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.

Another Update

Ethan's ventilator has been removed! He is still asleep. Hopefully we will see his eyeballs tonight. He is still doing very well. He is only on pain medication and 2 other "heart helper" medicines that he was on with the last surgery. He only has 2 chest tubes verses 3 last time. He might get these off tomorow.

We did get into the Ronald McDonnald House which is great. We're doing the Lucy and Ricky thing (twin beds) which is MUCH better than the full size we were in for 24 days last surgery. Can't wait to sleep in them tonight after having been awake since 4:30 am!

We're Home!

Thanks everyone for all your prayers and words of encouragement over the past 4 weeks that we've been at UNC (and even during labor and delivery). Dr. Stewart told us to plan on staying in the hospital 4-6 weeks after delivery and we're so thankful that it was only 4 weeks! God has been so gracious by answering prayer after prayer that has been lifted up during this time - including my prayers last night that he'd continue to do well off the oxygen and that we'd get to go home today or tomorrow.

Ethan has been doing very well ever since his heart cath yesterday morning. As we mentioned yesterday, he didn't need any oxygen during the procedure, but the nurses did put him on .1ml for most of the day while he was sleeping and trying to come off the anesthesia. By 6pm last night, they took Ethan off the oxygen to see how he would do and he made it all night long without needing any oxygen!

At 8:45 this morning, the attending doctor, Dr. Smitherman called us to let us know the good news that Ethan was ready to go home! So we packed up our belongings and cleaned out our room at the Ronald McDonald house and headed over to the hospital. We got to UNC by 10:45 am, gathered up his and our belongings, waited for his nurse to get out of a meeting, received our discharge papers and final instructions and were out of there by 12:15 pm!

For those of you who don't know, my (Julie) parents have been living at our house since July 4th, while their new house is being built. This has been a blessing so that our house hasn't had to sit empty for the past month and we didn't have to pay anyone to watch our dog. We surprised Mom and Dad this afternoon by not giving them a courtesy call, we just walked in the door with Ethan! Mom and Dad will close on their new house on Monday, Sept. 10th but will wait until next Friday, Sept. 14th until they move out so we'll be able to have a little extra help as we get used to having a baby at home with us.

Now the real fun begins as we get settled into our own routine here at home where we all belong! We will have monthly pediatric cardiology appointments with Dr. Robinson at WakeMed Hospital, which is much closer to home than UNC (15 min. instead of an hour drive). Ethan's first checkup will be next Thursday morning. We will also be scheduling Ethan's first pediatrician appointment for sometime that same week, preferably before the cardiology appointment. We will continue to monitor Ethan's oxygen sats during the night when he's asleep, and also a few times each day when he's awake and calm, just to make sure things are still looking good. We have a huge oxygen tank and several portable tanks, just in case we need it.

We will continue to give regular updates on Ethan, but it may not be daily now that we're at home. Just know that "no news is good news". Please continue to keep us in your thoughts and prayers. We've made if over the first hurdle (Norwood surgery) but we've still got 2 more surgeries to go (one in about 3-7 months from now, and another about 2-4 years from now).

2 weeks past surgery!

Today is a beautiful, though slightly overcast, day here in Chapel Hill. It's not too hot today, only in the mid 80's for a change, instead of the upper 90's! It's hard to believe that just 2 weeks ago today, Ethan had his heart surgery! We're so encouraged that he's been doing so well! Ethan had another good night last night, taking all his bottles by mouth! He has done pretty well with his daytime bottles too. His A-line was removed over the weekend, so that's one less line he's attached to, which is good. The down side is that now that the A-line has been removed (it's like an IV, except it's used to draw blood instead of give fluids), if they need to do any more blood work, they have to stick him with another needle.

Unfortunately for Little Ethan, they had to draw some blood this afternoon, right before his 4pm feeding. He made a big fuss about it, then was so upset that he had a hard time calming down enough to take his whole bottle. In fact, he spit nearly all of it back up and we had to finish the rest (about a third) by NG tube. His nurse said she learned to not do that again!

We also had speech come back today at 10am. As I forgot to update on Friday afternoon, not much was accomplished at today or Friday's speech visit. At both visits, they let me feed him and they just stood and watched. They said he was doing very well and wasn't giving off any stress signals, which is a good sign. Just to make sure things are going well on the inside, they want to do a swallow study tomorrow. They said it's painless, it's basically just an x-ray of him while he takes a bottle. His therapist, Jen, said I'm welcome to feed him his bottle as usual and they'll just x-ray him while he eats. Please pray that all goes well with the study tomorrow and that we can learn exactly what's going on while he takes a bottle.

As for moving to CICC, Dr. Stewart gave us the go ahead today, but there are no rooms available on CICC today so we'll be here in PICU another day, which is fine with us since we get more one-on-one attention down here. Also, speaking of CICC, our friend's baby, Shelby will be arriving tonight. She and her mom will be spending the night at the Ronald McDonald House tonight then Shelby will go to CICC tomorrow morning for her heart cath. We look forward to meeting Shelby and her mom tonight at Ronald McDonald and maybe they will get to come see Ethan tonight. It's so great to have some new friends who are just a few months ahead of us in this process!

A mother's reflection

We have made it through another day with our sweet little Ethan. I am very encouraged at how well his recovery has gone so far! Nearly all the swelling is gone, and much quicker than expected. This afternoon, the nurse started to wean Ethan off his sedation meds from the surgery. Even though he's still in a deep sleep and on lots of pain meds, he is still responsive to our touch. At one point, Ethan even moved his hand from laying down by his side, to being up next to his head. Dan said he looked like he was posed to throw a football. Not long after that, Ethan then moved his hand back down by his side. Maybe we have a football player in training?!? He has also been wiggling his toes when we touch his feet, and he's even started making faces at us...I wonder what he's dreaming about. Well speaking of dreaming, time for me to get a little shut eye too.

We are staying at the Ronald McDonald House and the accomodations are nice. The only problem is having to get used to sharing a full size bed instead of a king size. Since we made it past the 24hr. hump post-surgery, Dan went back home tonight to get some work done and so I could get a good night sleep. The nurses keep telling us to sleep as much as we can now while Ethan's under their care so we're trying to take them up on the offer. I guess that's one advantage to Ethan being hospitalized, we can get some extra sleep that a lot of first time parents don't always get during the first few weeks of their baby's life!

Thank you everyone for your emails and prayers the past couple of days since Ethan's birth. It's so encouraging to know we have so many people thinking and praying for us. Words of affirmation are my #1 love language so it has been extremely helpful in getting me through these first few days! Now that we're finally getting settled into a routine, we will do our best to keep this blog updated as often as possible. Thanks for being patient in reading our updates. So far we are very pleased that things are going better than we anticipated and pray that Ethan's recovery continues to go this smoothly!