Adventures with Ellie: Christmas joy

Well, I lied a bit in my last post. Ellie did not spend Christmas in the CICU with her buddy, Chance. Chance was able to move into the step down unit on Christmas Eve – celebrations! Her friend Kendale was allowed to go home on Christmas… what a wonderful Christmas miracle! Ellie did still spend Christmas in the CICU, but she had an adorable Christmas outfit to do so in, at least.

Ellie in her Christmas outfit that Daddy picked out.

Ellie had an odd week. She is in heart failure now, which was the goal. I know this… but it’s hard to watch. She’s back to being very congested and constantly sweaty. So sweaty that she’s soaking all of her clothes… so she’s now just wearing a hair bow (can’t go without that). Her oxygen saturation is fluctuating, but higher than it had been in a while. As I write this, she’s sitting in the mid 90’s. She’s bouncing from 100% to 75%. Her breathing rate and heart rate have increased from where they were the past few days, so it’s hard for me to establish a baseline for her. Her liver is enlarged again, although it seems to have gone down a bit today compared to yesterday. And she’s storming regularly still… even with increased meds. This morning, she had two storms in six hours. Ugh. The silver lining… she’s scheduled to have her pulmonary arteries banded on Wednesday. So, it’s a good thing that she’s over-circulating blood into her lungs… this means that the vascular resistance in her pulmonary arteries is down and she’ll be more likely to keep her oxygen saturation in a safe range after they put the band in place. If she still restricts these arteries, they’ll give her medication to relax them. So she shouldn’t get too blue, really. But it is scary that there is an acceptable level of “blueness” post-op. I’ll write another post about this shortly (maybe post it tomorrow)… I’m still processing some of what I talked with the surgeon about today… not ready to unload that yet. Here are a few sweet pictures of her to remind us of just how wonderful our busted up little mess is!

Ummm... can she be any more adorable? Sweet smiles.

A sleepy bug showing off those pretty lashes.

Let’s rewind on how our Christmas went. Christmas Eve, Brandon was working, but Mom & Dad came down to bring the boys to us. We spent several hours together and Mom & Dad got to see Ellie (in her Christmas tutu) for a while. Ellie started storming while they were here, though… so I think it was a harder visit than I would have hoped for. Mom saw Ellie get Ativan, too… which is never a fun thing. The boys were happy through the day and excited to “rent” more movies at the Ronald McDonald House (RMH). B was off work early and brought some Christmas gifts with him. I was super emotional opening gifts. This is never how anyone ever wants to spend Christmas. However, I have never, ever felt as blessed as I have this Christmas. I was suddenly thankful for all of the things that were on the back burner of my mind in previous Christmases. I was thankful for our health… I was thankful for our home (and home away from home). I was thankful for the love and support that has been poured out on us lately. We knew we always had support of family and friends… but until you’re in a tight spot, you don’t realize how freely others give of themselves to make your burden a little lighter. It’s truly remarkable and for the first time, the Christmas spirit was alive and well for what it really SHOULD always be about (and not so much about gifts and looking nice and rushing around to 5 different places). How refreshing. This made me even more emotional, though. Of course, we missed so much of our extended family and church friends we usually get to see on Christmas, but it was nice to simplify the day and focus on the meaning of it, more.

Mom holding Ellie on Christmas Eve.

We had an amazing Christmas Eve dinner at the RMH and Santa made an appearance after dinner. He called us up by room and gave us a sack of Christmas gifts to bring back to our room. The boys were so excited and we let them open one gift that night and save the rest for Christmas morning. They were in awe that Santa had personally delivered their sack of gifts. Christmas morning was so exciting, for us and the boys. They were thrilled with the gifts from Santa and loved lounging around and eating breakfast in their Christmas jammies. We had lots of snuggle time and play time to enjoy. Around lunch time, Grandma and Grandpa Maier came down to spend Christmas with us. B met them over at the hospital so that they could go up and see Ellie, then headed over to the RMH to meet up with me and the boys. The boys were so excited to see them. Grandma Maier is the best at capturing everything on camera… thank goodness for that! It was nice to have some calm, uninterrupted time with them on Christmas. We opened gifts and played, then went back over to the hospital to eat dinner in the cafeteria. Denny & Sheryl watched the boys for us in the playroom of RMH while Brandon and I came back over to the hospital to work on trach care with the nurses. What a great way to enjoy Christmas. Look at all of these sweet pics from Christmas day.

The boys rushed over to see Santa & Mrs. Claus

Spiderman (Lance) shooting webs

Hulk (Kaleb) - he's smashing here.

Bug and some of her gifts

What a sweet smile!

The boys playing in the play room at RMH

Grandma Maier and Ellie bug on Christmas

Daddy & bug bug

Grandma Maier with Hulk and Spiderman

Grandpa Maier showing Kaleb how to play some tunes

Friday was a great day when we got to enjoy some time together with the boys and Saturday, while Brandon worked, I spent the day alone with the boys. They were very ornery for me. Yesterday morning (Sunday), I left Ellie’s room after spending the night with her. We had an okay night (no storming). I went back to the RMH to get ready for the Schroer Christmas party and live stream our church service. My family would be down around lunch time. Once we were ready, we met everyone over at the hospital. I was excited to see so many Team Ellie Bug shirts! Adorable! Mom and Dad went up with me to see Ellie quick (since only parents and grandparents are allowed in the CICU) while B lead everyone else back to the RMH. Ellie was sleepy and the nurse came in and casually said, “we just gave her a sedative and a paralytic so that we could get an arterial blood gas on her… so she’s sleepy, but she’s coming out of it now”. WHAT?? My blood boiled a little. You gave her a drug to paralyze her while I was gone and didn’t think to give me a call or anything?? Awesome. When we were in 6Central (the cardiac step-down unit), the resident had called my cell phone while we were out for a bit to ask if it was okay to give her Tylenol. Now we’re just pumping her with paralytics and not calling first?? Not cool. I understand that they had to do this to get the arterial blood draw and that they needed this blood draw to get a clear idea of how her heart is functioning before her surgery… but a call… a call would have been nice. Grrr! End rant. Ellie did wake up for us and look around a little. Mom and Dad were happy to see her like this because when they saw her on Christmas Eve, she was storming and it was the first time they’d seen her so uncomfortable. To see a calm, happy Ellie was a relief. For that, I’m glad!

We left her room and met the rest of the Schroer crew over at the RMH and opened gifts and enjoyed some pizza together. We let the kiddos play together for a while and took some pictures of all of us in our Team Ellie Bug shirts. Love these pictures! It was so wonderful to see everyone and spend time in their company. The boys were excited to see all of their “friends” (aka cousins). We are so touched that our families traveled so far south (on Christmas day & on Sunday) – taking up an entire day – just to bring Christmas down to us at the RMH. What a blessing they all are. We feel so very blessed. Thank you so much for your continued prayers… we’ll need them more in the coming weeks than we’ve ever needed them before. Thank you, prayer warriors!