Like Elisabeth said, Jane’s elevated protein in her liver went down 5, from 47 to 42. The highest anyone here has seen (other than the old liver specialist dude) is 36. They want her to be at 5.

Also, once again, they said we get to hold Jane today, which I feel is gonna finally come true. She’s still gonna be plugged into the machines, so I’ll just have to park it close to her bed. Fine with me.

When Elisabeth held her, it was for about 20 minutes before Jane started destabilizing. We’ll see how strong she is this time.

Btw I’m so excited for this. this will really give me some good cheer and encouragement that I’ve been lacking.

I swept Jane up into my arms, cradling and staring at her for an hour-and-a-half. It was bliss. I would have held her longer, but Elisabeth was getting anxious to hold her. All of her vital signs were perfect the entire time.

After a month of crying and praying over her, giving her my finger to grasp with her hand, I finally got to hold her.

There are so many things connected to Jane to monitor her or dose her, all to keep her alive. Now let’s start getting these things off so that we can twirl her around.

Jane hasn’t changed much from yesterday, she’s looking about the same. I can get into details, but tomorrow wil be a little more enlightening.

This place is just so scary. Some things that we see here are just so heart-breaking to see. I hate to see broken parents with the worst fear you can imagine, as they watch the staff work frantically to save babies’s lives. These doctors and nurses need guidance from God, and these babies just need mountains of prayers.

Our church is on a 3-day fast, and it hurts that we can’t be there, cuz I was so excited to come together with everyone under God humbly to pray. Just pray. There are specific things to ask of Him naturally. But to 1) thank Him, and 2) be all in one mind and then 3) petition to God is so amazing.

Yes, there are miracles that happen here. But also there are babies that don’t make it, and mothers that are in dire need of supernatural comfort. Let’s not forget them.

I was gone this week for work. I put in as much time as possible so that I can come back to my girls and be with them for as long as possible before I have to go back again. I was planning on coming back Thursday night, but several complications (which I’ll describe) got worse, so I just got on the next plane available.

1. Jane the heart patient is doing great, as far as her heart is concerned. If she didn’t have any other complications, we’d be back at CHOC long ago, and talking about possibly bringing her home before her next surgery.

2. We talked about her kidney has normalized, but things have gotten a bit worse since the docs told us that everything’s perfect with her kidney. She was on a medication that was harmful to her kidney, so they had to stop that, and are looking for an alternative. We’re not too worried about her kidneys, but we know not to take anything for granted, cuz that can change really quickly.

3. From a respiratory perspective, doctors decided her lungs aren’t as strong as they thought they were. So as they were weaning down on her breathing support, her L lung collapsed, and now they are spending time on getting that better. They just realized Jane still has at-least a few weeks before they’re going to talk about taking her breathing tube out. So for the immediate future, they have her on pretty strong breathing support, and are really playing a big balancing game between her oxygen levels and blood quality.

4. From a feeds perspective, wow. She’s a mess. This runs hand-in-hand with her liver problem. They had to take her off feeds (baby formula) because she’s not metabolizing proteins, and it’s building up ammonia in her blood–fasting. Her other liver problem of not processing and removing bilirubin doesn’t harm the body, just indicates liver dysfunction. High ammonia, on the other hand, is very dangerous to her body, brain in particular. It can cause sleepiness, tremors (which got pretty bad yesterday), confusion, brain damage, coma, and ….so let’s just hope her ammonia can get in check. Her feeds are a risk/rewards situation. As it is, food is causing her liver problems. But her liver isn’t processing her feeds. In the end, the doctors just said that her liver is a HUGH QUESTION MARK.

So we just had to ask if we are we running out of options. We’ve asked this before when we feel like she’s getting worse, and they’ve told us before confidently that there’s still so much we can do. When we asked this same question this time, the doctor paused, and said, there’s still some more we can do. That was a far cry from their confident responses before.

On a good note, Jane’s health has improved big-time since I came back. She really missed her papa, seriously. No joke, I came back, and there are tiny little improvements. YAY!!

On another note, regarding transport back to CHOC from Stanford, our insurance considers it “elective” transportation, which is not covered. And at $68,000 that’s a steep price for a plane ride. BUT good news, the director of the insurance company approved it, if/when they decide to move her back. They aren’t even considering moving back until Jane is legitimately stable. My guess is 3 weeks at best.

I’m just glad to be back home.

On my way out to the car, look who parked right next to me!

Please pray tons. Janes looking into the light.

At 4pm I woke up to some nervous faces, a few nurses were in Jane’s room working frantically. A few nurses turned into a dozen doctors & nurses very fast, and we were soon at rock-bottom, with Jane at rock-bottom.

A few minutes prior (while I was sleeping), Elisabeth was watching the nurse suction out Jane’s mouth and reposition Jane’s cute little swollen little 4lb body, which helps getting rid of the fluids. Swelling in infants is bad. What happened next nobody will ever know, but the doctors believe that 1) Jane’s breathing tube got slightly removed, or 2) Jane’s breathing tube got plugged by something, maybe secretion.

Since Jane is extremely sensitive, any little problem can turn catastrophic. We got to watch Jane’s heart rate drop, then drop more, and more, and more, until it couldn’t drop any more–she had no pulse. Jane’s heart stopped pumping. Elisabeth looked at me and said, “that’s it”.

With Elisabeth in my arms, I reminded her that Jane is our miracle baby; God has more in His plans for our baby.

We were both numb from it all, our emotions can only take so much. We’ve experienced horrible events like this several times over the past 5 weeks, but never THIS BAD. We both stood there in awe, not believing what was happening, we weren’t even crying. Just 1 week ago I watched and listened to a crying mother slowly lose her son in the room next door to us– deja-vu.

Shortly after, her heart again started to beat on its own, while the doctors kept with the CPR and manually injected oxygen into her lungs. Her heart rate hovered in the low 20’s for about 20 minutes. They weren’t able to get her heart rate up, no matter what they tried. By Epinephrine (adrenaline) dose #5, there’s just no reason to think that a 6th dose will get her heart beating faster. For babies, if by 2 or so doses the heart hasn’t responded, any more doses have historically shown to not be of any more benefit. The head doctor told us she’s probably not going to recover. So we’re still just as numb as can be. Elisabeth just asked him to get back to work, don’t give up. He came to the point twice just asking out loud, “Does anybody have any ideas?!” Shortly after his 2nd plea, the doctor told us to bring in our family and say our last good-byes to Jane. We didn’t know what to think. “Not now” is all we knew. Since she did have a pulse, though small, we felt encouraged that it can possibly go up. So we asked him if he’s sure she won’t recover. He said he’s sure. I said 100% sure? Then he clearly stated, “I’m 100% sure that she will not recover from this, her heart hasn’t responded to the “epi”, and it won’t now.” And he mentioned that he doesn’t want to keep doing CPR and make her suffer more from the constant compressions. We decided to tell him to not to worry about us, and just get back to work.

Not 2 minutes passed, and her heart rate went up to 27, then back to 23, and bounced back and forth. Then it went all the way up to 35, then 37, 45, and stayed around there. We were getting excited, still scared as can be, because Jane can’t sustain life at 45 bpm, needing CPR forever. Then it went to 50, 70, 90, and hung around the 90’s for a few minutes.

Elisabeth prayed with Luba earlier today, telling God that today is the day for a miracle. She had no idea that she was speaking the truth.

100, 120, and comfortably at 130 the rest of the day, a normal rate for infants.

Jane decided that she wasn’t ready to die.

There’s more details, but I’m done thinking for the night. Over the next 48 hours, the main concern is to reduce possibility of brain damage as a result of today’s event. They’re also very concerned with her other organs, since she went so long with very little blood throughout her body, assuming that for-sure there IS damage, they just need time to see the extent. We disagree with them.

Without getting in to too much details today because we’re so exhausted, we do give glory to God, for coming through in the last minute. Sometimes He seems like a procrastinator.

Elisabeth has been doing most of the posts lately, since I’ve been spending most of my computer time doing work stuff. I’m glad to be doing an update this morning.

We had our weekly meeting yesterday afternoon with the head cardiologist, very caring and informative guy, actually a stellar guy. Along with our surgeon, he is a transplant from the world’s best pediatric cardiology center, Boston Children’s Hospital. We have an incredible staff.

There were several issues that we talked about with the cardiologist. The main points are what we’ve basically been concerned about over the last week or two:

1) her liver is still a HUGE question mark, they don’t know how well it will function when put to the test. Two weeks ago when they really gave her liver some work to do, fats and sugars from mama’s breast milk were too complex and difficult to metabolize, so Jane just pooped them out without gettin any nutrition from the milk. They put an end to that real quick, and gave her a formula alternative. One day when they try out mama’s milk again, how will it perform? That’s part of the huge question. In the meantime, she’s on feeds that are actually making her liver worse! But bad food is better than no food. Nonetheless, her nutrition is of utmost importance right now. Lower down on her list are liver and kidney function. So they are goin to keep feedin her and will suffer the consequences later.

2) Jane has passed the big test of heart surgery. They’re reasonably encouraged at her ability to adapt to her new plumbing inside. Her other organs are still recovering from that trauma though. Ultimately, the big concern right now is for the machines she’s hooked up to; technology just isn’t flawless. Jane has had 3-4 episodes this week, all associated with the her breathing tube. If only she can get rid of that dang tube, she’d be so much more comfortable. We naturally cough as a response to the junk in our windpipe (trachea), and because of the tube, Jane doesn’t have that luxury. So the respiratory therapists have to go in and suck out all the secretions, and boy does she HATE it. When they go in to suction her, her heart rate drops, pressure rises, and oxygen saturation drops. Liz and I have similar symptoms when we watch it. Now, if they took out her breathing tube, she wouldn’t be able to breathe, because her lungs aren’t quite strong enough. So her breathing tube is a necessary evil right now. Every night we pray for her lungs to improve so that we can get that breathing tube out– kinda for her benefit, but mostly so that we can see her face hiding behind all that tape and tubing. We’ve only seen her face twice. And man, it’s breathtaking. Cosmo is asking to get her on the cover.

I’m going to pat myself on the back right now. The nurses were ready to give Jane some morphine to calm her down, because they wanted to do some work on her (clean lines, change diaper, check IVs, etc). I said wait 5 minutes, I’ll calm her down, then you can go in and do your thing slowly and quietly. All work is done, and she’s happy, staring at her mama right now.

Tomorrow is the big day for Jane’s hubby, we’ll definitely be there with them (in spirit) as they dedicate their baby to God.

Jane had a huge event over the last couple days: she’s been boring. So mama and papa have had the best day yesterday in a month. The doctor told us in rounds today that it’s an event when Jane’s uneventful. This is our little sigh of relief. Not to say that everything is a breeze now, she’s in the ICU cuz she needs to be. BUT she’s alive, somewhat stable, and so ADORABLE! The nurse agreed with us that even her x-rays are cute, with her tiny little bones, stubby little shoulders, and no neck!

Jane from a clinical standpoint can be very misleading. She’s stable right now, but we were told the other day that she’s still at high-risk for another cardiac arrest and many other complications, and she will be at risk for quite some time. Right now, though, she’s a trooper.

Her liver and kidneys are both question marks, with the former a big concern. They have been improving this week, after thought that they may have been severely damaged from lack of blood on Saturday. Post-code, her numbers have improved–until TPN. TPN is her main food source this week, fed intravenous to bypass her gut. This food actually progresses her liver damage. Not a good thing, but Jane still needs to get fed somehow. Her gut suffered the most damage from Saturday’s event; blood naturally knows which organs are most important. For example, her brain is more important than her intestines. So doctors were worried she can’t digest food. A couple days ago, they introduced a tiny amount of predigested formula to see if she can take it, with hopes she can eventually get off TPN completely. That went okay, Jane’s digesting the food, and they’ve been slightly increasing her formula feeds. Tomorrow the doctors think they can take Jane off TPN completely. Next step is to get her fat, and slowly introduce her to mama’s breast milk. First time around with mbm didn’t work so good; Jane wasn’t able to digest the fats and sugars.

Respiration is another concern, as her breathing tube seems like a huge risk, but she needs it until her lungs are strong enough to breathe on her own. Doctors started giving her caffeine, so that when they have to clean out her tube, she can keep her heart rate from dropping like it has been. That is working wonders, she just loves caffeine. They hope to be able to start weaning down on her respirator this week, but that’s still undetermined.

I’m about to get on the road right now on my way back to orange county. Assuming that there won’t be any complications between now and noon, the girls will be getting on an ambulance jet. CHOC has a bed waiting for Jane.

UPDATE 2pm girls are on way to airport!