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!

 

 

 

Tuesday, March 9, 2013

 

Darby Kate is 3 weeks old today, and she will undergo her third major surgery in her short life. Doctors have said there is no more they can do if this does not work.

 8:00 a.m. Good Morning!! Thank you so much for the continued prayers. She is like the resident rock star! She has all the nurses and doctors in her room right now. I woke up with a peace this morning. Her stats look great and they are prepping her for surgery although we still do not have an exact time. I will update everyone along the way today. God Bless each of you for your selfless acts!

12:30 p.m.  She is about to go back for surgery. Please pray for her and all the medical staff. 

2:15 p.m. They are underway with the surgery.

4:15 p.m. Just talked to the surgeon, she is out of surgery and did fine. It will take several days to see if the surgery was a success. Thank you God for the answered prayers! We still have a long road and as you can see from day to day miracles, God is answering our prayers. Please keep lifting this angel up!!

8:00 p.m. Darby Kate is still sedated but her oxygen saturation is in the high 80's which is where it will be for the remainder of her life. They are giving her a small bump to get her to 100% concentration so she will get stronger faster. As expected she has retained more fluid from the surgery so she is very puffy and out of it tonight. Her blood pressure was a little bit low on her own so she is getting it propped up by meds. They will wean her from ECMO tonight so her body can perform the majority of the work. God has performed miracles in every turn of this child's life and it has really opened my eyes to the blessings I have been given, God knows I am so unworthy. Do yourself a favor and thank God for all the blessings you receive daily and take for granted, after all, we are not promised tomorrow. Thank you so much for raising one of my many blessings up to God for healing.

Answered Prayers

9:00 a.m. She had a great night and they were able to get 355 cc of fluid off of her little body. Looks like no surgery today. They still want more fluid taken off before they take the next step. We are moving in the right direction it is just slower than we would like to see. God's timing is not ours and I just keep reminding myself of this. I will update as soon as I get more information.

Brittney's Message: Today has been a blessed day!! Will used the potty this morning, I got to see Darby Kate alive and breathing, AND had another wonderful date breakfast at the Waffle House with my best friend in the whole world.....Jason Roberts!!! I had to park on the seventh floor when I got to the hospital and Jason was on the phone with me. I told him where I parked because I knew my scattered brain might forget and when I opened my door he was waiting on me with the biggest, tightest hug in the world!!

11:00 a.m. I just listened as multiple doctors discussed the plan for Darby Kate. Like everything else around here something can change between now and then. The plan now is for her to go back to surgery tomorrow morning. They will be doing a BT shunt because they do not want to put her back on bypass. They were all in agreement that this would be less risky than putting a stint in the existing shunt. Thanks for the prayers and I will update as I get them. 

Will loves to pull the wagon through the hallways

 

Quiet Day

Today was a welcomed quiet day after the terrifying day Darby Kate had yesterday. Her lactate was up to 26 at one point and doctors were amazed that she was even alive.  The plans change from hour to hour and a third open heart surgery is still being discussed. They will likely insert a BT shunt to help alleviate her pulmonary hypertension. Another thought is to insert a stint inside the existing shunt; however, this would require her to go on bypass, which is very risky at this point. Our prayer is that the Lord will be with the doctors as they make these important decisions. We are so thankful our little girl made it through a day doctors gave very little hope for survival. What made yesterday even more difficult is that poor little Will woke up with a stomach virus, so Brittney was unable to come to the hospital for fear that she may be a carrier.

A Miracle

Darby Kate's morning started off terrible.  Dr. Dabal has been pleased with how her heart has held up until today.  We were told that she would probably not make it through the day, but God proved He is in charge and she survived another day!

Brittney's Message: As most of you have read from Jason's post the doctors don't know if Darby Kate can survive through the day. I am so broken hearted. Will woke up with a stomach virus so not only are both of my babies sick, I can't be there with Jason in what he's dealing with at the hospital for fear of spreading the stomach virus and Darby Kate catching it. God give me and Jason strength and help heal both of our babies!! I will continue to trust and know that He is in control!!


 

10:30 a.m.  I am sorry I posted so fast this morning but what I posted was incorrect. I just spoke to Dr. Dabal and he told me that she had a very bad night. There are three issues that they have been trying to balance and only two can be balanced at a time. The third issue takes a hit no matter which one it is and this cycle has caused the heart to get extremely weak and sick. They are rushing around now and about to put the ECMO back into the heart so they can regulate her blood pressure. They warned me that she will probably not make it through the day. If she gets stronger tomorrow or Monday, they will do another surgery but right now the primary focus is keeping her alive and getting her strong enough to survive the surgery.

4:30 p.m. They have put Darby Kate's ECMO tubes back in her heart and she seems to be improving slightly but is still in critical condition. Please continue to pray.

10:00 p.m. I want everyone to know that her blood pressure is now better than it has been in three days, her lactate is low which is wonderful and her oxygen saturation is higher than it was earlier. We are rapidly making up the lost ground!! I thank God for every bit of it. I do want everyone to understand that we are far from victory. This is just a small battle won in a big war. We have not been given any concrete plans on what the doctors hope to accomplish tomorrow but I will let everyone know when I get them. Thank you for the prayers and keep them coming!

Friday, April 5, 2013

9:45 a.m.  For those of you who have just started following Darby Kate I would like to give you her back ground. Our angel was born two weeks ago on March 19th at 1:22 am. We had no clue that there was anything wrong with her heart until Brittney's "Amazing" motherly instincts kicked in and she pushed for test to be ran. On Wednesday March 20th, we were told she had "Hypoplastic Left Heart Syndrome" (HLHS). HLHS only occurs in approximately 1% of congenital heart defects. The heart has four chambers. The two upper chambers are called the right Atria and the left Atria. The two lower chambers are called the right ventricle and left ventricle. She was born with an undeveloped left ventricle. The left ventricle pumps oxygenated blood all over the body and the right ventricle pumps un oxygenated blood through the main pulmonary artery to the lungs to get rid of carbon dioxide and pick up oxygenated blood. Hard to grasp? I understand! On March 25th she underwent here first open heart surgery. (Norwood Procedure). The procedure took about six hours. The first 48 hours are the most critical and the medical staff really had their work cut out for them. Her oxygen concentration levels were low and her lactates were high. They had to rush her to the cath lab to run test that night and found that she had a septum defect on her pulmonary artery. They took her back to the operating room on the 26th for her second major open heart surgery. Everything went well but we were warned that she would probably pass away due to all the trauma her heart had endured. She has continued to surprise everyone although keeping her stable has been no walk in the park. Her heart is oblivious that it is suppose to be sick. Right now the medical staff is trying to nurse her sick lungs back to health. We are a long way from being out of the woods but the fact she is alive at this point is proof that God answers prayers. She will have a minimum of two more open heart surgeries in the next three years. Children's Hospital of Alabama is a remarkable place full of servant hearts. God himself made this advantageous place what it is. I feel like the loving and compassionate care that we have personally witnessed is not possible without God. This place is full of selfless people that are doing what God called them to do. Regardless of the outcome we will be advocates for this place the rest of our lives. Somehow, thank you does not seem like enough and I pray that God will bless their lives and family and show them that what they do matters. Sorry for rambling on and as always the prayers are greatly appreciated.

2:30 a.m.  Lactate levels have finally come down and her blood pressure is right where they want it. This has been a rough night. I am about to run up and down the stair well a couple of times to burn some nervous energy. I will have to say, God once again proved that he specializes in turning impossible into possible. For about two hours, it really did not look good at all.

7:30 a.m. The remainder of the night was event free and her stats have remained positive. No word on surgery. Will update when I get something concrete.


11:45 p.m. Lactate levels still elevated but blood pressure is finally stable. Been stable for approximately 15 min. They are constantly having to think outside the box with her. Unchartered waters with God holding the steering wheel is what calmed the storm. I have really had my faith tested these last couple of hours! I just keep praying for God to hold her tight and not let her suffer. I also am asking God to clear the doctors minds and guide their decisions. Our prayers were answered in the nic of time!

Thursday, April 4, 2013

 

7:30 a.m. Darby Kate had a pretty good night. She is very sensitive to sedation and they are constantly having to play with her dosage. All sedation that has been utilized makes her blood pressure drop. They are doing a good job keeping her comfortable and stabilizing her pressure. She will naturally have lower blood pressure than normal her entire life because the right ventricle does not push blood at the same pace as the left ventricle. It is incredibly perplexing to think of how complex and sensitive everything in her little heart is. God has not let go of her through this entire journey. We have not been able to hold her and allow her to feel our love but there is no doubt God has shown her love we are incapable of giving. She has done well with the experimental ECMO line in her groin area. I have not received confirmation about today's plan yet but last I heard, they will put the other ECMO line in a vein in her neck so they can get that chest closed. I think the outside of the box thinking by all of her medical staff and the fact that she is holding her own is a true testament to the power of prayer. Thank you for lifting my family up and please keep it coming!

10:30 a.m. I just spoke to the doctors and they are about to put a new central line in her groin to possible get the second ECMO line out of her chest. They are also about to place a pick line in her arm in order to take them out of her umbilical cord. This is being proactive against the possibility of infection. Unfortunately, her lungs are showing no signs of improvement and she will have to have another surgery tomorrow morning. They will either put a stint in the existing shunt or they will place a BT shunt in another section of her aorta. Both surgeries have their own share of risk and are considered a major open heart surgery. If they put a BT shunt in, she will not have to go on bypass but it will be a third section of her heart that gets operated on in less than two weeks. If they put a stint into the existing shunt they will have to go on bypass to complete it. The problem is, her lungs have gone into protection mode and are refusing to allow much blood into the lungs. Everyone keep your heads up! I am not discouraged because we serve an awesome God that specializes in impossibilities! I am asking you to say extra prayers for her today and tonight and ask God to be with these physicians and guide their hands and minds.

2:00  p.m. They have finished with the pick line and the second central line and she is stable. They realized that the original central line needed to be replaced with a longer tube so, they are doing that now.

9:30 p.m. As of now I am not sure if she will have surgery in the morning or not. They have tried several things to correct the problem and a diagnosis has not been made yet. I will let everyone know as soon as I am notified but the decision will probably be made in the morning. Right now her blood pressure is dangerously low and a team of doctors have been trying to get them up for several hours. Please pray!

 

Back on ECMO

Darby Kate was put back on ECMO last night.

2:30 p.m. Darby Kate is resting well. They are still researching their options but Last I heard they were going to take the ECMO lines out of her heart and place one line in an artery in her groin and the other in her neck. Their biggest concern for her right now is infection. They said they want to close her chest as soon as possible to greatly reduce the risk. They are going to do one line today around 5:00 pm and will do the other line tomorrow morning. They will leave the lines in her heart as a back up plan until tomorrow afternoon. According to the dr. This is unchartered territory but they want to try it to keep the progress going forward with the heart. He advised an infection in the chest would be a huge set back in progress. I will keep everyone updated as I get the information. Thank you for your continued prayers!!
7:30 p.m. Darby Kate had a small procedure this afternoon where one of the ECMO tubes were removed from her heart. They put it in her groin area and will put the other one in her neck tomorrow. The reason is to get everything cleared from her heart so her chest can be closed. The doctor said her lungs were still sick but getting better and her heart is still having a party oblivious that it should be the one slacking. Her biggest danger right now is getting an infection in her chest cavity. It would be a major set back if she got an infection and I appreciate the doctors for thinking outside the box. They are entering unchartered territory to get that angels chest closed. She is resting now and her color looks great. I cannot thank God enough for giving these professional doctors the wisdom to be pioneers in their field.

Day 9: 4th Try

Today is a new day. We have put our faith in Christ and know he will carry us through. Darby Kate will be weaned slowly and clamped from the ECMO machine.

7:45 a.m.  We will be trying again shortly to get her off of ECMO. Her blood pressure is 10 points higher than it was yesterday. I think today might be the day. We just need continued prayer. I will update through the process.

8:00 a.m. Second positive of the day. The respiratory therapist just suctioned her lungs and it was the first time he did not remove clots.


1:05 p.m. She is clamped off. I will update as soon as I find out something.

1:50 p.m. Pray hard!! Dr. Dabal said if there are no bumps in the road before now and 2:15 pm. She will come off.

8:15 p.m.  Sorry for the delay in posting. I am on out of control Will duty. When I left the hospital around 4:00 pm, she was doing great. Her little heart is beating as if it has no clue that Zorro paid it a visit. I talked to Britt about 10 minutes ago and she was resting. Tonight will be a long night in Helena but I sure was glad to have some one on one time with my little buddy.

10:45 p.m. Brittney: I went to get our laundry and came back to have the wind knocked out again. The ECMO machine was outside Darby Kate's room and the doctor let me know that her pressures have dropped and the surgeon, Dr. Dabal, was on his way back in to hook her back up if they didn't improve within the next 30 minutes. Please pray!!

11:45 p.m. Darby Kate is back on ECMO and stable. We will continue to give God the glory and be patient until his will is done. A decision will be made tomorrow morning around 9:00 am by the doctors on the next plan of action. I have received several more texts from Dr. Alten with words of encouragement and also to let us know that although he is not here, he is very much involved. He is also praying for her and for the wisdom to make the right decisions.

Day 8: 3rd Try

Brittney's Message: Today is a new day and we will try again!!! "Be Still and Know that He is God"!!!!

Devotion for today

 

9:15 They just clamped out and she is on a lot less medication than yesterday.

10:45 She did not get off of ECMO today. She did better and was off over an hour but still fell a little short of where she needs to be. Please continue to pray. I think tomorrow is going to be the day!

Me and Darby Kate are hanging out tonight and she is just resting. Hope to have a great post in the morning. Thank you everyone for the continued prayers.