So Jane’s R side of heart isn’t being used; surgeons took it out of use the other day. Her L side is doing all the work. Now, there are complications with that.

The thing is, surgery was successful, but everything afterwards has been a complete mess.

So they’re talking about getting Jane on dialysis to reduce her swelling. In the meantime, they’re going to try different diuretics and test out some blood products to jump start those kidneys.

Friday Update

Jane’s peeing, finally. I think I cried when they told us.

So we came to San Francisco for a few hours today, just to get out of the hospital.

Thanks everyone for generosity, support, and prayers. We’re in a unique place in life that we get to see and experience this overwhelming love (seriously!).

New Week

Sorry for not updating sooner; we had a rough couple days. Jane’s health has been mostly stable, a couple steps back and a couple steps forward. Today’s update will be a bit long, since we took a couple days off, and there’s plenty of new stuff.

Request: “Pediatric Cardiology for Dummies” doesn’t exist. If someone knows of a book like that, please let me know.

Jane’s health: she’s still very swollen, but her urine output is better, which is incredible news for us. Doctors and nurses are really ecstatic about that, and kinda make fun of themselves for getting excited about pee. But if they’re happy, then so are we.

Physiologically, Jane’s body is under more stress with more fluid buildup. If she’s edemic (swollen), then her heart has to pump harder, which she can’t be doing right now, cuz she just had heart surgery a few days ago. Her body is trying to get used to operating on half of a heart. Our hearts have 2 ventricles, or pumps, that push blood throughout the body, and Jane’s right ventricle is not being used. Other side effects of her edema are poor liver and kidney function, which just make edema worse. Edema also causes the heart work harder. So you see how important it is to get rid of that fluid. They have her on diuretics to help with that, so it looks like things are getting better, very very slowly.

Liz and I had the best day of our life this last week, when Jane was a little less swollen, heart working good, and she was opening her eyes for us, as well as moving her hands and feet slightly. Although that was such a therapeutic day for us, she hasn’t opened her eyes since, and has been more sedate. The doctors found that she wasn’t ready to handle the cognitive stresses of a new heart, so they induced her with sedation and relaxant to keep her more calm and have a bit more control over her vitals. But I can tell Jane does get a little perked up when she hears her mama’s voice and feels her touch.

They were giving her 1ml per hour of breast milk over the weekend (about the size of a small marble), but stopped it yesterday because of her tachycardia (raised heart rate), and they didn’t want to have extra “stuff” in her body in case of an emergency. BUT, at rounds this morning, the doctor decided to continue the breast milk. It’s such a tiny dose, and its fed thru a tube in her nose, but hey, it gets us excited.

Big news: doctors have been watching the flow thru Jane’s plumbing very closely since surgery, and found in her heart that there is some back-flow (blood going the wrong way) in her solo left ventricle. They decided that its one of two things, maybe both: 1) excessive blood volume going thru her ventricle with some naturally leaking backwards thru her mitral valve, which may correct itself as the heart gets comfortable, 2) the first surgery may have caused the geometry of her valve to change just enough that it isn’t closing properly. We hope it’s only #1, but if it’s #2, that means probable surgery, very soon. They like to correct heart problems before they see any more indications of heart failure.

To end on a good note, our new room at Ronald MacDonald House is very nice. For all you Sprinkles Cupcake lovers, we’re so close that we have a perfect view of Sprinkles right out our window across the street. Jealous?

Lastly, we had a couple visits, phone calls, emails, and texts that really did a number on me. Some of you will never know how uplifting you can really be (sorry if I don’t respond). I’m blown away by your constant concern and praying for us, lifting me up out of the gutter.


We’re having a tough time emotionally.

Then the doctors said they are going to take tests on Janes problematic liver. To mae it brief, there are 3 outcomes from these tests:

1) put her on medications to help get liver going
2) remove possible obstruction (cyst) from side of liver, if it exists
3) liver transplant

They’ll find out within the next several days. Awaiting results on today’s liver ultrasound that will give us some preliminary info.

She has my eyes

And she’s up and holding my finger today. Its the hardest thing leaving her while she’s awake!

Liver tests indicate probably that her liver is getting better. So they are starting her on meds for hepatic function and will take more tests on Friday. One is called something like radioactive nuclide bioliquid, to watch it move through her liver. Its probably some kind of weird glowing blob.

Also, the machine regulating her body temperature has been causing her some problems with elevated temperature and heart rate. So they took her of that machine, and just covered her with a blanket and put a beenie on her head. So far she’s maintaining her own temp after one hour off the machine one step forward.

One day at a time, right?

Jane’s in Jail

Not quite, but it feels like it, cuz she’s in an incubator. So now I can’t kiss her and smell her (she smells like heaven).

Also, she hasn’t peed since this morning, so more problems with that.

This is NOT fun.

Big Scare!

Rachel came by this afternoon to visit and bring us some soup. Then we were paid a visit by some scary dudes. I thought they came to devour my baby. Turns out, “Raider Jerry” & “Black Jack Sparrow” (guessed his name) were nice guys that wanted to stop in and give us some good encouragement.

Go Raiders!
Raider Visit

New Numbers Update

My webmaster gave me Jane’s website traffic statistics for February up to today. They are as follows:

Unique (new) visitors: 1355
Number of visitors (total computers that accessed Jane’s blog): 4963
Pages (I don’t know what this means): 17822
Hits (amount of times brought up by everyone): 44365

I’m so completely astonished at this; concern and support for our little 4 lb angel is mind-boggling. So many people have supported us way more than we deserve. Thanks so much, really from the bottom of my heart. We are a blessed and fortunate family.

Interestingly, Jane’s update has been checked on 555 times from Japan, I don’t know anyone from there!?

And out of 44365 visits, not a single one is from my little dork brother or Elisabeth’s goofy brother. Go figure.

Now some news for Jane:
There are several proteins and chemicals that the doctors measure in Jane’s liver, most which have been improving. There was one that’s been giving us a lot of worry. And til today, that prtein, which is usually pooped or peed out, has been elevating. Bad. Overnight tests show that protein hasn’t increased, but just stayed the same from yesterday. So hopefully we can see those numbers plateau and decrease, indicating improvements in her little liver.

Jane’s kidneys are damaged from the back-up of fluids last week after heart surgery, but haveen recuperating ince, and for the most part are working okay, for now. She’s been on diuretics to help her kidneys to make pee, and the doctors have stopped that for right now because she’s been able to pee enough without that support. They’ll start back up if needed.

Jane’s getting some delicious breast-milk right now. Its only 15% of what she actually needs, but they don’t want to give her gut too much work, cuz that takes lots of blood to digest food, and she just isn’t ready for that, yet. They’re giving her teeny increases, and will hopefully be at 100% breastmilk nutrition in a week or so. In the meantime, they’re supplimenting her nutrition with an intraveneous liquid food as she’s able to take it on.

Her heart is recovering from surgery still, but it is getting better. The doctors have been talking about doing a corrective surgery in her shunt, but that’s still in debate. Hopefully nothing is necessary until her next surgery in a few months.

Today Jane was awake for 20 minutes here and there, doing some silent crying (cuz the tubes are going thru her vocal cords). It totally breaks our heart to see that. On top of that, Jane was gagging for a while cuz our careless nurse tugged on Jane’s mouth tube without paying attention. I wanted to shout at her–needless to say she isn’t going to be assigned to Jane anymore.

Happy Valentine’s Day :(

When we arrived to Jane’s room at the hospital this morning, we came in to Jane’s room full of somber faces. I was looking for a smile, but we soon found out why there weren’t going to be any, and all of our high spirits disappeared real fast.

Jane’s liver has been of big concern over the last week, with a couple days of hope in the middle showing improvement in overnight liver measurements, and possibly liver correction. The doctors have determined those slight improvements are insignificant in the overall outlook. I’ll describe it simply: there is a protein in our bodies that goes through the liver then gets pooped out. Jane’s liver is blocking that protein, and it’s becoming dangerous. The doctors have been leaning towards her liver problem being congenital (developed before birth) the last day or so, and considering a liver biopsy to figure out what the heck’s going on, cuz she’s showing progression of liver failure. Today, they decided that the problem IS congenital, and she DOES need a biopsy. They’re getting it ready today, and biopsy is coming tomorrow.

A biopsy means they open her up and cut out a tiny piece of liver, no big deal, cuz livers have the ability to regenerate tissue. BUT Jane doesn’t make things simple; a result of her liver problem is her blood isn’t able to clot very well, so there’s a HUGE risk of her bleeding out–alot. During the operation, they will of-course have blood transfusions ready. I asked the doctors to quantify the possible amount bleeding. He said, “a life threatening amount”, which is why there weren’t any smiles today.

To add to her high risk of heart failure, add liver failure, and that means God’s little lamb is FAR from healthy.

Roller Coaster Ride

Now that the biopsy today has been cancelled, I can’t describe just how relieved I feel. Yesterday I felt like a zombie walking around in anticipation of today’s procedure, and I wasn’t able to sleep last night, because the biopsy was such of an extreme risk. It was such a painful day that we looked for God everywhere, and saw, felt, heard nothing. And cried the entire time on our valentine’s date. We never were much for Valentine’s Day, but we just needed a break and get away for a couple hours.

Yesterday, the doctors & nurses were all extremely nervous for Jane, but all felt strongly that the biopsy was necessary. And for as “gung-ho” as they were about doing it last night, they were that much AGAINST doing it today. They decided it probably won’t complicate things to wait on the biopsy, so they said let’s just wait and see. Totally frustrating, but at least it’s not a life-threatening operation.

So Elisabeth & I are trying to gather our emotions after being beaten to a pulp, especially over the last couple days. This roller coaster of emotions is really taking its toll. Yesterday was the darkest day of my life, and today was a day of indescribable relief. Seems like this has happened at least twice already in a bit smaller magnitude. God certainly does have something special in His wonderful plans.

The focus is still on the liver, so the overall plan is: 1) wait and see if liver function can improve, 2) send liver genetic tests to Cincinnati, 3) hopefully wait a month or more for biopsy, 4) increase breast milk consumption, 5) work on strengthening her lungs to take out breathing tube–then go from there. Realistically, we’re getting comfortable up here.

Final news for the day: There is a line in Jane’s chest going directly in to her heart. Doctors aren’t letting us hold her, because if this line falls out, it means bad news. She doesn’t really need that line any more, so the doctors are going to do a small procedure around 7am Thursday to take the line out. Long story–short. I might get to hold her by her 1 month birthday. Woohoo!