november 3/4 My God is BIGGER

We've been up for almost 72 hours straight at this point. Shaun and I aren't worth much right now, but I know how concerned everyone is, so I thought I'd better record todays events before I forgot.

Ava didn't sleep Saturday night which is atypical for her. She was fussy all night. She didn't have a temperature, her abdomen was soft, her food was moving through fine, and her stool output in her ostomy was normal. BUT she is NOT a fussy baby. I gave her tylenol about 5 am and an extra dose of her favorite med, ativan, at 6am. Neither phased her, so we took her to the ER at EIRMC at 7am. There    we were told that it was likely a virus based on her mild increased need for oxygen and low grade fever of 100 at that point. I told the doc about her UTI and septic history so he ordered a septic workup. I refused IV pokes from anyone except NICU nurses. Finally the 5th attempt got one in her scalp, which is the least desirable location because they are lost so easily. The ER doc tried to talk me into an IO at that point (an IV into the long bone of the leg) and I told him I wasn't ready for that yet. He gave her a dose of Rocefin to cover the possible infection that I was worried about, though he still thought it was a virus. We decided at that point that we felt comfortable being admitted to the PICU at EIRMC. This is a very NEW unit. Dr. Olson did an assessment and told us that if she got worse that care might be turned over to the attending. Ava was resting but not quietly and was still breathing fast and was slightly tachycardic (fast heartrate). She was given vancomycin and gentamycin. I left for a few hours and Shaun stayed with Ava. When I got back Shaun said that she was still really fussy and inconsolable. The PICU attending had taken over her case. It was now night shift and there were two nurses that drive up from primary children's hospital to work 2 weekends a month. The nurse that had Ava actually had her in the NICU in the past. The doctor was talking to me about getting better IV access and trying to get a central line. All of a sudden he noticed that her breathing changed, basically respiratory failure. At that point he ran a "code" meaning loads of support staff, pharmacy, respiratory therapy etc. Ava was sedated and intubated. At this time the doc was able to get an IJ line into her neck with two ports on it. This line was a huge blessing. Now we decided that we felt more comfortable flying Ava to Primary children's. It was so late, and SHaun and I were so tired that we decided to drive together and get a head start and meet Ava in Salt Lake. So we went home and packed and started driving toward Salt Lake. Before we had left Ava's blood glucose was 11 by one account and 29 by another- either way extremely low in a way that would send a nurse running to the med room to get some sugar solultion for the IV. So on our way, part way to Blackfoot, I decided to call and make sure they got her sugar up appropriately. The nurse told me that the were running another Code on Ava- but this time they were actually doing CPR and compressions. 11:53pm Shaun turned around on one of those emergency vehicle only spots in the median and started heading back to Idaho Falls. I was shaking like a leaf. I called the highway patrol to see if we could get an escort back to the hospital. They said "no" and to drive the speed limit. yeah right. Shaun pulled up to the Er and IO sprinted back upstairs. He followed with Ivy. My dad met us at the hospital too. I watched them run the rest of the code with the life flight present. The attending told me that Ava was in no condition to fly, but that it was necessary to get to Utah. He said that she could cardiac arrest in flight, but that basically this was a risk we had to take in order to get to primary children's hospital. I spoke with the admitting physician in Salt Lake and she stressed the same thing. She said that Ava needed to get on ECMO as soon as possible. In the meantime the EIRMC attending was trying to place an arterial line to get an accurate blood pressure for Ava in flight. This was unsuccessful.   Because of Ava's risks, they let both Shaun and I fly with Ava and my dad drove Ivy to Salt Lake. We took an ambulance to the airport and a fixed wing to salt Lake. The flight was 50 minutes. In flight the RT had to manually bag Ava because she did better than on a ventilator. Then they added nitric oxide to the bag and she liked that better. They were able to keep her oxygen saturations in the 80's and 90's. She was getting milrinone and multiple doses of epinephrine to keep her heart beating hard enough to get that oxygenated blood throughout her body. Praise God she did not code in flight and the heavy doses of medicines were keeping her sustained, not stable, but sustained. At the SLC hangar Ava was immediately put in a helicopter because it could get to the hospital in about 5 minutes. They landed at primaries before shaun and I even got out of the bathroom. Shaun and I were taken by ambulance which is about 15-20 minutes. It was about 3am at this point.  In the PICU (pediatric intensive care unit) they were already prepping Ava for ECMO. There were multiple specialty doctors and fellows in her room. There were about 20 people working to get it done. The same doctor who did her heart surgery and her general surgeon who worked on her esophagus and another cardiology partner worked to place the tubes into her neck veins. Because of her anatomy and the heart "clamping" down he was only able to get 2 10 french tubes in, smaller than he would have liked. From here the blood is diverted from her body and oxygenated with a machine and sent back to her body. The problem was that her severe infection was causing "leaky" capillaries. All of the fluid in her blood stream was leaking into the surrounding tissue. In order to keep her blood pressure up they had to keep giving her fluid boluses. As a result Ava is edematous and is about twice the size of her usualy stuff. Her ostomy drained with loads of bloody fluid. She is very very very sick. Because the two 10 french tubes were not allowing them to correct her pressures appropriately they decided to place another tube in her femoral vein in her groin. This was not desirable because it would limit the draining and circulation of that leg.  They discovered that her lungs were filling with fluid. They decided that the pressures in the atrium in the heart were so high that they were causing blood to be backed up into the lungs. If it continued it would cause the blood capillaries in the lungs to essentially burst. Something had to be done. At this point a PICU doc and multiple cardiac docs took us into the "special" room and told us about the intense risks of taking Ava to the cath lab to try to correct the blood pressures in the heart and lungs. They said that she had a good chance of dying in the cath lab if we decided to go that way, but they were urging us to consider letting her pass away right now instead of having her undergo more interventions. Obviously we fell apart. They left us. We disagreed about what to do. We called Roger and he prayed with us and we all came to the conclusion that we were obligated to perform life saving procedures as long as they were an option and that any "dying" would take place on God's terms, not ours. If God wanted to take her in the cath lab that was up to Him. For the next few hours I repeated to myself that MY GOD IS BIGGER THAN THE CATH LAB. I know it sounds stupid- but it made sense to me. Those next hours were a struggle. We struggled knowing that our God can do anything, but the docs were telling us not to have high expectations. The waiting was intense. Roger and Jen Manwiller showed up. We were trying to pass time by forcing ourselves to eat in the cafeteria. I kept running into Ava's NICU nurses and cried and cried. Eventually it was completed. The cardiology cath lab doc showed me the pictures on her computer. AS IT turns out one of the tubes in her neck was in an incorrect location in her heart. It was an honest mistake. Ava has a pulmonary vein that returns to the wrong side of the heart and the end of this tube was in this vein rather than draining the right atrium like it was supposed to. The cath lab doc was able to thread her wire right next to the tube in her femoral vein and sort of lasso the tube coming from above and direct it to it's proper location. AMAZING! Praise God. This immediately helped to correct her blood pressures. The doc also created an incision between the right and left atrium to help relieve pressures there. THe right atrium was "50" and it should be about "6-8". They got the pressure down to 20. She returned from the cath lab to the PICU. AMAZING!       At about 7pm Roger and I went back to the PICU to check on her most recent lab draws. They were all slightly improved. This is good news, but by no means changes her critical condition. Her survival is really in God's hands. She has a LOT to work through at this point...the organs that didn't have much oxygen for hours and hours, than lungs, and perhaps the brain too. We just don't know what we are dealing with. The next 24 hours will offer more information.    We got a complimentary hotel night through the parent resources coordinator so we are finally here and Ivy is screaming so loud that people are knocking on the walls..so Shaun says I must go.  

Thank you for praying with us and for us on the hardest days of our lives. We don't know what the future holds but it is obviously out of our hands. I love my baby Ava. Lord thank you for giving me another day with her.

The pictures are nothing I would wish anyone to see. Shaun doesn't even want to go in Ava's room. I might post some of the flight or something later.

Thursday 10/31/13

 Sorry we haven't had many posts lately but we were getting all settled in after bringing Ava home!!! We have been so busy it has been difficult to find time to sleep and going to work and leaving Amber at home with our four kids has been rough on both of us. Poor Ivy has croup and Ava has little Ava problems that take up a large part of our days and nights. She is doing well though and we are all happy to be home. We still have a long road with several doctors appointments up and coming. 

Ava in her favorite sitting spot and Ivy with G.G.

More updates to come more regularly I promise. 

Friday 10/18/2013 G-tube surgery

Ava had a g-tube (gastrostomy "button") placed today. It is pretty close to her Colostomy site on her belly. They did the surgery laparoscopically through the belly button. They pull the stomach up to the wall of your skin and then stitch it to the wall. Then the hole goes from your skin all the way through to your stomach. So if she were to drink something...it would come out the hole. In the hole is placed a Mic key button. It is a port that stays in place for 3-6 months at a time. We change out the port at home. Then feeding tubing is connected to the port to be able to feed Ava. At first she will be on round the clock feeds. So, when we get home she will still be attached to a pump and an IV pole around the clock, but I am hoping that the feeds can be condensed within a month or so. 

She got out of surgery about 5pm. Ava was a little cold after anesthesia, which is normal, so nurses spent a few hours trying to warm her up. She has had 2 doses of morphine, but otherwise they are trying to control the pain with just tylenol. She will start getting 7mLs into the port at 6am tomorrow, then will go up by 7 every 6 hours until full continuous feeds are met. She's on a bit of oxygen after anesthesia and with the morphine.

I went in to visit Ava before surgery. She had pulled out her NG the night before, and since her feeds had been stopped for surgery, they didn't put it back in. THIS WAS THE FIRST TIME I HAVE SEEN HER FACE WITHOUT TUBES ATTACHED TO IT!    It took NINE, yes NINE attempts to get an IV before surgery. This made me very sad. I grilled the poor newbie training nurse about who was called to place it.  The night IV team tried. A floor nurse tried. Then they decided to wait for the day IV team, who also couldn't get it. Finally they called life flight who wheeled her into the hallway for better light and they got one in her head..which is the worst place for an IV because they go bad the fastest.   The anesthesiologist in surgery told me that the first thing he'd do was to get a new IV after she was knocked out. I told him about the 9 attempts and he told me not to worry-that she wouldn't feel a thing. When he returned her to the floor with the same IV in her head he said that his ego was bruised- I thought that was kind of funny. You KNOW Ava is a hard stick when an anesthesiologist can't even place an IV in her when she's knocked out. When the surgeon called me, she said that the surgery went really fast and that most of the time in the OR was spent trying to get a better IV. Ava was so happy this morning despite not being fed. She loved all the attention of people around her bed. It felt so wrong and like such a betrayal to send such a happy innocent baby off to pain-land...again.

Shaun and I completed the g-tube teaching course this afternoon which is a prerequisite for both parents before going home. They only offer the class on Tuesdays and Fridays and I did not want any more delays from discharge so we crammed it in though it meant not being able to see Ava right when she came back from surgery. Ivy got to come to the class and she was so good. We've already completed the colostomy care teaching. Tomorrow Shaun and I will complete as much of the discharge stuff as we can, including CPR, so there aren't any hang ups later when we are able to be discharged. If there aren't any surprises, we may be able to go home very soon. I am trying to figure out how to involve the boys with discharge and moving so that they are a part of the transition. As hard as it is here.....it will also be very hard to go home and BE home with a whole new life and set of challenges and to spend the winter in a kind of isolation from other people to protect Ava's lungs. 

This is Ava before surgery today. NO TUBES ON HER FACE! 

This one is after surgery when they were trying to warm her up.

tuesday 10/15/13

Neener neener neener. I discovered my tongue today. She waas sticking it out at everyone. It's amazing what babies can come up with when they're bored. It's good that her oral aversion is not nearly as bad as it could be. Her issues with eating are more with coordinating the suck/swallow/breathe effort rather than hating the bottle or the food or the texture or anything touching her mouth. 

had to put her in a play suit without feet for jammies because Ava is such a long baby, not abnormally long...just normal-long...which is long compared to other NICU babies. I asked if they'd like the gown type without the feet and the nurse said the feet ones were better. I've been using the gown type for Ivy since I hate stuffing her feet back in jammies and zipping her up when I am half asleep..doing half of it with my eyes shut anyway. 

monday 10/14/13

bath night.  If anyone has any 6-9 or 9-12 month jammies they'd like to donate to Primary Children's, they could use some. 

 

yes, she has dimples- It's freakin' cute!

friday 10/11/2013

Played with Ava with occupational therapy today. It was fun. Ava was a trooper. She started coughing a lot right when we started and she vomited quite a bit and she took a minute to recover. I hope the NJ  is pulled by the time I get there tomorrow. I think it will help the vomiting situation because only one little tube will be holding that sphincter open instead of 2.

  

 

yes, we are smiling in this photo. can't you tell?

 On other fronts: The 2 yr old daughter of a girl I've met in my Tuesday meetings got her heart today. They must have found out last night, because she was in surgery today for the transplant. I'm really happy for her. Another baby had to pass away for this to happen. 

Thursday 10/10/2013

New doc on today. We have a short term plan, finally, even more aggressive than I anticipated. Ava should be on full feeds by Saturday. So far she is tolerating the feed changes just fine. I thought she would. I am going to try and connect with the surgery fellow tomorrow to see what criteria he would like met in order to be able to schedule Ava for the g-tube surgery. I imagine he'll want her off oxygen, and for her cold symptoms to be improved. She is still pretty congested. She is in a good mood most of the time. She whines when she's bored, but other than that is happy all day. She slept the entire time I was visiting this afternoon, so I went back about bedtime and the nurses made an effort to keep her awake for me since I called to say I was coming. I got about 15 minutes of awake time, then she fell asleep in my arms. It was worth the drive for the 15 minutes.    The clonidine was weaned from every 8 hours to every 12. Her blood pressures are high again (I hate this med!). It has to be weaned super slow because of the affect on blood pressure. I think it was a really pointless drug to prescribe for a heart patient.    I was told today that the nurses no longer hear her heart murmur. I am wondering if she outgrew the second, smaller vsd/hole in her heart that wasn't repaired. I'm not sure. Cardiology was notified of the change. 

for my benefit:

nj 12  ng 17

0100 nj-10 ng-19

0700 nj-8  ng-21.       10/11/13. friday

1300 nj-6  ng-23

1900 nj-4  ng-25

0100 nj-2  ng-27

0700 nj-0.  ng-29    10/12/13.   saturday.  FULL Continuous NG feed!

  Ava is 12 pounds now.