Happy Days

Ellis is feeling much better now since her feeding tube surgery is over. Her stomach upset is settling down, and she has been sleeping better these past few days. We still do not have an estimated time before we can take her home, but we know it is getting closer. Her doctors have a list of things they need to watch for and test, and the list gets a little shorter every day. We hope to only be here a few more weeks. Ellis's breathing and swallowing issues continue to be the most pressing items. We can tell they are both getting better slowly which gives us a lot of hope. We are relying on God's timing for it all.
Greg and I celebrated our 7th wedding anniversary yesterday by taking a little drive about half a mile down the road to what is supposed to be the best pizza place in Cincinnati. We were not disappointed.

Ellis made us a card also, with help from some of her nurses. That's her actual little handprint. It's the sweetest card ever. From the sweetest baby ever!

Surgery Day

Ellis had surgery this morning for her feeding tube, and she is doing very well. She is currently sleeping after getting some pain medicine. She was extubated about an hour ago and seems much more comfortable. Earlier she tried to remove the tube herself, which she has gotten very good at lately. Since I had a little talk with her and made her put on her mittens, she has been behaving nicely. This weekend she will be resting and recovering, and I hope the same is true for Greg and me.
Thanks, all, for your prayers and kind words. Even though this is the least risky surgery or procedure she has had, we were still just as nervous.

Ellis Is Seven Weeks Old!

Ellis celebrated her seven week birthday by starring in her first real photo shoot! The hospital hired a professional photographer to take some pictures for marketing and PR, and some of her nurses chose her to be one of the featured babies. I got to be in some of the pictures, as did her regular day nurse. We will get copies of the pictures eventually, and I will be glad to share. Ellis slept through the whole thing, but still looked cute as a button. You might see her someday on a billboard or brochure! (This picture is not one of those from her photo shoot. It's just a cute one of mine. )

Tomorrow Ellis will have surgery for a permanent/temporary feeding tube. (Permanent because it is the kind that is surgically inserted into her stomach, temporary because we hope it will not be that long before her swallowing functions improve and she can have it removed.) Greg and I will be trained on how to feed her this way after we take her home. Of course we wish she did not need the feeding tube, but she will be a lot more comfortable once it is done, and this is the only way right now for her to get the nutrition she needs without risking aspiration and possible pneumonia. We also take comfort in the fact that most babies in her situation with feeding tubes only have to have them for several months, or usually at the most a couple of years. We are just glad it is one step closer to taking her home and giving her the chance to do "normal baby stuff."

Here are a few more photos I snapped recently.

Auntie Kelly came to visit for a day!

Ellis with her new little lamb, a gift from dear friends Amy & Ben.

Napping together

Thankful

Ellis is resting well today after a rough start to the week yesterday. Before she can have surgery for her feeding tube, she had to have a 24 hour probe test in her stomach, which kept her very uncomfortable and made it harder for her to breathe. She handled it like the strong little girl she is. I think it might have been harder on us than on her. But the test is over now and she has been sound asleep all morning, catching up on some much needed rest. Our little wonder woman.

I have been asked many times lately how much longer we will be here and how we are holding up. We still do not have an estimate of when she can leave the hospital, nor do we know when her next surgery will be or what will need to be done about her breathing issues. At times the slow pace has been discouraging and the uncertainty frustrating. Yesterday after watching her struggle all through the day, I was exhausted and disheartened that we still had a long time to go before she would be able to feel better and rest well again. I took a break from watching her and went to the cafeteria for a few minutes. On the way down the elevator, I met and began talking to a lady whose little grandson was having brain surgery here that day, the first of many it sounded like. After that first surgery, they would have to wait for his next seizure and do more testing. Then when I got back to Ellis's room, I walked in on two nurses discussing the little baby in the room next door, who is "a DNR," meaning they will keep him comfortable but can not do any more. I have many encounters everyday here just like those. We pray daily for all the little children here who need healing and for their families. And even on bad days like yesterday, I am reminded that we are so blessed to have our little girl and the promise that we will be able to take her home, whenever that is. We are so thankful that there are solutions to her problems, even if we are uncomfortable for the present time. We know God has his hand on Ellis and is in control of her life and ours. Love to all of you who have been supporting us and praying!

Ellis Learns About Compromise

What do we do when all the baby bathtubs in the hospital are occupied? Make do!

Have a great weekend, everyone!

Ellis Is Six Weeks Old!

It seems like just yesterday to me, but it was six weeks ago exactly that Greg was driving me from the office to the hospital just to be on the safe side, since I had been having pain all day. Little did we know that a few hours later I would be having major surgery and Ellis would be born! I can't believe all that has happened in 6 short weeks and how drastically our lives have changed (for the better).
Ellis has had a good week and continues to recover from her little setbacks last week. She is breathing much better on her own now, but continues to struggle from time to time. Her doctors are doing a trial to see if she can tolerate milk in her stomach over the next few days, so I am pretty much sitting at her bedside staring at her around the clock in case she spits up. She is at risk of aspiration since her swallowing issues persist. I do let the nurses watch her from time to time. I am just a nervous mama. But Ellis has been playful and mostly in a good mood this week, and she seems to enjoy the stories we have been reading to her and the new toys her nurses have been bringing.
We continue to thank all of our friends and family for the prayers you have been lifting up. We know she is better because of them. We really hope and pray we are getting close to being able to bring her home, although no one here will give us a time frame just yet. Ellis is the most patient of us all.

Breathing Easier

It was an answered prayer late yesterday afternoon when Ellis got her breathing tube out, earlier than we had expected. She did well breathing on her own again throughout the night, although she has a lot of congestion that is bothering her. The tube itself causes congestion, and she was struggling with a lot of it before the tube went back in again, so she has a lot to work out. It's so difficult for a tiny baby to coordinate coughing and breathing, and especially difficult for Ellis since some components around her airway are not working correctly yet. But she is doing better now in general that she has been all week, and we are glad to see her more interactive and alert.
In the upcoming week, her surgeons will be making decisions about her feeding tube, what other breathing tests are needed, and what the long term plan will be. We continue to pray for healing, wisdom, and patience.
Ellis has been an angel this morning and is breathing and resting better than she has in some time. She was awake and calm for a while and enjoyed playing with her pink bear and reading books with her dad.

Five Weeks Old

Ellis is doing some better today. She is still on the breathing tube, so she has to be kept sedated. We miss interacting with her, but all indications are that this is still a temporary measure. We hope she can get rid of the breathing tube in a day or two. She is on antibiotics as a precaution, but we are grateful that the fluid in her lungs has not gotten infected. She has been resting easy and we are all hopeful that these few days of rest for her little body will allow her to "reset" and get back to her normal happy self. After she gets to feeling better, her doctors will start talking to us about her feeding tube and what will need to be done for the short and long terms.
Today Ellis is five weeks old! When we get discouraged we try to remind ourselves how much she has accomplished in those five weeks and how strong she has been through challenges that most adults could not handle. Thanks to everyone for the calls, emails, and especially prayers. She is a blessed little girl.

Prayers Please

Ellis has had a rough couple of days and needs your prayers. She is stable and comfortable now, but she has had lots of trouble since the weekend breathing and swallowing. Last night at 3 am her doctors decided she needed to be put back on the breathing tube, we hope temporarily, to get her over what they think is an infection of fluid in her lungs. They are still doing more tests to figure out if that is indeed the problem. Her swallowing test yesterday also did not go as well as we had hoped. It showed that some of the muscles and nerves that are needed to protect her airway when she swallows are not working correctly yet, most likely due to the way they formed around the mass before she was born. In time these muscles and nerves could grow to do their jobs, but for right now she will have to still have her feeding tube, even after we are able to take her home. We are not sure how long it might take for her to learn to swallow properly, but we are optimistic that her doctors say she can keep working on it.
We know these things are minor setbacks on a long road that has been, and will continue to be, mostly positive. God has His hand on our little girl and we have faith she is going to be fine. We share these things with our friends and family so that you all can share our hopes.

More Pretty Pictures

Here are some more of our favorite pictures. Ellis says enjoy!

The sweet baby entertaining herself with Duckyface

Cuddling with her grandmother Robin. Ellis loves all the attention!

Comfortably snoozing with Ken

Pretty in pink. Love the precious little hat from Auntie Lori!

Making faces at Greg. She likes to reach out and feel his fuzzy chin.

Ellis is four weeks old!

In celebration of Ellis's four week birthday, here are some more of our favorite pictures from the past month.

Ellis has already figured out how to hold her own pacifier...most of the time. The duck attached to it helps.

Her grandmother Jan holding her for the first time. Ellis will pick out names for all her grandparents someday soon. This was several weeks ago, so Ellis still had lots of swelling in her face at that time.

Her grandfather Russell holding her for the first time. She was so comfortable she took a nap.

Auntie Steph visiting, when Ellis was still in the large pod with lots of other babies.

Ellis looking adorable, me looking exhausted. Pretty typical these days. ;)

Greg holding our baby's hand. She has my long fingers and fingernails.

Auntie Ally made us coordinating bracelets! Too cute!

Ellis's awesome nurses give her little certificates for each new accomplishment. She is getting quite a collection.

We are so proud of our tough little girl! We can't wait to see what the next month brings.

Jessica

Such a cutie!

I just can't get enough of our baby girl. Every day she feels a little better and is more interactive. She is totally off her pain medicine now, which is something I think most adults could not do considering the size of her incision. But she is tolerating everything like the little wonder woman she is, and we are so proud of her. She had another line removed a couple of days ago, which means that we can now give her nightly baths. Greg and I enjoy that more than she does, but afterwards she loves the drying and snuggling and sleeps better than ever.

Sometime this week Ellis will have a swallowing test, which will tell us more about what needs to be done with her feeding tube. We are praying that her damaged vocal cord doesn't prevent her from swallowing properly so that she can get rid of the feeding tube entirely. We are also still waiting for the surgeons to tell us when her drain line can come out, which will be one step closer to healing and going home.

Ellis had a great weekend visiting with her grandparents Robin and Ken, who both got to hold her for the first time. She loved all the attention!