*surgery update #7

Will is out of the PCCU and back to a regular hospital room. Still attached to him are: 5 leads going to the monitor showing his heart rate (the same shown in NICU pictures), the "red dot" on his toe to check his oxygen saturation, some "RA" lines (2 wires and something that looks like an IV), an IV in his foot (not hooked to anything, just there to get blood and give meds if needed), NG feeding tube in his nose, and an ID band around his ankle.

The red dot

We are getting back into his regular routine with feeding. I can't say the same for sleeping. Starting some time Saturday, Will went more than 30 hours with only about 2 hours in naps.  He wasn't crying or upset, but probably uncomfortable. We tried several things to get him to go to sleep and sometimes it would look promising...but within minutes his eyes would be wide open again. The key ingredients in getting Will to sleep in the hospital have historically been: pacifier, mobile, and swaddling. At home we mainly just need the swaddling, but sometimes will add the pacifier and rocking or swinging. With the help of the medical staff our guesses for this sleeplessness include discomfort from pain, being disoriented by the 24 hours of noise and lights, withdrawal from pain medicine, and other surgery related things. He finally went to sleep last night and is even more like himself today. He smiles some, kicks his legs, and looks happy to see us or a toy.

He (I mean We) may be able to go home by tomorrow! I think we are ready but it will be interesting to see how it goes. Normal activities like changing his diaper and holding him are difficult because it makes him uncomfortable, but thousands of other babies have had this surgery and their parents figured out how to take care of them so I know we will too. We are pleased that he is has done so well. The first 2-3 days of recovery seemed so bad but we continued to hope that he wouldn't be here for another extended stay. Tomorrow will be the 8th day of his hospital recovery after surgery...and we were told 6-14 days is typical. That's a pretty quick recovery!

I hope to have more positive news about his eating soon. His first attempt to eat from a bottle went surprisingly well. Sometimes he isn't interested in eating from a bottle at all, but other times he does fairly well. We will work with the nutrition staff after going home. Maybe soon he will eat all the time and no longer need the NG tube. He could probably nurse some too but I am going to have to see him a little more pain free before I attempt nursing. This is exciting to us because he wasn't doing either the week before surgery. So Will has gone from being 100% tube fed to eating on his own thanks to his heart repair! Not all the time, but more than he was before. In the past when he took a break from sucking he would be panting as if he were winded. Now he can pace himself and there is no more panting. Good signs that he will be successful pretty soon. It went so smoothly I wondered if he was doing it right! I haven't seen another baby eat in a long time so I don't remember what it looks like.

 The first bottle attempt on Saturday:

I wish we had video of the first successful post surgery burp. Chris and I leaned over both sides of the crib. I held Will up at the most awkward angle to hopefully keep him pain free. I had one hand on the back of his head and the other was trying to support his chest. As you can imagine I'm not comfortable handling his chest yet. The expression on Will's face was very unpleasant while Chris patted his back. After the burp we looked at each other very surprised. I don't think either of us thought it would work.

Napping with his new WubbaNub pacifier. It has saved me several trips across the room to his crib because it doesn't fall out of his mouth anymore!