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.

Liver

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?

February 8th

Today Jane got off of her last cardiac medication and seems to be doing well (She was on cardiac meds to help with the function and efficiency of her heart). The idea that the doctors discontinued the meds means that she is progressing and her heart is healing and beginning to function on its own. Her heart rate has come down to a reasonable rate (140′s) as they have continued to pull more fluid out of her body. The doctors are happy with her decreased heart rate because that also means that her heart has more time to fill with blood and send out to the body; its all about having an efficient pumping system with her “new and improved” plumbing system. A new PICC line was placed today in her left arm and the PICC team was successful. Normally, this type of procedure is fairly easy, but with Jane it’s a challenge. She is so tiny and her veins are hard to come by, but it went well. Her foley was removed today, yeah!! Now she gets to pee and poop right into her diapers, which means more work for me. I love it! Jane is continuing her feeds, MBM they call it–Mothers Breast Milk and she is digesting it and pooping so we know her digestive system is working :) Hopefully over the next few days we will see great improvements with her liver since her new medication was started today to give it a boost. Those seem to be the latest and greatest updates with Jane.

Daniel and I have really been enjoying our play time with her. We love when she is awake and sometimes try and wake her up when she is asleep. ( I know, I know…she needs her rest, but…. :) I love when she sticks out her tongue and yawns!

Morning Rounds

Todays rounds with the medical team was short and sweet. They want to keep Jane nice and comfortable and not make very many changes with her. There is talk of placing her in an incubator because she has some issues regulating her temperature because she is so small. When she is too hot or too cold her homeostasis is thrown off, which sends her blood pressure and heart rate on a roller coaster. I’m reminded of all our body systems, how they work together perfectly, and how I go about my day not even having to think about it…but sweet Jane is much too fragile right now and still needs some help regulating all of the fine details. Her liver has not shown much improvement so they are starting her back on a cardiac med to help with circulation and prevent any more backup to her liver. The doc said it will be interesting to see what her liver ultrasound looks like tomorrow. Personally, I wouldnt call it “interesting”….but thats just me. I was curious why they placed another PICC line yesterday since she isnt on enough meds to need two lines. The doc told me they want to remove another line that is near her heart and once they do that (hopefully tomorrow) then she can be in our arms. If thats the case, I thought, put as many PICC lines as you want!!! In the next day or so hopefully her Papa can hold her and squeeze her, too. :)

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.

Falling Backwards

Jane did not have one of her best days….

1. She was put into an incubator to avoid ALL stimuli and workload on the body, they want   her completely relaxed

2. She is back on the paralytic drug so no more opening of the eyes or moving around (She wont be able to show us anymore if she is in pain because she wont be able to move…or squeeze our hand or stick out her tongue or yawn…)

3. She is back on her cardiac meds

4. Her lactate levels -a number they look at when doing a blood gas- are high (that is a bad thing).

5. She is swollen all over again, her poor little eye looks like she has a huge, swollen black eye

6. Her foley catheter was put back in her (and it took 3 times for them to do it successfully. She kept squeezing my finger when they would poke at her and couldnt get it in)

***Something is not right and the docs dont even know what it is. They started her on a new med to make her pee and thankfully that has started to work this evening. She hadnt peed all day and then about 6:30pm she started making urine. Hopefully, that helps out all of this mess…WHAT A DAY!

Our little flower

I had a really hard time dealing with the fact that the doctors put Jane in the incubator yesterday because it took away my freedom to touch her, kiss her, and talk to her….the caring and love she needs to receive from her parents. But then this morning Dr. Shin explained to me that they are trying to create the perfect environment for her free from added stimuli and any additional work that she has to do on her own (i.e. regulating temperature). Then it dawned on me, OH- we are just growing our own delicate little flower in her own little greenhouse and of course we want the best conditions….the perfect amount of light, the perfect soil conditions, just enough humidity….to bloom and flourish.

After morning rounds we all learned what the issue was with Jane yesterday. Apparently, her lungs are getting much better, which is a great thing, but it took a huge toll on her body. Although that in itself is good, it becomes a problem because naturally as the lungs heal more blood gets delivered to her lungs and that is where the issue starts. When too much blood gets shunted to the lungs then less blood gets profused to her body. When less blood gets to her body then her organs start to shut down. That is why she stopped peeing because her kidneys stopped working and her liver has not improved. Her feeds (MBM) were stopped because less blood was flowing to the gut. The “good” led to a domino effect of other problems. She became agitated which increased her heart rate, which increased her blood pressure, which made her heart start working harder and the list goes on. Of course the big question is-what do we do about that? Dr. Shin said there are 2 things to do: 1) She just needs to grow so that her body can handle what it needs to, as she heals and gets bigger her body will adjust on its own 2) Her shunt is a little larger than what her heart needs and so they may need to go back in and reduce the size of the shunt. It is normal for the surgeon to make the shunt a tad bit bigger so that it buys her a little more time until the next surgery and also because it is easier to reduce the size of a shunt rather than to remove it and replace in case it is too big. Over the next few days she will be watched to see how she responds. It is very likely that she will have several rough days ahead of her since these set backs really throw her for a loop and it takes her little body A LOT of time to recover. They will watch to see how she adjusts as her lungs heal and how her heart responds to the new demands. It is clear now why she was put back on her cardiac meds to reduce the workload of her heart. The Dr. said the meds act like a spotter to someone who is lifting weights. When you have a spotter helping you lift a very heavy weight it takes a lot of the pressure and workload off of  your body; the meds do that for her heart while it is healing. Today Jane is trying to recover from yesterday. Her vitals are still all over the place, but I guess that is to be expected. The medical team is doing all that they can to stabilize her again.

She has been blessed with more visitors today :) Hmmm, I wonder–will all of these friends of hers follow her to Spain when we move there? Haha, JUST JOKING!!??

 

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

Movin & Grovin

Jane has been wide awake today- sticking out her tongue, wiggling her fingers and toes and gazing up at her mama, papa, and all her visitors. If their is one thing that brings joy to our day it is that…the “real-ness” of our little baby girl. For a moment we can over look all the tubes coming out of her body and all the beeps surrounding us and just watch her move!

It seems today that Jane is recovering well from her last few days. Her heart rate and pressures have stabilized. Her liver has not shown signs of improvement so the team is really digging hard to find out what the issue is. Her kidneys are making a come back, but still need time to heal. Jane has started her feeds again, aka MBM, and hopefully this time she can stay on them for a while. She is borderline malnourished because the goal was to keep her fluid volume negative so she has to be monitored very closely as to how much volume she can receive throughout the day. (volume= all the fluid she receives like meds, nutrition, etc.) I know I have said this over and over, but Jane is just very delicate so we are always trying to find the perfect balance for her. The goal is to get her to a point that she is only on MBM and  then add additional nutrition to her milk. We need this girly to grow so that her body can handle the demands of her “new” heart and recovering lungs.

AGAIN, we just want to say THANK YOU to EVERYONE who is helping us in ALL of the various ways yous are all reaching out. As I read your blog comments, your cards, open your gifts, eat your food, read your emails and texts, listen to your voicemails and hear your messages passed on by family and friends I am always humbled and brought to tears. I can’t handle all that Jane is going through, but I also can’t handle how much support we are receiving from all over the world. We are thankful beyond words…!! My sincere prayer is that God showers you all with blessings tenfold