Saturday, November 30, 2013
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
Potluck Lunch reception to follow (same location). Meat, desserts, and drinks will be provided.
Sunday, November 24, 2013
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.
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.
Friday, November 22, 2013
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.
Thursday, November 21, 2013
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.
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