November 11:

12:00pm No calls again last night. Yay. 

When I came in this morning Ava was put on a new ventillator. It is not a conventioinal one, but functions somewhere between an oscillator and a conventional vent. It gives tiny little puffs in addition to larger inhale and exhale volumes. Her oxygen hung in the 70's for a while, but after a couple hours meds and settings were tweeked and she is now in the low 90's. Her blood pressure is holding well with the heart meds so they are starting to take some fluid off the body with the dialysis machine, 10mL per hour. Her CVP (central venous pressure) is higher than desired and they are hoping that removing some fluid will help bring it down. They are also going to get a heart echocardiogram to see if the heart needs any extra help with more medications. The nurse changed out all her dressings. She is no long bleeding from every single little poke and hole in her body. The drain coming out of her abdomen is less bloody now, but there is still a lot...so it is good that she is still able to hold up her blood pressure as she is losing fludi here too. 

November 10: Don't rock the boat

Praise God the night was uneventful, at least uneventful enough that they didn't need to call us. Her biggest issue overnight was bleeding out of the leg (femoral) vein site where the dialysis catheter was placed to replace one of the ecmo cannula. She received a lot of blood transfusions last night to account for this. She's had to receive a lot of blood, platelets, plasma, and fluid to keep her blood volume higher, which keeps her blood pressure up. As a result she is very swollen again. The risk here is that this fluid will enter her lungs again making it hard or impossible to breathe. Since dialysis and since her blood pressure has been holding steady the goal has been to keep her "fluid even" which means whatever they put in is taken out again. Ideally we would take off his extra fluid and switch her to a different ventilator..but the theme today is "don't rock the boat." While her vital signs are stable no one wants to change anything, rightfully so after what we went through last night. Her liver enzymes were slightly improved today and the dialysis machine is efficiently removing toxins from the blood that's the kidneys usually take care of. I think today they may try to wean some of the drugs supporting the heart. She is on an epinephrine drip, a vasopressin drip, and milrinone drip. Last night she received 8 syringes of epinephrine before her heart came back to us. Have you ever seen the movies where they slam an epinephrine syringe through the chest and right into the heart of a dying patient to revive them? Well they basically did that 8 times last night, only through central lines. The doctor reviewed the strips and saw that she was at that near death point for 3-7 minutes last night but she still had a fraction of a pulse- so she never lost her pulse, her heart never stopped beating. The number of minutes she was "down" just gives them a starting point by which to judge the likelihood of brain damage. When she is far more stable another head CT scan will be obtained to look for damage. She is still on the anti seizure medication (Kepra) and will be for a long time, because seizures - though a result of brain damage (in her case), can further damage the brain. She is still on continuous EEG to monitor for seizures.

I know all my friends and family were right there with me when we thought she had died. Let me tell you exactly what happened. All vitals were crashing during the surgery and the doctor just kept shaking her head at me. She kept asking me if I wanted them to do chest compressions and then reminding me that the chest compressions wouldn't change the outcome. I never answered her. She told me that she was sorry and that they did the best they could. She said we'd just let the surgeons finish removing the tubes and then I could hold her. I wanted to let you all know what had happened on the blog right away so I could focus on holding Ava at that point...which was why my post was about 2 minutes presumptive. I cried for about 2 minutes then returned to pacing the room. I reminded myself that I have no right to predict what God can and cannot do or, rather, would and would not do and that there was no point is getting upset over it until God's will was absolutely apparent.   So I still don't know what God's will is, but I do know that all the doctors coming on shift today were 100% shocked that we are still here.

I'll keep updating. I hope that I have the opportunity to only report positive changes.
I love you all so much. You are so encouraging to me. I was tear-y eyed many more times yesterday over the love I felt from our friends than for the plight we were/are in.

11:00pm Nuttin New. Ava is still in a holding pattern. They are trying to wean the oxygen settings a bit so that she is not constantly on 100% if she doesn't need to be. Oxygen is also considered a drug. More is not necessarily better. Ava will be paralyzed as long as she is on the oscillator (breathing machine) so she doesn't fight it. The doctors are very eager, though, to get her to a different ventillator that better mimics natural breathing so that the paralytic can be taken away and her neurologic status can be better assessed. Right now her right pupil is not reactive to the flashlight. I'm too scared to look up the details, but I know it's not good. Under normal circumstances I'd be researching every paper ever written about pupillary response after ischemic injury but God has pulled Ava through so many trials lately that statistics don't mean anything to me right now.          They are fine tuning her fluids to keep her electrolytes in the normal range. The magnesium was out of wack earlier.       And that's it.

 Today went by very fast. I woke up feeling rested and, just like every other day, I feel completely beat after the first hour at the hospital. I start feeling sick the closer we get to the hospital and then sicker the closer I walk to her unit. I had to advocate a little for myself today. They had completely blocked in my lounge chair with equipment so I kept having to drag in office chairs from the nurses station just to sit down. I got them to rearrange a tiny bit and put another lounger in another corner behind the dialysis machine so I could lay down. I can take suprisingly solid naps in her room. The hum of nurses voices is kind of calming and I can relax knowing that I am so close if something does go wrong. It helps that I am not very self conscious and could care less if my mouth is hanging open or my behind is sticking out.  I'm sure I'm just tricking myself into thinking those naps are restful so I have an excuse to stay in her room. Hopefully Ava is resting peacefully with the familiar sounds too. 

We're back at the Ronal McDonald "hostel" for tonight. No frills here, but someone made some excellent dinner and we picked at the leftovers. Ready to hit the hay.

November 9: must get off ecmo

We are going to "trial off" ecmo right now. The trial will take about an hour. The surgeons will be on standby to remove the ecmo cannula and place a central line and kidney dialysis if it is successful.  This is critical. Pray that her heart pumps the way it needs to and her body can hold her blood pressure up. Pray that her lungs will take up and circulate oxygen. Her body is not at the optimal state for coming off ecmo but it really needs to happen. They said that even 24 hours after discovering the brain bleed is a long time. I'll have to update more throughout the day, depending on how things go.

3:20pm. First trial off ecmo failed, pretty quickly. We are going to let her recover for about an hour and try again. Her echocardiogram today was decent and her lung x-Ray was ok. She's kind of just- right there on the edge. They think she may be capable or we wouldn't be trying. She is still completely sedate and paralyzed. Her lactate lab value was down again today which is promising in terms of ongoing organ damage.

5:40 pm we want to bump up her hematocrit to help increase her oxygen carrying capacity and to help support her blood pressure. It took a long time for the blood to get to our room because there were 5 or 6 traumas that came in. So now we are running blood, which will take about 30 minutes, then we will have another trial.

7:00pm on trial again. We have some scary stuff that God is going to have to take care of.  She is tolerating this wean better than earlier today. Doctor wants me to give a "do not resuscitate" order if she has another cardiac arrest during this process. I did not give an answer.   I believe in miracles..I've already seen them, but I also believe that God is in control and I don't know what He has planned. We are commanded to pray, so we'll just continue to do so.

7:02pm we are calling surgery to be on standby for decannulation...to take the ecmo tubes off of her.
I'm nervous..kind of regretting that I ate dinner.

7:22pm I just signed the consent for decannulation. She is barely being supported by the ecmo machine now. Surgery will be in about 45 minutes. They will remove the cannulas in the neck and tie off that vein and artery. It's the carotid. Then they will remove the cannula in the left femoral vein in the leg and replace it with a catheter for dialysis.

7:46pm we are about 10-15minutes from decannulation. Surgery team is arriving. Blood pressure and oxygen are holding. They tell me they are going to also try and place a short central line where the right cannula are.

8:27pm Dr Rawlins and Dr. Lee, the fellow, are just starting to take out the neck cannula. These are two tubes/cannula, each about the width of my little finger. The heparin has been slowed to help slow bleeding and after the process is complete heparin will be stopped completely and she'll start to get blood products that will help her clot.

8:33pm. We are officially off ecmo.

8:40pm.  My baby is going to Jesus.  Cry with me!

8:49. She is still hanging on with epinephrine and blood products.

9:05pm. Ava is still alive. Praise God. Still working on her.

9:30pm Surgery has cleared out of the room. They said that from a technical standpoint, they accomplished everything they set out to do. For the moment her vital signs are holding. Her labs are funky but Nephrology is coming to hook up the dialysis which will help correct her la
b. The doctor is worried about how the current oscillator is ventilating her lungs so we have a different ventilator on
standby. She doesn't want to disrupt Ava again because she is obviously very touchy.      I'm sure I just witnessed a miracle. Oh my.

10:40pm Ava's neurology exam after this near death was ok, not perfect. There may be some damage but her brain is definitely taking up the oxygen so we just go forward. Her liver is failing as indicated by her extremely high ammonia levels, but that can be corrected with dialysis.  Getting on to dialysis is our next hurdle. Since her kidneys and liver aren't working she needs this to take out the toxins from her body. We are just now waiting for the dialysis machine to warm up. Ava doesn't like fluid shifts so we hope she tolerates this perfectly.

11:34 pm vitals are not as perfect right now, but Are ok. We are giving her fluid and blood to keep the blood pressure up. Her oxygen is 86. She was just hooked up to the dialysis machine. We are going to keep her fluid levels "even" meaning, at this point we are not going to pull off any fluid. Her lungs might be a bit "wet" but we'll have to deal with that later.

11:49pm vital signs are better now that she was given some blood and albumin. Now we just hang out and make little corrections based on labs throughout the night. This is assuming that her heart and lungs keep up the good work. I don't even know what to do tonight. The hospital does not have a place for Ivy to stay with us and I pretty much need to stay with her. Not sure what I'll do...but I'm glad that's my biggest problem right now.

November 8th: holding pattern

I have no desire to write on this blog tonight. 

In case some people can't see my facebook posts, I'll backtrack here. We got a call this morning that Ava had two seizures. She was sent downstairs for a CT scan of the head and two brain bleeds were detected on the cerebellum and on top of her head. Because she is given drugs to keep her blood from clotting it is impossible to know how the bleeds will behave. Blood is very irritating to the brain and caused the seizures. She was put on an anti-seizure medication, and connected to an EEG machine to constantly monitor her brain waves for seizures all day.   This sequence of events prompted the urgency to get off ECMO. As soon as she is off they can stop thinning her blood so that it can clot off. In order to get off ECMO, her lungs need to be able to work. In order for her lungs to work she needs more fluid drawn off her body. In order to draw fluid off she was given medications to help keep her blood pressure higher. And I don't know why she swallowed the fly...

So by the time I had left they had drawn off 150mL of fluid. The goal was 1000. Hopefully the night shift can get off at least 500mL. Her blood vessels are now less "leaky." As the machine filters water from her blood it returns the "dry" blood back to her body to pull more fluid from the tissues, like osmosis. We want this fluid to be pulled off the lungs. Inflating wet lungs is like pulling apart two wet plates in the sink.  She was given surfactant today into each side of the lungs to help them be less sticky. She was put on an oscillator, rather than a conventional ventilator because it gives many many small breathes rather than large hard ones that could further damage the lungs. The breathes are to try and open up the lungs. At this point they are not for oxygenation, though that is the hope for tomorrow. I was hoping for today, but that was a tall order. The chest x-ray showed that about 1/3 of the right lung had opened up, so that was a step in the right direction. She will have another cheat x-ray at midnight. Ava was given paralyzing drugs in Addition to the sedation drugs so that she couldn't fight the ventilator. So before she could move her hands and feet and eyes a little, but now she can't. Being paralyzed and being sedated are different, though, so I believe she can still hear people. Shaun and I are going to record ourselves reading books for her to listen to. Music therapy was awesome in setting this up for us. 

When she is taken off ECMO (hopefully tomorrow) one of her ECMO Cannula sites will be replaced with kidney dialysis catheters, and she will be on continuous kidney dialysis until her kidneys decide to start working again. She will have another head ultrasound tomorrow, which isn't as diagnostic as a CT scan, but it can be done at the bedside, whereas a CT scan involves a major transport. 

So the brain bleeds were bad news for today, but most everything else is in the right direction, praise God. 

I maxed out today for the first time. I always envisioned that would involve screaming or crying fits but it was more collapsing. I was frustrated and overwhelmed with the shift change. The night nurses, who were perfectly nice, were people I had never met. The day shift ECMO nurse had settings much higher for pulling off fluid and the night shift insisted that it wasn't possible. This was my tipping point. I sat in the uncomfortable chair and shoved a pillow in some awkward position and passed out for about 40 minutes. When I woke up I was staring at the clock thinking it was an hour and a half into the shift and the night attending/fellow/ or resident hadn't come to check on Ava or introduce themselves to me. This was frustrating because Ava is such a high priority on day shift and I see someone within 5 minutes of getting there. I couldn't move. I felt like sandbags were stacked on top of me. I asked the charge nurse about who the docs were and she found one and sent one in to appease me, basically. It worked. I was able to walk out of there. 

Hope in the absence of prayer is futile. If you find yourself depending on hope, that will bring you to your knees. 

I am drained, absolutely drained. Goodnight. Pray for good news tomorrow and for coming off ECMO and starting kidney dialysis. 

November 7th: Eye of the Tiger

I got to see Ava open an eye today, just one, briefly. She can't, yet, open the left because of swelling. Her head ultrasounds are showing no signs of brain bleeds, which is a huge risk with ECMO, so that's good. There's potential damage from swelling on the brain, but we already knew that. It is encouraging that she moves her right hand and arm, her mouth, and her feet a little. 

Since ECMO two and half liters of fluid have been put into Ava's little body. Think of a two liter bottle of soda and then some. This was done to help maintain her blood pressure. The fluid would help for a while, then her body would dump it into the tissues (called third-spacing) and then she would need more fluid in her blood. The goal today was to pull some of this fluid. The reason being that the ECMO circuit, the tubing and filters have to be changed out after about 5-7 days of usage because of little clots that form in the system. To do this the baby will be off ECMO for 3-5 minutes..scary because this is the machine that is acting like her heart and lungs. So, the idea is that we need to pull as much fluid off her body, hopefully her lungs, before the circuit needs to be changed. This way, maybe the lungs and ventilator will be able to deliver even a little bit of oxygen during the switch over.  The day shift was able to pull off 600mL and the night shift goal is the other 400. Her blood pressure will tell if she can handle this. People can now hear teeny tiny breath sounds in both sides of her lungs. The swelling looks better even with the 600 pulled off, better enough that I finally feel comfortable posting a picture. The nurse hid the left side of her head because that is where most of the swelling is, because she has to lay on that side of her head. 

Ava's kidneys are still not working and the liver labs were a little worse today. Hopefully they are better tomorrow. If her kidneys don't kick on after ECMO she may get some dialysis. The nephrologist was consulted today to help balance the amount of fluid pulled off, with the levels of electrolytes in her body, particularly sodium, so they are watching that lab value very closely. Her lactate is trending downward, slowly but surely. 

They switched her sedation drugs to things she is used to, so she was switched from fentanyl and versed to morphine and ativan. We always knew she liked her ativan, and that helped her blood pressure right away. Sometimes a higher blood pressure for her means that she has some pain and agitation. 

Every day we deal with specialists, attendings, fellows, chief residents, medical students, nurses, nursing students, charge nurse, CNAs, and ECMO charge nurse. Then on top of these folks we get doctors and nurses visiting from the NICU because they all fell in love with her up there. We also get doctors and nurses visiting that have worked with her the last few days. The staff is all amazing. Her nurse today was her flight nurse Sunday night. One doctor that was checking on her today had her Monday night and had ordered the Peritoneal dialysis drain to be placed by surgery to help drain fluid out of her abdomen. She told me that the surgeon was very pessimistic, acting as if there was no purpose in placing this drain for a baby who wasn't going to make it. The doctor today was happy that Ava has showed up this surgeon. I overheard the PICU fellow today say "Well since she is an incredible freaking baby why don't we try XYZ (some order involving pulling off more fluid)." That was nice to hear. 

We've made a lot baby steps forward today. Her body is better perfused (taking up oxygen). They are able to get a pulse in the leg with the giant ECMO cannula in it, whereas yesterday they couldn't. We are soo thankful for a lot of things today. Ava is still very critical and we still don't know what kind of organ damage has been done, and we still have a lot of risks every single day we are on ECMO, but as the doctor said the other day..every day where things aren't worse is considered a win. So today was a "win"

Of course we know that every win is 100% grace. We live because God allows it. I just hope that Ava's story is a testament of grace and mercy and a display of God's power through miracles. A lot of doctors, actually most of them, thought and acted as if there was a 0% chance of survival and all of these interventions were to appease the parents. Ava has already shown that God trumps statistics, among other things. My over-analytical mind keeps wanting to know a survival statistic to dictate how I should feel, but now I know that it doesn't matter because God is in control regardless of scientific research or how others have done on ECMO in the past. I know that you have to reach rock bottom to really feel complete reliance on and trust in God. I believe in prayer and I believe that prayer reflects the internalization of this reliance. 

Dear God; we praise you in the storm. This is an awful, horrible place to be, Lord, but we know that you are in control. 

November 6th: Alive and holding

I'm not even sure what to write. It's not like I can even mention everything happening. There are two nurses in here who are continuously busy. Multiple doctors and another ecmo nurse are in here many times a day too. 

Ava's labs look slightly improved in some areas. Her lactate, however, is very high and that is a concern.  At this point there is more of a rush to make strides toward getting off ecmo. The longer someone is on ecmo, the more dangerous it is. It looks as if Ava will tolerate some fluid being taken off of her body. This is done by the ecmo machine since her kidneys aren't working.  Right now a piece of equipment on the machine needs to be changed because it stopped working/pulling off fluid and Ava needs a bit more blood, so we are waiting for that blood to get to the room. The goal is to to take off enough fluid that it starts coming off the lungs which are, at this moment, completely collapsed. This will be a lengthy process. I pray that her organs will start helping her out, her heart will pump with correct force, that her lactate will decrease -a lot, and that she doesn't have any bleeding/hemorrhaging issues, and that none of her organs are damaged.  The nurse on tonight is the same one that resuscitated her at EIRMC. She is a traveling nurse up there to help the EIRMC PICU get going. Shaun cried when he saw her. We were so thankful that there were 2 primary children's nurses on Ava's unit at EIRMC that night. 

We have a long way to go and this is still so touch-and-go but we can see God working and are so thankful for the unending prayers from friends, family, and strangers. 

November 5th. I choose hope

I choose hope. You really have to pick one. That isn't to say that my mind doesn't wander, mostly because I am trained to be prepared for every road. Then I feel guilty for doubting the power of my Lord. Today was another gift. Every day we are allowed to live is a blessing. 

Today Ava was, uhhh, alive. That is really all I can say with certainty. I really stay away from the word "stable" at this point because it doesn't seem to be accurate. It doesn't seem any baby on ECMO can be considered stable.

ECMO has taken over Ava's circulatory and pulmonary system, basically buying her time to come out of septic shock.  Let me explain some of what we are dealing with. Each item is a hurdle requiring God's grace. Ava got some type of infection, either bacterial or viral-we don't know. Thankfully, if bacterial, it is no longer in her system because bacteria love to adhere to plastic parts in the ecmo machine and tubing and essentially keep reinfecting the patient. The infection reached her blood. This is called sepsis-very bad. Sepsis can kill you, even an adult in as little as 6 hours. Ava's infection caused her to go into septic shock. The dynamics of her body changed. The big problem is that her blood vessels are very leaky. All the fluid just leaks right out making her very VERY swollen. She is unrecognizable. The shock also has the potential to affect other organs. During shock the body takes the available oxygen to the most critical places first, the heart and brain. The rest of the organs can have some degree of cell death from not getting as much oxygen. Ava's liver is not working right now. Her kidneys are working a tiny tiny bit. We don't know what kind of damage could have been done to the intestines.  

So what needs to happen is that Ava needs to start coming out of shock. Her blood vessels need to start clamping up and holding onto fluid so her body can get rid of it. The lungs are completely unusable at this point. The blood vessels, when working again, will "pull" fluid off the lungs as it goes from a higher concentrated area (the lungs) to a lower concentrated area (the blood vessels). Think about a dry towel on the edge of the sink and how, if one corner is touching a puddle, the towel will pull all the fluid into the towel over time. Obviously the lungs need to be usable. Coming out of shock will also help the kidneys and liver to slowly regain function. She needs to get off ECMO as soon as possible. Her issues today mainly involved bleeding. Patients on ECMO need to be on a lot of heparin to keep the blood from clotting...therefore Ava is bleeding from several places. The surgeon stitched one place where she had the guide wire in her leg from cath lab. When I left she was bleeding a lot from the leg where the ecmo cannula was placed. As a result she is receiving lots of blood transfusions and platelets. She is bleeding in a few other places too, but these two were the places causing problems. 

Today Shaun and I saw Ava cry tears through her closed eyelids. It was heartbreaking. I talked to her as much as I could before more sedation kicked in. Neurologically she still seems fine, which is one reason we are fighting so hard for her.

Music therapy came by today and interviewed us about Ava today and wrote a lullaby for Ava. We love it. We'll have to post it on facebook. 

So prayer specifics. 

Praise God for another day with my baby and for strength for Ava and for us

please Lord, bring her out of septic shock so her vessels and organs can start doing what they are supposed to

Lord please recover the lungs as fast as possible to get off ECMO as fast as possible-it is very dangerous.

Please help her pee off that lactic acid

Please Lord bring us miracle after miracle and help us give you glory

Just got a phone call---sends my heart a-racing. Surgeons are going to try and identify the exact place of bleeding in her leg and get it under control.

Today Ava and Ivy are 7 months old.