We met with Ellie's new doctor today. The attendings switch out every two weeks at Children's. It was what they call a family meeting. We discussed Ellie's care and what to expect. Basically, what we came away from that meeting was that after the scopes they are going to do on Ellie, the doctors should all be able to get together and then meet with us about the long term plan. Yes, hopefully we will be presented with a long term plan soon! They have been taking Ellie's care day by day right now. Everything with Ellie is done in baby steps. Children's has never had a baby like Ellie before so they have to be careful in everything they do in treating her. Matt and I are both ready to know something long term. We are ready to get our little one on the road to long term recovery and get her home. What a day that will be! We know the Lord has placed excellent doctors and nurses in our path that are going to help make that happen.
The biggest blessing for me today was getting to hold Ellie again. I held her skin to skin. Oh, how I love doing this. I know Ellie loves it too, but it makes her mommy the happiest mommy in the world. To feel that little one so content and sleeping on you, what could make your day better. When it was time to put her back, Jessica let me put her back in her bed. I was nervous about it for a second! Jessica and a respiratory therapist helped, but oh how great it was. Matt nor I had gotten to do this ever. Again, its the little things we take for granted. She tolerated being laid back in her bed so well today. Jessica said it is probably better that Matt and I start doing it now. It's less moving her from person to person and upsetting her. I know Matt and I will do whatever we can for her. We love being as hands on as we can. We want Ellie to know we are there for her no matter what and we feel she can sense that more and more each day! What a great feeling that is.
This week has been a emotionally hard one for Matt and I. It's had a lot of ups and downs. We have been worried about Ellie as we always are. It took on a different route this week as we can began to learn the new awake, alert Ellie. She reacts to things differently. We hate to see her uncomfortable. As this week has ended she is seeming to be more comfortable. Some of it is the medicine, but today she was tolerating things a little better while awake. That is very good to see. Life itself has been hard this week for the two of us. Just when we are down and feeling worn out and just mentally exhausted, the Lord steps in. He blessed us tonight with such a blessing. We are so lucky that there are so many out there that the Lord has put in our path that care about us. The Lord knows just when to use you all and He surely did this week. We definitely needed the huge pick me up! It just leaves us speechless at times at how the Lord is taking care of us. What an awesome God we serve!
I hope you all have a great weekend! I know we will!! Sunday is going to be a great day for us. I can't wait to see and I know Matt can't wait to hold his precious Ellie all day long on this Fathers Day! What a happy day that will be for us three!
Love you all!
Ellie's Mommy
Ellie upset while her ventilator tube is retaped
