Friday, August 31, 2012

The New "Normal"

   

      Cliff, Dani and Cordelia are all settling into their new "normal"-- a pace that is still "busy", but much nicer than the constant daily hustle of the hospital. While they do have a home health aid that comes to their room at the Ronald McDonald House 3 times a week and their own 3 times a week trips over to the hospital (which is right next door), they at least have sanctioned quiet at night (yay!) a much larger bed to sleep in (double yay!) and can do their laundry right across the hall. You really realize how much you appreciate the simple things after life has been anything but simple!

     AND, Cordelia has had several nights where she has slept 7-8 hours a night...I think that might get a hundred "yays!" Despite the fact that Cliff and Dani do have to change Cordelia's feed bag (she will be on a feeding tube to "catch up" on as much nutrition as possible until they come back to Buffalo- she's on it from 4 p.m. to 8 a.m. every day and Dani tries to feed her normally in between), and Dani gets up through the night to pump milk for Cordelia,  Cliff said if they were getting 3-4 hours of sleep while in the hospital, that they're getting 6-7 now.


   So their new normal includes nights with a baby that sometimes fusses for a binky or a sore tooth, and getting up for "feedings" (even though a bit untraditional right now!)..It's at least somewhat typical baby stuff...Not nights where they finally get the baby to sleep only to have a nurse come in to take a temperature or a blood draw!


    Of course their lives are anything but "normal" in many other regards, but again, they are so grateful for these simple things and these simple moments with their beautiful daughter who is returning to health.


    When my mother in law was visiting them last Friday she recalls Dani saying that "she couldn't wait to snuggle in bed with her daughter."


    They got to do that MANY times over this week...just hang out, side by side, sleepy and quiet.





   Cliff ran out to pick up a pizza a put gas in his car yesterday...and was hit up by a homeless man in Cincinnati for spare change! He said it was nice to be able to run out for food though, and then eat quietly with his wife.


   They are now allowed to eat their meals in their room together as well. Typically the Ronald McDonald House does not allow food in the room, but in certain situations (like theirs) where there are immune suppressant issues they make an exception.


   Another part of their new routine is the 9 medications they give to Cordelia every day. They include her anti rejection medication (which they are still trying to tweak to the lowest dose possible while being effective. They higher the dose, the more her immune system is suppressed), steroids (to help prevent rejection), a blood pressure medication (because one of the necessary meds causes high blood pressure), as well as a host of antibiotics and magnesium supplements.


    Apparently the first 60-90 days are the most crucial as far as fighting infection, so all of these are important right now in helping her to reach that benchmark infection free!


     As for prayer requests, Dani said to just continue to pray for Cordelia's protection because her immune system is compromised.


   On one final note, perhaps one of the best parts of the "new normal" is the regular smiles that Cordelia has for mom and dad!!!





   



Sunday, August 26, 2012

Getting Discharged This Week!

If you haven't already heard, Cordelia is doing SO well that she will be discharged from the hospital either Monday or Tuesday!

As you can imagine, this is HUGE!!

Cliff and Dani were telling me this weekend that Cordelia's surgeon was incredibly worried about her pre-surgery. So worried that he thought if she would have gotten an infection her body might not have been strong enough to fight it off.

Now, he is so happy with her progress and how she is doing that they should be discharged early this week and will begin their next portion of the journey at the Ronald McDonald House full time for another 4-6 week. Their discharge date is 3-4 days earlier than the average for this kind of surgery. A huge praise to God for this incredible outcome!

What this means is that Cliff and Dani are learning the details about becoming Cordelia's primary caregiver-- everything from giving her her medications, to continuing some of her nutrition through the feeding and many other details that seem a little bit big and overwhelming right now, but will hopefully all fall into place once they begin to settle into this new phase of recovery.

Dani's recovery has been slow and steady. Please continue to pray for her healing. There has been some relatively normal pain associated with the surgery that she has been experiencing...The doctors have given her orders that she shouldn't be doing much of anything for a good month...hard for a new mom with a recovering baby, but she's trying! Pray for her healing and strength.

While all of this is VERY good news, Cordelia's next phase of life and recovery comes with new challenges. She has been started on her immune suppressant medications...she will likely need to take these throughout her lifetime so that her body does not reject the liver. This means that Cliff and Dani need to be very careful about where they go and who they see.

Cordelia will not be able to receive any of the normal baby vaccines because they would make her very sick...She actually cannot even be around a child who has just had a live vaccine because it poses a threat to her.  They are not allowed to take her into public places for 3-6 months and will always need to steer clear of things like public pools, etc. (Places where a child could easily pick up a virus).

Please continue to pray for protection over them all as a family-- over Cordelia especially as she will be prone to getting sick easily. And for wisdom, strength and energy for Cliff and Danielle as they continue to navigate this sometimes tricky road they are on.

Wednesday, August 22, 2012

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 20, 2012

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?!!

Saturday, August 18, 2012

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! 



Friday, August 17, 2012

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. 

Thursday, August 16, 2012

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.

 

   


Wednesday, August 15, 2012

August 15th- Post Op Post #2

10:15 p.m.
It's been a really good day! My sister and Dad both called with enthusiastic reports tonight that the day ended on a very good note. My Dad couldn't believe that Cordelia's stomach is virtually back to a normal size (for those of you who had seen her before, it was HUGE! So big, they could not button her onesies). Within one day, her color (she was getting more and more yellow/darker pigmentation due to the liver issues...kind of like jaundice, but much, much worse) and her belly are almost back to normal.

All of the leakage from her incisions that we were worried about last night seems to have resolved itself on its own today (Praise God! We know His healing hand was likely at work here!)...While they were having difficulties with her pain medication earlier today, by the end of the day they had her calmed down and quite stable.

Katie said that Dani was up and moving around-- that the nurses came in and helped her move around the room and that she took a little bit of a walk. She even tried to eat a bit...although Katie said at one point they tried to give her beef broth, which she didn't like...can you blame the poor momma?!!! Hospital beef broth after a surgery like that?!!! Ew!!!

We are counting our many blessings today...I am amazed by the many big and little miracles that are taking place daily on Cliff, Dani and Cordelia's journey.

Blessings to you all. Good night.


1 p.m.

Hi Everyone, Starting a second post because the first was getting so long.

Just wanted to say you are all INCREDIBLY generous!!! Cliff and Dani have received close to 150 (maybe more) meal cards in the last couple of hours.

That will hold them over, possibly until they are discharged, so thank you for doing that! Everyone is so compassionate and generous. It is so amazing to see! They are all set in the meal department for now...

Today's challenge is monitoring Cordelia's pain medications...it's tricky business right now. Dani is in some pain, but doing remarkably well all things considered. Send her a card this week!! The easiest thing to do is probably to send it to her attention at the Ronald McDonald House (address on the right side of the blog page).

August 15th-- 1st Day Post-Op

Update from Cliff this morning...

8 a.m.

 "Long night but already improving. Dr. B said that they don't give out tens but Cordelia is a nine with where they expected her to be after the transplant. Dani was by before 6 a.m. this morning to see her. They both look absolutely amazing. Cordelia no longer has a big belly and is already a little lighter in color. God is Good."


10:02


Pictures from Katie:

Cordelia recovering in ICU

Cordelia's current "Tree of Life"
A text from Dani on Monday (before surgery)She sent this picture to me with a note that said "Or liver?"
Don't worry, it took me a minute to get it, but then I was laughing out loud! She makes me smile at the ways she finds humor and laughter in every situation...

Cliff yesterday in the waiting room doing what he does best in crazy situations-- puts a smile on and lifts something heavy!!

As for prayer requests today-- when I talked to Katie at 9:30 she said the biggest challenge right now is that because Cordelia's body is trying to figure out how to use a new liver (which is an adult liver) that her body is processing the pain medication far too fast and every 1/2 hour or so she is in significant pain. Continue praying for her body to accept the liver, and for her and Dani to have good recoveries. 



(NOTE: So many of you responded so quickly that Cliff and Dani are set on meal cards for now. Thank you. Thank you. Thank you!!!)
Also, if you'd like to bless Cliff and Dani in a tangible way this week, they are running out of meal cards (Cliff will probably cringe when he reads that I'm even putting this out there, but hey, I'm his sister!!!). Cincinnati Children's hospital offers these cards for $5 a piece...each card buys one meal which is then sent to their hospital room (they call and order from a menu). Dani can't eat just yet (but Cliff can!), but they will be there for at least another 3-5 weeks with Cordelia as she recovers (and then they will move into the Ronald McDonald House more permanently for another month or two). Because they are not "patients" they would otherwise need to pay for their meals (2 people x 2-3 meals a day)

I've called and ordered anywhere from 6-10 at a time to have sent to their room and I know some of their friends from church have sent some too. These are super helpful to them while they are staying in the hospital because it is so convenient (and its a GREAT deal for the amount of food they get). 

You can call guest services at this number 513-636-5009, tell them the patient's name (you can give them Danielle Minter if you do it this week--- she'll be placed in a regular hospital room later today, while Cordelia will remain in ICU), give them a credit card right over the phone and they will deliver directly to the patient's room. 

Many thanks for the SOOOO many ways you have all helped in the last few weeks and months! Thank you. Thank you. Thank you. 



Tuesday, August 14, 2012

Surgery Day


8:45 a.m.

Good morning everyone. As you know today is surgery day!

For those of you not on Facebook Cliff and Dani posted this this morning...


Thank you to everyone praying. Almost time. God really does have this under control. We really have had His favor through this walk. I truly believe He will be guiding the docs through this

Dani went down at 5:30 this morning to be prepped. Her mom and Cliff were able to go with her while she was in the prep room.  They were expecting the actual surgery to officially begin between 8:30-9:00. Once Dani surgery begins they will get Cordelia and begin prepping her. 

When I talked to Katie (my sister) at 8:45 Cordelia was still in the room with them and they were just waiting for the staff to let them know when she should be taken down to be prepped. 

Here is little Miss Cordelia this morning...


I will try to post updates every couple of hours on this page...Please check back throughout the day. 



10:30 
First Update from Cliff-They got to Dani's liver and liked what they saw as far as bile ducts. They are staring on Cordelia and expect about two hours to get to her liver. They will update us every hour. 

12:30
Text from Cliff: "They have a good look at Dani's liver but haven't cut it yet. They are working on Cordelia's drainage so its ready for her new liver. Both of our beautiful angels are stable and doing well." 


So sorry, for the delay...there was a long period of waiting today where everything was going well, but it just took some time for the Doctor's to secure the section of Dani's liver and then pull it out as carefully as possible. 

That said, the 1/4 of Dani's liver that they needed was successfully removed and is being given to Cordelia as I type this. Praise God! Truly, all of this is such an incredibly blessing and miracle...the doctors, the procedure, everything! 

Here are the updates Cliff sent over the last couple of hours...

4:11
Still working on getting Dani's liver out. Cordelia is waiting patiently. 

4:52
Dani's liver is finally out. A couple more hours for her. She's a beautiful, strong and wonderful mother. Cordelia's hour to start healing is close. Praise God. 

5:21
Stitching up Dani now. Cordelia will have a new liver soon!


More to come...continue your beautiful prayers. Thank you for all of your words of encouragement and thoughts throughout the day!!!

8 p.m.
My Dad called to say that Dani is out of surgery and that Cliff and her mom are with her right now. She  is doing very well considering what her body has been through today. Cordelia still has another hour or so of surgery-- the surgeons are currently tying up and connecting the last of the veins/arteries. 


10 p.m. 
Cordelia's surgery is complete, but it sounds like some things are up in the air. She was in a post operative room and was having some leakage from one of her incisions. According to my dad, they needed to do a few tests on her and were considering the possibility of needing to take her back into surgery. My Dad promised to call as soon as he knew something. 


10:40 p.m.
Cordelia is in her room in ICU for the night. The surgeon's report is that everything with the liver went as well as it possibly could, but that her (Ascites- swelling and accumulation of fluid in the abdomen) was causing some challenges. They did say she may need to go back into surgery, but that it would not be until tomorrow if it is necessary. They're going to watch her through the night, let her rest and re-evaluate in the morning.

Apparently the surgeon also said that Cordelia's liver was so badly damaged that within a few days to a week there may have been little they could have done...Praising God for His timing and for Dani's courage. 


Good night...more updates to come tomorrow. 





Monday, August 13, 2012

Please Pray for Surgery Day-- Tomorrow August 14th




     I just wanted to remind everyone that surgery is scheduled for tomorrow.

     Dani and Cordelia are both undergoing final testing, blood matches, x-rays and scans today to verify their compatibility and get them ready for tomorrow.

     They all seem to be holding up well. Dani's mom and dad are on their way today, as are my parents and sister.

     Pastor Steve and his wife from Faith Fellowship in Clarence (Cliff and Dani's church) are coming in for the surgery as well.

     My parents, sister and Cliff will be sending me frequent updates throughout the day and I will be posting relevant updates on here as I get them, so please check in frequently throughout the day.

     The expected timeline will be:

     5:30 a.m. Dani will be taken into surgery to be prepped...I'm not sure precisely when surgery will start thereafter, but once it formally begins it is expected to be 6-8 hours, so we're hoping they'll be done somewhere between 12-2p.m.

     6:00 a.m. Cordelia will be prepped for surgery in a surgical room right next door. There will be some overlap in the surgeries...as soon as the portion of Dani's liver is available it will be taken next door and given to the surgeon's performing Cordelia's surgery. They are hoping her surgery will be complete late afternoon/early evening (around 5-6 p.m.).


     We will all be praying fervently tomorrow-- for protection for Dani and Cordelia, for wisdom for the doctors, as well as clarity of mind, steady hands and all of the details they need to be present for good surgeries, for peace of mind and heart for all of the family members who will be waiting-- Cliff in particular and both sets of grandparents-- Cliff and Dani's parents (who will all be at the hospital waiting).

     Thank you all. Please pass this on to all of the prayer warriors in your life as well and ask them to be flooding the heavens with prayers for this family tomorrow.


Philippians 4:7 And the peace of God that passeth all understanding will guard our hearts and minds in Christ Jesus. 

Friday, August 10, 2012

August 11th Update

Mommy and Baby hanging out...

Hi Everyone,

Not much in the way of updates today...everyone is in a bit of a holding pattern until next week. 

As you all know, surgery is set for Tuesday, August 14th (one day before Cordelia's 5 month birthday!). Unless something major changes this weekend (like a donated liver coming in, which is still a possibility) Cordelia and Dani will both be prepped for surgery on Tuesday morning-- Dani at 5:30 a.m. and Cordelia shortly after. These are both big surgeries with Dani's being estimated to be from 4-8 hours long and Cordelia's taking approximately 8 hours or more.

There is a relatively simple explanation of the living donor liver transplant process here if you want to read more. And here are is a short explanation taken from a 2010 USA Today Article:
The procedure, in which a segment of the liver is taken from a healthy donor and transplanted into the ailing recipient, is possible because of the liver's ability to regenerate. In weeks, both the old liver and the transplanted liver begin to grow back to a normal size, providing long-term function for both donor and patient. 
The first such successful transplantations, beginning in 1989, involved taking liver grafts from adult donors for transplantation into sick children, a procedure with fewer risks to the donor because only about 25% of the liver is needed. As pediatric living-donor liver transplantation grew more widely accepted, the technique was modified for use in adult patients, with up to 60% of the donor's liver taken
I spoke with Dani last night and she seemed as joyful and positive about everything as she always is...that is one of the things I LOVE most about Danielle, her irrepressible positive attitude. While we all assumed that a liver would have come in by means of organ donation by now,  Dani seems peaceful and grateful that they even have this option of giving part of her own liver to Cordelia...in her words, "if it means that Cordelia has less of a chance of rejecting the liver then that's great!"

Some of you have asked what happens after surgery- Will this surgery "fix" everything that is going on for Cordelia?

Those are complicated questions with most easy answers. One of the biggest concerns after a transplant surgery is organ rejection. Cordelia will be monitored closely in ICU for quite a bit of time, and then slowly moved to a non-ICU floor. The reason Dani said she may have less of a chance of rejecting her liver is because there is a small amount of research that shows pediatric patients who receive an organ from a parent have shown some slightly higher success rates as far as recovery.

One day at a time though. First and foremost is that we would all be praying for two successful surgeries next week, for Dani and Cordelia.

Current prayer requests are that Cordelia and Dani would remain healthy over the next three days (surgery is not an option if an infection is present) and that God's hands would be directing every small detail of pre-surgery, surgery and recovery. 

Dani's mom and my mom and dad will all be traveling to Cincinnati on Monday to be there for the surgery-- prayers for safe travel  for them would be appreciated as well. 


Thank you all for your prayers, encouragement and support. This is a big week coming up and continued prayers would be very much appreciated. 





P.S. The $5,000 fundraising goal has been reached which is wonderful!!! Thank you.  If you know of friends and family who would still like to donate please don't let them be deterred, the site can still take donations! 

Over the next couple of weeks I will post a few more updates about the Caring for Cordelia fundraiser and the needs we have in regards to it. 



Monday, August 6, 2012

Praying for Miracles


"You can think you have a mature faith, but trails test the strength of your faith in a way the good times in your life cannot. At those times, you either run to God or you run away from God."

(A quote Cliff sent along this week by Chris Spielman, former NFL player and current sports analyst)





While Cliff and Danielle are 400+ miles away, it seems I have learned more about them in the last two months than while they were less than 10 miles away for the last several years.

It has been such a blessing to see friends leaving comments here through the blog, or to hear the stories of how their church family has gone above and beyond what one might expect to love and support them in tangible, emotional and financial ways. It's been moving to see current friends and family, but even more interesting to hear from past friends and family who have come alongside them in one way or another to encourage and support them.

I must say, it's hard to admit that there could be any good in this whole situation, but if there were one thing that would be it-- that this incredibly hard challenge has shown that people (friends, family and even strangers) are capable of incredible good.

Speaking of past friends and family, I'm not sure if any of you saw this, but one of Dani's former suite mates from college posted this comment at the end of one of the blog posts last week:
"I want to remind you of something you said to me once in that small living room area in our dorm. You asked me what my favorite flower was and I think I said a rose. I wasn't sure. I asked you what yours was, and you said, "A dandelion. Because even through pavement an concrete it still come up, it still blooms." Ever since then, I have never seen that flower as a weed or an annoyance like others tend to...I see you and your strength." 
Lets continue to love and support them in all of the ways that we can...Cliff sounded tired when I talked to him last night...He said they tallied spending the last 44 nights in hospital rooms. I could hear "tired" in his voice.

Cordelia's sodium levels dropped to a dangerously low point over the weekend and last night that had to give her a very concentrated sodium mixture that can be harsh on the veins-- last time they did this Cordelia was incredibly upset (Cliff said more so than anything else they've needed to do to her) and they actually stopped the process partway through (though after she had gotten enough to bring her levels up). Her belly was also tapped late last week and she will most likely be tapped again before the end of this week. While this has become somewhat "common" procedure, the process always introduces a chance to introduce infection...please pray for protection over her.

Cliff has told me several times that the doctor's have called this a "tricky case" more than once...She is so small and her liver is so badly damaged that the challenges are incredibly intricate and complicated. For all of those reasons she needs a new liver and very, VERY soon.

That said, a surgery date has been set for either August 14th or 16th (to be confirmed this week). This means that if a liver does not become available by that date that Dani will have part of her liver surgically removed to use for Cordelia.

While it is "good" that they even have this option, it is not an ideal situation for many reasons.  It would mean that after surgery Dani will be recovering and unable to be with Cliff in the waiting room and in the weeks that follow Cliff will be in a position to have to run back and forth between two hospital floors to see Dani and Cordelia...Sigh.

Let's lift them up in prayer over the next couple of weeks...let's pray for a miracle!!! Please send this link to everyone you know and ask them to join us in prayer this week...prayers that a liver would become available for Cordelia. 


If you're not used to praying, here's a short prayer to get you started...


Dear Heavenly Father, We pray right now that You would bring a liver to Cordelia this week. We believe that miracles DO still happen. We pray that Your hand would show up powerfully in this situation and that You would go before Cordelia in surgery, be with her in surgery and be protecting her and healing her body afterwards. Be with Cliff and Dani this week as well as this has been a long road that has not offered much rest...Be their rest and their strength this week.                                   In Your Name We Pray, Amen. 



Wednesday, August 1, 2012

Potential Operation Date Soon to Be Determined



Hi Friends,

Yesterday was a big day for little Cordelia...she GIGGLED! Oh how I would love to be closer so that I could hear that sweet giggle. It's funny, there is so much going on with her that I think it is sometimes easy to forget that she is just a sweet little girl who is supposed to be working towards normal baby milestones...like giggling, and cooing and babbling. Cliff called me yesterday like such a proud Dad (and proud he should be!) to tell me that Cordelia giggled...

She also had a blood transfusion yesterday, which is a much more serious matter, but Cliff thinks she may have been feeling a bit better from the addition of the blood, which helped put a smile on her face.

A bigger piece of news connected to a BIG prayer request...an operation date is being set for Cordelia and Dani sometime in mid-August. Cliff said he is thinking somewhere around the 16th-18th.

What does that mean?

It means that the Doctor's feel like it is not worth waiting any longer than that for Cordelia to get a liver because her health will only continue to decline and the more it declines the more complicated surgery becomes...Sigh...

So...it means that on that date, if a liver hasn't come in before then (we are praying that one does!!!!) Dani will undergo surgery to have one quadrant of her liver removed and while she is undergoing surgery Cordelia will be prepped in another surgical room for the transplant.

There are some complications to doing it this way-- first and foremost Cordelia and Dani would BOTH be then recovering from major surgeries on different floors of the hospital, which would be hard for Dani and Cliff.

Secondly, Dani's liver is not ideal, but it is usable. It is not ideal because there are what the doctors call "vascular anomalies", which basically means she has quite a few more veins around her liver than usual and it makes it a little bit more complicated to remove.

Dani's friend Joyce is also in Cincinnati (with Dani's mother) this week. Joyce is being tested to be a living donor as well...Typically they like to use a parent's liver if they are going to use a living donor, but if Joyce's is a better match it may be a good option.

So, please join me in praying over the next couple of weeks....Please tell everyone you know, especially those prayer warriors in your life to be praying for Cliff and Dani and Cordelia. It takes my breath away to think about how major and challenging all of this is. Our real hope is that a perfect liver comes in for Cordelia in the next two weeks so that Dani can be available to be with her after her surgery and not recovering from her own.




Psalm 31:14
But I trust in you, O LORD; I say, "You are my God."