1 Week Old

Happy bday Evon (bro-in-law)

Jane has 2 lines in her belly button, 1) food line, 2) blood pressure monitor. They become less reliable as time goes on; risk of infection increases after about one week. A PICC Line (Peripherally Inserted Central Catheter) is an alternative line to bring food to her. It is a small tube that is inserted either in the wrist or above the knee, then runs inside veins all the way to the heart. (Note: depending on what’s going thru the tube, some fluids need their own specific tube, to prevent clotting; i.e. blood transfusions, PGE medication, predigested food liquids, etc.)

They’ve been talking about putting a Picc line in for the last few days. This morning they made 3 attempts to put the Picc in, but were unsuccessful because veins in heart defect babies sometimes can be a bit difficult/different. Also, the insertion points were flat shaped veins.

On attempt #4, it finally worked. Below is a piece of the tube that was inserted.

Jane's PICC Line

Jane pretty much had a stable day, which is not a great thing, but definately not bad.

HUGE NEWS: Our doctors are going to have a pow-wow meeting with a panel of doctors, cardiologists, and surgeons tomorrow. The intent is to do some mega brainstorming. The resident and fellow doctors will present Jane and her condition to the panel, where there will be a bunch of different opinions on whether to perform surgery, wait a week, install a balloon, catheterization, try different medications, change doses of current medications, etc. The decision will ultimately be left up to the few great doctors that are responsible for her progress, who have been caring for her since day one.

I went all the way out to Whittier today, to the dentist, for a look at my toothache. I thought for sure I was going to need my wisdom teeth taken out right away (which I do eventually, so let me know if anyone has a good place). Turns out it’s a canker sore, and she told me it was caused by stress, and I can expect more to come. Wonderful. But atleast she said its not contageous.

Elisabeth & me: today was rough emotionally. It’s just hard and wearing down. Its so hard to see my innocent newborn with dozens of tubes and cables, and hooked up to machines. I did get good words from people that have been in my shoes, and that’s one of the few things that really comforts me, even when they tell me, that when I can’t handle more pain, more pain will come.

This passage was sent to me, and its exactly how I feel.

” 23 Awake, Lord! Why do you sleep? 
   Rouse yourself! Do not reject us forever. 
24 Why do you hide your face 
   and forget our misery and oppression?
 25 We are brought down to the dust; 
   our bodies cling to the ground. 
26 Rise up and help us; 
   rescue us because of your unfailing love.”

Ps 44

January 25

Jane’s condition continues to be slow and steady (like the tortoise and the hare-the tortoise wins the race…) The doctors have started to discuss weaning Jane off some of the medications she is on. This will be a VERY slow process to see how she begins to react to various stimuli and if she will hold up on her own. So far so good, although they have only begun and the changes have been minimal. We will begin to see changes (good or bad) when the weaning is significant enough. We still havent heard anything from the team of doctors that met today to discuss Jane’s condition. It is likely that no definite plans were made since we are still early in the game and there is much they want to see happen before talk of surgery. The meeting was more of a brainstorming session for all the big shots to throw around their ideas and fight over whos idea is best. 🙂

Tonight we have the best nurse….she called Jane her baby away from home. 🙂 She recommended that we set up our own conference with the surgeons and cardiac team to discuss our options. She said she feels that after a week of having no plan she fully supports us meeting with the team to get some idea of what their thoughts are. Are they looking for certain numbers or specific changes to occur, are they still considering surgery or have they taken that off the table?? We have no idea! It’s been nothing but a waiting game and although Jane is worth every minute…it would be settling to hear something concrete. So, for the time being, we continue to wait and enjoy every moment with her despite sitting at the hospital. I asked our nurse tonight how long we can anticipate being here and she couldnt say for sure but she did say that we have a long road ahead of us. She also gave me a different way to look at it; she said whether or not we were able to take Jane home right away I would be sitting at home for several weeks anyway so instead of sitting at home I am sitting at the hospital and giving myself the time I need to recover from my own surgery. That was a fresh way to look at it because I know if I was at home I would totally be over doing myself and forget that I just had a major surgery!

Daniel and I continue to be over joyed with the support we are receiving. Jane is loved by so many people; she is so lucky!! (and I am blessed to have a daughter who has made such an impact on people’s lives after only a week of being born- already she has changed me for the better).

A New Day

Much hasnt changed from yesterday. Jane continues to show signs of stability as her medication is weaned (and replaced with other meds). Oh yeah, so heres a funny one…Jane is taking Viagra!!!! I had to laugh when the nurse told me what it was. Oh this girl, experiencing so much at such a young age! LOL!

I had a nice, long discussion with Beverly, the nurse in charge today. I asked her why they havent done surgery and what EXACTLY it is that the Drs are looking for. She said overall they are hoping and waiting for more forward blood flow through the pulmonary artery to the lungs. All the med changes, oxygen adjustments, nutrition changes, etc. are constantly being manipulated to try and increase that flow and allow Jane, on her own, to do this. IF, I repeat, IF that happens then we can try and avoid surgery all together or for a great length of time until she is older. That is why it has been a waiting game. My next question was- how long will we be here? She looked at me sincerely and said probably at least until Easter or longer…and my heart dropped. But then she reminded me that Jane is mine forever, we have a long road ahead of living in the medical world, and we need to do all that we can now. So, I picked my heart back up and decided it was time to prepare myself mentally. She said she hopes I can laugh in her face when she is proven wrong, but we need to be realisitic. The next big question was when can I hold her?? She told me probably next week sometime we can re-evaluate and look into making that happen for me. She realizes how important it is to me to hold her, but as they wean her from her medications she needs to prove her stability. Beverly said that people with heart failure can plummet at anytime so we want to be sure that she candle handle the move before taking the risk.

Daniel and I continue to enjoy each and every moment with her…one day at a time.

***Beverly told us that Jane’s case has been sent to Stanford for a second opinion.

Prayer

This was written and sent to me. Please pray this for us. I need it.

Prayer for Siapins

Lord, let your mercy come down from the heavens like rain, and touch Daniel, Elisabeth and Jane. Do not let them continue in this grievous situation, but save them from this. Save them from this tragedy, save them from this misery. Grant them deliverance in this hour. Lord, forgive us of our sins and allow us to shine with your love and your glory. Let us be radiant with joy and gladness. Send your Holy Spirit to strengthen us, lift up our eyes so we do not despair, enliven our souls so we do not fall, bring us up off the ground so that we do not grieve. Send a healing spirit to work on Jane and give her whole being strength and power. Work on all of her organs so they promote her health in all ways. Strengthen her lungs, each little tube and sac, each artery and vein, so they can work more efficiently. Heal her heart, every artery and vein, every flap and chamber, so that it pumps blood properly, and let it be that she does not need the surgery. Lord, you are our healer. Heal Jane’s heart and lungs so they work perfectly. Fortify every cell in her body with your Holy Spirit that she may be rejuvenated. Let your presence be with her completely and let your healing come downs like rays of sunshine to warm her, strengthen her and enliven her. Guide the doctors in all of their thoughts and feelings, through all of their discussions and meetings. Let your wisdom guide them through everything they do for Jane. Give Daniel & Elisabeth an understanding of what needs to be done so they can be in agreement with the doctors and make the correct decisions. Give them an understanding of your plan, so that they turn away fear, and live in hope. Lord, hear them in their grief, guard them with your Holy name, the God of Jacob, the Eternal Creator, the All-Powerful, the Almighty, send them help from your sanctuary, surround them with our people, Zion itself. Send them people to support them and encourage them in this time. Remember all of their prayers, all of their sacrifices, all of their offerings. Give unto them unto their hearts desire, and make their plans succeed. We praise you for the deliverance you give, and we lift up your banner, the name of our God, in front of all people, and we proclaim your power, your might and your glory. Lord save us in this hour.

Our Unfailing God

Well….if I can be so honest to say that these last few days I have been dwindling down and feeling so broken, so weak. It definitely didnt help when the staff began to wean Jane off of one her meds and it failed because she was not ready for it. I was sooooo hoping that all of these steps would continue to lead in a positive direction. So, as I walked through the NICU doors this morning with my head hung low I ran into our social worker, Dana. She stopped me to ask how I was doing…she noticed the look I had on my face and said, “I will be in your room shortly.” After a nice chat with her and taking a few moments to breathe, I soon realized that God has not let me down and is not about to. TODAY he sent me Dana to listen to me and allow me to freely express my concerns.  I also saw today that many of your prayers have been for renewed strength and peace. God couldnt have timed it more perfectly!

As for Jane, she is just hanging out. The first weaning wasnt successful, but the respiratory therapist said that is ok. They will try again. The cardiologist reminded me that every baby is different; for some it only takes one time and for others it takes 3 weeks to reduce pulmonary pressure (which is what the weaning process is all about). He also told us that they are still waiting to hear back from Stanford about their opionion. Apparently, Stanford has a little more experience working with smaller babies that have Ebsteins. Either way, we are in good hands.

Date night

Today was a hard day for us emotionally.  There was a bunch of unsuccessful weaning of medications, as Jane responded with higher heart rate, as well as dismal blood measurements.  Blood is qualified using a test called “blood-gas”, measuring the pH, Carbon dioxide, and 4 other numbers.  They draw blood approximately 4 times per day for “blood-gas” tests.  This is the reason right now for her current blood transfusions, because she can’t produce blood as fast as they’re drawing it from her.

The nurse tonight had to remove one of Jane’s intravenous lines, which was run in her belly-button, 14 cm up towards her heart.  The line began failing, so they decided to remove it rather than risk infection.  The line came out without breaking ,which would have been a big problem.  Thank God for that little plus for the day.

However, the problem with this is that the respiratory therapist needs to draw Jane’s blood 4-6 times per day for “blood gas”, and now that she doesn’t have the UA line, they need to get it with a needle. I hate watching it.

Umbilical artery line

I was talking with cardiologists this morning about their ideas of a possible surgery, which they still want to wait and watch for a couple weeks.  One of the possible procedures they are considering for Jane would need to be done by a heart surgeon specialist, that specializes in this specific surgery.  This means CHOC would be putting us on a medical plane up to Stanford for this specialized surgery.  This was just a thought brought up, we just HOPE it doesn’t happen.  we really want to avoid/postpone surgery as long as possible.

One of the doctors paid me and Jane a visit privately, giving me much needed reassurance, and letting me know that they are trying their hardest.  Apparently we are giving them reassurance and are making their job easier just by showing we care so so so much about Jane.

We were able to go out on a friday-night date, and it was a wonderful breather, just to get out, and try to take a brake from this mental drain. It was so hard leaving Jane though. And my mom got to babysit Jane for the first time.

In other news, today is Mark Beliakoff’s 29th birthday.  Happy bday and congrats on a huge engagement.