Kristin and Josh came over to visit with the little guy today. (Thanks Kristin for staying so I could take a nap!!)

We are HOME!!

I am so thrilled to be writing this post from home and not the NICU!! I promise more pictures tomorrow. I almost did not post these.........because Aunt Kristin thinks that the pom pom on the hat they sent home from the hospital is bigger than his head :)
(Hey, he seemed cold and I grabbed the closest hat!) I'll try for some with his eyes open too - like at 4 am when he likes to party ;)

I know I have been quite the blog slacker this week but I promise lots of pictures to come because we are HEADING HOME TODAY!! We have a 1:00 eye appointment here at the hospital and then we will be discharged! YAY. What a blessing, thanks to everyone for your prayers. I have been waiting for this day for 10 weeks!
Now, I hope I have all these meds, feeds, oxygen, and monitors figured out!!

There is something so precious about a child holding onto his daddy! Notice the feeding tube is out of his nose and the IV is out of his arm!!Daddy "spiked" his hair :)

Today was an AMAZING day! When we arrived at the hospital his feeding tube was gone and the IV had also been removed from his arm - that is HUGE! He took his entire bottle like a champ for daddy. The doctor came to visit with us and if everything goes well with the heart echo on Tuesday we might be bringing our little guy home SOON! Pray that happens for our family, we are so ready to be home and together!

My Aunt Cathy (my dad's sister) is in town from Cleveland this weekend so she joined me in my trip to the hospital this morning. She LOVED her time with Boston. Of course, he had just eaten so he slept most of the time we were there!

Boston is 5 pounds 1 ounce as of this morning. He is doing pretty good, they are going to follow up with another heart echo on Tuesday to see if his Pulmonary Hypertension is better since we started the medication. They are also starting him on breathing treatments every eight hours. He is eating like a champ from his bottle which I love! Please pray that the echo goes well...we are so close to getting him home and would hate to have another set back!

I know these are not the clearest pictures (because they are cell phone photos.) It is because I am in Cincinnati for Charlie's grandfather's funeral. My mom, dad, and sister are taking turns going to the hospital to love on Boston for us!

He is up to five pounds now and taking 23 mls (just over 4 teaspoons) of special formula every three hours, his little tummy is not ready yet for my milk. We have hit another bump in the road as he has developed pulmonary hypertension and now has some fluid surrounding his heart. They have started him on new medication to help. I pray that he responds well to the medicine and continues to feed well which will bring us closer to getting him home. For now he has to remain on the oxygen due to the high blood pressure - which was causing him to drop his stats. Charlie and I appreciate all of your prayers and encouragement through our extended stay in the NICU, your support means so much to us!!

Charlie, Brooklyn and I spent the afternoon in Chicago for Brooklyn's Rett Syndrome Natural History Study appointment today so I did not make it down to the NICU today but I just realized I did not update everyone yesterday either.
It was a ROUGH day. Boston was put back on oxgyen :( He dropped his stats down into the 30's which should be at 100. At one point in the morning he turned blue - not something a mom does well with!! They ran some tests and everything seems to be ok, other than he is a preemie and still needs some time.
The good news is that he has started feeds again, one teaspoon every three hours and is handling them ok right now. Please pray that his lungs continue to get stronger and that his belly continues to handle the feeds ok.