Life "on the Floor"

Ayden has been on “the floor” for three days now. PHEW! I am worn out! Doctors and nurses come in and out of the room throughout the day, and the noises from patients, employees, and machinery are incessant and LOUD… not to mention my vicious pumping schedule. On top of everyday hospital life, I finally get to experience some of what it is like to have a newborn, and it’s exhausting… but we are so blessed by our handsome little man and the progress that he has made.

Yesterday the ear, nose, and throat people came to visit Ayden to check on his vocal cords. Many hypoplastic babies suffer vocal paralysis from the heart surgery. All one has to do is listen to Ayden to know that there are no issues with his vocals; nevertheless, they had to torture him to make sure. They tried putting this tube down his throat to see his vocal cords, but that failed miserably and caused him to gag and scream quite a bit. Finally, they tried down his nose, and they discovered, in three seconds, that his vocal cords did not suffer from the surgery. Praise!

There has been quite a bit of discussion about the plan for Ayden’s eating. Right now, as you have seen from the pictures, Ayden has a feeding tube in his nose that leads to his stomach. For most hypoplasts, they do not have the initial ability to suck, swallow, breathe, eat all at the same time, so they typically get a feeding tube (“g-tube”) placed in their side. This requires an additional surgery. Since Ayden has excellent vocals, and he has proven his sucking skills with the pacifier, all have determined that Ayden may just need some time to develop the coordination to eat from a bottle. The speech pathologist has found that he is capable, and so we have begun the process of helping Ayden possibly achieve something most children like him can’t do right after surgery. (Please don’t think this means that the g-tube is out of the picture; on the contrary, it is still a possibility. We will just pray that this can be one more miracle in his already miraculous life!)

Before today, Ayden was receiving continuous feeds through his feeding tube. Today began the process of receiving more foods over shorter amounts of time to try to simulate what most infants experience in regular feedings. He receives these bolus feeds during the day, and he has continuous feeds at night. The picture below shows you that we have begun giving Ayden 5ml of breastmilk using a slow flow nipple right before his daytime feeds. While this is not a significant amount of food, it’s enough for Ayden to practice using a bottle. He has done really well with these small feeds, and we are hopeful. Praise!

The other remaining issue to be solved before Ayden can go home is his predisposition to SVTs. They don’t want to send Ayden home without being somewhat confident that he won’t experience this high heart rate. As a result, they are working out his medication over the next week or so, and then he will have a pacing study where they attempt to induce an SVT and map where the redundancy is occurring in his heart.

I think that that is all of the medical news. All has gone exceptionally well. I am learning to be his mama. Today’s adventure was a bath! He was a bit crusty and stinky, and while he screamed during the entire process, he has slept ever since then. (He probably won't sleep tonight. Grr.)

Ayden has also had some visitors the past few days. His NICU nurse Katrina came by to dote on him, and he was loving it. The same day, my friend Jessica came by and took pictures, which was super cool of her. I look forward to sharing those with you all!

I am sorry for the lack of updates. I am just trying to keep up with life “on the floor”!