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!

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 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!

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!!??

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

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.

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)

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!!!