Day Three - Rainy Wednesday

Good evening.

Sorry for the late post. I kind of had a down day today - but, I am feeling a little better. Nolan had a steady day. We really had no changes. He was supposed to get his feeding tube in at 1 pm and it didn't actually happen until 4 pm. They did not want to remove the breathing tube before placing the feeding tube through his nose, so when they didn't get him in until 4, I knew they weren't going to remove the tube. They like to do this during the day when they are fully staffed because they need a team of people in here to make sure everything goes smoothly.

Some new things. Nolan is currently on nitric oxide in combination with his oxygen. Nitric oxide (not to be confused with nitrous oxide) is used in critical care to promote capillary and pulmonary dilation - basically it helps open up his lungs to assist in weaning off the vent. So, plan is to get him off of the vent tomorrow. They are already starting the weaning, but the actual removal will take place tomorrow. I think I will feel a lot better when this happens because they will wean the sedation and I will actually be able to interact with him again.

He is currently receiving blood because his hemoglobin and hematocrit (H&H) levels are down. They discussed this morning that this is probably happening because they take so much blood from him during the day for tests and due to some blood loss from his surgery. So, now they have a specific protocol for Nolan and they are going to try and decrease draws. I did notice today that he was looking paler, and the doctor just told me that he will look nice and pink by tomorrow morning. (PS: Become a blood donor!!)

After the breathing tube is removed, they will begin feedings through his tube to start getting his GI system back in the game. Soon we may be able to bottle feed. I can't wait to hold my little man! I know he won't forget myself or Matt, but it is really hard being disconnected from him for over 2 1/2 weeks. I just can't wait for him to look at me and smile.

OH, CORRECTION FROM YESTERDAY - I explained something wrong in yesterday's post. I said that Nolan was getting a dose of surfactin. That is wrong. Nolan received two doses of pulmonary surfactant, which increases pulmonary compliance. We all naturally are born with pulmonary surfactant. Many preemie babies are born without it if Mom is unable to receive the steroid shot to help lung development before birth. Because Nolan was on the heart/lung bypass machine (and he was a preemie), this may have washed away his pulmonary surfactant - which is why they are replacing it. (Hope that all makes sense! I had to have my mom detail it for me. And, we are Googling...)

I think I covered everything from today. One last thing in regards to fundraising efforts. We appreciate everyone's outreach and willingness to help Nolan and our family. I am researching how to do this properly and am placing a phone call tomorrow to an association tomorrow. Alisa Zisman (one of my best friends from college who lives about a mile from Children's Hospital) is going to help me collect any donations/funds that have been raised. So, once we get this organized I will provide information on how to donate and Alisa's contact information. THANK YOU, THANK YOU, THANK YOU a million times over for being so kind and generous. Honestly, we have amazing friends and family. AND the kindness of complete strangers...it is all overwhelming and appreciated. I am learning how to RECEIVE things...I am not used to it as I love to give, give, give. But, really, we are so thankful for everything.

OK - Nolan is getting yet another X-ray. Once it's done I am going to kiss him good night and put myself to bed. Looking forward to a GREAT day tomorrow.

Good night!