Today is the day….we’re on our way!!
We welcome our darling Jane!!! (which means- “God is gracious”)She is 3lbs, 10oz. She is stable and the CHOC team is taking perfect care of her in the nicu.
13 For You formed my inward parts;
You covered me in my mother’s womb.
14 I will praise You, for I am fearfully andwonderfully made;[b]
Marvelous are Your works,
And that my soul knows very well.
Well, as things settle down and fall into place, here is a little update: Jane has been transferred to CHOC and the nicu team is taking perfect care of her. She will be in the hospital for several weeks while the doctors continue to monitor her heart and decide what should happen next and when. I have not been able to see her yet, but about 3 weeks ago I was given a doll to sleep with so that it would soak up my smell. Daniel says she is cuddling with it right now.
I am doing well, just slowly recovering and getting feeling back into my body. I will be in the hospital for at least 4 days. I’m so excited for the opportunity to eat, it’s been just about 24 hours since I’ve had anything to eat or drink…parenting has begun!
Lastly, I would like to thank ALL of you from the depths of my heart for the continued prayers, love, and support! From the very beginning of this journey (beginning on Nov 8, 2011) Daniel and I have witnessed God’s mercy, His unending & unconditional love, and His faithfulness- O how we would be lost without Him! If it weren’t for God and the huge family of believers He has blessed us with we never would have been able to bear this. Nonetheless, this has been an amazing journey, I’m thankful for all of it, and cannot wait for what’s to come.
Blessings to everyone!
Yet in all these things we are more than conquerors through Him who loved us. For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord. Romans 8:37-39
Well, another day has come and Jane is still in the nicu. At this point, she is not as stable as the docs would like to see, but they are doing ALL that they can. The overall goal is to stabilize her for several days before she has heart surgery, but that may change if they cant get her stable enough (I’ll leave those decisions up to the experts). The neonatologist, Dr. Kukreja, told us that they are doing all that they can and that me and Daniel need to make sure we do our part: talk to her, be by her, and pray with her. He told us that prayer is the BEST MEDICINE. The staff here at St. Joseph’s and CHOC are out of this world!!!
For those of you wanting to come and visit, you are more than welcome. Visiting hours for Jane are between 7:30am & 7pm. My visiting hours are between 8am & 8pm. If you come to my room first and I am not here I am most likely at CHOC. Either Daniel or I have to be with you to see the baby. Please know that if you come to visit we are very grateful, but will be limiting the amount of time to see Jane. She needs as much rest as she can get and the nurses highly suggest that she be untouched.
Please continue to pray for her health and well-being and for me and Daniel, as well. This is so much harder than I ever imagined.
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
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….
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!
This morning I read Psalms 23 to Jane…
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.