Benefit Ride

Thanks to the wonderful people who organized the benefit ride for Darby Kate - a wonderful tribute to a special little girl.

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!

 

Be Still and Know That He is God

Brittney: Twenty four hours ago I was on cloud nine rocking our sweet Darby Kate. She was looking at me with her big blue eyes and I was telling myself it won't be long and I will be sitting in the glider in her room that Jason and I worked so hard on in preparing for her arrival. That feeling changed within two hours and we were holding our breath and once again feeling helpless as she fought to survive. It is a hopeless, helpless feeling that I never wish on any parent. It is not explainable the thoughts that run through your mind when your baby is laying almost lifeless and you are just watching. I was wondering what the last lullaby would be that would remind me of her as she took her last breath. I didn't even touch her for fear of increasing lactate, or causing her blood pressure to drop more. It probably would not have but we wanted what was best for her chance to survive. At the same time, it's a sickening feeling to think your baby could die without the soothing and comforting touch from her mama or daddy. The longer that time went by without any improvement I began thinking about just getting out of this room if she did pass. I looked around and began realizing all the gifts and personal items that we had accumulated in this tiny space. I knew it would take a while just to remove everything. I wanted to prepare but also did not want to feel I was giving up. I left Jason sitting in the room and I went into the bathroom where all of our toiletries and clothes were. I began talking to God as I packed up everything or got it in an organized manner that it would be easy to remove. When I came out Jason checked on me making sure I was OK since I had been in the bathroom for so long. I didn't tell him I had gotten all of our stuff packed for I still had hope that she would continue living but at the same time wanted to prepare to get us out of this hospital as quick as possible if she didn't. Needless to say, last night Jason and I were both removing items that we needed from the bags I had packed up. We were getting ready for bed and knowing that Darby Kate had survived one more day that many did not think she would. Every situation that God puts you in is not done on your own time but His. Even though I was trying to prepare, God had a better means of preparing me. He reminded me yesterday as my favorite verse states to "Be Still and Know That HE is God". As I type this I am able to see our sweet baby breathing and know that she is still Alive!!!

9:00 a.m. Darby Kate improved slightly over night but is still hanging out with high lactate and low sats. I will update if anything changes. Thanks for your continued prayers.

2:00 p.m. Dr. Jackson just advised that Darby Kate's lactate has come back down to 2.6. We heard once again that it was a miracle she pulled through the night. She does have an infection but they feel they got a jump start on the antibiotics and got ahead of it. They still say that her little body will have to fight to keep ahead from this point forward. Dr. Jackson said she would rejoice but holding her breath while doing so!! Thank you God for keeping her with us up until this point and we will continue on her journey!!

10:00 p.m. The prayers have paid off yet again. Our God is an awesome God!!! Just got a report from Dr. Jackson. Her lactate is down to 1.9 from 12.1, her oxygen sats are up to 71 from 32, and her blood pressure has come way up! Praise God and thank each and every one of you for the relentless prayers. We still have a long way to go so please keep it up.

Rough Day

1:30 p.m. She is currently experiencing the same symptoms she did the other night when everything got so bad. Her blood pressure just plummeted and they are trying to get her back up. She is not doing good at all. Please pray!

5:00 p.m.  We are still here but she hasn't gotten any more stable. They are giving her medicine to help her blood pressure but when it wears off it continues to drop again.
7:30 p.m. Darby Kate is still hanging on by a thread. She has not improved the last four hours. Please continue to pray.
10:30 p.m. She opened her eyes tonight after fighting all day to let us know that she was still fighting. Her sats and lactate are still terrible but she is pressing the fight. You go girl!!

Dr. Alten told Britt he had an early Mother's Day gift. He let her hold Darby Kate. She was able to rock her for about an hour today. She has been stable but has worse swelling today. She has been given medication just in case it's infection. Dr. Alten said it could be inflammation and is hoping it's not an infection. Please pray it's not. This would not be good where Darby Kate is at this point.

Our Little Fighter

She just woke up for the first time after a very rough night. God is SO good!! Her waking up today is yet another miracle seen right before our eyes.

One huge detail that I just remembered that hasn't been shared is that she is no longer a candidate for heart transplant unless she survives and her current heart is not doing enough to sustain her long enough to make it to the next two surgeries. She could not continue to stay on ECMO and wait on a heart because the ECMO machine caused renal failure along with other life threatening risk which deemed her unfit to receive a heart. An available heart will go to the patient that needs it the most and is most likely to survive. Her kidneys were not going to start back working on ECMO and we were out of choices when the decision to come off of ECMO was made. We asked the doctors from the very start to let us know when we were doing more to Darby Kate than we were doing for her. That talk came yesterday and we knew that we did not want to be selfish and try to keep her here when she would go home if God called her. It was the most intense, heart breaking decision I can imagine us having to make for our baby.

 9:30 a.m. Just wanted to do a quick update. Darby Kate did not have a good night. Dr. Alten sat with her for most it. He told us this morning that he honestly didn't think she would live through the night but he was able to adjust some of her medications and she improved enough to still be with us this morning. It is a miracle to us in having her here one more day.

The Miracles Continue...

Darby Kate is doing great today. Still not out of the woods but walking through the forest briskly!

 

Dr. Alten pushed her tonight and allowed her to wake up. As soon as she became active, her body started using more oxygen, her O2 sats dropped and her body started making lactate. He said that this proves that she is very fragile and we still do not have any wiggle room. He gave her some paralytics and a touch of pain medication to keep her calm and said she would stay this way until they got more fluid off of her. She has been fighting for her life since 03/19/13 and with Gods help has made a believer out of so many. I can assure you that although there is no way to truly depict all that this baby has been through, the fact that she still has life at this point should be living proof that there is a God and he is alive and well. Please continue to lift our angel up in prayer and we pray that if any of you are dealing with issues in your life that God will assist you with your struggles. Turn everything over to him and stop trying to figure it out for yourself and you will find comfort and peace beyond explanation. When you think everything in your life is going wrong, open your eyes and you will be able to see that you are truly blessed. I have taken my life, health, family and a ton of other things for granted for years thinking that they would always exist the way I knew them. This situation has shaken us to our knees and really made us open our eyes to the blessings around us. None of us are promised tomorrow! If something happened to you tonight, will everyone you care about know what they mean to you? Does God know what he means to you? I challenge everyone reading this post to right a wrong in your life, hug your family and let them know how you really feel. Through this situation we have learned that if we were to take a piece of paper and write down every person that we know, it is the people that we would have hung our hat on that we have not heard from. It was the ones you would have never thought would care that have supported us spiritually, emotionally, and financially. Thanks again for the continuous prayers and for listening to my heart. God bless each of you!!

33 Years Later

Thought I would share this photo of Darby Kate, Brittney, & Dr. Cleveland. Dr Cleveland assisted in Brittney's heart surgery 33 years ago and Darby Kate's surgery on March 26th. One of the many amazing surgeons at children's of Alabama!

Miracles

Brittney taking a nap with Darby Kate after a sleepless night and an endless day of fighting. I love them!!

7:00 a.m.  Darby Kate was mad this morning!!! She has soooo much fight in her. The nurse got me at 6:00 so I could see her beautiful eyes wide awake. She was def wide awake.....she was pulling tubes even with her sock mittens on!!! They finally gave her a little medicine to sedate her a little before she fell out of bed!! LOL!! She and I had a pep talk. She's going to give it all she's got and then some. Thank you all for following her story and praying so hard. No matter the outcome, our story is God's will.

12:00 p.m. Still holding her own without ECMO support. Still a long ways to go. The next few hours will be huge. Thanks for the prayers and please keep them coming!

5:00 p.m. She is still fighting but her blood pressure has slowly come down over the last hour. She is getting some medicine to assist her. Dr. Alten advised us that she still has a very slim chance at survival at this point but she has surprised everyone up to this point. Please continue to pray!

It's after midnight and she is still holding her own. They are keeping her sedated to keep her from using so much oxygen. Thanks for the prayers and please keep them coming!! We are still about 48 more hours before the doctors will take a breath. I will try to update every couple of hours tomorrow and post a video if they allow her to wake up. Thanks to everyone for praying and we give God all the glory for allowing us to witness miracle after miracle.

I am finally going to try to get some sleep. Darby Kate is rocking it tonight. Her lactate is down and her blood pressure looks really good right now. God is good and I praise him for the blessing of this little miracle!

Wow what a day. We sat a room view away and watched as our broken hearted baby fought to survive. As they clamped the ECMO machine off we along with the medical staff sat and stared at the monitor as her stats started dropping. They immediately unclamped. The wind was let out of our sails and we only had one option left. This was to surgically remove the ECMO cannulas. Dr. Alten thought one of the cannulas had shifted and was affecting the blood flow through the shunt. We knew that when the cannulas were removed there was no other option than for Darby Kate to fight with all she had. The surgical team set up in the room and we patiently watched. Dr. Alten told us to expect them to have to revive her a couple of times and if her little body couldn't handle being off ECMO then they would get her comforted and let us hold her to die peacefully. He said they expected her to go quickly. As the surgical team began it was a scary silence in the CVICU unit. All that could be heard was Darby Kate's lullabies playing overhead on her monitor. Rock-a-Bye-Baby was playing. Once the cannulas were removed, Dr. Alten motioned for us to come in and told a nurse to find me a rocking chair to hold my baby. I knew when he said this that Darby Kate's stats must not be good. As Jason and I stood over her bed talking to her, and rubbing her hands the mention of me rocking her was never mentioned again. This was a good thing!! Everyone was just watching patiently. We continued to comfort her and you know the rest.......she has shown another miracle in surviving to where we are at this point in being off of ECMO. Dr. Alten told us he didnt expect her to survive for long but he also said that he would have never have expected her to get to this point so he had high hopes she could pull through with another miracle. I am typing this as I see her laying in the small bed with a lot less tubes and praying that God continues on with His will for Darby Kate and us the strength to get through it.

 

 

Thursday, April 25, 2013

Will making rounds tonight with his new buddy (Dr. Jeffrey Alten)

We need all the prayers everyone can muster. She is being weaned from ECMO as we speak and will be clamped off tonight. If she can maintain immediately Dr. Dabal will remove the ECMO lines from her body with the understanding that they will not be placed back in. If she cannot maintain she will remain on ECMO throughout the night and a decision will be made on the best way to let her go without pain. Please pray for God to clear the doctor's mind and guide their hands as this takes place.

 Brittney: I don't know who's heart is more broken.....Mine or Darby Kate's. We were supposed to find out if she could be taken off ECMO by this afternoon but she was more sedated than what was anticipated so the test will be in the morning. I never wish this pain on anyone. It has been a constant day to day roller coaster ride of emotions on whether Darby Kate would live or die. Dr. Alten advised this morning that a miracle had already occurred .....Darby Kate still being with us. He said there was no medical way to explain why she was still alive. If she doesn't survive we have still been so blessed to call her ours. She has taught Jason and I to appreciate the small things and to not take anything for granted. As a broken hearted parent, I can't express how much it means to be able just to hold your child and comfort them or hear the sweet sound of their cry. Don't let a day go by that you don't let your children know how happy they make you. They belong to God and he only gives them to us temporarily. Live each day with them as if it were your last. No matter the outcome in the morning, Jason and I will get through this. We will remain to "Be Still and Know That HE is God"!!!!! Thank you for continuing to pray for our family.

A Tough Update

I am sorry that we have not updated a lot in the last few days. This update has been a hard one. Dr. Alten met with Jason and I this morning. Darby Kate's last couple of days haven't been good. We are on the transplant list but she is not at a healthy point that she would be eligible to receive a heart if one became available. Dr. Alten wants a couple of days to pull fluid from her body and see how her body reacts. If her lungs and such do not seem to be any better then we have no other option. He promised us that he would let us know when it got to the point of doing stuff "to her" and not "for her".
We are at that point.....He will tell us Wednesday or Thursday if there has been miraculous improvement. If there hasn't, then we will be making the decision to turn the ECMO off. We haven't lost hope and we know it's still in God's hands. He does work miracles but at the same time we have to start preparing for reality. We are both at peace in knowing if Darby Kate's little body gives out that she will be in Heaven for eternity. She would never of had to sustain any evil, heartache, or sadness from this cruel world we live in. For that we would rejoice!! Without a miracle she will be traveling to a place we all long to go and will no longer have a broken heart. Please pray for God to give us strength through the most difficult thing that Jason and I have encountered. Thank you all for being with us on this journey. We know you have helped get us through this with your prayers and we will be forever grateful!!!

Rough Days

Sweet Darby Kate had a couple of rough days and they have finally started getting negative on her fluids. She has been too swollen to open her eyes for the last two days.

Prayers For Darby Kate

Our family has been truly blessed by the outpouring of love and support so many people continue to show for our precious angel.

Karen Medders: Brynn's 7th Birthday Party-honoring Sweet Darby Kate. These Duncanville, AL kids lifted her in Prayer today. God blessed my home beyond words!!!!! All together in Jesus Christ name we were able to raise $500.00. Praise God he is alive.

The 1st through 6th grade Girls in Action groups at Glynwood Baptist Church in Prattville, AL had a special prayer time tonight for sweet Darby Kate. They decorated their letters, wrote notes for your family, and had a group prayer for healing of Darby Kate. Our sweet girls send their thoughts and prayers for your sweet girl and your family.

Frazer UMC 4th grade girls are praying for Darby Kate!!!!

Medical Expenses

Brittney:I want to thank Lisa Pridmore Ambrose for the donation page she has set up for Darby Kate. Finances were the last thing we were concerned with since the diagnosis of HLHS and Darby Kate's fight to survive, but reality set in last Friday when we celebrated the approval for a heart transplant. While speaking with the social worker, she advised that the surgery itself would cost around $550,000 and this is not including hospital care, medicine, etc. She said insurance would not cover all of the expenses and she advised us to start as soon as possible with fundraisers. We were lost as to not knowing where to begin. We have never had to ask for help but know that we are not beyond doing so. In saying that I want to assure anyone that wishes to donate for Darby Kate's new heart that the funds contributed will go directly in an account just for her. As you already know, Darby Kate has a long road ahead. The doctors have explained she still has a small chance to make it to the heart transplant must less in ever leaving the hospital. We listen but also know that God is in control. If it's His plan for her to be healed then we will eventually be leaving this hospital with TWO car seats in the back and smiles on our faces!! If His will is to call our little angel back home and the donated funds aren't necessary then any money collected will be paid forward to other families at Children's Hospital facing the same or similar struggles. Please do not feel pressured to donate. We are grateful for any support you give Darby Kate and your prayers and encouraging words mean the most!! You will never know how each one of you has helped us in getting through the toughest struggle in our lives.........

Quiet Night

Brittney's Message: Darby Kate had an uneventful night but Jason and my mom did not. She has been keeping our two daschunds since the night I went to the hospital to give birth to Darby Kate. Last night when my mom got in from work she fed the dogs and then couldn't find Brody, my very first baby, before she went to bed. After looking, she found his lifeless body under her bed. She is just as attached to them as we are. She called Jason to let him know. She was home alone so Jason drove from the hospital to bury Brody and comfort her. He was in the rain this morning at 2 am burying Brody. Jason let me know this morning after he gave me a good report on Darby Kate as to not scare me......I think our life is turning in to a country song!! I love him so much and he is my rock. He loved Brody as much as I did but he was more worried about my emotions to bother me in the middle of the night with Will and knows how worried my mom is about me, her only baby in the world!!

Darby Kate is letting everyone know that she is ready to get out of her bed. We had to put one of her ballerina socks on her hand to keep her from pulling her tubes!!! She's getting out of control.... I'm convinced she WILL be a red head!!

Thursday, April 18, 2013

Good evening! Darby Kate had a good day today. She got eight tubes removed from her little belly because she quit bleeding. Yippee!! Her blood pressure still remains very good through another flow change with ECMO. If you have not noticed, I would like to point out that every major prayer we have prayed has been answered. The only prayer that was not immediately answered was getting off of ECMO and I believe that God is taking an untraditional path with her or it will be answered in his time. I point this out to prove what a mighty God we serve!! Brittney and I will never be able to thank everyone enough for flooding Gods thrown with prayers for our baby but we ask that you continue to pray and witness Gods power in a way that can not be fabricated.

Wednesday, April 17, 2013

Good evening friends! All is still going well today. We had a partially collapsed lung last night but it was fixed with the turn of a switch. I told them to tell us how easy the fix is before they say anything like that again. She is doing so well they are letting her body dictate the new course. She will stay on the transplant list but they started weaning her from ECMO today and will go down every 24 hours until her heart is doing all the work. The more her heart is doing the less risk we have for a catastrophic failure. (Aneurism, stroke). They do not think her heart will handle 100% but she has proved to be full of surprises so far. I have not posted anymore pictures because they are keeping this little wiggle worm asleep so she does not kink her lines again! Thank you for the continued prayers and please keep them coming. I do not think God is even close to being finished with Sweet little Darby Kate.

Tuesday, April 16, 2013

5:00 a.m. I just awoke to a scare. I could hear in Darby Kate's room panicked voices and concern. Everyone was running around. I did not go in for the last thing they needed in a time of distress was the mother to be watching over their shoulders. I lay still and prayed. Blood had began leaking from one of the ECMO lines but with the expert team on site they were able to find the problem, work as a team, and get the equipment repaired very quickly causing little to no stress on Darby Kate's body. Thank you God for keeping me calm and listening to my prayers!! Talk about an early morning wake up call.....

Uncle James made a special trip in from High Point, NC and brought Darby Kate a special surprise from all our prayer warriors at The Journey Church of the Triad!!

Darby Kate and I had a boo boo free night!! Will and Jason on the other hand......check out his shiner where he fell out of bed!! Never a dull moment!!

 

 

Monday, April 15, 2013

They closed her sternum again today and left the skin a little bit open so it will heal from the inside out. There is some bleeding that they are watching closely, but not as much as there was last week (when they had to reopen her chest to stop the bleeding). Daddy is home with Will tonight, and the girls are holding down the fort at the hospital.

Saturday, April 12, 2013

We have had a very uneventful day today. Darby Kate has been resting very well today. I would like to thank everyone for their guidance on my last post about the donor family. I would also request that everyone start praying for the donor family.

Friday, April 11, 2013

Brittney's Message: As a mother this has been the hardest thing in my life..... Wanting to be at the hospital every second with Darby Kate but having to also try to make a somewhat normal life for Will and trying to hide the pain I feel inside when I am with him. Until this point, whatever happened with Darby Kate was options made by doctors for her sick heart. Now it has been turned over to Jason and I in making a decision on what is best for her. Before yesterday I would not have considered trying anything else for knowing and seeing all my sweet baby has gone through but hearing the words, "you can give up" changed everything. We have come so far and already faced so many struggles to just give up on Darby Kate. It is in Gods hands and as long as there is one more option why throw the towel in at the end and quit when he has gotten us this far? We talked with two different doctors last night and both had different views on the best treatment for Darby Kate while she waited for a heart. The plan is for their entire team to discuss the best option and present it to us this morning after rounds. Please continue to pray for her and for us. Yesterday I found myself wanting to become angry but knew I would be breaking my promise to God in never questioning his whole plan in giving Darby Kate to us. I prayed, read through all of your words and encouragement, and listened to songs that have been posted for us to get through that weak moment. I can not thank each of you enough for all the kind words and prayers you are sending up for our sweet, sweet baby!!

11:45 a.m. We are getting all necessary paperwork completed to get her added to the donor list. Transplantation is our only option at this time. She is currently getting the ECMO rerouted to her groin an neck so they can close her chest. Please continue to pray.

11:00 p.m. We had a small set back. Her chest was closed this morning and the ECMO lines were moved to her neck and groin. Tonight they had to open her chest up to stop bleeding that did not stop itself all day. They have had to give her blood throughout the day so she has gained some size from swelling. They have the bleeding stopped but they were unable to completely close the chest back. It will probably be Monday or Tuesday before they get it completely closed. She is stable and there is still no sign of infection.

1:00 p.m.   I have had a hard time praying for a heart. I want a heart desperately for my baby but it hit me after receiving official word that she was on the list that someone's child would have to die before she could receive a heart. I know the pain we have felt already and the grief that will come if something happens to Darby Kate. I am feeling guilty for wanting something so bad that comes at such a cost for another family. Can anyone give guidance on this?

3:00 p.m. Darby Kate is officially on the heart transplant list!! He will give any little details. I just wanted to give the good news first!!

Thursday, April 10, 2013

11:00 a.m.  Doctor Alten just did a test run on taking her off of ECMO and she got a C- if he were to give her a grade. He said that her oxygen saturation looked good but she was not getting enough blood to the extremities of her body. He will try again at 5:30 or 6:00 in the morning and if she still has a problem they will try to completely clamp the Sano Modification shunt or remove it. Thanks for,the prayers and continue to pray for us.

12:45 p.m.   They just clamped out about five minutes ago. I will update when I know something. It could take several hours to know for sure. Please continue to pray.

2:00 p.m.  She was so close to getting off that they are not ready to throw in the towel. They will turn down the ECMO pump over the next 12-24 hours and try again. It was night and day difference from last night. Thank you for all the prayers, they are definitely being answered.

9:00 p.m.   Alright prayer warriors I have our next mission. Darby Kate will be taken off ECMO tomorrow. Either her heart can handle it or not. There are no more options after this besides a transplant. The chances of her living to see a transplant are next to nothing as the average wait is 3-7 months. ECMO is not an option for near that long. All of our prayers have been answered up to this point and there is no reason to believe that he will not answer tomorrow. We have the hardest decision we have ever had to make tomorrow so I ask each of you to ask God to assist us in our decision if one has to be made. She is responding to my voice again tonight so I will try to post another pre game video. Please ask anyone you know to pray for our entire family tomorrow! Thank you for your unwavering love and prayers!

10:30 p.m.  It appears that we are out of options with her current heart. We do not know what our options are yet but will learn more tomorrow about transplants. There are several options available and we will have a HUGE decision to make tomorrow. Please keep us in your prayers as we struggle to make the best choice. I will update everyone once we know more.

Hope

9:00 a.m. I just spoke to the doctor and she was stable all night last night. He told me that she still has fight in her after all she has been through and that is very encouraging. He said they would either try to get her off of ECMO this afternoon or tomorrow depending on how the group discussion with all doctors went. The only issue that she is having right now is her diastolic blood pressure is hanging out lower than they would like to see. She is being propped up on some meds to handle the BP right now so the next big test will be removal from ECMO. All the nurses are laughing and joking this morning so that is a great sign. I love it when they are happy and joking!