Family Meeting

In the midst of all the excitement, we forgot to mention both of our parents are gone. My parents went back to Buffalo, and Liz's parents are back in Southern CA. My mom plans to come back some time down the line. Liz's dad will be back Thursday night and will continue to help us out and bring our mail and some yummy home cooked food. Liz's dad is also taking care of Twinkie, Molly, and Max. We also want to thank Abe Teng for checking on Max while Liz's dad is back in LA.

Today, at 2pm, we met with the Dr's, Nayeli's primary Nurse Mardi, and the hospital Social Worker. This meeting was set up by the hospital staff to go over how our daughter is doing overall, and to discuss any other questions Liz and I have. Right before the meeting, we learned they had just done an x-ray on Nayeli because she was breathing pretty heavy. They discovered Nayeli had more fluid in her chest and they had to tap her chest again. The nurse told us they removed 40 mils of fluid from Nayeli's chest. It was obvious she was breathing a lot easier. We had noticed her breathing heavy last night and mentioned it to the nurse. The nurse thought it was normal because our daughter had just come off the vent. I was a little upset about this and felt our baby girl was suffering all night due to this fluid. We had asked them if they were going to increase their x-rays to stay on top of the fluid build up and they said they already did it once a day. This was not what I wanted to hear going into our family meeting. Liz had to calm me down before we went in there.

So, the meeting. As mentioned above, we first talked about the fluid situation. The Dr's still swear it is not a concern to them and is normal after a surgery. They said there is still a gap in Nayeli's chest created by the surgery and this area almost always fills with fluid. The question still remains, is the fluid lymphatic fluid caused by Nayeli's diet, or is it post surgery fluid. The Dr's said they are not sure and it will take more time to tell exactly what it is. They assured us it is not a concern and said they will closely monitor it.

The Dr then talked about how long they think Nayeli will be in the hospital. At a bear minimum, we are looking at at least one month. This will depend on how Nayeli is doing with her breathing, and how soon they can wean her off of oxygen all together. Another factor is her feeding habits and how much food they can get her eating. Right now, she is eating 16 cc's every three hours. This is up from 8 cc's a week ago. Liz is breast pumping like a champ and is having a hard time keeping up with Nayeli. We are hoping her milk production improves with Nayeli's appetite. The Dr said normal children eat between 50 and 60 cc's a day. We are still a ways from that. Another goal is to get Nayeli breast feeding and taking a bottle if I feed her. The Dr said there is chance Nayeli could go home with us when the time comes, with a feeding a tube. If this were the case, she could have this tube up to the first year of her life. The Dr said this would not hamper our daughter or her activity. The Dr mentioned that all CDH babies have difficulty eating and it varies case by case. He mentioned that when the intestines, bowel, and other items in Nayeli's chest are pushed down during the surgery, they typically do not end up where they are supposed to be. This causes the feeding, peeing and pooping issues. On a great note, Nayeli took a poop today that was mixed between the mincomium poop and a regular poop. This is very important as it shows she is eating and processing her food.

We then talked about Nayeli's breathing. The Dr said a normal person functions at 21%oxygen. Right now, Nayeli is being given between 28 and 30%, which is pretty good considering. Their goal will be to get her to 21% and off of all oxygen support. We then discussed Nayeli's rate of respiration (breaths per minute). Last night, Nayeli was breathing between 110 and 125 breaths per minute. This is pretty high, but she was handling it well. A typical baby breaths 40 to 60 breaths per minute, and the average CDH baby breaths between 60 and 80 breaths per minute. The goal would be to get Nayeli's breathing rate slower, but the Dr said her rate may faster than the norm. They will monitor this and try to figure out what Nayeli's norm is. On a side note, I went and checked on Nayeli after our meeting to see if the fluid drain helped her breathing rate. I noticed it was fluctuating between 89 and 110 breaths per minute. Better, but still a bit high so we pray this improves.

Nayeli had an echocardiogram yesterday and this also came up in our meeting. The Dr said Nayeli has an expected amount of pulmonary hypertension (PH) as "all CDH babies have some level of this." The echo measures the lung pressure of the "good lung," which is Nayeli's left lung. With CDH, this pressure increases as the baby works a bit harder to breath. The Dr said they are not concerned with Nayeli's level of PH right now and as with all the other stuff, they will continue to monitor it. The Dr added that if the PH gets more noticeable, they may have to give Nayeli Nitrious Oxide (N-O) or a medication that sometimes helps this. We pray for the best with this and also hope Nayeli does not have to take more medication.

Regardless of where this road leads us, we love our daughter so much and we will do what it takes to care for her. We thank you all for your continued prayers and support. It is very uplifting and keeps our chins up in this fight. We love you all!

The nurses can be kinda loud.....shhh keep it down I am trying to sleep


I am hungry.....and I am going to cry until someone gives me a Big Mac!