Out of ICU!

Just wanted to let you all know that Cordelia was moved out of ICU today!

Not only that but Cliff and Dani said that she was smiling ALL DAY LONG! Way more smiles than they have EVER seen from her before.

I've gotta say, that's probably one of the most incredible things I've heard in a couple of months!!! I can only imagine how much better she must be feeling to be finally smiling spontaneously.

The doctors joked that a little girl who was smiling that much was not allowed to be in ICU.

So they are back on the 4th floor where they were before Cordelia's surgery and have had a lot of visits from the doctors and nurses who were caring for her before the surgery who are SO excited to see her doing so well now.

While not of huge concern at this point, her blood work today did show some slight "rejection" (when the body rejects the organ), but we were told that this is perfectly normal, that it helps the doctors to fine tune her medications and that it actually helps her body to build up strength/tolerance to the organ.

She was also showing a small amount of blockage in the bile ducts...also not out of the ordinary, but something we could pray that goes away and does not get worse.

Her pain also seems to be subsiding somewhat...in typical Cliff and Dani fashion they joked that their baby gets morphine for her teething pain! (She has been teething over the last couple of weeks!)

Cliff and Dani sounded good...tired, but good. Dani said she is starting to be able to eat more without feeling nauseous, so that is a very good thing.

All good things to be thankful and full of praises for!

Healing, Recovery and the Blessings of Others

Hi everyone, If you are already on Facebook you may have seen some of these posts, but for the benefit of those of you who are not I'm copying some of the updates that Dani posted on Facebook for you to all have the blessing of reading. 

Cliff and Dani received their I-Pad on Monday and Dani is typing beautiful posts on Facebook! Here is a picture they posted this morning!!!

(A facebook post from Dani)

I was thinking though and when we started this journey it could've been a dark scary road and trust me there are moments. But this has grown our faith and really cemented so much of the Bible and God's truths for us. I never wanted Cordelia to go through this but since she had to I see that there have been way more blessings than bad things.

(A second post from Dani)

At first we started trying to think of one thing we were grateful for. Like at least her lungs work well, she has a functioning brain, her heart beats wonderful. You get the idea.....today I was thinking of what we had to be grateful for and there was SO much I don't think there's a computer big enough to store it all. 

I know we're not "out of the woods" yet but I know with everything in me that God will make her well and we will get home to "regular" family life. At the beginning of this another patient family said everybody's normal is different. it really is true and what a relief that statement has been! There are so many things to give thanks for. 

I wanted to say......to our families, friends, church family (the one we attend and the many other churches that have heard of us or someone we know is a member and have been praying us through this. What a marvelous example of how the church body works as God's out stretched arms) coworkers, neigh

bors, nurses, doctors, pca's, the cleaning staff, basically the entire hospital staff and liver team, pediatricians, obgyn staff, the blood draw lady at the kaleida lab on sheridan, the wonderful case workers at bluecross, our employers, acquaintances, and even kind strangers....thank you!!!! 

I know this is terribly in adequate way to thank you all. I'm sure i've probably missed some people. You've blessed us more than I could ever put into words or even imagined was possible. There has been such an outpouring of love, We are awed and humbled. Through prayers(our largest need), cards, letters, baked goods, home cooked meals, thoughtful care packages, the way you've all loved on our daughter, conversations, texts, prayer warriors, visits, helping us make ends meet....we've been so blessed. I'm missing so much here. Thank you all! When we get home I have a hug for everyone of you! 

I really don't know how we will thank everyone. I can't wait to be able to start serving in the church again and volunteering so we can help others like we've been helped. God is so good! He's given us so much of His favor. Held us through this. The promises He makes like, "I will never leave nor forsake you. I know the plans I have for you plans for good and not evil" I know it may seem odd to some He doesn't want our children to suffer this is a fallen world, but He really has taken care of us through all of you and so much of His grace and mercy. Even just the peace He brought before surgery, such a big amazing loving God! Thank you all.

I was thinking though and when we started this journey it could've been a dark scary road and trust me there are moments. But this has grown our faith and really cemented so much of the Bible and God's truths for us. I never wanted Cordelia to go through this but since she had to I see that there have been way more blessings than bad things.

(Cliff and Dani's comment on the blog after receiving all of those wonderful food cards and then the I-Pad...which by the way, Cliff told me yesterday he and Dani picked up some I-tunes gift cards so that they can start downloading music and they were watching "Too Cute" (from Animal Planet) with Cordelia yesterday!!!)

Thank you to all those who contributed to the I-Pad. Your generosity is so humbling. We appreciate this so much! It will come in very handy. I believe I should be able to figure Skype out. Although I am a bit of a Luddite and generally speaking err toward the old fashioned way of doing things part of my job at Verizon was helping people set up their devices. I ve never really used much of the stuff myself though. If anyone who would like to Try skype with us and is quite patient, please contact one of our phones or Facebook and we'll give it a go.

I know Cliff misses watching football with George, it's a bit of a tradition. I think being able to watch the game and at least guy talk with him later will really make him happy!! Previously he's been trying to do that on a 3x5 screen at least when we're not trying to make sure our little ninja isn't trying to take tubes out. I was concerned for the potential eye damage it was causing. 

We really appreciate the outpouring of love with meal cards. You've all been more than generous. I'm still humbled by the generosity we've experienced. I lost a bit of weight in the surgery recovery process and really appreciate the meal cards. Thank you. I think Cliff was able to catch a picture of Cordelia smiling this morning and I will try to post it later. I know we're not totally out of the woods" yet and won't be for awhile. Up until now the best we hoped for is that she wouldn't get worse, that she would hold steady. God gave her a fighters spirit. This is the first time in 5 months I can look at her daily and see Cordelia getting better. It is a miracle! God is so good! 

Monday August 20th Update

Hi Everyone,

Just wanted to post a quick update because I know you all are praying for and thinking about Cliff, Dani and Cordelia.

It's been a bit of a tough day... all good progress, but tough for Cordelia. She underwent a very short surgery this morning (about 45 minutes) where the Doctors went in and stitched up all of the abdominal muscles that they had left unstitched after her surgery last week to leave room for inflammation and to allow for healing and in case they needed to go in and do more surgery on her liver, which they have not needed to do (a blessing!).

My dad said that Cordelia is actually in more pain after this surgery than after her liver transplant last Tuesday because everything around her organs and abdomen in now very tight and because of the surgery, very sore. Please pray for baby Cordelia tonight...that the pain would subside, that she would be calm and peaceful, that God's hand would be on her.

Dani is recovering slowly. She was discharged today and is going to sleep at the Ronald McDonald House with her mother tonight. It will be nice for her to have a nights sleep without nurses, etc. coming in to do stats and check on her.

She is still feeling pretty nauseous and moving slowly. My parents leave tomorrow and Dani's mom leaves on/around Wednesday at which point Cliff and Dani will be back at this on their own. They could use extra prayers and blessings this week for strength and energy--- For Dani to start to feel better in the midst of taking care of herself and Cordelia and for Cliff as he navigates trying to care for his wife and his daughter.

If all goes well, Cordelia will be in ICU for just a few more days. Cliff said that later this week the nurses will allow them to do a "trial run" up in ICU where they are standing by as Cliff and/or Dani administer Cordelia's medications and do everything else necessary to care for her right now.  After that she will be in a regular room for 2 weeks or so and then they will be discharged. Once they are discharged they will remain at the Ronald McDonald House for another 6-8 weeks for outpatient treatments.



P.S. Cliff and Dani received a new I-Pad from some of you today!! They are THRILLED. There are many things they are going to be able to do wit it...Thank you all for the very sweet gift and blessing! They have been checking all of their email, doing internet searches, etc. from their cell phones. The I-Pad will allow them to listen to their own music in their room, email much easier, do internet searches, etc. etc. If they are really ambitious maybe they'll even be willing to skype in a few weeks!

Cliff joked today that he has been checking Bills updates/coverage on his cell phone (when he actually has a free moment!) so now he'll be able to check updates more easily! (:

Also, a great big THANK YOU to the many of you who donated food cards to them. Cliff said they will be able to easily each eat 3 meals a day for the remainder of their time in the hospital without a worry!!! Food is, after all, on of the great medicines, right?!!

Momma and Baby

Wanted to share a picture of the "two angels" Cliff sent to me earlier today. 

Cordelia is finally unhooked from enough of the equipment that she can be held again! She spent a LOT of time in Grandma and Grandpa's arms today and of course in Moms and Dads as well! 

It was another good day for Cordelia. My parents said she was very alert and that she was even cooing and babbling as if she were trying to have a conversation with them. 

Dani is doing pretty well, though not feeling totally up to par today...She is in some pain and between the surgery and a couple of the medications she is on she has been battling some nausea throughout the day. Please be praying that she gets the rest that she needs and that her recovery would be swift and complete. 

Here is another picture of Dani and Cordelia from last night...Texted to me with a note that said, "Mother of the year." I couldn't agree more! 

A Few More Photos...

Just wanted to share a few more photos with you all! Cordelia is doing so, SO well. It is remarkable and amazing and a total blessing! God's hand is moving strongly in her life and she is growing stronger with each day.

She was put back on her feeding tube today, which means she is getting "real" (whatever that is in baby hospital language!) food again and my dad said she is off almost ALL of her pain medications.

One of the very sweet nurses brought this cute little pink robe/gown/dress in today so after they put it on her my dad sent this picture with a note that said, "All dressed up with no place to go."

And here are a few pictures of Cliff with Cordelia today...

Cliff has been moving back and forth as much as possible between Cordelia's room and Dani's room. He's sleeping in Cordelia's room while Dani's mom is in town and can stay with Dani at night. Dani is also recovering well...I've been bugging Cliff and my Dad for a picture of her and Cliff as soon as she's ready (:

Thanks for all of your thoughts and prayers! There is still a long journey towards health, but we seem to be off to a great start! 

Friday, August 17th

A very serious, but alert, look on little Miss Cordelia's face this morning! 

My Dad called with a report this morning-- he said everything is going very, very well. That Cordelia looks great and that Dani looks as beautiful as ever. 

Cordelia has been on supplemental oxygen since her surgery, but they are hoping to be able to take her off that today. They are also hoping to be able to resume her IV feeds and are very happy with how she is doing. 

She will undergo one more small surgery on Monday- apparently after a liver transplant they stitch the skin back together, but leave the muscle underneath un-stiched in part to allow room for any normal inflammation, but also in case they would have needed to go back in to do further surgery. Because everything is looking good they will go in and stitch together the stomach muscles-- a sign that she is healing well and that the Doctors have no immediate plans for any further surgery. 

Amen! 

My dad said they have also been able to taper way back on her pain medication...a good sign that she is both recovering well and that her body is starting to process the medications at a more normal rate. 

All VERY good news. 

My dad promised to try to take a few more pictures throughout the day, so if he sends them my way I will be sure to post them here. 

August 16th, Post Op Day 2

    The good news is that there are NO updates today...It's been kind of a 'no news is good news' sort of day. My parents spent much of the day in Cordelia's room and said that she is pretty sedated right now, which is good for her from a recovery standpoint...it's allowing her body to rest and heal itself. No big concerns from the hospital staff today. They are just keeping on an eye on her to make sure her incisions are in good shape and my Dad said her blood pressure is starting to get to a 'normal' level.

    Dani is also doing well...she's in a significant amount of pain, but has been as sweet and charming as ever to everyone who comes her way! Her mom and Dad are in from Buffalo this week, so they've been keeping her company and helping in any way they can.

  That's about it...My sister and I are in fundraising planning mode. As we gather our thoughts we'll begin to let you all know what we need for the September 30th Benefit.

   In the meantime, thank you ALL for your generosity in offering to help in SO many ways. You are ALL a blessing to our family.