Ellis Is Sixteen Weeks Old!

Ellis is still settling into her new home, but each day gets a little easier for all of us. She is growing quickly and is up to 13 lbs., 13 ozs. We spend our days playing, singing, messing up and changing diapers, and napping occasionally. Ellis had a check up again this week, and her doctors are pleased with her progress. Her biggest challenge right now is managing her own oral secretions, which is a problem that really is keeping her and us from doing a lot of the things we would like for her. But we are hopeful that some new medicine will take care of it. We are reminded every day how blessed we are. And thank you again to everyone who has taken such great care of us with visits, food, calls, and prayers!

The Winnie the Pooh Dance - Thanks, Nelda, for the fun mobile!!

Whew!

The last week and half is such a blur! We have been thrilled to be home with our baby girl, but it has been much more difficult and stressful than either of us anticipated. In addition to all the normal "bringing baby home" anxieties, we have had to manage lots of medical equipment and supplies, therapies, medications, and a nasty bout with baby stomach reflux. Things are calming down a bit, but we still have a lot to learn and figure out. The sleeping situation gets a little better each time, but right now we are still dividing the night into shifts. Nothing around here is ideal right now, but we will manage and we have faith that things will get easier. We have had to rely on our faith that God will see us through this challenging time, just as He has brought us over so many obstacles already.

Ellis seems to be feeling great and is loving her new home. She seems excited to have things to look at and places to go. She is also growing very well! As of Thursday, she is 13 pounds, 12 ounces and just about 24 inches long. (The doctor has now put her on a little diet because she is getting fluffy.) In the past couple of weeks she has begun to reach out and grab just about anything she can get her hands on and then tries to eat it. She is sitting up with assistance and has great head, arm, and leg control. And we love it when she mimics our facial expressions and mouth movements! Pretty soon she will start picking up the sign language we have been trying to teach her. Ellis is continuing her physical, occupational, and speech therapies now that we are home, and we are very pleased that the therapists can come to our place instead of us having to get her out five or six times a week.

We have loved and appreciated all the cards, calls, emails, and visits from our friends and family! And several of our angel friends have brought dinners and snacks, which mean more to us than we can say. Something so simple can make such a huge difference in a very stressful situation. We can't thank you all enough!

Ellis sends big hugs to all our CCHMC RICNIC friends. We appreciate all the love and care you have shown to her. She would not be here without you! Ellis especially misses her primary nurses Candace, Jaci, & Darci, and Morgan, who gave us a great send off. We promise to keep in touch and keep you updated on her progress. We wish you were here with us!

In spite of being in a sleep deprived panic mode since last Wednesday, we have paused a few times to enjoy our baby and snap a few pictures. When we look back years from now, we will focus on these memories and try not to remember the stressful ones.

We saved every single card we received in Cincinnati and looked at them often for encouragement. Thank you!

Ellis in the playroom at the hospital right before we left. She loved it! Thanks Val!

Cuddles the evening before we took her home.

The first time Ellis ever went outside! She was amazed at the sunlight, breeze, and sounds! It was so precious.

Since the sweet baby was not used to bright light yet, Granny Janny provided some shades. Ellis did much better on the ride home than I did.

Ellis has met some new pals at home, like Froggy Friend.

Her buddy Robbie loaned her a cutesie Halloween outfit. Dress up has become a favorite activity.

For me, at least.

Ellis loves the camera and is learning to pose and smile!

Where has the free time gone?

So being busy is no surprise. We knew the day was coming when we would be doing everything at home and that it would be a tall order. We've had a great deal of gracious help from parents and friends since coming home, but the peace of mind we had when nurses in the hospital were tending to Ellis full time is long gone.
We've been told that things will get better over time and it is true that each day has been a little better than the last. Of course the progress is a little slower than we would like, but we are thankful and blessed that things are moving right along. We would gladly take a dose of perfect for tomorrow though.
The pediatrician made a few adjustments yesterday and Ellis slept like a rock all night. When I left for work this morning, both girls were sleeping away. If we can make this a trend, it will be one less thing on the list of things.
It has certainly been a major undertaking, but we are so happy to be home and that Ellis is doing so well.

Home

We finally made it home Wednesday after 100 days in Cincinnati. Ellis is doing great and seems to be excited by her new surroundings. Greg and I are exhausted and stressed but very grateful for all we have. We still do not have our internet turned on at home yet ( I am currently borrowing a neighbor's) but when we are using our own bandwidth again I will share some great pictures and describe more of Ellis's progress. Thank you to everyone for all the prayers! We still need them. Managing her care at home is proving to be more challenging than we had anticipated. But Ellis is still the strongest one here. :)

Update

We will now be going home Wednesday instead of Monday. Ellis has to have several tests before she can be released, and there is one that can not be scheduled until Tuesday. So we are just trying to be patient and are happy that she is doing so well.

Ellis Is Thirteen Weeks Old!

Ellis celebrated her thirteen week birthday by getting a "button." This is a new type of feeding tube that is very small, very easy to use, and much more comfortable for our girl. Because it is tiny, Ellis can spend more time on her tummy now, building those strong crawling and lifting muscles. We had to wait until she was big enough and tolerating her food to get this new kind, so we are so happy that she has met those goals. We also made a nice visit to the playroom and took another ride in the stroller down the hospital corridor!

Plans are still being made for us to go home Monday, provided we can squeeze in all the tests she has to have first. So far only one is outstanding and we are having trouble getting it scheduled. But we are trying not to let that slow us down. We have had so much to do in preparation for moving her home. We are excited and anxious! Ellis is just happy to have another big tube out of her tummy!

Ellis looking at herself in the mirror. She smiles at the pretty baby looking back at her and tries to touch her!

Closer to Home!

Great news! We are going home Monday!

Ellis is doing very well and her doctors say that she is ready to go home. Greg and I have been learning all the things we have to know to care for her on our own, and after a few more days we think we will be ready. We are so blessed and so thankful!

Going home is a huge step forward for Ellis, but it will not mean the end of her challenges. She is a strong and resilient little girl, and we have every confidence that she is going to flourish in her own home. We will still be going to lots of doctor visits, both at home and back in Cincinnati. And further down the road she will most likely have to have some more surgery for her jaw and to correct some cosmetic issues. She will still be receiving occupational, physical, speech, and swallowing therapies as well. But the stronger and bigger she gets, and the more her muscles develop, the sooner she can be rid of her trach and feeding tube. All that is in the future. For now we are focused on getting her home and helping her ease into her new comfortable environment and schedule. She has never been out of the hospital before, so Monday will be a big day of firsts! First time outside, first car ride, first time in her stroller, first time to sleep in her own bed. Please be in prayer for all of us as we prepare for this big transition and especially for Ellis as she enters a whole new world!