Take a look again at this picture of Sadie, doesn't she look good?! Did anyone ever think 18 months ago when she was laying in that NICU all hooked up to machines that she'd come this far?! And she has SO MUCH more to do with her life. She is an amazing little girl, and I have a feeling she's not done wowing the world yet. She is definitely destined for great things!
A friend of mine recently sent me a message on Facebook asking me to pray for a family she knows where Mom was rushed to the hospital and her baby was emergency delivered at 33 weeks because her baby was deprived of oxygen. She later posted this, which was written by the aunt of the baby. I don't know these people, but I feel like they are in the midst of living our nightmare from 18 months ago. I know how much it means to a family in need to receive prayers from ALL over the world, so I encourage you to read this story, then get on your knees and pray that God works yet another miracle in a family that is in crisis. We know first hand that God works miracles, even when you've given up hope. I can't help but think of my little miracle child (and all the other miracle children I've met over the last year and a half) and, while I physically HURT for this family, I also am encouraged by this story that baby Augustus will make it, and, just like Sadie, he will never cease to amaze the world with what he can do. It sounds like he has already top-notch care and has a fighting chance. He is already showing improvement, and, even though the doctors always present the worst, the family is full of hope. Well...I'll let you read it (have tissue close, it's a happy-sad).
I wouldn't normally subject you all to such a wordy update on baby Augustus, but I just cannot do it without sharing how HUGE and LOVING our God is. He is in literally every detail!
As you probably already know, Luke and Melissa were rushed to Kadlec Medical Center in Richland in the wee hours of Tuesday morning, July 19. Melissa awoke to violent hemorhagging which continued the entire way from their home to meet the ambulance on the Kahlotus highway, then from there to the hospital.
(Praise: That this all happened in the middle of the night when a) Luke is home and not an hour away for work; and b) the children were asleep and didn't have to witness them leaving for the hospital. It was very scary.
Praise: Neighbors close by to come stay with sleeping children until the Ashleys could get there. Which brings me to
Praise: My Ashley and Ashley Mask don't have to work right now, so they're with the children!)
Once arriving at the hospital, Dr. Ortolano had barely a 5-second peek with the ultrasound wand before he shouted, "C-section! NOW!" He had no time to wait for OR set-up, no time to wait for sterile field prep, nothing. Luke says the incision wasn't finished before baby was out. And from "C-section! NOW!" to baby being born was less than 3 minutes.
Dr. said baby was probably without oxygen for the entire duration of the hemorhage, which was caused by placental abruption (which was caused by pre-eclempsia).
(Praise: He said the fact that baby was resucitated (sp?) at all was a miracle.)
Luke and Melissa will need to fill in the information regarding what happened at Kadlec. I only know what nurses in Seattle told me, that they had to work really hard to get him stable enough to fly. Then they almost decided to send him to Spokane because the weather between Richland and Seattle wasn't the best. They waited for Seattle, since they'd do the same things in Spokane that could be done in Richland. Again, details will need to be filled in by Luke and Melissa.
(Praise: I was already in the Seattle area so Jonah could go to golf camp (which was canceled but for some reason decided to come to the west side anyway) and could go be with baby, while Melissa was recovering, getting well enough to make the trip.)
Baby finally rolled into Seattle Children's at 1:50 pm on Tuesday. They had procedures and things they needed to do before I could go see him. I wasn't able to get in until 4pm. He was so tiny (but not too tiny), he looked so perfect on the outside, I never would have known he wasn't as perfect on the inside.
Baby was put on a cooling protocol in flight, which was continued at Children's and will continue for 72 hours. This means that they cool his system to slow things down.
Essentially, his organs would be searching for needed oxygen and not getting it, which would cause them to deteriorate. The cooling protocol greatly slows down or stops that search and gives the body a chance to recover from the trauma.
Around 5:30 pm Tuesday night, the nurses hooked baby up to a portable EEG.
Flat lines. Two very ugly flat lines. They remained flat all through the night.
At roughly 6pm, Luke and Melissa were being told by doctors (at the same time as I was being told by nurses) that there was no hope. His chest x-ray showed complete cloudiness in the lungs. He couldn't breathe without the ventilator, and was switched to a different one called hi-fi. He wasn't putting out urine which meant his kidneys were damaged. He most definitely had a brain injury. He had no brain activity. His pupils were fixed and dilated. They were told to expect the worst and be ready to make some tough choices.
He was limp as a rag doll. Anyone who's been around a newborn will know how weird that is. To open up a baby's palm and have it lay there flat. Fingers didn't curl closed. To move his arm or leg and he doesn't resist or try to curl up. Just limp. I've never experienced it, it was so unnatural.
He wasn't sedated at this point. He just wasn't moving. And those two EEG lines on the monitor were still ugly and flat. His little pupils were still dilated.
When I went to sleep at 12:30 Tuesday night/Wednesday morning, there was very little hope. The nurse told me they were keeping him alive until Luke and Melissa could get there.
When I got back at 4 a.m., he had begun to have some reflexive type movements - tickled foot, squeezed hand. They were extremely faint, but they were there. So were those two ugly flat lines, though, so the nurses wouldn't concede that this was good.
By the time rounds happened (around 8 a.m.) the doctor was saying she couldn't be certain that the absence of brain function wasn't the result of heavy sedation during the breathing tube switch-out. She also said it would be better to wait until after the cooling protocol was finished to do any definitive testing, brain, kidney, anything, since cooling slows everything down. The first bit of hope!
At some point in the afternoon (4pm maybe?) they decided he'd been weaned from the hi-fi ventilator enough to switch back to the standard. The nurses said it was the easiest transition they'd ever seen! Praise!
Jump forward to the hours before Luke and Melissa arrived, around 5 or 5:30 tonight (Wednesday).
Spontaneous movements! Yes! NOT reflexes, NOT seizures. And lots of them. First, he'd move his fingers a little. Then his whole hand. Then he'd move his whole arm! More and more as that last hour wore on. But his pupils were still fixed and dilated!
But the EEG? It started to jump around! And without stimulus to get it to happen. Spontaneous EEG activity on his own!
I left the room when they put in his PICC line. When I got back? HE WAS BREATHING ON HIS OWN! Still hooked up to the ventilator, but he was doing 95% of the work himself. PRAISE!!!
When Luke and Melissa arrived, he definitely responded to their voices. He moved more in the first 20 minutes than he had all day. PRAISE!!!
And then... the doctor. I'd call him a jackwagon, but I'm a lady.
What he told them:
- Your baby has no brain function (in spite of obvious signs of lots of activity, plus EEG response to sudden loud noises; doctor was shocked to see that, and said baby could hear, but still wouldn't have a good quality of life, you should really consider what you want to do)
- Your baby hasn't put out any urine (which he had, and was corrected, and once again shocked)
- Your baby lacks the most primal of reflexes, like swallowing and reactive pupils.
- Doctor used the word "burden" no fewer than 5 times.
What he didn't tell them (but the first shift doctor told me before she left):
- Nearly everything is a wait-and-see. You can't achieve definitive test results during cooling protocol. It was WAY too early to be advising about pulling the plug! He was in a braindead coma, yes, but it was too early to make decisions based on that.
- Even with the cooling protocol, they can tell there's no fever (which would indicate infection) because baby's heart rate is normal.
- Chest x-rays showed complete cloudiness Tuesday, which means that the alvioli were mostly collapsed. Chest x-rays Wednesday night looked normal!
- Baby's heart has been beating this ENTIRE time without any help. Completely on its own.
- Baby's blood pressure top number was in the 30's all day. Went up to near 60, the low end of normal for a newborn, after being switched to the standard ventilator.
- Baby's oxygen saturation was in the low to mid 80's all day (goal was 90) and went to 100 after being switched to the standard ventilator.
- Baby is now doing almost all his own breathing (WE had to point that out, and he pooh-poohed it)
- Baby is moving on his own. LOTS. Doctor said this means nothing, since pupils are fixed and the most basic of reflexes like swallowing aren't there.
- Baby has so much brain activity now!!! Again, doctor said this means nothing since pupils are fixed and the most basic of reflexes aren't present.
Luke, Melissa and I left the room for an hour to go have dinner. And when we got back?
REACTIVE PUPILS!!!!! One of those most primal of reflexes the doctor told us he should have.
So to make an extremely long story short? Augustus still has a long road ahead of him, but GOD IS BIGGER THAN THE MONITORS. HE'S BIGGER THAN THE DOCTORS. HE HAS A PLAN AND A PURPOSE AND HE IS MIGHTY.
We are praying specifically for Augustus' healing, and also that God would glorify Himself at Children's. What a mighty testimony!
Hi Christie,
ReplyDeleteI came across your post on the newborn brain cooling page. Just wanted to write to you very quickly to let you know that my little boy Anton was born in Shanghai on May 19th 2010 at 34 weeks exactly, weighting in at 4lb 2 oz. Like Melissa, I suffered pre-eclampsia. Baby had stopped moving for 4 days before birth but the hospital kept sending me home until they did an ultrasound and saw that baby was deprived of oxygen. To cut a long story short Anton was stillborn and had to be fully resuscitated. Like Augustus, he was completely limp. Just like a rag doll. Unlike Augustus, he could not get the cooling treatment because he was too low weight. We were given a very bad prognosis...and then, little by little, Anton started showing signs that he was there, fighting, and had God on his side. We were discharged after 18 days. Anton managed to breastfeed at 1 month old. The first year was tough because he was delayed in all developmental areas. But he caught up. He took his first independent steps at 11.5 month corrected age (although he was absolutely non mobile 2 months before that)and there is no stopping him. Prematurity is very hard to cope with and so is HIE so I know how awful his parents must feel. However, prematurity at this particular stage of 33 - 34 weeks is not an added problem but a positive! My neuro in France (we're French and went home when Anton was 2 1/2 months old to get good medical opinion) told me that research had shown that the impact of HIE on a premature infant aged around 33 - 34 weeks was lesser that on a full term infant. The reason for this is that the brain is not yet "finished" and still very much "plastic". Regarding the sucking reflex, it is actually normal for a 33 weeker not to have his reflex yet. My son didn't have it at birth and needed a tube to begin with. This was both due to HIE and prematurity according to my neuro, so we can't base a prognosis on this sign alone. I will be praying for Augustus and ask the Lord to look after him and help him just like he helped Anton. I will also pray for his parents to be strong and positive, and to believe in their little one. I know how terrible it is to give birth prematurely to a HIE baby, but they have to trust him.
Lots of love,
Sonja
I don't have a lot of time to comment right now but This is Augustus' Mom and Dad and we want you both to know how incredibly blessed we have been and encouraged by reading both of your stories! Thank you so much for sharing and praying!!! The hope that is in our Lord Jesus Christ is amazing and we have been very blessed by hearing what He has done with your precious ones! Thank you!!
ReplyDeleteHi Christie, Melissa,& Luke
ReplyDeleteMy son was born 10/14/10 41 weeks after a blissful pregnancy got into distress had to be delivered emergency C-sect not breathing. Rushed to Childrens Hospital D.C and cooled for 72hrs. The doctor said he would not make it through the night but God said yes!! The doctor said he will never breathe on his own but God said yes!! On the 4th day he stabilized and has been breathing on his ever since. The doctor told me it would take him almost a year to learn to swallow and I told them before he leaves this hospital he will suck and swallow. The last Saturday he sucked and swallow on his bottle and he is eating baby food and drinking from a cup. They told me he was a beautiful house with no plumbing but God said that is not the case. They said he would be blind but God said He would see and he went to the opthamologist and he said he is doing amazing and all the structures of his eyes are perfect and he can see. I could go on and on about how God has just been so awesome and the miracles he has performed. I want you u to be encouraged and no matter how bad it looks remember God can do the impossible. I will be praying for Augustus and your family.
Hi Augustus' family (via Christie)
ReplyDeleteJust wanted to add to the chorus of hope. My son Aaron has very sluggish pupils while on cooling and no gag (which I later found out is "normal" while on cooling) he also had an abnormal MRI. He is now a happy healthy 3 year old. Our blog is www.coolcapcutie.blogspot.com
While the range of outcomes is wide, it seems that most often the kids do better than predicted, so keep the faith!
Hi Augustus" family...I also want to add my encouragement. I am the grandmother of Elisa who was HIE at birth. She was a full termer, but was delivered not breathing and had no pulse for at least 12 minutes. We still do not know the cause of this tragic event. Our family was also given a very grim outlook after a devastating MRI, and we did have a DNR order in place. However...amazing miracles began to take place!! Elisa could suck and swallow...began over-breathing her vent..over-peed her catheter...began nursing etc. while still in NICU. She was born 10/27/10 and is now just about to start walking. Elisa has never missed one milestone. Miracles do happen!! I will add you all to my prayer list. May our Father bless you all.
ReplyDelete