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.

Jane turned one month old yesterday! Happy Birthday cupcake!!!

Jane had 3 good days in a row…we are ecstatic! Our big goal right now is to fatten her up. Her liver numbers havent changed much, but we are still hoping that as she grows and/or gets healthier that they will start to trend downward. We are also working on getting Jane extubated (taking out her breathing tube). In order to do that Jane needs to exercise her lungs. It will be several more days until the tube comes out, but we are heading in a good direction.

I’m off to smother her… 🙂

I had a nice talk with the cardiologist this evening. Here are Jane’s updates:

1. From a cardiac perspective, Jane is doing very well. As she grows and develops she will need to be monitored closely to make sure that her systems are balanced and her heart is working efficiently, but she has come such a long way.

2. Her kidney function has normalized

3.From a respiratory perspective, she is doing great. She can handle being extubated over the next few days, but she uses a lot of energy to breathe and since the goal is to fatten her up we dont want to make her work too hard since she doesnt need to.

4. From a feeds perspective, we have been able to increase her calories and over this next week we are hoping to see some great weight gain if she continues to tolerate her food.

5. Her liver is now the major issue on the table. The good news is that it hasnt gotten worse over the past 4 days. We will continue to watch the function of her liver closely and hope that her bilirubin levels drop.

Jane has certainly come a long, long way! The Dr told me today she is glad that she hardly comes into Jane’s room anymore. That is a good sign….when the docs are in your room all the time that means you arent doing great. Over the last 6 days Jane has been a rockstar! We still have a long road ahead as she grows, learns to feed, more surgeries, etc….but the progress that has been made over this month is perfect. Like the doc said, Jane has really been the fighter- they have just supported her through it.

Praise God for His grace, His mercy, His love, His healing, His miracle…..!

Nothing is new with Jane today…we are just increasing her calories to fatten her up. Her liver numbers did drop by another 4 points. 🙂 Let’s keep this going…

Jane and I enjoyed some nice snuggle time this morning. It is such a new feeling to be told “YES” every time I want to hold her. 🙂

Morning rounds with the docs were pretty good. Her heart continues to look good and has moved to the back burner. The major issues on the table are her liver and the clot in her aorta. Although her liver numbers have made slight improvements it is still a huge concern for the docs. They are doing all they can with medication right now. As long as it doesnt get to a “dangerous” level then they will continue to just watch her. The ultrasound of her clot showed some abnormal blood flow. The Dr. told me he hadnt looked at the ultrasound himself, but as soon as he does he will get back to me— hoping its nothing major. The team will continue to make small changes to her ventilator until she is ready to come completely off of it. I think Jane might take the breathing tube out herself. Her new thing is to grab hold of the tube and pull. She is so cute!

For all you moms out there…dont you just love the sound of when your precious baby poops? LOL!! Jane makes the cutest poop noises; it sounds like a little, squeaky mouse 🙂 I totally have to admit that before Jane was born I wasnt sure how I was going to like the baby stages of her life. I thought it would be so boring and I wondered if she could just be born at about age 2. That has totally changed!!! I’m loving every minute of her…and who woulda thought you can just sit and stare at a baby for hours and never get bored!!

Well, it turns out that Jane won’t have the privilege of her mamas milk anymore. Her body is not able to absorb the fats and sugars from the milk because of her liver dysfunction. They are thinking this is why Jane has not been gaining weight. They are putting her on a formula that will hopefully help her to absorb the fats and sugars because it is pre-digested so it should make it a little easier on Janes system. In regards to her clot they will just continue to monitor it. The cardiologist is getting opinions from several other docs. Sometimes they see rare things like this with heart babies and most often turn out to be nothing. We will wait and see…

Well, as you may all have learned by now Jane likes to mix things up! She’s had a nice few days, but decided she needed more attention or something, I dunno??! Today she started a new episode of dropping her heart rate and oxygen saturation to lower numbers than normal. The docs dont know why. An ultrasound was done again to examine her aortic clot. They saw “communication” between her aorta and inferior vena cava that shouldnt be  there. The docs dont know why. The lab levels that mark kidney dysfunction have risen. The docs dont know why. She has really thick, bloody secretion when she is suctioned. The docs dont know why. What they do know is that the new formula they are trying to help her absorb fat seems to be working. Her stool sample that they sent for testing came back looking good.

Today I praised God for the last few days. I enjoyed the peace and calm while it lasted….looks like I’ll start preparing for the next storm.

Looks like Jane’s improvement has taken a wrong turn. All of her labs and body systems have taken a hit and are getting worse. It may be a sign of possible infection, but they dont know.

I use to think doctors knew everything, but given all of the unknowns they’ve proved me wrong.

Because Jane has had a few set backs it takes her a while to recover from them. She is managing and doing ok…not great, but just ok. She is a bit more swollen than usual and a lot more sleepy. The docs keep reminding us how sick she is so all of these set backs are part of the game. We had a conference with our attending doctor yesterday just to get on the same page and see where we are at. The good news is that Jane really isnt a heart patient anymore. Her surgery went well, she continues to recover great and her body has adapted  to her new physiology. This is HUGE given how sick she was and how severe her heart condition was. Praise God!!! Jane is truly a miracle!!! Her lungs are still a bit behind, but that is to be expected since she has been on a ventilator since birth. Just think of it like a training program…if you dont use it, you lose it. That is the case for Jane and her lungs. It will just take some time for her lungs to get stronger and when she is ready she will come off the ventilator. The bad news, though, is that Jane is now a liver patient. Every test possible is being run to try and figure what the problem is. In the meantime, Jane is being treated for an infection just to be on the safe side. Infections can go sour really fast…it’s best to be on the safe side with compromised babies… all babies, really.

Daniel is back home, well– back to our new home. He was gone for work for a few days and that was horrible in itself. I’m soooooooooo happy he is back and Jane missed her Papa!! It’s great to be together as a family 🙂 We’ve received some very encouraging words from many people over the course of this time and I have truly been uplifted. A HUGE THANK YOU!!

**Jane had a quick visit from her doctor from CHOC this morning. Apparently, he flies over every once in a while to check on his patients. That was pretty cool. She has not been forgotten about….and they are anticipating her arrival back at CHOC (but who knows when that will be).