Today is a new day! Jane is still very unstable. Her oxygen saturation is all over the place and her blood flow to the lungs is lacking. The doctors are continuing to run tests to try and get a “big” picture of what is going on with her, in addition to her heart defect. On a very good note her urine output finally increased; she actually has too much urine now. This is a good sign that her kidneys are functioning properly so we checked that off the list!

The doctors have decided to move Jane to a new unit, the cardiovascular intensive care unit (cvicu). The nicu is overloaded with babies so they need to do some adjustments. This is actually a good thing because Jane will have her own private room. We all feel this will be beneficial because she is so sensitive to all the stimuli: touch, noise, etc. She may look like a spitting image of her Papa, but no doubt she inherited my feistiness! She doesn’t like to be touched or bothered….that’s one of the reasons her O2 sats keep jumping all over. I am hoping this move to a private room is beneficial for her.

Just a reminder, visitors are welcome but please remember to remain quiet at her bedside, not to touch her, and to wash your hands before coming near.

Blessings to you all as you pour out your love and support to me and Daniel.

There is a very high chance that Jane will need some sort of blood transfusion- blood, platelets, or both.

Jane’s blood type it B+.

If you would like to donate please call the CHOC Blood Bank. They will answer any questions about whether you are a suitable match for her or need any other special requirements. Make sure that you let them know you are inquiring about Jane Siapin.

CHOC Blood Bank, 505 South Main Street, Orange CA                Hours: monday-friday.  Phone: 714.532.8339 **specify for Jane siapin when donating

Thank you!

We will not be moving to a new unit, BUT we are getting a private room. YAY!!

As we come to an end on the third day we are both exhausted, yet filled with peace. After our move to a private room today Jane had a MUCH better day. She was able to rest and get away from all the distraction and unnecessary stimuli. She stayed calm most of the day and her oxygen saturation was very stable. (her O2 sats are just one of the critical numbers we watch closely) Jane visited all day long with all the people who came to see her and surprisingly she held up her strength, although being the Mom I had to step in once in a while to remind people that her new “suite” is a hands off and whispering only room.

Daniel and I were reminded today of Christ’s promise that we don’t have to do this alone, nor will He let us walk this alone. We have continued to witness His truth and love over and over again. I think I’ve pretty much cried all day just reading the beautiful words that you all have shared! We both have been so uplifted!! Although this is her first great day (and can’t be expected everyday) we are holding on to the moment and praying that we start to see more positive trends. ***even healthy babies face a HUGE transition period from utero to the “real” world–Jane justs gets to start off running a marathon without having trained for it. At this point, I still have not been allowed to hold her but I ask everyday in hopes that sooner or later I will get a YES!! I’m dying for that moment….

Anyhow- a few notes about visiting hours. Visitors are only allowed between 7:30am & 7pm. Please try your best to stay within those times. The nurses require their privacy during shift change and they need time to evaluate and assess Jane. We want to keep our nurses on our good side and keep the glares away. Occasionally, they will allow visitors between 8 & 9pm, but ALL visitors must be gone by 9.

Peace and blessings to you all….

Xoxo

Jane has started off with a good day again. She is calm and resting. Her oxygen saturation continues to be stable overall, even though she has a few dips here and there. After rounding with the cardiologist this morning she told the staff that they don’t need to be so eager to ween her off of the oxygen they are giving her. She said it is normal for babies like Jane to have high pressure in the lungs and we want to slowly help reduce the pressure by giving oxygen rather than ween her completely.Lets see if I can explain this so it makes sense— all of us breathe in 21% of oxygen from the atmosphere. That is normal. Because Jane has problems with her lungs she is on a ventilator that helps her to breathe and she is given oxygen as a medicine; she is given more when she needs it and less if she can tolerate breathing normal air. There have been times that she was breathing 21% oxygen, which is great because that means she is able to breathe normal air like you and I. Other times she has been on 100% oxygen.  So, the cardiologist was just letting us know that although weaning her down to 21% is ideal, it is perfectly ok if she is given a higher concentration for the time being.  Not sure that any of that makes sense without going into all the whole medical explanation with you.

Other than that, her heart rate, blood pressure and respiratory rate all look pretty good. Her blood tests came back looking good with the exception of her platelets so they will be transfusing platelets today. The nurse just finished doing “cares” on Jane and she was a ROCK STAR!!! (cares: suctioning, changing her diaper, taking her blood pressure and temp). She is getting a good stretch now and relaxing! Still no talk of surgery or feeding her food yet. If she continues this positive trend then they will re-evaluate in a few days.

On a different note, I saw the light of day for the first time today since Tuesday. I had no idea it was cold and rainy outside, or was it sunny? I forget… Haha!

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!!!!!

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

This morning I read Psalms 23 to Jane…

Psalm 23

A Psalm of David.

¹ The LORD is my shepherd;
I shall not want.
² He makes me to lie down in green pastures;
He leads me beside the still waters.
³ He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.

⁴ Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

⁵ You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
⁶ Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell^[a] in the house of the LORD forever.

We just finished rounding with the docs for the night and have a clear picture of Janes status for the day. Sometimes there are so many people in her room and so many procedures going on that we get lost in the shuffle of things. Here it goes: Jane has not had any great improvements today, however she has not back tracked either. Her oxygen sats continue to stay steady with a few “spells” throughout the day. The spells, as they call them, are periods when the oxygen saturation in Jane’s body decreases. It usually takes about an hour or two for her to fully recover. Her spells have drastically decreased, though, from a few days ago. Currently, Jane is on 2 medications that are helping to reduce the workload of her heart. One of the meds reduces the pressure in her lungs while the other reduces the pressure throughout her body. The neonatologist told us that there is a very delicate balance between these two medications but the goal is to reduce the workload of her heart so that it can begin to work more efficiently. Jane was also given her first blood transfusion today because her RBC count came back low. Blood was given so that her heart could be more efficient at oxygenating the body. Every time a healthy individual gives blood it takes several weeks to replenish blood that is made in the bone marrow. This is also the case with Jane but the docs don’t want to risk having to wait for her to make more blood or put more stress on the heart to supply more oxygen to the body. (the reason Jane is losing blood, per se, is because of the daily labs that they do. Might as well replenish!)

Scary things of the day: 1) the nurses were trying to place an IV so they could give her blood. They poked her 3 times and failed; 2 of those times were in her poor little head. I just stood by as I watched them stick a needle in her head, yuck! 2) The unit wanted to move her to another unit again today because the nicu is full. Daniel and I sort of threw a fit… I mean, what next? Are they going to put her in the lobby when that unit gets full?? They decided to keep her put!

Best parts of the day: 1) I got to change her diaper THREE times and take her temp. It was a dream come true!! Ok- I know, I know..,it’s only a diaper but I’ll take that any day!! 2) Jane tried so hard to open her eyes to look at Papa. He was right there talking to her and she just couldn’t quite muzzle up the strength. It’s hard for her since she is so tired all the time. 3) Daniel found out he is a perfect match for her blood!!!!!! B+, CMV- (but we’ll still take a few more donors) 4) Jane had more visitors today and had a great time with them all. Her great uncle Sam told her she needs to get up and go to work already. And that my friends, is the Kosareff in them all!! Haha

I still long to hold her in my arms, but we’re taking one day at a time. Thank you again from the very bottom of our hearts for your prayers, love and support in ALL the different ways yous are showing it. Sorry if we are not responding to all our messages, texts, voicemails, emails.., we are receiving them with TEARS!!!

***i must say my anatomy and physiology education sure is coming in handy. 🙂

I leave these words with yous all as words of a blessing:

³¹ “When the Son of Man comes in His glory, and all the holy angels with Him, then He will sit on the throne of His glory.³² All the nations will be gathered before Him, and He will separate them one from another, as a shepherd divides his sheep from the goats. ³³ And He will set the sheep on His right hand, but the goats on the left. ³⁴ Then the King will say to those on His right hand, ‘Come, you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world:³⁵ for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in; ³⁶ was naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me.’ ³⁷ “Then the righteous will answer Him, saying, ‘Lord, when did we see You hungry and feeyou or thirsty and give You drink? ³⁸ When did we see You a stranger and take you in, or naked and clothe you?³⁹ Or when did we see You sick, or in prison, and come to You?’ ⁴⁰ And the King will answer and say to them, ‘Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.’