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:

Necrotizing Enterocolitis

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!

Here we are at the end of the second week! This was such a long day, the things that happened this morning seemed like a week ago.

We visited Trevor first today. He is making great improvements on eating. He has graduated from the slow flow bottle and is taking a regular one now. He was able to eat a full 60cc in one sitting several times, and while we were there, he took 45cc. He is looking great, it is just a matter of time for him to come home.

Brendan had an extremely busy day. Within 6-8hrs of its placement, his new PICC line got clotted. The catheter lines they have to use are so tiny, it does not take much to clog them up. So he had a special trip to the Interventional Radiology department in the old hospital building. They were able to use an ultrasound guide to achieve proper placement of a new line in his femoral artery so that they could use a larger catheter. The new line tunnels under the skin in his leg so that the entry place is away from his diaper.
It took a team of 5 people to move him down to the 1st floor and through what seemed like a mile long tunnel to get to where they did the procedure. We were able to walk with him to see the doctor and sign the consent and then we waited in his room. They got the new line in well and suspect that it will be fine now. He was slow to wake up from his anesthesia and they had to increase his ventilation until he started to come around.

Speaking of the ventilator.. the doctors this morning put him back on the Milrinone and decided that weaning from the ventilation was a better first step. When they turned everything off, he did have a bad drop in his oxygen profusion and his blood gas test was fairly bad so they set him back to minimal support. They will continue to try to wean him slowly.
We did get to finally meet the surgeon working on his case. After they discussed him this morning, they have decided that they do not want to rush in to the banding procedure. The surgeon believes that his lungs were not as weak or underdeveloped as they suspected when he was born. He really wants to work on getting him off the ventilation to see exactly what they are dealing with before they jump in to surgery that may or may not be necessary.
He feels like they still might be doing the banding by the end of the week, but surgery this afternoon had been discussed and he thinks that is a little hasty.

Lots of pictures today!

The pink forehead thing is back. It is one of several sensors that monitors renal function. And see that new patch on top his head? It is an IV! They’ve poked so many holes in him and he has pulled out so many lines that they had to put the IV in his scalp. I have had IV’s and blood draws in plenty of weird and painful places, but he has me beat!

This is Brendan’s private room. Can you find the baby in all that mess?

Here is the view from Brendan’s window

For contrast, here is the view from my room window. We are/were both on the 5th floor and yes, that is pigeon crap.

A group of volunteers were travelling the halls with a cart of complimentary coffee, tea, and hot chocolate.

Trevor says “Less Camera, More Food!”

His eyes roll back when he has had enough.

Here is Trevor’s bed. There is a very long counter in this room and about 6 babies lined up there. Trevor is lucky enough to be near a window, but it looks out over a liquor store and a laundromat.

I don’t know what to make of today. Every time a new shift starts and a new doctor comes in to check on Brendan, we get a different story. I know they are all going to have it out with their different opinions tomorrow and decide what the approach will be. But even then, the nurse tells us to expect constant changes in the plan depending on how he reacts each day.
We have heard that there are rumblings about surgery on Wednesday. We have heard that they could possibly extubate him to see how he does without the ventilator. One doctor said he may not need the surgery at all. I know that there are lots of unknowns and that he is going to receive the care that he needs. There are excellent doctors and staff taking care of him and he has been stable and comfortable while he waits.
What is certain right now, they set his ventilator to very minimal settings, so all day today, Brendan has been breathing on his own. In a few cases of forgetting to breathe, the machine kicked in and did it for him. He did very well though.
They turned off the Milrinone this afternoon. How his stats change when that medicine is out of his system will give them more info about how things are working. They upped his feedings to 10cc and plan to continue increasing as he can tolerate it. He is back up several ounces in weight and is looking much better to me. They did start him back on the Lasix, and will watch closely to see how he reacts this time. His lungs do require frequent suctioning.
I am very glad I have been writing all of this down, we have been asked about what and when things were done and have been able to pull up the blog on our phones faster than they could go search in the charts. We are doing everything we can to keep up with the daily changes to stay informed!

Trevor had another good day. He got fed a bit late this morning and was able to take 60cc (about 2oz) from his bottle. They have moved him to larger amounts at every 4hrs instead of every 3hrs. When he is more hungry and rested, he does better with the eating. This afternoon, he took 30cc from the bottle with me feeding him, and got the rest in the tube. I just like to see him make such progress daily.
He is a poop making machine, and even though he is still just a tad jaundiced, they expect that all the pooping will fix that right up soon.

Pictures!!

Brendan’s bedhead hair looked too cute in the sunlight

Brendan’s doggie friend is very useful for holding up the ventilator tubes, and laying the beanie baby in next to him is a great size reference!

Trevor tries to give himself bunny ears for the picture since his brother isn’t around to do it.

This is Trevor waking up from his nap, feeling hungry.