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.
Two weeks behind us now! Welcome to the start of week 3.
Trevor is a super star and is doing so well. He is a nurse’s favorite in the room because he has such a mellow, easy going personality and is just too adorable. He seems very curious and is looking around a lot. He is very active and squirmy too. But he seldom cries and when he does it is because they are giving him reason. (He still doesn’t like cold wet wipes) His umbilical cord nub is so close to falling off, and then I am eager to see what his reaction will be to getting a real little bath.
I got to attempt breastfeeding today for the first time. He got a good latch right away and seemed to do fairly well with it. He gets very comfortable when I am holding him and falls asleep too easily so doesn’t eat as well as he does for the nurses. Until he passed out, he seemed to keep a decent latch. He just needs more practice.
Brendan seriously needs to catch a break!! I feel so bad for this little guy and all of the hurdles he has been presented and I am so proud of him for doing so well through all of it. But it is about time things started to get a little easier for him. He does not deserve all of this.
Today on his xray, they discovered that he had NEC (Necrotizing Enterocolitis) – an inflammation in the bowel. Details here:
They believe that they caught it very early before serious damage was done. As described in the link, all of these things have been done:
– Milk feedings have been discontinued
– Nasogastric tube is suctioning his stomach to remove air and fluid
– IV fluids increased for better blood pressure and nutrition and they gave him some blood as well
– They started him on antibiotics again for infection
– He gets an abdominal x-ray every 6hrs to track the progression and/or healing.
This all may be due to the poor oxygen profusion to his body from his heart defect, the doctor did say that the gut was the last place to get O2 in the circulation path. We were there for his 3rd xray to be taken, and the doctor came in a short while later and showed us the films. The good news is that the latest xray showed no further deterioration or damages, so there is no rapid progression right now that would lead to emergency surgery. We will be calling in after 11PM to check on his next xray and see how he is managing.
The worst part is that they will not be able to do anything for his heart now until this has healed. The surgeon mentioned now doing his heart procedure some time early next week. The day nurse today did say he has been very stable today and did not need any sedation or pain meds. They re-taped his ventilator and now it is not pulling on his poor lip quite as bad as it was before. He was very alert and looking around again. I am just glad he has no idea what is happening.
We got to talk with his primary neonatologist today that has been on his case since I was admitted to the hospital. She took extra time to chat with us and I really like the way she explains things.
Pictures!
The new blue tube is the stomach suction. They got a much better tape on his ventilator now so his poor little face is not being pulled on so much.
X-ray time
At least the x-ray machine looks cute
Trevor is real close to being rid of that feeding tube!
