For starters we couldnt have asked for a better doctor here at CHOC. Dr. Cleary is on top of his game. He is no BS kind of guy—precise, focused, informative, careful, exact…definitely a Godsend at this point of time. He is so precise that he was making sure the nurses are drawing their blood gases consistently. Drawing blood gases is something nurses do second nature, but he is so exact that he wants to make sure all draws are exact so that they dont treat something based on the wrong lab numbers.

After rounds this morning it was decided that we will continue to make forward steps as Jane allows. Yesterday Jane was put on NO (nitric oxide), a gas that decreases the resistance in the lungs. She was at 80ppm (parts per million)—a dose that the nurse and respiratory therapist have NEVER seen before all their time working here. The nurse said that when she gave report to the night nurse on Jane and told her she was on NO of 80 the nurse questioned her and said, Did I hear you correctly, 80??? Since then we have been able to come down to 20ppm which is the normal therapeutic dose used. So far Jane is tolerating the move. Her chest xray this morning shows a very small improvement in her lungs from yesterdays xray. Overall, there arent very big plans for today. Jane is so critical that any big move can cause her to fall in either direction so the team may make a wean on her life support and then give her several hours to see if she tolerates it. Slow……………..and…………….. steady…………..

The overall consensus this morning is that they dont know what the exact issue is with Jane. They arent even 100% sure that it is an infection causing her to have major lung issues now. What they DO know is that Jane has a very critical and rare heart condition. All of her other complications are made worse because she has such a sensitive heart. If a healthy baby had an infection in her lungs they would start antibiotics and most likely see improvements in the next 24-48 hours. Not the case with Jane…it takes much longer. If a healthy baby has liver disease they would treat it and see improvement quickly….not the case with Jane. In addition to all of her complications she has this underlying heart condition that adds to the mystery and severity.

We have not lost hope….she is the STRONGEST baby I know.

Jane is taking the smallest baby steps ever, but they are baby steps, and they are going forward. Things are extremely unstable, any tiny decline in her health will be catastrophic. The support she is on is not maxed out (which can be toxic) but significantly higher than some of the staff have seen in live babies.

She did pee a tiny bit today and more thIs evening, so that’s good news that her kidneys have turned back on a little bit. Also, we did see some slight movement throughout her body. That indicates neural activity (probably no brain damage).

She’s very sick and swollen and bleeding internally, so she’s nowhere close to being healthy.

But she will not die, she will live that we may proclaim the great works of the Lord.

I noticed Jane’s lungs less and less efficient over te last several hours. They had slight decreases in oxygen saturation in the blood. The doctor obliged to an x-ray, and found that Jane has a re-collapsed lung caused by extremely high ventilator pressure going into her lungs to keep her alive the last 48 hours . The air was too much for the lung, and started leaking into her chest. He decided to get that air out immediately, so he poked a hole in her chest and was able to get some of the air out. But to get it all out, he inserted a chest tube to suck it out. Not a safe procedure for a baby that can’t clot. BUT thank God her clotting ability spiked earlier tonight, and the procedure was a breeze.

Now hopefully I can finally go collapse for a couple hours before the day gets started.

Jane Daniel Siapin

Fought the good fight for 7 weeks.

Grew tired and is now with our Lord.

Funeral Services                                                                                                          Viewing: Monday, March 12-beginning at 4pm.                                                                New Romanovsky Church, 14647 Broadway, Whittier CA 90604                                  Burial: Tuesday, March 13 at 1pm                                                                              “Slauson Cemetery”, 7201 E. Slauson Ave., City of Commerce 90040.

We have some thoughts and questions and things that we just want to put on paper (or computer) for our own benefit. For me and myself, I’ve been having tons of thoughts, and some that I just want to put on this page, for me.

I’ll be gathering them and will post something this weekend

plus we’ll add a picture of our angel Jane!

I suppose that the pain of missing Jane only gets deeper. Our home is too quiet, especially since we were soooo excited about having a house full of Jane’s noises.

It’s totally helpful that I have a really good imagination, and can still smell Jane’s scent in my mind.

Mark 11:24 plainly says, “Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.” We asked for Jane so many times. I really am having a hard time making sense out of that, missing her…

I’ve been told several times that eventually we’ll “just move on”. That makes my blood boil. What I decided instead that makes the most sense to me is “just keep going”.

UPDATE: The second I posted this, I heard someone I respect greatly say, “there are some things in life that you will never get thru with just prayer.” Then, “God will not take away your problems immediately.” I suppose this means something to me.

After we buried Jane a wise woman told me and Daniel that burying Jane was the easy part….the worse was yet to come. Our first response was, “Wait….really? How can it get any harder??” Well, she couldnt have been more RIGHT! It seems like each day we sink lower and lower and the only thing that has kept us from burying ourselves are the emails, text messages, phone calls, cards, visitors….those dropping by just to chat, drop off food, clean my house, get me out bed, sing to us…whatever it may be. One of the best feelings I have experienced so far is the afternoon after we buried Jane. A handful of friends and family came to our house to pray with us and as they sang the last song to finish up the prayer our house was filled with rejoiceful singing, calling out to our Lord and praising him. I wasnt in a “rejoiceful” mood, but I felt as if the singing was lifting me up and keeping me from crumbling to the ground. I just stood there aching but at the same time allowing the words and the spirit to cradle me. At a time of complete confusion and feeling completely lost I’m relying on God (and only God) to carry me through. I’ve realized that for the first time in my life I have NO IDEA what to do, how to be, whats to come…clueless. My life is 100% changed and I’m nervous and scared of what will come of it. Will I wake up in 6 months and find myself still lying in bed all day or will I have answers from God and resting in His peace? I’ve been encouraged to do whatever it is that I need to do to mourn, grieve and move forward in life. That is what I have decided to do. I dont know what that is going to look like, I have no road map or formula to plug in for an answer, but I’m taking each day and each emotion as it comes and embracing it. Many, many people have recommended that Daniel and I take some time to get away and re-connect. In fact a very dear couple has offered to send us away where ever we wish to go. For those of you who know me, traveling is one of my favorite things, but this time its not the same. Daniel and I dreamed of taking our next trip with Jane and showing her God’s land and all of His creation. As nervous as I am, I think it is going to be really positive for us. I’ve spent the last few months with Daniel by my side, but our focus has been only Jane. All we have talked about are TPN, heart defects, what the blood gas readings were….medical stuff.

Daniel and I are continuing on this journey of “life” and will begin to create and experience a new normal as parents. Although Jane is not with us physically, we will continue to walk the Good walk, to seek the Lord in all we do as if she were here watching us and looking up to us as her Mama and Papa. Jane will forever be our daughter…and I am still so proud to be the mother of a perfect child.

Naturally, after the passing of Jane, my mind has been running non stop with questions, battling with what has happened, and constantly reminding myself that God’s plan never returns void (Romans 8:28). I was also reminded of the story in Daniel where Shadrach, Meshach, and Abednego were tested but in the end they proclaimed that no matter what the outcome was they would never bow down to the gods and idols, they would only worship and give glory to the one true God (Daniel 3:16-18).

So, as I ponder these truths and work them in my mind over and over again I still feel the deepest pain imagineable with Jane not being here by my side. I dream about life with her, how wonderful it was, and how peaceful I felt. Life with Jane was simpler. I realized what was important and how many things didn’t even matter. I mean, Daniel and I took cold showers for a month in Stanford because the water never got hot. We asked them to fix it, but it never happened. I wore the same 3 pants and shirts over and over. Now I’m not saying we all haven’t been there. In fact I’m sure all mothers and fathers can vouch for the sacrifices they make for their children- ours weren’t any greater…my point that I’m coming to is that we all make sacrifices and I just finally realized that my life was so much better when I started focusing on the Lord; that a life for Christ is so much more fulfilling. Paul writes in Romans 12: I beseech you therefore, brethren, by the mercies of God, that you present your bodies a living sacrifice, holy, acceptable to God, which is your reasonable service.² And do not be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God.

With the Passover approaching I cant help but think about God sacrificing His own Son and me having to give up Jane to the Lord. In no way am I comparing the sacrifices because giving up Jane doesnt even come close….God willingly sacrificed His son and, quite frankly, I would never have willingly gave up Jane. What I do know, though, is that God willingly gave up His son for me, to gift me with salvation and because of this I cant help but fall on the Lord and know that He loves me so much and will not forsake me. So now, Lord, I ask that if you would only take away a part of this pain that pierces my heart I would be grateful.

I read this Psalm to Jane very often….

I waited patiently for the Lord;
And He inclined to me,
And heard my cry.
² He also brought me up out of a horrible pit,
Out of the miry clay,
And set my feet upon a rock,
And established my steps.
³ He has put a new song in my mouth—
Praise to our God;
Many will see it and fear,
And will trust in the Lord.

Well, here we are in the Promised Land… and our troubles are still with us. Many people told us to enjoy ourselves on our trip and for some crazy reason I thought we would get away and actually enjoy ourselves, that being away from “it” all would be the ticket away from pain. Well, I couldn’t have been more wrong. Grieving is grieving no matter where you are!!! Nonetheless, we are trying very hard to just be and soak up the culture and take-in the experience before us.

So far we haven’t seen much. We wandered through the old city and wailed at the western wall. We went to the Holy Sepulchre Church where, supposedly is the place, Christ was crucified. I’ve formed a few opinions so far and they may change over time, but so far I don’t get the whole thing about people feeling Gods presence here… More than other places in the world. I’m not taking away from the fact that this is REAL stuff and it’s the Bible land… It’s just that so far all of the holy sites have been turned into shrines and I just don’t get it. It doesn’t remind me of our Shepherd, Jesus Christ. But, again, that’s just my opinion and anyone can disagree.

Anyhow, it’s tough being on this trip but we are powering through and hoping something good comes from it. Our prayer is that God makes us feel like His beloved children, that He reminds us that He loves us and will not forsake us. Of course we know what the scriptures say, but we want to “feel” it. ***on a side note, and I’m just throwing this out there for anyone who may still read our blog- Please don’t feel the need to apologize if you bring tears to our eyes when talking with us. We cry on our own in private, in public and in talking with others. Honestly, it is relieving and feels good!!! So, in all love, don’t apologize and please don’t tell us not to cry. (just putting that out there)