This morning’s checkup on Brendan was fairly uneventful. The transfusion seems to have helped his numbers and his heart rate has come down some. They moved him off of the low-flow air blender cannula and taped on a new nasal cannula that is just straight dry air. He has been turned down in his settings to less air support and seems to be handling it well even though he got seriously upset with the Respiratory Tech who had to peel the tape off of his cheeks.
His feeding advancements have continued and he is tolerating them well. He was very alert and looking around quite a bit today while I held him.
I missed rounds this morning, so I don’t know too much else other than he is stable. We are waiting to see if the surgery team will approve taking out the atrial IV.

Some pics of Brendan:

Trevor had his one month checkup today with the pediatrician. He gets an A++ today, the doctor thinks he is doing exceptionally well. He is growing super fast! Today he measured 20.75in long and weighed 7lbs 1oz!!
On the baby charts for singleton full term infants at one month of age, he comes in at the 5th percentile in weight and head measurement. The doctor was thrilled that he even made the charts!
On his height measurement, he comes in at the 25th percentile. He is going to be a tall boy!
The doctor said the the simethicone gas drops are safe to give him to control his worst gas. He also said he likes the Avent bottles for preventing excess air swallowing and has heard about the leaking from the Dr. Brown bottles. But overall, he recommends supervised tummy time to help him be comfortable while dealing with the gas. I need to drink a lot of water too, some days I have not been as good about staying hydrated.
Trevor goes back in one month for his next visit.

Here he is getting ready to go to the doctor

A new week begins again – time simply flies by. Mom and I went in to see Brendan this morning and when we got there, he was looking great. He seemed to be pretty calm and comfortable, but his numbers said otherwise. His heart rate was very high, and his breathing was a bit more labored with bouts of rapid breathing.
During rounds, the doctors had a very long conversation about what his troubles might be now, and I have to say my head was well flooded with information I hoped to be able to remember.
By the end, they had settled on a few things. The increase in Lasix had really helped him shed fluids and his chest xray showed that his lungs were looking much better. But the increase really dried him out and left him a bit dehydrated and off balance. They decided to change his fluid balance and to give him some more blood. As soon as they started the transfusion, his numbers already started to improve.
The other problem was that his kidney monitor showed low O2 perfusion. This is also related to the problem above, but they tweaked his air settings as well.
The doctors feel like he is dealing with some withdrawal issues from the opiate medications he has had so much of. His agitation levels are very high and he has built a bit of a tolerance to the drugs already. They are increasing his methadone and trying to get him more comfortable. He is continuing to eat, but they are going to stop increasing the food for now until he stabilizes.
The atrial line did not come out, until he is able to get off of the TPN/Lipids nutrition and eat only breastmilk, it will most likely stay.
I talked to his cardiologist as well, and they filled my head with all the possibilities for his future surgeries. They are shooting for his first open heart procedure – the Glen – for when he is 4-6 months old. But then the PA band he has is a fixed size, so as he grows, it will be tightening and reducing flow to his lungs. So if he grows quickly and this restriction causes a problem, then the surgery could be at 3 months old instead.
He also mentioned the possibility of another procedure to increase the hole between the left and right atriums of his heart to allow better equalization. Right now they are just watching him closely and future echos will determine if this is necessary.
The only other news was that they will consider keeping his ostomy until after his first heart surgery. They don’t want his body wasting energy to heal from another operation if his heart is the priority for the near future.

I am sure I am forgetting to mention at least twenty things. It was a long day. Both Mom and I got a chance to sit and hold him and he definitely responds to the human contact well.

Probably the best picture of Brendan I have been able to take so far. He really looked cute today and was making lots of adorable little faces.

He calmed down some in my arms, but I think the transfusion was really helping.

Trevor had a decent day. He is still fighting some issues with gas, but he is handling it really well. Yesterday, I decided to upgrade his bottles to a fancy expensive one that has the contraption that is supposed to help the baby swallow less air. On the recommendation of one of his PT’s, I bought three of the Dr. Brown Natural Flow bottles. I am pretty seriously unhappy with these things. Not only did Trevor have trouble getting the milk to flow with the nipples that they came with, the bottle leaks everywhere. It is a secret hidden leak, I couldn’t find where it was coming from, but Trevor’s whole chest was soaked before I even realized what was happening. Looking at customer reviews, seems like I am not the only one that has had that problem. What a waste of money!
Trevor gets to see his pediatrician again tomorrow for his 1 month checkup, so we will talk all about gas and bottles and poop.

Bill’s dad was able to come and join us for dinner tonight so he got to meet Trevor for the first time! Here’s the three generations! We hope Brendan can join the photo soon.

Another good day all around! Brendan’s rounds this morning consisted of a huge discussion about nutrition. The doctors had a pretty long debate about the balance of carbohydrates, proteins and fats in his IV nutrition and the effects of changing them. They decided that his condition warrants that they give him more protein and carbs and less fat. So they will be mixing up his TPN a little differently now. They are adding fortifier to his milk to increase the calories to help him gain some weight.
They turned down the pressure on his cannula because it was set pretty high. They also agreed that the atrial line could be removed. When we see him tomorrow, he should have one less IV attached!
They turned off another pain med, so he is no longer on anything in an IV drip. He gets methadone regularly and other meds only as needed.
He is enjoying the little pacifier with the sucrose drops on it. It really does help soothe him.

Dad needed to give Brendan a kiss too!

Brendan is participating in a very cool program for kids called Beads of Courage. He gets a different colored/shaped bead for each medical treatment or experience for his stay. There is a chart to keep track of it all each day with the legend of what each bead means.
All I can say is that Brendan has about 3lbs of beads in his bag already. When he is out of the hospital, he will have enough to make a beaded curtain for his room.
More info on the program here: http://www.beadsofcourage.org/

This is the start of Brendan’s collection. They are out of stock of a few of the colors, and he is about a week behind. The program is a fantastic idea, but some of the nurses care about it more than others. I can string them once we get caught up.

Trevor had another eventful diaper day. When he woke up this morning for a change, I opened up his footie pajamas and discovered that he had somehow wiggled out of his diaper and that it was hanging on just under his little cheeks.
I heard that I might have to fight with the boys about pulling up their pants, but I certainly didn’t expect it to start this early!!
The diaper was still securely fastened, no idea how he managed it!

I bought both boys a new toy today. Their cousin has one and I thought it was so cute, I had to get it too! It is a Captain Calamari! Trevor thinks it is pretty cool too.

Aaaaah! Calamari attack!

Trevor attacks back

Position of the mirror aside, Trevor is still fascinated by his own reflection!