Jason's Message

Dear Friends,

I want to take a a moment to thank everyone for the support you have offered Jason, Brittney, Will and their extended family over the last two months.  The countless prayers, phone calls, messages, and gifts have been so uplifting! I think I can safely say Darby Kate has taught us all something. I know my relationship with Christ has been strengthened and my family has grown closer than ever before. I am amazed by what this little girl has been able to do in such a short time!

Darby Kate's memorial service and dedication were a perfect tribute to a great warrior for God. Never have I been more proud of my little brother than I was when he looked to the Lord for the strength to stand and speak at his own daughter's memorial service to challenge others to be warriors for God, too. I hope you will take a moment to listen to his message...

http://www.youtube.com/watch?v=ohX9qzVBTnk

Thank you again from the bottom of our hearts.


With Love,
Jennifer (Jason's sister)

Memorial Service and Dedication

Dedication and Memorial Service for Darby Kate Roberts. 

Thurs, May 30 @ The Baptist Church at McAdory (4954 Eastern Valley Rd., McCalla). Visitation 9am and Service 10am. Graveside service to follow at Tuscaloosa Memorial Park. In lieu of flowers our family requests that donations be made to Wings of Hope Pediatric Organization. Please mail donations to the following:
2437 Chestnut Road
Vestavia Hills, AL 35216

We invite all who loved and supported Darby Kate and our family through this journey to come and celebrate her tremendous life. Though it is a memorial service, we intend to dedicate our baby to the Lord knowing that she is already safe in his arms. Though tears may be shed, we want this service to be primarily a celebration of Darby Kate's wonderful life, and our Eternal King's grace and glory.

Sunday, May 26, 2013

Darby Kate received her angel wings and a new healthy heart at 7:22 this morning. It was a peaceful death and our sweet baby now has a heart full of eternal life in the arms of Jesus. Thank you all for sharing in the blessing that was given to us. We were so undeserving for God to have given us sweet Darby Kate who touched more people in 2 months than Jason and I will in our lifetime.
I want to thank all of you that have followed their journey with Darby Kate.

Friday, May 25, 2013

For the records, God has answered another prayer. She is now on room air and not needing oxygen to keep her SATS up. God is good all the time! Keep on praying prayer warriors and do not give up now. She continues to improve daily. Please also start praying for the future donor family. Thanks and God bless you.

Thursday, May 24, 2013

Darby Kate had a great day, but still no pee pee.

Wednesday, May 26, 2013

Darby Kate has been good today but still no pee pee. She had her wound dressings changed and physical therapy. Both went well and she did not become too aggravated. Jason and I had a meeting with one of the transplant doctors this afternoon and they have decided to go ahead and list her again. She will be eligible for a heart without her kidneys working as long as all her other organs are in working order. We are still praying for her kidneys to work. She would be healthier going in to a transplant with everything working.

May 20 & 21, 2013

Monday, 20th - Praying for success in getting Darby Kate off of the respirator again tomorrow. They started to slowly wean her off today, and if she is still holding steady tomorrow, they will be able to take the tube out.

Tuesday, May 21st-
The ventilator was successfully removed and she is doing good. Praying that she can remain this way. Our next big goal to overcome is functioning kidneys.....I told Darby Kate that we will all be doing a pee-pee dance!!! Please keep praying!!!!

Good Day

 

 

Darby Kate after getting a bath and getting all of her dressings changed.

Darby Kate had a good day and so far it has been a good night. They bathed her and changed all her dressings today. The goal for tomorrow is to extubate. Thanks for the continued prayers!

Uneventful NIght:)

Darby Kate had an uneventful night. She was alert and was opening both eyes looking around. She became very aggravated about 3am so they stopped her feeds and gave her something to sedate her. She is resting now. She has one of her favorite male nurses today. She usually has good days with him. I think she just tries to show off!!

Heart Cath

11:45 a.m. I spoke to soon....as soon as I posted the last update I received a call from Darby Kate's nurse that they were getting ready to go ahead with the catherization. I left work and headed back to the hospital. She is getting ready to go down in the next few minutes. I spoke with the doctor and if they see any issues they will go ahead while she is under anesthesia and do a surgical procedure to fix the problem. Please pray. As you know she is critical so this makes just the catherization itself a dangerous procedure. Thank you for your love and support of Darby Kate!!

 

On her way to the catherization lab. It takes this many to move her equipment along with her. It will take them about an hour to get her from her bed to the surgical table with the amount of equipment she has hooked up.

6:45 p.m.   Darby Kate is back and resting. She did fine. She never gave the doctors any concerns during the procedure with her sats. There were no post operation problems so there were no surgical procedures needed. Just body needs more time to heal for everything to work. Heart still seems weak and we are praying it can become stronger over the next couple of weeks if we can stay away from any more setbacks. We also just need her kidneys to start working!!! Thank you so much for the sweet words and prayers. You kept my mind busy reading them all during her procedure.

Thursday, May 16, 2013

She lets us know that God is with her every time she shows us those beautiful eyes.

9:30 a.m.   Good Morning!Darby Kate had a rough night with her blood pressure. The nursing staff up here are awesome and kept her under control. She finally stabilized this morning around 3:00 am and has been stable since. The plan now is to keep her sedated and comfortable so she can rest. She will be on the ventilator over the weekend and the decision will be made when to take her to the cath lab. We are hoping it will be before she is extubated. Thanks for all the prayers and I ask that you please continue!

"Talk to the hand cause this rock star is getting her beauty sleep!!"

Wednesday, May 15, 2013

10:00 a.m. I just received a call from doctor and they are having to reintubate Darby Kate. She has swelling and is showing signs of another infection. They are unsure but have taken cultures and sent them off. She had a rough night so they went ahead and made the decision because she has no wiggle room and they are afraid if she gets any worse then her body will be to weak to pull through. Please pray. Her heart rate has been irregular and they are unsure if it is because of the possible infection or other issues going on. Jason was dropping Will off at school but should be at the hospital with her by now.

10:30 a.m.  She seems to have stabilized somewhat since she was intubated. Please continue to pray!


8:30 p.m. Darby Kate is still riding the fence. They have kept her comfortable and sedated all day singer body can rest. Please continue to pray and we will update as soon as anything changes.

Tuesday, May 14, 2013

11:30 p.m.  Sorry for the late update. She has been acting up all afternoon. Jason called me at work late afternoon and told me she was starting to have an irregular heart rate but it wasn't too concerning. When I got to the hospital her heart rate was becoming more irregular and dropping for longer periods of time and the look of concern on the doctors' and nurses' faces had me worried. They started her Epi meds back because her pressures also started dropping. Her heart rate is still irregular but not dropping drastically as it had been. There are still a lot of questions left unknown with what is going on with Darby Kate. Please pray that we can get on a path and at least know what kind of path we are trying to follow..... Her little complicated diva self is about to break our hearts in half!!

Back to Work

He loves his baby sister. I let him touch her foot and he told her, "Wake up Darry Kay"!!!

Brittney: 11:00 a.m. Today was my first day back at work and it has been hard but I've already talked to Jason 3 times checking on little miss priss!! It looks like they will not have to do the small procedure on her neck which means she will not have to be intubated. They are looking to do another catherization. There seems to be issues that are not explainable. She is only remaining stable with medicine and the doctors still don't know what is causing her difficulty. They are now unclear on why her body will give out with no changes at all and require medication to boost her back up.

Will going with Daddy to play "backetball" and sporting his new oversized "Darry Kay" shirt!!!

Mother's Day 2013

8:30 a.m. I have had a talk with Darby Kate this morning and she should behave today for Brittney. She gave me a look like she already has this so we will see.

Brittney: I have had a wonderful day!! Thank you so much to everyone who thought of me today and wished me a happy day. I was amazed at the thoughts. I know we have so many praying for Darby Kate but it meant so much to think of me also today!! Jason took Will home after church and my mom and I had a nice lunch and then went to visit with Darby Kate. She was resting well and woke up for a little while. After spending a little time with her I met back up with Jason and Will. We spent the entire rest of the day together!! While Jason got Will to sleep I went and sat in Darby Kate's room. I had a good long cry with God. That along with Jason's big hug when he found me made me feel as if everything will one day not be so torn and scattered. Once he left I opened Facebook and felt even better reading all the kind Mother Day blessings from everyone. I can't thank each of you enough for making my day!!! Thank you, and Jason should be getting an update ready soon.

The Journey Church in Highpoint North Carolina

 

 

Saturday, May 11, 2013

A little midnight procedure. They put in an arterial line and redressed her picc line. Maybe she will get some rest now.

Finally resting after fighting with the doctors and nurses for the past several hours.

Continuing to Improve

Darby Kate is doing great. Brittney and I got to hold her for a short time today and I am glad the nurse talked me into it. I was really nervous to hold her with all the attachments on her but got over it and enjoyed every second. She had a small blood pressure issue this afternoon but it was short lived and she is tracking right along. She is still off of Epinephrin and on just a small dose of dopamine. She also got to move out of the surgical suite into a general room today. After a month and a half in the surgical suite it was a welcome move! Thank you for all the prayers, they mean more than we can ever express with words. I would also like to thank everyone for following our angel on Facebook, I am glad we are able to share this miracle with everyone. She is a prime example of what a mighty God we serve!

Brittney: I love this man to the moon and back!! He got to hold Darby Kate today and it flooded back memories of when we had Will and Darby Kate's first day of life. He is the best daddy and husband. He and I are getting through this with only a few occasions in our small living quarters that I've wanted to choke him until he turned almost the same shade of blue as Darby Kate!!! I love you Jason Roberts and I have no doubt that Darby Kate will be a daddy's girl!!

Big Day!

Today was a big day for Darby Kate.  She was taken off the ventilator just before lunch time and has remained stable.  She has enjoyed some tummy time and cuddling from Mommy.

Good Day

Darby Kate had a good day and is having a good night so far. I think it might be because her boyfriend, Dr. Alten, came back to town last night. The plans now, unless something changes, is to take her breathing tube out on Wednesday or Thursday and continue trying to keep the fluid off so the kidneys will start working again. She has lost close to 3 lbs of fluid since Tuesday. Thank you God for allowing us to witness this miracle in progress!! Thanks for the prayers.

Continuing to Make Progress

We are doing great around here. 324 more cc's of fluid removed last night. Yippee!! One step closer to the house!

11:30 p.m. We have had a great week and she has been weaned off her most of her meds. Tonight we have been battling a blood pressure issue and they had to start her Epinephrin & sodium bicarbonate back. Please say a special prayer that we do not lose all the weeks progress and we continue to move forward. Thanks and God Bless!!

Swelling

9:00 a.m. Darby Kate is still doing really good this morning. All of her numbers are normal but she is still holding a ton of fluids. This morning, please pray for the care team to be able to get her swelling down. With the amount of swelling she has, any set back would cause her not to be stable. Thanks for the prayers!

6:45 p.m. Darby Kate is still stable but very swollen. They are going to give her through the night to see if the peritoneal dialysis will start pulling off more fluid. If she does not have a large negative number by the morning they will push forward with her. She will start Continual Renal Replacement Therapy (CRRT). This therapy will pull fluid off much like ECMO did. The danger of this therapy is they will have to place a line in her subclavian which will pose a clot risk. She has done wonderful the past two days but we have to move forward because we still do not have any room to go in reverse. Please continue to pray!!

New Day

9:00 a.m. Darby Kate is still rocking it and has been stable all night and so far this morning. Thank you for all the prayers. Next time she wakes up I will post a picture of her. Thanks and God Bless!!

This is a top view of her watching shapes and colors go by on the TV!

 

9:45 p.m.  Darby Kate is still doing great. She got a bath earlier and is feeling froggy!! Amy (her RN) turned her over about 30 minutes ago and she is still mad about it, because she is turned away from her TV!! We are praising our almighty God for the blessings in our life.

Will says he has the CVICU at Children's of Alabama covered!