Author Archives: daniel
Just had meeting w doctor, he wants to deliver in a couple hours (1ish?). He is confirming with neonatologist and cardiologist, then prepping equipment. Sounds probably today most likely, if not, I’ll repost.
Daniel: update Jan 18
This is my first post, hopefully it works.
We came in for routine monitoring yesterday at 1:30pm, and have been here since. Dr. Anzaldo is coming at about 9am to tell us if we’re getting a baby today, or wait here some more.
I’ve been staring all night at the most beautiful angel,she jus misses her mommy tho. I’m just beside myself, I can’t believe how many people have touched in with good words and prayer for us, which has so far been the best medication. Thanks big time.
Jane’s size: torso. About size of a pound of burger. Cute little head: a baseball. Legs: width of a carrot.
God has done a work in me more than I ever imagined.
“To him who by means of his power working in us is able to do so much more than we can ever ask for, or even think of: to God be the glory in the church and in Christ Jesus for all time, forever and ever! Amen. ” Eph 3:20
Good night. Father Daniel
one days old!
And trying so hard to kick. Doctors are trying to stabilize her. They’re using nitric oxide gas, I hear its really expensive (for insurance).
I had blood drawn in case Jane needs it.
I also got an amazing room next to the hospital at the ronald mcdonald house of charities, so we can be close to the baby and still be able to shower and rest. I’m a big fan of 1) CHOC and 2) Macdonalds.
Today was so hard and overflowing of heavy emotions. I’m sorry if I’m taking a while to get back to you if u called or texted me. Its overbearing to watch my baby struggle.
Lastly, vistors are welcome, just about any time. I have to be there per protocol. Please. Just give me a couple hours prior notice. Thanks.
possible blood / platlette donor
Must be CMV- ( title=”Cytomelogavirus” target=”_blank”>)
CHOC BLOOD DONOR CENTER.
Monday thru Fridny,
located at 505 S. Main St, Orange, CA
When you donate you will be able to find out your blood type and whether or not you are CMV Positive. Please make sure you tell the center this is a “directed donation for Jane Siapin.” Thank you for your continuous love and support.
It was so priceless, she was trying to open her eyes when I was up close talking to her today, but she just couldn’t quite muster up the strength. She definately remembers my voice from chatting with her when she was still in mama.
Thanks for the prayers and visits. I understand the meanining of grace is receiving something undeserved. God is the ultimate example of grace, in giving us eternal life despite us not deserving it. The graciousness you all have showed us is Godly. We don’t deserve it (especially a goofball like me), but are so extremely thankful for all of you and your love and support.
It’s 3am, and Jane’s dreaming of her papa right now. Now he’s about to go dreaming about his little girl.
Sabbath = Rest
Today has been a blessing, my little girl is alive, and we’ve had mostly an uneventful day. It’s been delightfully boring! Her O2 has been mostly steady, blood “gas” (pH, CO2, etc.) has been a little up, little down, but all-in-all, our hearts and emotions have been at ease. I’ve been getting overwhelmed with one painful minute after another for my baby– especially when I see her grimacing in pain, and can’t cry. So today, thank you God for hearing our prayers.
There is going to be a meeting with all the surgeons and cardiac specialists Wednesday to formulate a plan for the operation…a necessary evil that scares the begeezers out of me.
Little disclaimer, the specific numbers that we see and tell about are a focal point of a vastly bigger piture of Jane’s health. So, I try not to pay too much attention to little details.
Dr. Kukreja asked me tonight if I was doing my job by talking with Jane, and if I was praying with her, and of-course I told him yes. These brilliant doctors really believe that we are a big part of keeping our baby alive…
So much that she opened her eyes for the first time yesterday for mom, then off to you later for me when I was talking to her. this is really just killing me, I love her so much.
Someone gave me this when I was esparate for comfort, he was once in my shoes, “I sought the Lord’s help and he answered me; he set me free from all my terrors. Look towards him and shine with joy.” -Psalm 34: 4-5,15
On Thursday, there was a baby rushed in to the NICU with the grandmother trailing close behind full of tears, much like our scenario the day before with me following Jane and the doctors. As she was walking by, I said quietly, “Everything will be okay”. A bit later, I really felt like looking for to pray with her. I found her, and we prayed together.
Tonight, I went into the family room to finish the last of my coffee, and that same lady walked in and sat by me. She told me, that on Thursday when she walked by me, she glanced back when I told her everything’s gonna be okay, and she said she saw an angel behind me. I was blown away.
But then she said that a little while later, when she was sitting all alone in the family room, she asked the social service agent to bring up someone to pray with her, and nobody came. Then she started “begging” to God to bring her someone to comfort her and pray with her, and that’s when I came in. I asked her if I can pray with her, then I held her hands and put my arm around her and we just prayed with eyes full of tears and noses full of snots.
PS Jane’s platelet injection was received by her body, and her count is back up! What a day!!!!!
Jane’s Messy Diaper
I don’t know what the fuss is about messy diapers…
FYI this is messy diaper #2
This diaper is way too big on her
What is Ebstein’s Anomaly?
I added a new page at the top, next to “About Us” called “Jane’s Heart”, in case you want to know a little about Jane’s little heart.