We're Home at Last!

We slept in this morning at Ronald McDonald House (RMH), had brunch there, then called Ethan's floor to check on him around 10:30am. His nurse said he did great all night long - with feeding and with his weaning off oxygen. He was completely off when we called, but still had the cannula tubing across his face, just in case. We got to the hospital around 11am and about an hour later his nurse got brave and took off the cannula and continued to monitor his oxygen sats. He managed to stay in upper 80's! Then the doctor came by and said Ethan was looking so great, that he felt comfortable discharging us if we felt comfortable taking him home! So it took a while to get discharge papers printed and we finally got out of there at 5:30pm.

We took Ethan back to RMH to pack up our belongings and clean up and check out. We were out of there by 6:30pm and began our hour-long commute back home. But first we had to stop by our pharmacy to get Ethan's prescription filled. Our pharmacy wasn't open, so we went across the street to try 2 others and they were both closed, they told us to go a couple miles down the road and we should find a 24-hour Walgreens. Do you have any idea how difficult to find a pharmacy that's open after 6pm on the weekends?!? Finally, after dropping off the prescription, waiting an hour, grabbing dinner, and picking up the prescription and then getting our dog at Dan's sister's house (in our neighborhood), we're home at last - 4 hours after leaving the hospital (it's normally only a 1 hour drive if we're driving straight from home to the hospital)!

Thank you, thank you, thank you for all of your prayers for us this past week, and even before then. We know God heard all your prayers and answered them on our behalf this week. On Tuesday, when we met with Ethan's surgeon after he was done with the operation, he told us to expect a 5-10 day recovery after this particular surgery, and sure enough, here we are on Day 5 and we have made it home! Ethan seems to be a quick healer - his first surgery we were told to expect 4-6 weeks recovery time in the hospital and we got out of there when he was exactly 4 weeks old - 2 days short of 4 weeks from his surgery date! I know that we wouldn't be where we are without God's grace to us and Ethan in giving him such a speedy recovery.

Even though we're home and Ethan's doing great, it still physically takes 6-8 weeks post-surgery for his sternum (breastbone) to completely heal so we will still have to be very gentle with him until then. We have a couple of post-op appointments in the next 2 weeks - 2 to see his pediatrician and one to see his cardiologist. Ethan's only on one medicine this time - Lasix (a diuretic to help keep draining off excess fluids in his body).

Our first post-op appointment will be on Monday so you may not here from us again until then. In the meantime, be praying for our friends in SC - Scott, Rebecca, Wyatt and Annabelle Butcher, they are scheduled to have a C-Section on Monday to deliver their little girl Anabelle that has been prenatally diagnosed with HLHS and will be having her first heart surgery next week. See link for Annabelle on right to follow their journey.

Still at UNC...

Well it's Tuesday morning and Ethan had to have his Lasix med (a diuretic) upped to twice a day instead of once a day. This is because his doctors think there might be a little fluid around the lungs, which is causing his oxygen saturation to be lower than when he was in the PICU last week. We'll see how he does with the extra dose of Lasix, and if that's what does the trick, then maybe we'll get out of here by the end of the week.

Dan learned how to change the NG tube this morning, and he also changed his first poopy diaper over the weekend, so we're slowly going down the checklist of things we need to do in order to get out of here! Also, Ethan's in the process of having his newborn hearing test that all babies have to have before being discharged from the hospital. The hearing test is now done and the tech said he passed the hearing test for both ears!

Thanks for your prayers for his feeding. He's been very consistent with his feeds, mostly being able to take the entire 65cc bottle at each feeding. He only had one feeding over night where he was too sleepy to take the whole bottle and had to have about 20 cc's given by NG tube. Hopefully, by the time we go home he won't need the NG tube either.

Prayer Request for the Day:
Please continue to pray that Ethan can get weaned off his oxygen (he's only at .2mL/hr which is barely anything at all, but he's been at that same place for the past 24 hours now), that's the one thing holding us back from going home right now. The nurse just said that he's sound asleep and his oxygen sats just dipped even more so she's turning him up to .3ml/hr. This is not the right direction for getting out of here, but at least he's in good hands here. We'd rather be here a little longer and get his sats right, then to go home and have him turn blue from lack of oxygen and have to rush back over here.

parent training

Yesterday (Saturday) was a long, busy day of parent/nurse training here at UNC. So busy in fact that we didn't even have time to go see Carolina's first game victory of the season (GO HEELS!!! what a great start to the season!) .

We got to mix all his thickened bottle feeds yesterday, as well as getting to actually feed him. Friday he did very well and took all his bottles without need of the NG tube. All the excitement must have worn him out because he was only able to take about half of each bottle and had to be fed the rest through NG tube. Speaking of the NG tube, I (Julie) got trained on placing the NG tube down his throat so that I'll know how to do it when we get home in case he still needs it. Today, it's Dan's turn to learn how to place the tube. Ethan also was put back on a little oxygen on Saturday, not because his pulse ox was lower, but just because the doctors wanted him to have it for one more day. Also, we learned yesterday that Ethan has a little reflux so he's on one more medication - Prevacid - that he'll have to have once a day.

Also, with tomorrow being a holiday, it looks like we may not get out of here until closer to Tuesday now instead of today or tomorrow. But that's ok, because we'd rather be here where he can be watched closely one more day by the hospital staff, than to be home on a holiday when not many places are open.

Thanks for continuing to keep us in your prayers, the light at the end of the tunnel is getting brighter each day. Not long now until we're all back home where we belong!

Still in CICC!

Well we've made it 26 hours and we're still here in CICC! I (Julie) talked with Ethan's doc this morning and she said he did well overnight and that we are probably looking at going home in less than a week, as long as we have no other setbacks! Since home is where we desperately long to be once Ethan's doing really well, please be in prayer that everything continues to go smoothly so we can be on our way soon.

In order to be headed home, we finally have been given the goals to work towards to clue us in as to how close we are to leaving here. First, Ethan needs to be completely weaned off of his oxygen (which he's close to right now). Second, he needs to start gaining weight and continue to have a good pulse ox (oxygen saturation level) once he gets off the oxygen. Third, he needs to still work on his feeds and we have to learn how to put in and take out his NG tube (this has to be changed weekly or whenever he may happen to pull it out). Fourth, we have to learn how to fill the NG tube with his supplemental feeds. Fifth, we need to learn about his oral medications - the correct dosage and how often to give it to him. Once we get all these things nailed down, then we should be able to leave!

In the meantime, we're just having a fun time hanging out with him and finally getting to hold him and play with him. We are including some short video footage as promised in yesterday's blog. Enjoy!