfortably resting and that they were able to stop the dopamine they gave him after surgery (to improve his blood pressure).

When I got to visit Trevor today, he was getting a visit from his physical therapist. She was teaching him how to properly “find his center” and learn to self soothe. We got down on the floor on blankets and rolled him on all sides and taught him how to be an armadillo. He does really well for an early baby.
We are signed up for the discharge class on Wednesday, so Trevor’s ICU time is short now! We have to learn infant CPR and bring in his carseat for a fitting. But we might see him home by next weekend! It won’t fail, he will come home the day Brendan is finally scheduled for surgery. Fortunately, their Gramma will be out here just in time to help! She gets in on Saturday for several weeks stay. I will have to check her luggage when she goes to make sure she is not trying to smuggle Trevor home with her!

Pictures!

Brendan got the IV out of his head now. He has a new arterial line in his left femoral atery, the PICC line in the right, and an IV in his left wrist that are all working. His guard doggy must have medical training also, he is keeping pressure on the IV removal site.

My poor blond little boy lost a large patch of his hair when they took that IV tape off. I am so glad he was still sedated. I dare anyone to wax their head and tell me how that feels!!

My little inchworm Trevor is in a big boy bed in the first floor annex. We are going to attend the discharge class on Wednesday next week, so he is getting real close to coming home!!

More sleeping baby pictures. The nurse told me today that Trevor gives her the same faces that daddy does. Everyone is telling me he looks just like Bill!

Just for those people that check several times a day for the latest news, Brendan is doing real well today post-surgery. The surgeon checked on him and said that everything looked good. Brendan’s color is better and signs of inflammation have significantly reduced. His regular doctor told us to expect that he will be kind of puffy and will go through a lot of fluids while he heals. More info later!!

The day started off like they normally do these days. Trying to wake up, hustling to try to get things done, heading off for our daily visits.
We try to make it to see Trevor by 12:30PM so we don’t miss his awake time at 1PM. Today we arrived just in time for him to be finishing his bottle and falling back to sleep. We did both sit and hold him for a while but I missed the chance to breastfeed again. The nurse informed us that he would be moving tonight to the nursery annex downstairs on the first floor. That is great news, the annex is the gateway to going home. They send only strong babies there to finish their “to do list” before they are discharged. The nurse did call later in the evening to let us know that the move did happen, we can’t wait to see him there tomorrow.

While I was in the pumping room, Bill got a call from the other hospital with notice that Brendan had taken a turn for the worse. The boys’ primary doctor was there to explain it to us too. We had been calling in the night to check on his xrays and they had all been fine – no change. His labwork all looked good, his stats on the monitors were the same – on paper, he was doing well.
But around noon today, he belly started to swell up quickly and he developed red banding which can be a very bad sign of infection or severe irritation. They were going to have to take him for exploratory surgery to find out what was going on.
They ordered an ultrasound to look for the possibility of clotting in the abdominal arteries, but that all came up clear.

They finally transported him for surgery around 3:45PM, we did all the paperwork and they settled us in the waiting area by 4:15PM. Finally just after 6PM, the surgeon came out with the news. The NEC was mostly concentrated in his appendix. This could be seen as a good thing because the appendix is the least important part of the system and won’t be missed when removed. Unfortunately, it had ruptured with a small hole and all of the belly swelling and inflammation was due to stool and digestive material leaking in to his abdomen. They removed the appendix and cleaned everything out. There were some additional signs of NEC in his colon (air trapped in the walls causing some inflammation) but they believed that it was not advanced and could heal. They performed a temporary ileostomy to allow this area to rest and heal.

Link to description of Ileostomy

They will keep a careful eye on him now and in a few weeks, if there is no more sign of the NEC, they will reverse the ileostomy. We will have to talk to the cardiology team to find out how this affects his schedule for heart repair procedures. In the meantime, we have come home to try to get some rest. Brendan is well sedated and will be kept stable and comfortable while he recovers. We’ll be calling in to check on him frequently.

Pictures

The pictures of Brendan are difficult to look at, but I thought it was still important to document the things he is going through. We all can look back on it with him later and appreciate how strong he is because of it.
I have linked them so you can look at them if you choose.

Picture link: Brendan just prior to surgery

Brendan getting his ultrasound

Another journey, a much shorter walk this time to the OR

Picture link: Brendan just back from surgery – He is very pale and heavily sedated in this picture. It is so painful to see him like this. They drew so much blood for labwork that they are having to give him some back.

Trevor’s pictures will always make me smile. I really wish that the good fortune shining down on Trevor would make it’s way over to his brother too.

Trevor teaches his pose of meditation

His kung fu fighting is fast as lightning

**Did you notice his feeding tube is now on the other side? That is because he pulled the other one out!

Now Trevor demonstrates the ferocious kick that he used to deliver to my ribs. It is so powerful, it gives him hiccups.