This has been a great 24 hours! Matt and I got to spend about 6 hours with Ellie today. It was so great to just sit and watch her. We haven't been able to do that much because there have been so many doctors in to see us and check on Ellie. That's the first good news. Since Ellie is doing better, we don't see the doctors that much. We are so grateful for them all, but also grateful that she is doing better and they are not in their every five minutes.
Here is an update on all of Ellie's stats:
Her Vent was turned down to 62% when we left!!!!! How awesome is that!!!!! We believe their plan right now is to slowly turn it down to get her breathing on her own. They are also needing to begin to reduce the amount of sedation medicine they have her on. They have not started this yet and we are not sure when this will begin. The goal of all this is to slowly get her doing things on her own again and it not causing her any stress.
Ellie is not getting near as aggravated when they move her or things beep around her or when babies cry around her. Babies with pulmonary hypertension do not like noise or being touched. The nurses say it aggravates them or upsets them. Normally you will see their oxygen levels drop when they move her, change her diaper, or check her vitals. Ellie's levels dropped a little today when they were doing all of this but nothing compared to what they were doing on Saturday. This is all positive! They even changed her IV lines today. There was beeping and alarms going off for a good 10-20 minutes. Ellie seemed to get a little aggravated by it but all of her levels were back up by time we left. What a blessing to see. Our little girl is getting stronger by the day!
Here is the another BIG positive. The ECMO machine that they were going to use on Ellie Saturday had remained in her room right next to her since Saturday. Today when we walked in, it was gone!!!!! We were thrilled to see that. It means to us she is getting further and further away from ever needing it. Please pray pray pray that she doesn't. While we know it would help her if she needed it, it is even better if she never does.
We had to say goodbye to Dr. Greenberg today. Oh, how we are going to miss him. Dr. Greenberg has been such a blessing to us. He has been there for some very crucial days and made some challenging decisions that have helped our Ellie. Dr. Greenberg made the decision to do the CAT scan on Saturday. Had it not been for that Ellie would be on ECMO right now. We will be forever grateful to him for all he has done.
I got to change Ellie's diaper today! It was so exciting! Matt and I get so excited to do anything we can, so changing a diaper is the best. I have to admit, I have changed diapers before and it never scared me. Today, I was a little nervous. I can't wait to do it again and again. I'm sure Matt and I will be fighting over now! Hopefully we will be good at taking turns.
It was so nice today to just sit and watch Ellie. The past couple days I have really been able to take her in and notice all I can about her. She has this hair all over her legs and arms that is fuzzy and so adorable. She has the cutest tongue!!! Her toes are so tiny and precious. Matt and I both are so ready just to hold her and kiss her. We know that will come in time and it will be such a special moment to us both. The doctors have mentioned it can possibly happen when they begin to take her off the sedation medicine. We want whats best and most healthy for her, so we are patient to wait for that special moment! We know it will come soon enough!
I think we ask this every time, but please continue to pray for Ellie to keep improving. It's so wonderful and such a gift from the Lord to see this happening. I wish you all could be here to see it. It's such an awesome thing to see the Lords hands at work. And boy are they working!!!! I have said it so many times, but our Ellie is a fighter. She is proving that everyday!
Oh, and I am continuing to get a lot better. I am trying to get as much rest as I can. All in all I feel good. I am slowly not taking my pain medication as much. My main problem I am having right now is swelling. I am trying to stay off my feet as much as possible, but the trips to the hospital are slowing the swelling going away. Hopefully the swelling will be gone in the next couple days. I am ready to be fully recovered to spend more time with our little girl!
Thank you all again for all of your prayers. You can never imagine how much they are helping all three of us. We feel so much strength and peace. It's an amazing feeling to feel. We love you all!!
Love,
Ellie's Mommy
One quick update- Matt just called the nurse. It is now 11:27 here and her vent level is at 55%!!!!! Praise God!!!!!!! We can never give him enough praise and glory for what HE is doing!!!!!!
