Dr. Alten

I need to share something with everyone that will show you just what caliber doctors we have at Children's Hospital. Dr. Alten lives in St. Louis, MO with his wife and 7 children. He went home to spend time with his family on Friday night. I got a text today from a number that I did not know:

"Happy Easter. A day of hope. Don't you guys lose yours. It was much closer today. Put a cute Easter bow on her and tell her I said to stop being so stubborn! Continue to have faith. Jeffrey Alten" 

We can all learn something from this humbling doctor! I have never come across anyone more gifted in their trade with such a servants heart. He is truly 1 in a million! This entire hospital staff is 1 in a million.

Day 7: Second Try

Priceless photo of her holding my finger. One I will cherish forever!

Brittney's Message: Darby Kate is holding Daddy's one hand while I'm holding the other. His strength for our family is amazing. When I am at my weakest his strength along with God's keeps me going. I am blessed beyond measure with the little family I have!! Broken hearts and all!!! Jesus, whatever your will may be for Darby Kate today we will accept. We are blessed for one more day with her and I will stand by my promise to never question your plan and to Be Still and Know That He is God!!

9:30 a.m.  They are prepping her now to stop ECMO. She gave me a small heart attack this morning. She was alert this morning and was acting as if she was in pain so we asked the nurse to give her something to stop it. They gave her a mild dose of pain medication and she started purging and spitting up bubbly liquid. I panicked and it seemed like when I summoned the nurse, every nurse on the floor responded. They are going to try to clamp out very shortly. Please continue to pray.

11:00 a.m. She is still not able to come off of ECMO today. They will try again tomorrow. Please don't lose faith! I could have predicted this after reading my devotional this morning. God was getting us prepared. Sometimes Gods blessings come to us in mysterious ways: through pain and trouble. We are grateful for every day we get to spend with this angel. Thank you for sharing this journey with us and try to see all the blessings that God has given you in your life. There is no doubt that God is RISEN!!

All of Darby Kate's cousins celebrated Easter in the CVICU waiting room.

Day 6

We got to see her beautiful eyes this morning when we talked to her. I had to share this miracle! Thank you for all the prayers. She is still doing great. Please say a special prayer tonight. The plans are to take her off of ECMO tomorrow. Pray for her to be able to handle her lung and heart functions without help from ECMO. She has shown such tenacity up to this point and with Gods assistance she can continue to defy the odds. Thank you very much!

Day 5: A New Day

Will made a Build-A-Bear for his baby sister. He chose a pink bear with little hearts on its feet.

Good Morning!
We had a good night and she looks really good. They have decided to give her a little longer to rest before trying to get off of ECMO again. They have got her back to supporting 85% and the ECMO is only supporting 15%. I wish I was as strong as her!! Dr. Alten got a few hours rest last night which I am grateful for. I have been singing the doctors praises but have said very little about the nurses and support staff. The nurses here are top notch and I have yet to meet anyone that I do not like. Everyone has been SO nice and have gone out of their way to help us in any way. The situation could be so much worse without the love and compassionate care the staff gives. We are still able to sing to her, talk to her, and love on her. This is time that we will not get back and they could easily make us feel like we are getting in the way. I truly love this place and want everyone to know how special this place and its employees are.

11:30   Change of plans! The doctors have decided to split the work with her 50-50 until Sunday to give her little body a better chance to recover. She should just be able to rest her little body until then. Although I really want her off of ECMO, I am grateful this baby does not have to keep being stressed out. Thank you for the love and prayers!

DAY 4: ECMO

Everything has been relatively quiet for Darby Kate as they have been slowly weaning her off the ECMO machine over night.

Will is praying for his little sister too!

Post from Brittney:  Some of you may not know but in 1980, 33 years ago, I also had heart surgery here in Birmingham. Mine was not nearly as severe as Darby Kate's, but needless to say, the doctors have worked to dig through the archives and find the paperwork to see if there was anything similar. It was not, but ironically Dr. Cleveland was an assistant surgeon in my surgery back in 1980 and was also an assistant surgeon in Darby Kate's. The doctors here couldn't believe that he was in on a mother's and daughter's surgery 33 years apart.

8:00 a.m. We just spoke to Dr. Alten and he said that his plan is to get completely off ECMO around noon today. She had a good night last night and they were very aggressive about getting the fluids off of her. Dr. Alten told us to drum up as many prayers as we can because she will definitely need them. There is a very small window to get her off of ECMO and it will be hit today. Also pray for the care team, they have worked none stop to get her here. Dr. Alten may have six hours of rest since Sunday night. He has still not left her side. I asked him late last night when he was going to get some rest and he said when she is better. This place is incredible. The risk today are higher than they have been so far. We need to ask God to make her little heart and lungs to take over the fight. 

12:45 p.m. Nothing yet, they will be clamping off the ECMO in about 20 minutes. Prayers, prayers, prayers!


1:15 p.m.  Still running a few more test and thinning her blood. I am anxious with everyone! Dr. Jackson says the general consensus is she will do fine.

2:00 p.m. Her little body is not able to handle all the blood without the support of ECMO. Doctors are meeting now to determine what happens from here.


2:15 p.m. We just spoke to Dr. Alten and he said that with all her vitals dropping together when ECMO was cut off he was unable to tell if it was a heart or lung issue. He said at this point she has a 1 in 3 chance of survival but he would not give up. Testing continues and I will let you know when we hear something else. Please continue to pray, little Darby Kate has not thrown in the towel and everyone needs to be as strong as she is. The fact she is still with us shows us that God is not done with her.

7:15 p.m.  Dr. Alten has used his bully charm to get her taken to the cath lab tonight. He cut the oxygen off on the ECMO machine and her oxygen saturation dropped to 30. This tells him that it is arteries coming from the lungs. If they find something in the cath lab they will either perform her third major open heart surgery tonight or first thing in the morning. Just traveling to the cath lab is very dangerous. 

10:00 p.m.  No 3rd surgery!! She has pulmonary hypertension, so they need to keep her on ECMO longer, give her some meds to help, and let God heal her!! In meantime, pray for no ECMO complications! So thankful to God that no more surgery is required.

Day 3

To say this has been an emotional roller coaster is an understatement! Darby Kate has remained stable with the help of quite a few medications. She is currently on ECMO and the the plans are to keep her on it until tomorrow to give her little heart and lungs a rest.  We cannot say enough about this hospital! Dr. Alten did not leave Darby Kate's side for over 40 hours.  He finally left to get some sleep at 9:00 last night with strict instructions to wake him if certain numbers reached certain points. No matter what the outcome may be, we will forever be indebted to this wonderful place!

8:30 p.m. They are doing one final ultrsound of her liver and head before starting to wean her off of the ECMO machine. They have also called in a specialist to run a camera down her throat so they can scan through the esophagus wall and see if the heart repairs are working correctly. They just started the test and turned the ECMO machine down and her heart seems to be handling it without an issue. Please continue to pray!

10:10 p.m. The results of the test earlier were good. Dr. Alten said he is going to be very aggressive trying to get her fluid off tonight. He said he wants her off of ECMO tomorrow but will not take any risk. Quite night so far.

Day 2

Darby Kate had a rough morning and had to go for a heart catheterization and 2nd open heart surgery. The high lactate numbers they were concerned about had come down; however, her oxygen saturation was low. She was very unstable as they moved her; however, they were able to stabilize her once she was in the cath room. Updates were posted on the prayer page:

6:45 a.m.  The doctor just came in and stated her lactate had come back down but her saturations are low and they don't know why. They are sending her back for a catherization and he stated this could be serious at the point that she is at. He told us with everything going on she's on the edge of the cliff and it's very important that they get her saturations back up. Please pray. If the catherization does not work she will probably have to go back into surgery.

7:20 a.m.  She is about to be transported to a different floor for her cath. During the catherization, they will shoot dye into her heart to see if something is blocking the shunt that was placed into her heart tying her right ventricle to her lungs. He said that it was necessary to keep her alive and they hope to see the shunt restricted in some way so they can return to surgery and fix it. Dr. Alten said he is going with her to try to keep her as stable as possible but just rolling her down the hall is very risky. He did not hide his concern at all and said that the next few hours will determine her fate. Please keep praying!

9:45 a.m.  The doctor just stuck his head in and said that they have her stabilized and are about to start the catherization process and it will take about two hours. I will update as I receive them. Thank you for your unwavering support and prayers!

3:30 p.m.  Dr. Dabal came in and said he found another major malfunction of the heart. They went in to fix the valve that had flowing issues and uncovered a totally different issue. There were membranes growing in the pulmonary arteries which were restricting the blood flow to the lungs. They realized that her left lung has not been used since since she was born. "She is one tough cookie". They fixed the issue and are warming her back up. She will stay on the ECMO machine for approximately 24 - 42 hours to give her heart a chance to rest. He said her heart has not even realized that it has not been getting enough oxygen. Her saturation went down to 40 which would have sent most hearts in to cardiac arrest. She is still not out of the woods but he was very optimistic. They said this is the most difficult case they have seen at this location and she is a little rock star! Dr. Dabal said he has never seen a ase like this in all his years of practicing medicine. She is truly a testimony of Gods love. Thank you so much for the prayers!

This little boy knows how to make Mommy feel better!

 

The First Surgery

Darby Kate's surgery, the Norwood procedure, took place Monday. We are thankful that she seems stable and the bleeding has stopped.  The next 24 hours for her are critical.  The doctor says her odds of survival increase dramatically after that time. Updates throughout the day were posted on the prayer page:

9:00 a.m. God's light is shining straight into Darby Kate's room this morning! The picture does not do the room justice, but Brittney did an AMAZING job with Darby Kate's room. It's so serene. I'm looking forward to the day she comes home and sees it for the first time!

9:20 a.m. Darby Kate has been taken to the OR and is being prepped for surgery. We were told that the surgery will begin shortly after 10:00 am. 

10:20 a.m.  We just received our first update and Dr. Dabale is starting the surgery now. Please, please please, pray hard!!

11:10 a.m.  Darby Kate is now on Bypass and the work on the heart begins.

12:15 p.m. Research nurse just came out and advised that two of the four steps in this surgery are complete and she is doing great. The hardest two steps now begin.


1:00 p.m. We just received word that she is off bypass and they are starting to warm her up. Still along way to go but she is a little rock star!

6:45 p.m. We just spoke to the surgeon and she is out of surgery. He is concerned with her lactate levels which means that some portion of her body is not getting enough blood. He is also concerned with her oxygen saturations. They should be 80 or above and they are hanging out around 75. He said she is bleeding more than normal and they are concentrating on getting her bleeding slowed down. The doctor said that she is doing about average for the surgery that she endured. We will be going back to see her shortly so I will have at least one more update today. Please continue to pray!

8:45 p.m. We went back to see little Darby Kate and they have completely stopped the bleeding. "God is so good!" Dr. Alten said he would give her a B - but is not ready to celebrate. Thank you for your continued prayers and support.

11:00 p.m. They are allowing us to stay in the room next door so we can rest. I do not think there will be much rest tonight but I do appreciate the thought. There is a door connecting our room to sweet Darby Kate and I am in ahh at everything going on in there. Dr. Alten is teaching the RN's all kind of stuff. We can all learn something from his leadership! He has paid his dues and is respected as one of the best pediatric cardio vascular surgeons in the country. These accomplishments would give most people an ego problem, but not him. He has treated everyone around him with respect and like an equal. Watching him from afar, you can see why they fly him from St. Louis MO to attend such a large surgery. He is crazy smart with a personality, which is unheard of. Darby Kate is maintaining and has not gotten better or worse. Thanks for the prayers and words of encouragement.

Staying Strong

Dr. Jackson came by and stayed for about 30 min this morning examining little Darby Kate. She again said that our angel was doing better than any expert could or would have projected. Her oxygen saturation levels are a little higher than yesterday, but still far from where predictions say it should be. She should be taking four more medications than she is on now just to keep her alive. She is a very strong little girl. She advised that it looks like Darby Kate will be going to the operating room in a very strong position. Thank you from the bottom of our hearts for all the genuine prayers!

Update:
It is Sunday evening and Darby Kate remains strong.  She has been very alert.  She will be intubated somewhere between 11:00 and 2:00 to prepare for the surgery.

Update

Will was able to bring some much needed smiles to his mommy and daddy today!!

Daddy gives Darby Kate a bath

Darby Kate had a really good night and continues to have better stats than we were warned she would have. We were told that she would continue to get sicker and sicker. She has not lost any weight and besides retaining some fluid she has maintained her health. Further proof that we serve a mighty God!!

Darby Kate's helicopter leaving just after dropping her off

 

The Beginning

Mommy and Will watch Darby Kate through the nursery window

Darby Kate tried her best to pull the tube out of her nose

A few hours after arriving at Children's hospital

Aunt Brenda and Darby Kate

After Brother Jason's first prayer over Darby Kate

Mommy and Daddy are happy to have their baby back from the nursery

Our precious Darby Kate was born looking pink, beautiful, and perfectly healthy. Within 18 hours, her extremities and upper lip began to turn a bluish color. She was taken to the nursery where her blood was checked and she was observed; however, she seemed okay when she was brought back to the room. Overnight, as her suck reflex became very weak, Brittney knew something was just not right, so she called the nurse to check her out. Several hours later, we were told she had severe heart defects and would be sent to Children's Hospital in Birmingham. She was airlifted to Children's, and we were soon given the diagnosis that would rock our world: HLHS or Hypoplastic Left Heart Syndrome. We are three days into this journey now, and Darby Kate is staying strong considering her issues.  The Norwood surgery is planned for Monday, so she will likely be put on the ventilator Sunday.  We know God loves the little angel even more than we do, and we are trusting Him to lead us down this path, no matter what happens.