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.