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"
Sunday, March 31, 2013
Day 7: Second Try
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| Priceless photo of her holding my finger. One I will cherish forever! |
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!
Friday, March 29, 2013
Day 5: A New Day
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| 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!
Thursday, March 28, 2013
DAY 4: ECMO
Everything has been relatively quiet for Darby Kate as they have been slowly weaning her off the ECMO machine over night.
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.
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| 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.
Wednesday, March 27, 2013
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.
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.
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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!
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!
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| This little boy knows how to make Mommy feel better! |
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