Ellis Is Twelve Weeks Old!

It has been two weeks since Ellis had her tracheotomy, and she is finally feeling like her happy self again. She is resting better and has more energy during the day. Her doctors are slowly altering her feeding schedule so that we can hopefully feed her larger amounts several times a day instead of continuously. That will make it much easier on us when we take her home and will let her have a more normal baby schedule. This is our first experience with baby spit-ups and burps!

We are so blessed to have our baby girl feeling better and on the road to a more normal life. We are still not happy that she had to have the tracheotomy, but we can see that it is the best thing for her right now and she feels a lot better. God is answering our prayers every day. We hope to be going home soon!

Ellis Is Eleven Weeks Old! (Yesterday)

I'm a day late in celebrating Ellis's eleven week birthday, but she hasn't noticed yet. Ellis is doing well after her surgery although she is still in the recovery process. She is still on the ventilator, but only at minimal settings for support because she is breathing all on her own. She has been able to resume her normal schedule of physical therapy, occupational therapy, and speech therapy and seems to be feeling much better. She has still needed some pain medicine, but the amounts are tapering off. Greg and I are being trained in small steps to care for her new trach in addition to the feeding tube. While scary, we know it is necessary to be able to care for her when we take her home. We still do not have a definite date for dismissal, but we hope it is within a week or two. Ellis has had several visitors in the past week and loved seeing each one. We all feel so loved and cared for by our generous friends and family! Love you all!

We don't have any photos from this week because Ellis has been camera shy. But here are a couple of sweet ones from a few weeks back when Aunties Lori and Steph visited. (Allyson, Neal, Melanie, Omar, Andrew, Rayna, Chris...send me yours too!)

Monday Evening

Ellis is doing better today, after a few days of not feeling very well. The trach surgery was really hard on her, but she is an amazingly tough little girl. Today she is breathing easier and needing slightly less pain medicine. We hope tomorrow is even better. She is still very sedated, but it won't be long until she is awake enough we can interact with her again. We miss holding her and seeing her smile! We can really feel everyone praying for us. Thanks to you all.

Trach Surgery

Ellis is recovering this afternoon from her tracheotomy and is resting comfortably. She is sedated right now and will be for the next day or so while everything begins to heal. Our nurse assures us that after today things will begin to get easier and she will start feeling a lot better. Ellis will have to be in the bed for five days and will be watched around the clock by her nurses because she has a "critical airway." After that we will be able to hold her again and she can resume her normal schedule of playing on the mat with toys and taking naps in our laps. This has been a very hard process for Greg and me, and today especially has been full of anxiety and dread. But we keep reminding ourselves that this trach will allow her to grow strong and overcome her problems much more quickly and she will finally have some relief from struggling to breathe all the time. We are thankful for all the prayers that have helped us so much. We are glad to be one step closer to home.

A Big Week

Ellis will have surgery this Thursday for her tracheotomy. Again, we are comforted by her doctor's assurance that this is a temporary measure to help her breathe better, rest better, and grow stronger. We will update everyone after the surgery. We appreciate everyone's thoughts and prayers.

Here are a few more pictures from the past week. Because Ellis is over two months old now, she is allowed to go to the play room! This has been quite an adventure for her because previously any trips out of her hopital room meant surgeries or tests. But once she realized no one was going to hurt or scare her, she enjoyed the change of scenery. Now we can go every day if she feels up to it.

Ellis getting snuggled in for her first ever stroller ride. We just pushed her down the hallway, but she talked to every person she saw all the way and made her nurses laugh.

Getting used to the playroom. Her grandfather Russell happily watches.

Ellis on the floor mat playing with toys with her occupational therapist. It's so much fun she doesn't know it's therapy.

Ellis in her crib playing with rings and things. She likes to kick and bat at them then tell us all about it.

Ellis Is Nine Weeks Old!

Ellis has had a good week with lots of visitors. Pictures will be coming soon. She has enjoyed meeting some more of the very special people in our lives. And she got lots of good snuggle time with her Grandmother Robin and Ken this past weekend!
Ellis continues to make progress in most areas, and her doctors are very happy with how she is doing. She is over ten pounds now and is cooing, smiling, reaching for toys, and interacting with us even more. The one area in which she is still having problems is her breathing. Some tests earlier this week showed that she is not handling her oxgyen levels like she should and is having apnea episodes very frequently, especially as she sleeps. This would be very dangerous for her when we take her home, and she is not getting any restful sleep. So her doctors are recommending a tracheotomy on a temporary basis. Greg and I are not very happy about this, but we know it is the best thing for her. She will be able to breathe comfortably on her own for the first time. The muscles that control her airway are just not developed enough yet to handle opening and closing on their own, which is the same problem that caused a need for the feeding tube. But in the same way, her doctors are very hopeful that as she grows these muscles will get stronger and she will not need the trach for very long. She might have it for a few months, or even up to a few years. But she has done so well in so many other areas we are hoping for only a few months. In the mean time, we will be learning some baby sign language to help her communicate with us and will keep teaching her words and sounds to help her language skills develop even though she will not be able to vocalize.
Ellis will have surgery for the trach next week, but we don't know which day yet. This will add several more weeks to our hospital stay, but if all goes well we might be able to come home by the end of the month. We appreciate your continued prayers for her healing and safety.

Ellis Is Eight Weeks Old!

Our little girl is growing up so quickly. Ellis is already almost ten pounds! Earlier today I impatiently said to myself, "I can't believe we have been here eight weeks!" And then I looked at some pictures from the night she was born and said, "I can't believe we have ONLY been here eight weeks!" To think about the condition she was in when she was born and the amount of surgery she has had, it truly is a miracle that she is doing so well now and we can be talking about going home soon. We still don't know when that will be, but we hope within a few weeks.

Here are a few pictures from the past week.

Dear friends Bart and Bridgette came to visit. Ellis enjoyed being rocked to sleep.

Her grandmother Jan gave her a ducky bathrobe. It has made bath time much more fun! At least for me.

Some of the sweet children at church made Ellis cards. We hung them in her room and have gotten so many comments on how precious they are.