Memorial Service 12/7/2013

Ava's Memorial Service: A Celebration of Life

Poem written by Amber Birch (Ava's Mommy)

 

Before service Music

Homesick by MercyMe
Hold My Heart by Tenth Avenue North
Everything Falls by Fee
My Savior My God by Aaron Shust
Your Hands by JJ Heller

In Service Music Block 1

Be Thou My Vision by Selah
10,000 Reasons by Matt Redman

Psalm 139:13-18

New International Version (NIV)

 

¹³ For you created my inmost being;
    you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
¹⁷ How precious to me are your thoughts,^[a] God!
    How vast is the sum of them!
¹⁸ Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.

2 Samuel 12:15-23

New International Version (NIV)

¹⁵ After Nathan had gone home, the Lord struck the child that Uriah’s wife had borne to David, and he became ill. ¹⁶ David pleaded with God for the child. He fasted and spent the nights lying in sackcloth^[a] on the ground. ¹⁷ The elders of his household stood beside him to get him up from the ground, but he refused, and he would not eat any food with them.
¹⁸ On the seventh day the child died. David’s attendants were afraid to tell him that the child was dead, for they thought, “While the child was still living, he wouldn’t listen to us when we spoke to him. How can we now tell him the child is dead? He may do something desperate.”
¹⁹ David noticed that his attendants were whispering among themselves, and he realized the child was dead. “Is the child dead?” he asked.
“Yes,” they replied, “he is dead.”
²⁰ Then David got up from the ground. After he had washed, put on lotions and changed his clothes, he went into the house of the Lord and worshiped. Then he went to his own house, and at his request they served him food, and he ate.
²¹ His attendants asked him, “Why are you acting this way? While the child was alive, you fasted and wept, but now that the child is dead, you get up and eat!”
²² He answered, “While the child was still alive, I fasted and wept. I thought, ‘Who knows? The Lord may be gracious to me and let the child live.’ ²³ But now that he is dead, why should I go on fasting? Can I bring him back again? I will go to him, but he will not return to me.”

 

In Service Music Block 2

I Can Only Imagine by MercyMe
There Will Be A Day by Jeremy Camp

 

Ava's Video Slideshow

 

 

 

 

 

 

Our Experience and a Thank you for all who supported Ava

 

 

Closing Song

 

All My Tears by Jars Of Clay

 

 

Memorial Service Photo Slideshow

Obituary Thursday Dec. 5th, 2013. Post Register

Obituary to run in Idaho Falls Post Register Thursday, December 5th, 2013.

Memorial Service Info

Celebration of Life

Memorial service for Ava will be 

Saturday, December 7th at 11am

at Calvary Chapel Church

4250 S. 25th E. 

Idaho Falls, ID

(208) 524-4747

Potluck Lunch reception to follow (same location). Meat, desserts, and drinks will be provided.

November 24th: In the arms of Jesus

My baby is with Jesus now. Her spirit is renewed and pain is washed away in heaven, while I am broken and hurting on earth.

We got the dreaded call around 2:30am. They said that the nurse was suctioning her and she Vagal-ed down (which is the same mechanism as when you bear down to have a baby). Her heart stopped. They ran a code and cpr until we got there. Shaun and I had snatched the boys out of bed buckled the baby in and ran to the hospital. We put both boys on our backs and ran into the hospital. The front desk clerks, social worker, and Ava's nurse all helped watched our 3 kids in a room next to the front desk. I asked how long they had been doing compressions. They said 25 minutes and she wasn't responding to any drugs and was starting to bleed. Shaun and I told them to stop right away. They extubated her quickly and wrapped her in a black blanket and gave her to me in a rocking chair. She took her last breaths in my arms. I held here on and off for the next 5 hours. Shaun and I gave her her last bath and wrapped her in another blanket. We got molds of her hands and feet as well as footprints and handprints. I got a lock of her hair. We listened to the song music therapy made of her and I watched what few movies I had of her on my phone. We ate breakfast at the Ronald McDonald house and Shaun packed the car. We saw Ava one more time, for the last time, at the mortuary where we had to sign a bunch of papers. I carried her around the room and looked at and talked at all the religiously ambiguous paintings. 

I can't even begin to describe the feeling. I don't wish it on anyone. I wanted to just rock her though I knew she wasn't there. I wanted her on my chest so I could just pretend she was sleeping. I wanted to touch every body part in the attempt to burn it in my brain so I wouldn't forget what she felt, or looked, or smelled like. She looks just like me. She's my baby. She has my earlobes, and my mouth, and my small nose and my dark eyes. She has one dimple on her right cheek. Her hair is dark and thick like mine and her head still soft like a newborn.  Her hands and feet are small and perfect and so much cuter than mine. I am heartbroken for her twin. 

I don't care what people think of me posting this photo, just so you know. 

I visited her last night and saw my favorite mannerisms. She rubs her eyes and eyebrows with the back of her fists when she's tired or needs comfort. She snuggled her soft blanket on the right side of her face. She prefers her right because her nurses have always been on her right. Even in her bedroom at home, I was on her right. She grabs my finger even when her eyes are shut. She opens her eyes when I talk to loud and she knows it's me. 

She was, she is the sweetest little baby who endured more in 7 and a half months than any person should in a lifetime. 

I'm home now. Driving home with an empty carseat is one of the worst things to be conscious of in your backseat. The boys are thrilled to have normalcy back, to a degree. They are vaguely aware of the new situation. It's a little more apparent to Sam. He has been telling strangers today. Both are confused about when they will die too and they are talking about baby Ivy dying too if she gets sick.  Everywhere I look is Ava. I have so much to clean, but I don't want to touch or move any of it. I want a whole snuggle day with her, impossible. I have the last outfit she wore and I will never wash it. I threw my sweatshirt in the wash with a ton of oxiclean and I secretly hope it will keep the giant blood stain on it. It was right over my stomach and there was way too much irony in it. 

I may update this later. I'm operating on another sleepless night and overwhelming grief. 

We will post funeral information. There will be no viewing, so we have a little flexibility. Thanksgiving definitely throws a wrench in there. It will NOT likely be a weekday.

We would like someone with skills :) and some visual and musical creativity to put together a power point. 

We would appreciate small meals, but maybe every other day, and we don't want people to stay and chat. 

I do not want help cleaning up Ava's stuff.

I do not want visitors, least of all drop in ones. 

I would like someone to take over the process of appropriately donating my breastmilk, whatever that entails. I have more than a freezer full. It represents a lot of love, hard work and dedication and I do not want it to go to waste. 

Here is the song for Ava and I both:

Shaun says "yes, we miss her but I don't think I've ever been closer to God". Neither of us would exchange the last months in for never knowing our baby. 

Steven Curtis Chapman - Feet of Jesus Lyrics

Artist: Steven Curtis Chapman

Album: The Glorious Unfolding

At the feet of Jesus I will lay my burdens down
I will lay my heavy burdens down
In the stillness I can hear my Savior calling out
Come to me and lay your burdens down

So I will lay down my struggles
I will lay down my shame
All the fear I drag around through this life
like a ball and chain
(All my questions and confusion)
I will sing Hallelujah to the One who sets me free
And you will find me at the feet of Jesus

In the arms of Jesus I will find my peace and rest
I hear him calling come to me and rest
Carried by my shepherd cradled tightly to His chest
There and there alone my soul finds rest

So I will rest in the shelter of my Savior’s embrace
Hidden safely in the refuge of His mercy and His Grace
And I Will Sing Hallelujah to the One who sets me free
And you will find me in the arms of Jesus

At the feet of my Savior
At the feet of my King
I will bow down and worship
I will lift my voice and sing
Hallelujah Hallelujah to the One who sets me free
You will find me at the feet of Jesus

Read more at http://www.songlyrics.com/steven-curtis-chapman/feet-of-jesus-lyrics/#Rmlu7TKJ9YTbrxy3.99

November 23rd: Extubation

Ava was extubated this morning. As of tonight she is on 12Liters of oxygen, breathing a bit fast (has been all day), and her lung sounds are a little course. The nurse was able to tickle her throat when suctioning her nose and got her to cough up some thick mucus which was good. 

She was started on breastmilk through the foley catheter that is holding the place of her g-tube (that popped out in the cath lab early on). It is going at 2 mL per hour right into the stomach. Remember there are roughly 30mLs in an ounce, so every 15 hours she is getting an ounce. Nothing has been digested and come out the colostomy yet. I am eager to see this happen. 

Tomorrow she will be taken off the  CRRT dialysis machine for 6-8 hours to see if they can stimulate her kidneys to make urine. Oh man, pray that they do- this would be a huge step. 

During this break she will be taken down to the radiology lab to get a J-tube placed under fluoroscopy. This is something she has had before. It goes from her nose into her small intestines. I don't know what orders will follow, but I do know they want to mix the breastmilk with some kind of oil substance that binds bilirubin, assuming the bowels can still move food through. I am hopeful, as usual. 

I also hope to hold her during this break. I am not allowed to when she is ventilated or on the CRRT machine. This will be the first time since November 3rd.

If we can get Ava back to taking regular food, we can get the TPN artificial nutrition off. TPN is really hard on the liver. 

On the upside today, her platelet lab value was normal...all by itself, no infusion therapy. This was pretty cool. It was 290.  Now we'd like to see the liver take care of the PT/INR and the bilirubin. With a normal platelet count she has better chances of clotting on her own if she bleeds. The PT/INR still need to get on board, but it helps. 

Her hematocrit is still dropping every day...so some process is "chewing up" her red blood cells. I'd like to see her build up her hematocrit by herself and hold it there. The alternative is another blood transfusion.

Ativan was weaned from 0.7 to 0.6 yesterday and the fentanyl was weaned from 1 to 0.8 today. Hydrocortisone was also weaned and her blood pressure is still holding well. She is still on the vancomycin and other antibiotic. She is still on keppra for seizure prevention.

A sweet lady is going to take family photos tomorrow here at the Ronald McDonald house. So, we went and got the boys' hair cut and then wandered through the Ogden mall finding them some Christmas-y shirt. They will look nice and the rest of us will be kind of blan, but that's ok. Ivy's cute little Christmas dress is in Idaho Falls. I bought 2 during the after Christmas sales before the girls were even born. Don't have high expectations for Christmas cards. Heck, I will be proud if they get sent out. Don't tell me not to worry about it...because I am, and I always do. 

November 22nd. Poor Prognosis

We had another "meeting." Since the last one wasn't horrible, I wasn't as worried. This was a whole new set of doctors and fellows and this one was horrible. I have decided that I will not attend another one of these. Apparently I was not clear last time that I do not appreciate these "give up now" meetings. I am going to talk to the social workier monday to let her know that I will not be tricked into feeling safe going into these meetings. You either have a meeting to discuss her care going forward or not at all. If you need to tell me sometng bad then you come into Ava's room and just tell me. You don't wait until Friday when Shaun is here just so 12 people can listen to the the liver doctor beat the dead horse telling us how bad the prognosis is. They had to have a secret meeting before the meeting which I also did not appreciate. If you are discussing my daughter or plan of care, then I have every right to listen to every word. 

What I hope doesn't happen is that doctors push to try things when Ava isn't ready or not suggest another treatment in the interest of hurrying up the process.

November 21st: Underwear thief, are you kidding me!

How LOW, SERIOUSLY, how low can you go? Some girl stole my nursing bra (one of 2) and a camisole from the laundry room in the Ronald McDonald room at the hospital. Pretty tough to wash the one you're wearing when someone steals your other one. I found two of my shirts in someone else's smoky stinky laundry. I'm assuming it was the same girl who probably took my bra and cami to the showers while waiting for a washer to free up. I recovered the shirts and had to put them in a separate bag. So much for washing them. I'm thankful she didn't have a baby girl or else Ivy would be short items too. I think I know who it is, because I've never seen anyone else do laundry with the door closed. I haven't seen her recently though. low-low-low.  Well CRAP, I just thought of something and checked the laundry bag. She stole all the pairs of socks I washed to. Grrrrrr. and it just dawned on me.....the couple pairs of underwear aren't in my clean stuff either! For heaven's sake!!  The whole principal  of it just ticks me off. Now I have to waste my time and money to replace the underclothes.  Gosh I'm glad I didn't wash any of my pants in that load.

Ava was holding steady today. Some of the lab results for liver tests came back, all negative. Some are still pending. She did well for her spontaneous breathing trial again for an hour. The attending only wants to do it once a day instead of once a shift. Ava is pretty neon yellow with bilirubin. Her blood pressure got a little low last night and she got two bolus infusions of saline and wound up getting some  plasma as well. She looks like she may be withdrawing a bit from the fentanyl weans. The day nurse gave her 4 doses for breakthrough. Her neck wound doesn't look good. It doesn't look infected, just not pretty. I said "geez it looks like someone sliced her throat with a knife" and the nurse said, "well, yeah, they kind of did" Its about 4 inches long and about a centimeter wide. They said they did not want to approximate the edges in case there was any infection because they did not want to trap any infection in the wound. She did not make urine today. 

it's 1am..Ivy has been awake for the last hour playing. Her sleep schedule is butchered. 

November 20th: mini backslide

Ava started bleeding in her stomach again, not very much, but it was bright red and so identified as an active bleed. So the protonix and octreotide had to be restarted. Her hematocrit dropped a little but not enough for a blood transfusion, but she did get a platelet transfusion so that she could have some clotting factors. The liver is just not doing it's part in that department. 

Additionally the dressing and site for her best IV access site on the right side of her neck was disgusting. Before they pulled it they needed IV access elsewhere. The resident told me that they were going to get a PICC line and then get a peripheral IV on top of that. I kind of laughed and asked who in the world was going to place a peripheral IV. She said, "Oh, we'll call our IV team". I told her that two different IV teams in the NICU couldn't get one when she was perfectly healthy before G-tube surgery. That made her blink a little. So the PICC team knew Ava and refused to place it on the floor- good call on their part. The other problem is that Ava could not be transported to the IR Lab while she was on continuous dialysis. Tomorrow she will have a small break from dialysis when they change out the circuit but the IR lab is double booked already. (If push comes to shove Ava would play the trump card and bump even double booked folks to get in).  Buuuuuut the nasty central line in her neck needed to come out today and nurses really needed more access. So, the IR Lab came to Ava. They brought their sterile table and an ultrasound machine and did the procedure on top of an xray plate and had x-ray take series of pictures to help with placement. Well, after two and a half hours of planning and procedure they were only able to make it a peripheral IV. So, Miss Resident, with all due respect, this is what it takes to get a peripheral IV. The nurses are really having to juggle meds though because the peripheral line is one port whereas the one in her neck had 3 ports. So they will have to stop continuous infusions, especially her nutrition like lipids and TPN, for 30 minutes in order to give other meds. 

Also Ava spiked a fever last night. No one knows why. They took cultures of everything from everywhere and nothing has grown anything....as usual. So vancomycin was restarted just in case. Her temperature was normal the rest of the day. They did not take a culture of the pus-y neck IV. I don't know why. 

Ava did not make urine today. They were also not able to get any for one of the liver labs. I think they did get a smidgen for a urine culture early in the morning though. They pulled the foley catheter again. 

The doctors are getting creative with labs now. Now, it seems, that every conceivable test related to the liver has been sent off. They are looking for metabolic diseases or liver disease like hepatitis. Basically anything and everything related to the liver. They have also decided to send off blood for the genetic testing for the atypical HUS, but that was still put off because they had to take so much blood for other labs and the genetic testing one also needs 10mLs...which is a lot for a little baby. Results will come back at different times. It's already been 24 hours and no results have come back yet. Some of the labs had to be sent off. 

One bright side: Ava did very well in her spontaneous breathing trial today. She breathed normally for 1 whole hour today, so that was good exercise for her.

My dad and Vicky switched off "babysitting" Ivy today. Vicky went back home to organize some scout stuff and get some other things done. They'll switch off again Monday and then, Ava permitting, we're planning to meet up again in Logan for Thanksgiving. I really could care less about holidays this year, but I know my boys love to play with Vicky's sister's kids and pets and my Grandmother will appreciate a big family get together for Thanksgiving, especially since we've stolen her away from Texas for so long. 

Ivy is a champ. I made her a bunch of baby food of carrots and spinach in the ronald mcdonald room while i was waiting for the IR Lab IV surgical team. I froze it flat in ziplock baggies so that we could just break off chunks to thaw out. Thank you to whoever donated the blendtec blender to the room. 

Man, It's 2am again! What was I thinking!

 Given the spirit of Thanksgiving splashed accross facebook I think this week and next  I need to make better efforts to to Walk in the Spirit. 

²² But the fruit of the Spirit is love, joy, peace, longsuffering [patience], kindness, goodness, faithfulness, ²³ gentleness, self-control. Against such there is no law. ²⁴ And those who are Christ’s have crucified the flesh with its passions and desires. ²⁵ If we live in the Spirit, let us also walk in the Spirit.  Galations 5:22-25 nkjv

November 19: notes

Ava urinated 5mLs. She seems to do this when she is moved around a lot at 4am for her daily chest X-ray, labs and bath. I asked about maybe doing a bladder scan to double check if any urine made, was making it out. The nurse said she'd do one at 4am.

Her afternoon spontaneous breathing trial did not go as well as the one before. She only lasted about 10-15 minutes before getting tachypneic.  She will have a trial every shift to build strength. 

LDH was down a tiny bit, not the big jump I was hoping for. 

Platelets are just barely holding above 50. Below 50, she gets a transfusion. 

Fentanyl was weaned to 1.5. 

Vicky and I made 2 nice cards with a "stampin' up" volunteer group and the ronald mcdonald house and then got a 15 min massage from a volunteer massage therapist. It was lovely. 

November 18: lungs improving. i'm a ball of negativity today..its late as usual.

I'm just plain exhausted here at 2am, so this may be more brief or obnoxious. 

She was switched to a conventional ventilator late last night. She seems so much more comfortable on this ventilator. 

I haven't seen more of the choreiform movements, but then again they increased her sedation last night.

They are going to do trials off the ventilator tonight. I don't know why they have to do all the respiratory stuff in the middle of the night. Maybe they work on other things during the day. I'm worried about her being able to cough. She was already so weak and refused to cough when we were home for 10 days, but when her airway was finally cut off, she'd be forced to cough, and then she'd vomit. Not sure how this is going to go. 

Ava made 15mL of urine today. This needs to be consistent to celebrate, but we can do a little mini-cheer for the kidneys. 

The nephrologist waved his "magic wand" of paper work for the genetic testing of atypical HUS in front of Ava today. He filled out the paperwork and then pulled it from the chart because he was still not convinced. He said that maybe if he threatens her with it her lab values will normalize. It was all in good humor. The test is 5,600 dollars and is done in Iowa. I was curious. The test also only predicts 30-50% of cases. The rest are still unknown. He is going to draw another LDH lab value tonight and if it comes down again, I imagine he'll hold off on it altogether. The nephrologist talked to me for a long time about different dialysis options and what is best for little ones. He said infants do better with peritoneal dialysis about every other day when it is discovered that this may be more long term. 

GI came this morning. I missed him. Nothing profound coming from that way yet. We want to make sure her stomach and bowels are very healed after that bleed. For reference: that bleed drained about 400mL of blood from her body out of her stomach and intestines/ostomy site and out her nose. Her little body holds 500mLs they said. 

She is off all vasopressors (squeezing the blood vessles) including vasopressin and octreotide and she is off the nitric oxide inhaled (vasodialator to help lungs to take up more oxygen). These were necessary steps before even thinking of feeding the gut. 

She is still extremely yellow from bilirubin. That has not started to come down yet, but it is not increasing every day either. 

Personal struggle: Trying to be a mom to all my kids, but ultimately having to pick between them. Again, Ivy is not allowed in the PICU and I wouldn't think of bringing the boys in there, I'm pretty sure they're not allowed either. My situation is going to get very complicated after this weekend. The only time I will be able to be with Ava is if someone is watching Ivy..at the hospital. She does not take a bottle and I am not pressing the issue because it is really the only time she sees me right now. I am not sending her back to Idaho and losing another kid. My boys have taken an emotional hit, but praise God, they know how to verbalize it, at least some of it.  Hanging out at the hospital for long days is not good for them, so can you see how complicated this is with Ivy who needs to stay by me. I also can't have a different person watching them every day. That is NOT healthy. ADditiionally people are not allowed to watch them at the ronald mcdonald house unless I sign over and notarize temporary custody (which I have done for Vicky) and they cannot go to yucky playlands or preschool because they need to stay as healthy as possible. So I either pick my boys and Ivy, or mess up everybodies' lives and attempt to spent what could potentially be Ava's last days with me. There is no magic answer to this. The hospital needs a freakin' program to address this issue with people like me. I have been battling the same issue since April. So out of state moms only get to see their critically ill baby on the weekends unless they have family that doesn't work and can spend indefinite amounts of time out of state..also not practical. Mom's that have twins are even more screwed. This is the same rant I've had before. It's just on my mind and giving me a horrible headache. If it were a couple weeks, I could stomach it, but we've already played this game for 7 months. Again, no magic answer because my boys already need therapy. But, thanks for listening to my diary entry. 

p.s. I love everyone, but I also sleep in when I can. It is impossible to get back to sleep if my phone makes noise because my body is now trained to do that. I cannot silence it because the hospital needs to get ahold of me so it is turned up very loud to wake me if it does ring. Please don't call or text before 10:00am. Ivy has been sleeping late too because her schedule is royally goofed up. Facebook doesn't matter because I don't have noise attached to those alerts.  sorry, love you all. I do love the support, desperate for it actually. 

p.s.s. If I am ever too tired to type on this blog I am going to skip days or have really pathetic medical jargon updates for myself. I know that is rough for everyone else, but I am barely surviving here.  Do not be offended if I do not answer all messages, texts, or facebook. i'm low on emotional energy. again, sorry. here's to being human today. Cheers. 

November 17: conventional ventilator

Noon: 

quick notes basically for me. 

Klebsiella bacteria was cultured from the stomach wound. The 3 antibiotics that she has been on are not good coverage for this one. All others are stopped and ceftriaxone/rocefin will be started today. This is not likely what caused the whole event. Rocefin will also help cover any pneumonia that may have occured.

She will probably be switched to a conventional ventillator today. 

Respiratory therapy retaped her tube so she  is paralyzed right now. Hopefully we can get the echocardiogram while she is still paralyzed. That would be ideal. She doesn't have those choreiform movements when she is paralyzed, obviously, so procedures are much easier. 

Right now she is off the epinephrine and off the vasopressin and later today will be taken off the octreotide. As long as she can stay off of these and be weaned on the conventional vent we may be able to try feeding the gut in a few days. If the gut works, then she could have UV lights to help clear up the jaundice...and then excrete the waste through the gut and colostomy. The resident said that the bilirubin is so high at this point that this is really the only way we'll be able to get rid of it.

The liver enzymes were about the same today. The GI docs said that it was encouraging that her albumin was in a normal range because the liver makes albumin- so something is working in there. 

They are going to try giving some vitamin K to see if they can stimulate her body to make clotting factors.

The fentanyl sedation has been weaned. The nurse started presidex last night and stopped it again. Her blood pressure is on the low side. They think they may have taken off a little too much fluid and dehydrated her a little. So today they won't draw off any fluid. 

They took the NEERS reading off today. This, supposidely measures the amount of oxygen the brain is using. The numbers were all over the place, but her oxygenation has been good, and we hadn't been doing anything with respect to the readings anyway, so it was taken off and is one less cord to deal with. 

Evening: Ava was switched to a conventional ventilator. It was an easy exchange. After being on it for a few hours they were already able to wean the settings again. This is good for her right heart function that is trying to pump blood to the lungs against ventilator pressure.  Ava seems more comfortable with this ventilator. She can throw in her own breaths any time she wants and isn't fighting against ventilator pressure like on the old one. 

They did another cardiac echo this afternoon. They looked at pressures in the right heart. They were about half of what they were on the 11th but still 3 times higher than normal indicating the pulmonary hypertension. They said her right heart function was not as good as the left, but not bad. Since it was the weekend the cardiology fellow came and did the echo, which was nice because I could talk to her about it, whereas the techs aren't allowed to make inferences. 

So the lungs and heart seem to be on board with recovery. Now we need the liver, intestines, and kidneys to wake up. These are make it or break it organs. 

On other fronts: The boys came to slc with severe diarrhea...passed it on to Shaun and I. Shaun had the added pleasure of puking last night too. (TMI? too bad) As a result I don't touch Ava or get in her face. Not the plesant weekend I was hoping for. The boys are having a hard time. William in particular says he misses his whole family and wants to sleep at his own house. He just cried and cried when they left today. Made me sad :(

Erin Reed drug me out of the house tonight. She treated me to the paint mixer where we made the copycat painting and had a glass of wine. Then we went to sushi....then back to the hospital to see Ava on the conventioinal vent. It was an excellent night (for us...Poor vicky was miserable with screaming Ivy)

November 16: choreiform movements

When Ava was awake today all of her limbs and her head jerk. The fellow said that she did not think these were deliberate movements but instead choreiform movements. These would result from damage in the brain, the basal ganglia. That's really all I know. I've been trying to research it, but it is too annoying on this old ipad. The fellow said that it has been seen in kids coming off of ecmo, but that was an even narrower google search and I had no luck. She said that at this point it is concerning only because she might accidentally adjust the ET tube (the tube down her throat for ventilating the lungs). Otherwise there was nothing she would do for it aside from paralyze her again if it became a problem.  These movements are complicating the fine balance of keeping her blood pressure in a certain range because when she is awake and jerking her heart rate and blood pressure are high...so the nurse turns down the vasopressin, and turns up the dialysis setting to pull off more fluid from the blood. Then she gives her more sedation to calm the jerking movements and her blood pressure goes the opposite direction and she has to turn up the vasopressin and stop pulling fluid off. I don't know if this will continue forever or implications it has for functioning in life. 

The ventilator settings were weaned a tiny bit today. Her bilirubin number keeps climbing so the jaundice is getting pretty bad. That liver really needs to wake up and help with this because the dialysis machine does nothing about it. They stopped the lipids (fat nutrition) that she is getting in her veins to try and take a little stress off the liver. The artificial nutrition that goes through the veins is stressful on the liver. We don't know if her abdomen can even handle food. This will not be possible until she is on much lower ventilator settings and probably less sedation. Sedation and narcotics affect digestion. 

This is all I know.  It was hard to watch her flailing today. She looks like she is in such distress. I hope she is not. Talking to her or holding her made it worse which, of course, makes me feel even more helpless. I have zero ability to comfort her.  She really only looked comfortable when she was sleeping or more heavily sedated. 

Mommy and Ivy getting ready to go to dinner. This is the Ronald McDonald Room at the hospital. It's very nice. 

November 15: just reflection

On days where there seems to be little in the matter of medical things...you may find my postings to be  a bit more reflective. I'm finding that this writing can be therapeutic, though wearing my emotions on my sleeve is a bold step for me, and I don't or won't always do this. I am absolutely encouraged and humbled by the big stack of cards from complete strangers in Boise/Weiser. 

Yesterday I was annoyed by the pessimism of doctors. I realize this is their job, but I was just sick of hearing it. I am not so naive as to believe that I will undoubtedly get to take my baby home. I realize the extent of injury to her organs has yet to reveal itself. I also know that Ava has overcome insurmountable odds, and I will say it again, that I have no business to presume to know what God will do with her life..or mine..or anyone's for that matter. In the meantime ALL I can do is be thankful for another day with my baby, because at this point, I know she's in there somewhere. I totally forgot where I was going with this, but hey at 2am I'm just proud to sit my rear down to type. 

Vent settings were adjusted today. I'd like to say "weaned" but, really - by the end of the day they were pretty much in the same spot as the beginning. A new attending doctor came on and had slightly different priorities compared to the last. Yesterday there was some pus coming out of a sore on Ava's belly. Under the microscope it showed gram negative bacterial rods but as of yet, nothing has grown in the culture. To be a little safer they started a broader antibiotic that covers a few more gram negative rod type bacteria. An ultrasound was done today to see if the sore had an infectious tract reaching into her abdomen. The results said "maybe" so that was super helpful. I didn't hear anything more of it this evening. The goal tonight is to pull more fluid off her body and to wean the vasopressin heart med. She was taken off the vecuronium paralytic this morning and by the afternoon she was moving all limbs and head and opening her eyes. I was torn. It is so nice to see all the movement but she was obviously uncomfortable. I think she hates the ventilator. Heck, I do too, but it can deliver stronger breathes with more pressure in a gentle way. "Gentle" is relative. This evening they added a third drug for sedation. I sure like it when she opens her eyes to look at me, but there is some obvious distress so I'd rather her be drugged up and comfortable. 

We had a care conference today. The doctors gave us a review of systems and were careful to stay positive rather than tell me all the bad things that could happen. I'm sure social services gave them a heads up about my concerns for this conference. Plus, they invited our chaplain friend from rainbow kids and another nurse from another team to help us feel protected I believe. Our big concerns right now are...ok, everything is a big concern. We are concerned about the pressures that the right hearrt are working against. We are concerned about the liver. Ava is very yellow, the bilirubin is high. We don't know how much of the liver was damaged and how much, if any, survived and can function again. We don't know about the health of the kidneys. I guess this is a slightly lesser concern in the immediate future because dialysis can take over for the kidneys for a long time..3 weeks to life I'm told. We don't know about the small and large intestines. They really need to work. They can't regenerate themselves like the liver and no machine can take over for them. Infectious disease still has no idea how this event started. They do not think it started with a UTI. They are still leaning toward the atypical HUS condition. In a perfect lovely world with perfect steady improvements over some unknown length of time there is the potential of back-transfer to EIRMC to complete recovery. I'm not sure we'll even be in this boat but social services is checking with our insurance to see if it could ever happen. 

The Bible verse for today, that has been stuck in my head since yeterday, is my favorite.

Do Not Worry

²⁵ “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?²⁶ Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? ²⁷ Can any one of you by worrying add a single hour to your life^[a]?

.....28-33...... ³⁴ Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Matthew 6:25-27,34

on other fronts: I am in denial that Ivy is no longer a newborn. case in point:

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November 14: please clot baby girl

02:00 am We were called in the middle of the night. The calls we don't like. Ava is bleeding from her stomach we think, an upper GI bleed. They have pulled off about 120mL (8am back edit: 300 + mLs) of blood so far. She is getting emergency transfusions, plasma, and platelets. She MUST clot off. The GI docs say that she is too high risk to try and go in endoscopically to try to find the bleed to cauterize it.    Shaun isn't doing so well. I'm just glazed over. I kind of wish I'd just vomit, because it seems like if my body did something-anything I would feel better. 

8:15am Bleeding has slowed. She has received a LOT of blood, plasma, and platelets to keep up her blood pressure. She is paralyzed again and has an anderson tube from her nose to her stomach to help get rid of the blood. The catheter that is in the g-tube hole quit draining, probably because it has a blood clot on the end of it. Nurses are also emptying blood from her colostomy bag. It looks like maybe a little blood got in her lungs. Her oxygen saturations have been a little lower. Higher vent settings has helped counter this. I hate to see that, though, becaue higher vent settings put more stress on the heart. 

All the PICU docs, residents, fellows, nephrology (kidney) docs, neurology docs, and GI docs are meeting to discuss Ava at 8:30 am. 

I was here all night. I am super exhausted. If Ava is stable I will be able to get a little sleep in this lounger. 

9:37 am The meeting with the big wigs is over. They still don't want to scope her stomach because of the risks and because it probably wouldn't change the management anyway. Her prognosis is poor...what's new? It's been poor since day one and I've always known this.  They want me to draw a line in the sand so they know when to stop treatment. They kept looking at me and even directly asking me like I had some big decision to make based on limited information. I won't do this based on statistics and probablities unless her condition worsens and does not recover...asfter giving her a chance to recover. They talked about atypical HUS again. One of the treatments for this is giving plasma, which we are already doing so we might send a genetic sample at this point, but I think that they think she won't live long enough for it to matter. All of them have a very pessimistic view, maybe realistic view, but its not helpful. I already know she has a million potential problems that could cause her to pass away. It is not helpful to remind me every day of all the potentials rather than looking at what Ava is doing. The bleeding IS managed. The kidneys ARE managed with dialysis and her labs ARE improving thus far. That is what Ava is showing us right now. I don't need to dwell on all the bad things that could happen tomorrow just because they are risks and we don't know how the organs were affected by lack of oxygen.    

Hospitality cart is here...I'd better run so I can get a snack. 

November 13: Diagnostics

2:00 pm:  "Infectious Disease" is a group of specialty doctors just added to Ava's resume. They interviewed us about what lead to this event and about who or what Ava was around at home. In colaboration with Ava's regular attendings, they have ordered a bunch of new tests to try and narrow the field and rule things out. They've sent a blood sample for flow cytometry to the U of U lab to screen for cancer. They did a pro-calcitonin test which was very high- indicating a lot of inflammation consistant with this sepsis. They took blood cultures from every line in her body to culture again and to also look for fungus infection. Sepsis resulting from fungus is rare, but possible. Her white blood cell count has risen for the last three days indicating a worsening infection. She will have an abdominal ultrasound today to look for possible sources of inection in the abdomen, perhaps an absess. An absess may need to be drained. A CT scan would be better to look for infection in the abdomen but she cannot be transported with all this equipment right now. She is on two broad spectrum antibiotics so a rising white cell count raises some questions. 

Her heart meds have been turned up to support her blood pressure. I hope we'll be able to wean them again today. Her ventillator settings have been weaned a little, though, which is good. We really need to get the vent weaned enough to switch her to a conventional ventilator which will take some of the pressure off her heart. Actually any time we are able to lower vent settings, it helps take some presure off the heart. It has more to do with the pressures rather than the type of machine. 

LDH and Bilirubin are also high. 

6:20 pm 

Ava is requiring a little more support for blood pressure. The dose of heart meds she is getting is now quite high for epinephrine and vasopressin.

The ultrasound shows that Ava had a spleenic infarction. So basically her spleen died in this event of the last week +. As long as it doesn't cause problems it won't have to be surgically removed. She will be at increased risk for infections for the rest of her life. You can live without a spleen. You are just immunocompromised. Hopefully this helps explain why the white blood cell count is so high at 34. 

Ava's LDL is high and haptoglobin is low and platelets are low- constantly having to be infused. Based on these lab values and symptoms docs are now suggesting that she may have a rare genetic disease called atypical hemolytic-uremic syndrome (atypical HUS). It can be triggered by infection. It affects 1 in  500,000 people. Do not confuse it with typical HUS.  More info here. http://ghr.nlm.nih.gov/condition/atypical-hemolytic-uremic-syndrome

http://www.ncbi.nlm.nih.gov/books/NBK1367/

It will take many weeks to get genetic testing back for this, so the doctors will collaborate in the morning and may decide to start therapy just based on symptoms and lab values.   This rare genetic disease is not "why" she got sick, I think, it is just activated by the sickness. 

The hits just keep comin'.   I'm not really a fan of "today"

 She opened her eyes for Shaun and I. She looked very distressed.

 She is somewhat grabbing at things, mostly with her right hand. The left hand is kind of weighed down by ventilator tubing. 

Grandma VAn Sickle and Ivy hanging out in the Ronald McDonald Room on the 3rd floor. She said her first word yesterday- the little stinker- "dadda". She's probably going to learn to crawl and walk in this room. Good thing they like us.. I think.

 Some shiny glittery pumpkins at the Ronald McDonald house (not to be confused with the Ronald McDonald Room at the hospital). ..Note..I don't normally put my kids on public floors, but she was headed up for a bath anyway. 

11-12-13: Alvin and the chug chugs

5:25 pm. Ava's dialysis machine was switched out today. Each machine has a name. This new one is called Alvin. It operates on water pressure and the dang thing has a loud sputter-chug-chug every hour or so that startles anyone in the room because it sounds like it is struggling to function. Apparently it's not an issue but it makes my heart beat a little faster every time.

If this ride is a roller coaster, then today would be one of the slumps. Her white blood cell count was a little higher-an indication of infection. We had a meeting with an infectious control doctor to brainstorm how this all started, but I imagine there wasn't much insight since we were only home for 2 weeks and Ava hadn't gone anywhere and the people in our home were all vaccinated.     Around noon today they switched out the dialysis machine, so she was off for about an hour and a half. This isn't a big deal-it's not like it's providing continuous life support like the ECMO machine or the ventilator. Around the same time respiratory therapy came and retaped her intubation tube in her throat. After that her oxygen saturations dropped. After about 30 minutes of this they got a chest x-Ray to make sure the ET tube was directing oxygen to both lungs (in the mainstem) instead of slipping into just the right lung (technically the bronchi). It was slightly to the right so RT pulled it back about a cm which helped a little. My heart was beating super fast around 5pm because the O2 was still not where it was earlier and the nurse was having to increase the epinephrine and vasopressin heart drugs repeatedly to keep her blood pressure up. Right now her vital signs are holding up a little better and the nurse is able to wean the heart meds again.

The vecuronium was turned off today around 11am. This is the paralytic. They said it would take at least 6 hours for the body to clear it enough for Ava to be able to move. They took away the EEG machine that was monitoring her brainwaves for seizures, so they wanted to make sure her body wasn't paralyzed if she had another seizure so that the nurses could see it. The ventilator she is on provides very unnatural breathing, though, so she may need to be paralyzed again if she wakes up enough to fight the ventilator.

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.