Saturday, June 11, 2016

6 weeks old!

I can't believe Shea is already 6 weeks old!  This means we have been home for 3 weeks...though it seems longer:)  Shea continues to eat and grow. He has been wanting to eat about every two hours, sometimes we make it to three hours though. We are lucky enough that he sleeps for a longer time at night.  I am having to wake him up at about 2 am to do a feeding. Paul gets up about 6 to feed him. Several times this week, Shea has woke us up wanting to eat!  Shea has also surpassed 9 lbs.  Last night he was a whopping 9lbs 6oz. I can't believe he still fits in the newborn clothes. We didn't have but like 3 outfits. Thank goodness to Grams who took us shopping when we were still in the hospital. Also to my sweet friends who were pregnant with me. (Their boys are about a month older than us)  I am glad they were willing to share their newborn clothes with us for a little bit.

We had a cardiologist appointment this week. He listened to his heart and lungs and he said he sounded good. We were able to go back down to 2 doses of Lasix and no more potassium!  Shea really is happy about no more potassium. :)  Afterwards we went to dinner, mostly to wait out the traffic. There was only two other customers in the place, we were very thankful for that. Shea did great, he sat in his carrier and drank his bottle while mommy and daddy ate. Well for the most part, he was held some too.

We have been so blessed with wonderful friends. This week our fridge has been full of food, super yummy food!  Big thanks to those who have been bringing and sending food to us. :) Mommy has even been trying to  venture out of the house when help is here. She made it out on Wednesday and Thursday!  Big deal people, big deal!!!

This next week brings in more support people. Hopefully with their help I can figure out my life a little better. I need more sleep, do some chores and get together some father's day gifts.

Wednesday, June 1, 2016

How is Shea doing?

We get that question all the time! And we have made the mistake in saying "He is doing well."  It's not that he is doing bad...but he is doing well for his condition. He still has half a heart. He still needs medications daily (and thoughout the day)  He will still need at least two more open heart surgeries to keep him alive. Who knows what other procedures and medications will be in his future. So Shea is doing well, and we call him a Rockstar because he is doing great in this situation. But please don't think he is out of the woods. We still need all the prayers, support and love.

I've included a picture of our last echo (last week)  You can see by the labels that his right ventricle is barely there. The top left chamber is larger than it should be. So we have added another dose of Lasix and some Potassium. There is also a "flash" in his mitrovalve. At this time there is no concern, but needs to be monitored. We will be seen in a few weeks to check everything and make sure it's getting better and not worse.

As far as growth, Shea is gaining weight! He is 8 lbs and 10 ounces at the time of this post. He is increasing his feeds. The largest being 95ml (just once) and the smallest 50ml. Mostly we average 73ml every 3 hours. Our home schedule is pretty much as follows: change diaper, feed Shea and pump at same time, change diaper again and put cute clothes on, mommy cleans supplies and makes coffee, stares at Shea, changes diaper, feeds/pumps, cleans supplies stares into amazing eyes...and so on. Of course I am getting other things done too. But not really :)  I am really enjoying cuddling my little man. He definitely knows who his mommy is!

And now for a little PSA. (I say this all with love!) We are so thankful for so much support from our family and friends. We've been advised by Shea's pediatrician and cardiologist that it is best that we limit his exposure to visits. At this time we ask that you love us from afar. Please join our journey through our texts, emails, Facebook posts, blog posts, and phone calls, but not by asking to visit with Shea. While we are so very excited to share him with our family and friends, we must keep him healthy so that he can heal from this surgery and be strong enough for his next two.