I have to apologize first. I am sorry for not posting last night. We had a big long day and I was too tired when we got home. My body needed sleep!
Yesterday was another good but long day! I had a doctors appointment in the morning. Not sure why I did it but I scheduled it for 8:30 in the morning. Our schedule has been so off that we are normally just getting up at that time, so we were really tired to begin with! Everything went fine at my checkup. After so many appointments there, I won't lie I was ready to get out of there. The only thing we both wanted to do was go see Ellie!
Ellie was having another good day! They took her off another medicine. It was the flolan. This was helping with her pulmonary hypertension. Her vent was again in the 30-40's all day. They also started feeding her yesterday. It is thru a tube in her nose right now. They have to make sure she can tolerate it. She won't be able to have milk thru a bottle until her vent comes out. That could be a little while yet. The doctors tell us everyday when they do something that they have to do everything in baby steps. They won't do too much at one time in case she can't handle something. Ellie is handling everything they do change just like a fighter should! She makes her mommy and daddy so proud!!!
Jessica Barnard came to see Ellie yesterday! We are so glad she came to visit. Ellie got a beautiful handmade pillow, blanket and quilt. It is so pretty. I know Ellie will love it when she gets to use them all! Jessica, thank you for coming to see us. It meant a lot to have you there. I am so glad you got to see our little girl!
I got to hold Ellie again yesterday. As a mom, I can't really describe to you how it feels! She was awake for part of the time I was holding her. It was just so awesome. Just to see her little eyes look and try to focus on you, it melts my heart every time. Then, she fell asleep. It was about the most peaceful sleep Matt and I had ever seen her have. I am her mom so I am biased, but she looked so gorgeous laying there asleep. I just wanted to bundle her up and take her home. It's so hard to give her back and put her in her bed. That's where I won't lie, I have a really hard time. It's so good to get to hold her, but to have to give her back, I hate it. It's difficult. I know it's where she needs to be to get better, but I just wish she was ok. I'm human. I know God understands that. I also know though God has us here for a reason. Even though we are not for sure that reason right now, He is taking care of us. God is sustaining us through these days. I can tell you when I get down, I think of Him and what He has done for her and for us, and it lifts me up. We just have to trust and pray! He has done miraculous things already and I know He will continue to do so. To look at Ellie is a excellent example of that!
Matt and I went to a Cincinnati Reds game last night. Children's Hospital has a lot of discounted tickets or free tickets to different things around town. We have been encouraged by many different people to get out and have a date night. So, we got some free tickets to the game and decided to go. It was fun, but we learned how different our lives are now. The whole time I think we sat and thought of Ellie. When one of the Reds players scored a home run, they let off fireworks. We both looked at each other and said, "Ellie would not like this at all." Then I was hoping she couldn't hear them at the hospital (which I knew she couldn't). It's so amazing to have this love inside of you. We both love Ellie so much. I can't wait for the day when she comes home and we never have to leave her. And trust me, at this point I can't see us ever doing that if we don't have too! She definitely has us wrapped around her finger!
Well, I need to get going. We are still trying to get on a schedule so we are not exhausted every day. I think a lack of sleep is going to be part of our new normal. We don't mind really. Ellie is worth it all! I am so glad God gave us her! He has blessed us in ways I could never imagine!
Love you all!
Ellie's mommy
