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.

Today was quite an interesting day; it started off a bit rough, eased up during the day with a few angels who came to visit, and ended quite nice. Let’s begin…

Rounds with the doctors caused a bit of anxiety. After going down the line and discussing all of her body systems (as is protocol) we ended up with a “good pile” and a “bad pile”. Jane’s good pile is that her mitral regurgitation (the leakage from the left side of her heart) has improved over the last two echocardiograms, her kidneys are showing signs of recovery and improvements from the previous damage, she is tolerating feeds (with the exception of a few throw-up episodes, but nothing that cant be resolved), she is aware and moving which shows good sign of brain and neurological function, her blood work that is done daily shows a fair amount of stability as far as infection and other systems are concerned, and her respiratory system has shown improvement to the point that she is on minimal vent settings with the talk of extubating her when all is stable. Her “bad pile”is that her liver is not improving and they dont know what the problem is. The dr said she is very concerned and said that something needs to be done ASAP to figure out what the problem is before anything spirals out of control. The med team decided to involve the GI team to get their recommendations. We found out today that they have suggested a liver biopsy which is a surgical procedure that we arent thrilled about. But, it is almost guaranteed that they will be able to discover the problem by looking at the tissue of the liver. Because her liver is not functioning optimally she is at a higher risk of bleeding since her platelet levels are low, which is regulated by the liver. This is of concern because Jane has an RA (right atrium) line that they would like to take out, but she is at high risk to remove it because of the elevated pressure in the right side of her heart and the risk of bleeding after removing the line. Since her platelets are low, which help with clotting after bleeding, she may not be able to handle the removal. The liver issue that she is having is causing the numbers in her blood count to fluctuate, is causing her to have jaundice, and is continuing to cause build-up of sludge. Although her mitral valve regurgitation has improved it is still a concern that will need to be addressed at her next surgery if it does not improve with growth. Lastly, the girl just needs to grow. Nutrition has been on the back burner as we dealt with all of her issues, but now it is on the front line. To top it all off, yesterday and part of today she kept crying and lay there helplessly. AHHH–that feeling of not being able to do anything for her stung me.

As we moved forward in the day, we enjoyed a nice lunch with more people who came to visit. Someone once told me that visitors are like angels and I do believe it! We cleared our minds as we all went out and got soaked in the rain. When we came back I was pleased to see that our nurse had swaddled Jane and gave her a pacifier. I didnt even know she could have a pacifier with a breathing tube in, but apparently she can and she likes it. What a relief!! To see her sleeping calmly put me at ease. To end the day, we had another visitor who reassured me that Jane was getting the care she needs. I was starting to feel uneasy about all of the “I dont knows” that I keep hearing all the time.

With time and patience….I guess.

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.

I know EVERYONE has been in continuous prayer for us and Jane but I would like to ask all of you to join us in a very specific prayer for Janes liver biopsy tomorrow. She is a very high risk patient because 1) she is so small 2) her liver is not producing clotting factors that she needs to recover from bleeding 3) she can’t be overloaded with blood and platelets to help with bleeding and clotting because of the shunt in her heart.

Please pray for minimal bleeding during the biopsy, that the drs find the perfect balance of giving blood products, if needed, without risking clotting in her shunt and that her vitals stay perfectly stable so that the anesthesiologists can keep her comfortable. Oddly enough I feel like this procedure is much more life threatening than her heart surgery and it certainly can have drastic effects. At this point, I’m not sure there are many other options than to find a way correct her liver…

Please join us on your knees

The biopsy has been cancelled. I just had a strong feeling that we shouldnt do the biopsy. The benefit did not seem to outweigh the risk and I couldnt seem to find a peace in this all. I prayed all day, all night and all this morning for God to miraculously intervene. I couldnt go through with the procedure unless everyone was on board and fully committed…and that just wasnt the case. The team of surgeons met this morning and all agreed that the procedure was much too risky. After all teams met- cardiac team, surgeons, and GI- not one of them completely felt that this was the best thing to do.

WHAT A RELIEF! (and thanking God for His intervention)

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!

Still praising God that we didnt go through with that liver biopsy…

Jane is continuing to make headway. Her RA (right atrium) line was removed successfully. She didnt have any bleeding and they will double check that with an echocardiogram while they take a look at the condition of her heart. They also removed a line that was draining fluid from her abdomen. The doctors are working to get Jane off of TPN (the pre-digested, pharmacy made nutrition) and completely on breast milk today. Tomorrow they will begin to transition her off one of her cardiac medications that is given by IV and start her on a medication that is given by mouth (something she could potentially go home on or transfer back to CHOC on). The doctor said that if those 2 moves go smoothly then they will begin to wean her off her ventilator with the possibility of extubating (removing the breathing tube) her by this weekend. All of that sounds fabulous….however, our dear little Jane doesnt seem to cooperate like we want her to so I always expect their talk of “a few days” to be more like “several days”. BUT- I have not given up on her and am NOT about to. For all I know she will throw us another curve ball and surprise us all!! 🙂

HIGHLIGHTS: We do get to hold her today as soon as they know she is stable from the line removal. I’ve decided to let Daniel hold her first since I held her already, but I am so tempted to pull the “mom” card and snatch her up before him. I wont, I wont–that would be so unfair. I will just sit there waiting impatiently and anxiously for my turn!! 🙂

The results from Jane’s echocardiogram came back looking good. Her heart function continues to improve and her mitral valve regurgitation has decreased a bit more. The team went ahead and tried an experimental dose of the cardiac medication to be given by mouth and we had a little episode where her blood pressure and oxygen saturation plummeted. That was good and bad. They know that it is effective and they also know that they can shut off the IV cardiac med. but because of her little episode we didn’t get to hold her. We will re-evaluate a little later…

Her liver numbers continue to hold their high number but over the past 3 days they have not increased. She will continue to be monitored closely.

More visitors today and lots of good food sent our way. THANK YOU!!!

Jane’s liver numbers dropped by 5 points. Wahoo!!!!!

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.