Christmas Thoughts

As we get ready to travel to the states to be with my family for Christmas, I am filled with equal parts of joy and sadness. I am very excited, blessed to be able to celebrate the birth of Christ with my family, but am extremely sad and often mad that Taylor will not be making this trip with us. She is still on my mind every hour of every day- the past week or so has been brutal. I was not prepared in the least for the feelings that resurfaced around her birthday. Holding on to Jesus, my husband, and my family has kept me going. I am choosing to be joyous and remember the reason for the season, Jesus.

A music teacher's work load more than doubles during the Christmas season... I am thankful to God for placing me in a Christian school where I was able to keep busy by telling others through song His story. The elementary Christmas programs were on Taylor's birthday. A few of my students knew it was a rough day for me. Children often hit the nail on the head without even realizing it- they were such a comfort to me. My chorus students made me cards and told me they were singing in memory of Taylor. Needless to say I cried like a baby; it touched my heart. That the children could pick up on the fact that I was sad when I was trying so hard to hide it was a blessing in disguise. The Lord used my students to minister to me in a way no one else had been able to.

I don't claim to know much about heaven, but I do know my precious baby girl is there and in no pain- for that I am thankful. I love you baby girl, always and forever; keep resting in His arms.

One year on...

Taylor would have been one year old today. For the last 2 to 3 days, events that happened around this time last year kept flashing in my mind. I would remember the time I got the phone call; how KM pretended to be the husband of A so that she wouldn't need to be alone in the ward; how I saw Taylor for the first time.

When I saw Taylor for the first time... She was crying. She was wrapped in a plastic clear wrap. Much like this baby. All I could do was try to sooth her. "Don't Cry... It's Okay... Daddy's here." I've never felt so helpless. There she was, my daughter, and there was nothing I could do to save her.

Ever since Taylor left this world... there's been a kind of numbness in us. We manifest this numbness rather differently.

p.s. I miss you so so very much Taylor. How long more do I have to wait?

What would you look like?

A young baby? A young woman? Or an old woman? Someday soon.

Anytime, Anywhere

I have been reading old posts and thinking about this time last year... when our world came crashing down around us. Rebuilding that world has been difficult and is still a daily process. What I can tell you is that God is able and willing to meet us anytime, anywhere. He sees to my needs even before I know that I have a need. What a blessing it is to know and serve Him. I thank Him for taking care of my precious purple princess. The Lord in His infinite mercy opened a door for me at an International Christian school here in Singapore. While I was hesitant to open up to the kids at first, my heart is fully committed now. The Lord has given me back my joy for singing and teaching- I missed it and am blessed daily for following His will. I still struggle, K does as well, but life moves on whether we want it to or not. We will be going home for Christmas- I am looking forward to it more than I can express. It will be an emotional time as my family will finally be able to "love" on me since Taylor passed away. I am awaiting the day when we will all be together in heaven- what a day that will be.

A baby and an unexpected box

Since the passing of our daughter Taylor Marie in late January, I have been hesitant to be near baby girls. I never quite know what my reaction is going to be- sometimes I cry, sometimes I feel like I'm breaking into pieces, sometimes I'm angry, sometimes I am just sad... I found myself closing off to babies in general, but especially baby girls. God, being the awesome Father that He is, put a baby girl in my path each day this past week. Her mommy was a teacher during our spiritual life week at school and brought her along each day. Monday and Tuesday I cried almost the whole time I was in the room with her, Wednesday she didn't come, and I am sad to say that I was happy she wasn't there. I felt like God was trying to deal with me on the issue and spent a lot of time in prayer Wednesday and Thursday morning. I decided to hold her on Thursday in an effort to overcome my fears/anger. It was pure bliss holding and loving on a little one again. I am not saying that I am suddenly all better, but God has worked on my heart. I needed that time to hold onto her to help me move forward. God, in His infinite wisdom, brought her to me when He knew I was ready. Thank you Lord for your loving kindness each and everyday.

This past week in the mail I got card saying that we had a box at the post office... I was quite puzzled about who it could be from and what it could be. I quickly called my Mom and asked her if she had sent anything or had heard of anyone sending anything over; she was just as puzzled as me. I called the number on the card and asked them to redeliver it on Saturday. We waited and waited, the doorbell rang a little after noon and K retrieved our box from the mailman. K asked me if I had knew someone named Nicholas Yancy Nischan- I told him no and then asked him to open the box. Inside the box was a care package for grieving families... what a blessing, surprise. The package included books, a cd, a photo frame, a photo album, a teddy bear, two cards and some beautiful wind chimes. We kept looking at the cards trying to figure out if we knew any of the people who had signed the card- we don't. After all these months, the pain is still fresh and comes at unexpected times. We have been and continue to be blessed by friends and strangers alike who care and pray for us. Our hearts were filled with many emotions, not the least being amazement that someone in Eastern KY gave our names/address to the foundation. Thank you, whoever you are- we love and appreciate you. After a bit of crying, we set off to find out more about the Nicholas Yancy Nischan Foundation. Check out the link to read about Nick’s life and story: http://nicholasyancynischanfoundation.blogspot.com/

Is that picture you when you were a baby?

I started teaching again this week... I am blessed to be able to serve at an International Christian School here in Singapore. God opened a door for me to find joy in Him through music and teaching at just the right moment. I was doing well on the outside, but holding in a lot of emotions and retreating into myself- having a purpose and goal through work has helped me with trying to move forward. Our theme in the elementary school this year is to Fully Rely on God... I am striving to do just that even through the grief and tears.

I put up a couple of pictures of Taylor in my classroom. Some of my little ones have asked about the pics- I have been asked if the picture is me several times. When I explain about Taylor and her short life here on earth I get mixed reactions. Some of them get a little confused and ask me why I (her Mommy) am still here but she is gone, some don't really understand, and some tell me I will see her again. I didn't realize when putting up the pics what an impact it would have on me personally and as a teacher. I didn't plan to work in Singapore, I planned to stay home with Taylor. I admit I am angry sometimes that my plans were changed without my consent. But, I am reminded that God in His infinite wisdom has given me a promise in Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." For now, my place is at school teaching my favorite thing- music. Each day as I come to know and work with more people I see God's hand in placing me at ICS. I still miss her with my entire being every moment of every day; still crying and aching. But, I am committed to fully rely on Him instead of wallowing in my grief.

My darling girl would have been 8 months old yesterday. I'm still wearing those "ugly shoes" that I can never take off, but am able to walk a little farther each day.

Thanks to those friends still lifting us up in prayer- we are truly blessed with wonderful prayer warriors.

Driving... Miss My Girl.

Had a thought while driving one day... When I get to heaven, I think the first thing I want to do is spend my moments with Taylor. I'll probably sneak away while everyone is singing and praising and just be with her. Of course, this is the human, me, talking... who knows what I will really do then... Maybe my brain will cease to work and I will lose all form of autonomy. Or maybe, I'll find a whole bunch of mothers and fathers, whom all sneaked away to spend time with their children who left too soon. It would be like sneaking away to the boy's room for a smoke break, only to find out you are not the only one... in the stall... doing the same thing.

I think I will just spend all eternity making up for the time lost in a lifetime.
Taylor would have been 8 months old today. We both still cry... in the weirdest times and for the weirdest reasons. I think I might be going insane too. Last week, a father was rocking his 6 month old girl during a worship service. It just reminded me how I have lost that chance with Taylor. It was hard holding back during those moments. I almost wanted to buy a doll just to rock "her..." with her head on my shoulder... I just want to experience carrying/rocking my flesh and blood.

On another occasion, while driving, I was thinking of death. Not that I want to die, but just death in general (Which is common since I teach on that topic). In the past, while I don't really fear dying I don't really look forward to it. Now, it seems like it doesn't really matter as much. In fact, sometimes, I think I welcome it. Then ,I will see my daughter again. The will for self-preservation seems to have decreased.

Of course, there are people that I care for that are still living. For that, I will look both ways when I cross the road.

Things We Handed Down

Things we Handed Down - Marc Cohn



Don't know much about you
Don't know who you are
We've been doing fine without you
But, we could only go so far
Don't know why you chose us
Were you watching from above
Is there someone there that knows us
Said we'd give you all our love


Will you laugh just like your mother
Will you sigh like your old man
Will some things skip a generation
Like I've heard they often can
Are you a poet or a dancer
A devil or a clown
Or a strange new combination of
The things we've handed down


I wonder who you'll look like
Will your hair fall down and curl
Will you be a mama's boy
Or daddy's little girl
Will you be a sad reminder
Of what's been lost along the way
Maybe you can help me find her
In the things you do and say

And these things that we have given you
They are not so easily found
But you can thank us later
For the things we've handed down


You may not always be so grateful
For the way that you were made
Some feature of your father's
That you'd gladly sell or trade
And one day you may look at us
And say that you were cursed
But over time that line has been
Extremely well rehearsed
By our fathers, and their fathers
In some old and distant town
From places no one here remembers
Come the things we've handed down

I was listening to the soundtrack of "Mad About You" while preparing for tomorrow's lesson. This song, "Things We Handed Down," from Marc Cohn was on it. I've always love this song (since I bought the album in the 90s). In the past, when I listened to it, I would imagine singing it to my (future) child, like a lullaby, while I rock him/her to sleep.

Today, the lines, "Don't know why you chose us, Were you watching from above, Is there someone there that knows us, Said we'd give you all our love" made me wonder why God chose us. Or did Taylor choose us? If Taylor could choose and know what was in stored, would she still have chosen to come into our lives?

Ironically, when I was looking for a video of the song, A. walked into the living room. It was hard holding back the tears while we listened to the song via youtube.

Another day without my baby

It's been 141 days since Taylor passed. Still remember how I got the call from A; how I ran into the computer lab to cancel my class for later that day; how I drove like a maniac to the hospital.

Recently, I've been replaying the last moments we had with her. How our doctor counseled us the options. The difficult decision to pull the plug. I tried to look at it from her point of view. Not sure now much cognition was going on in there... I'm pretty sure the morphine has numbed her quite bit.

Since her death, I've been wondering what heaven is like. How I will see her again, will she be grown or still a baby? Not sure how to make sense of it all...

I've been wanting to pen down my thoughts on heaven. Maybe in my next post.

A letter for my darling girl

My darling princess,
I had hoped that we would spend many Mother's days together but that hope is not to be. My heart aches and my arms are empty- I miss you so. I know that you are in heaven praising Jesus and that you are safe in His arms. It may seem silly, but I picture a big nursery where you and all the other angel babies live; I just know that your Great-great-Grandma Party is holding you and loving on you and it gives me some peace. The ache to be able to hold and comfort you has not lessened over the past months, it has grown. I often wonder what you would be doing now, how you would look, and if you would be getting ready to come home and live with your Daddy and me. We would have dedicated you to the Lord on Mother's Day at church but my precious angel you are already with Him and not in need of the dedication. Taylor, you gave me the most wonderful gift of being your Mother for 6 weeks and I will always cherish that time. Mommy loves you sweet girl. I went to the hospital to visit with some of your doctors and nurses; they still talk about you with awe and wonder; you were such an inspiration and a blessing to so many people during your short stay on earth. I am resting in the fact that I will see you again someday my darling girl and we will praise Jesus together- what a day that will be.
Love,
Mommy

Taylor would have been 4 months old day

Can't believe it has been 4 months since she was born. It has not gotten easier. We still miss her just as much. We laugh. We smile. But there is an emptiness that still lingers on.

3 months on...

It's hard to imagine that our dear girl would be 3 months old today. Even harder to imagine that she would just be about born if she followed her timetable.

Everyday, it's like living in the Matrix. I'm not sure if what happened had really happened. Once, I was in the office and I just had the realization that I was a father. A father. Imagine that. It just feels like a bad dejavu movie. Sometimes, I wonder if I even exist.

I have a picture of her in my office now. It was a picture of her in the hospital. She looked like she was waving and smiling and winking at the same time. I try to tell myself that she is, but I know she probably wasn't. I just got that moment.

We got Taylor's ashes about 3 weeks back. Now, the urn is sitting on the display cardboard we got.

Happy Birthday, Taylor. We love you very much, where ever you are, when ever you are.

You Give And Take Away

Today we visited a church for the first time since Taylor passed. It was so very hard to be there. The praise band started singing the song "Blessed be the Name of the Lord" and it really hit me. I have a choice how I react to Taylor's passing- I can turn from God or turn to Him. God doesn't promise that if we believe our lives will be pain free- in fact we will have many trials and tribulations. BUT, even in the dark times, we can make a choice to praise and give God glory. It was very hard to sing the song and even to sit through worship, but it was a step to keep my walk with God and I am glad I took the step. Please pray for us. Lord, please hold me close and help me have peace.

Blessed be your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be your name

Blessed be your name
On the road marked with suffering
Though there's pain in the offering
Blessed be your name

You give and take away
You give and take away
My heart will choose to say
Lord, Blessed be your name

21 Feb, 2010. One Month since Taylor's death.

Today, it has been one month since Taylor passed away. We are going to collect her ashes on Wednesday... we just need to make an appointment. We have flat times, and we have down times. After a month, it feels more like 2 years have passed, but it still hurts like it was just yesterday sometimes. I often wonder what she would be like had she lived. What mischief she would be up to... how she would break something expensive... or do something funny... Be I guess I can only imagine all these in my head.

Today was the first time we have gone to church since Taylor died. It was hard for me. It was like the stitches in my heart just reopened.So many times, I just wanted to walk out.

It's hard to imagine... if this had been a normal pregnancy, Taylor would STILL being in her mother's womb.

I am but one person... How much of this must I bear. How much more must A bear? How much more must Taylor's grandparents, uncles, aunts bear?

Last week, I stupidly borrow "Then She found Me" dvd. I thought it was a comedy... well, it was, but there was a twist. It became a drama movie. The character that Helen Hunt played lost her 10 week old fetus. She later adopted a Chinese girl from China. I wished I never borrowed that movie. But I think I needed to watch it, to let me know that someone else is experiencing a similar pain.

Love of My Life

Not sure why, but this song has been ringing in my head.

It doesn't get any easier.

With Hope

With Hope
Steven Curtis Chapman
This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father's smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home
And now you're free, and ...

We have this hope as an anchor
'Cause we believe that everything
God promised us is true, so ...

So we can cry with hope
And say goodbye with hope

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

A Memorial for Baby Taylor

A memorial has been set up for Baby Taylor. If you feel led to help in this way make checks payable to: In Memory Taylor Marie Lee Tien Mei and in the memo section of your check write: 8146. Then mail your check to: BB&T, Attn: Deangela Walker, mailcode: 900-10-01-00, 3841 Pelham Road, Greenville, SC 29615. If you are uncomfortable mailing a check, visit any local BB&T and say you want to make a donation to Taylor Marie Lee's memorial under Anthony Todd Thomas 8146.
Another friend has decided to organize a team to raise money for the March of Dimes in honor of Taylor. We are very blessed to have such supportive friends and family. It is awesome to see our daughter's life honored in many different ways. Thanks again for all the support.

Ugly Shoes

Ugly Shoes
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger women.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.
Author Unknown

I pray that the pain gets easier- right now it is unbearable. After talking with other mothers who have been in these shoes I can pray that there will be some relief in time. I am thankful for a loving Father who is seeing me through. Thanks for all the prayers and support for K and me at this time. Please pray for our families as well.

One More Angel

I was thinking (I know... dangerous) yesterday...

God sent His Perfect Son to die for our sins. What pain it must have been for Him. I don't know if anyone can understand unless you have lost a child.

Taylor was not born perfect. She was born human. And we feel so much sorrow. What more a perfect person. How much more sorrow God must have felt.
---

Years ago, a good friend of mine introduced to me John Patitucci's album "One More Angel" John and his wife, Sachi, have lost their first 2 children (a miscarriage and a stillborn) before their daughters now. I think the album liners said one of the nurses told Sachi that maybe God needed one more angel. The title track "One More Angel" (and the rest of the album too) is filled with both sorrow and strength. It is probably one of his best albums. You can read an interview here. Interesting what he says about making a "Christian" album.
----------------
Taylor has left us for 2 days, 11 hours, and 21 mins.

Taylor likes numbers too

Taylor's heart beat for almost an hour after she was off the ventilator. She official time of death was 7:21 pm, 21 January, 2010. I think she was sending/showing her love to us for the very last time while on earth. Let me explain.

BabyMa and I had a special way of telling each other "I Love You." Long story short, we use "7" as an indication of our love. Now, to us, seven is a spiritual number. There are many references to the number "7" in the Bible... Steve Vai had also made the seventh song on every album a ballad with deep spiritual and emotional roots... etc. In the binary numeral system of counting (i.e., the most basic/elementary system of counting [Base-2 System]), "7" is noted as "111." To us, "111" symbolizes God the Father, God the Son, and God the Holy Spirit; the "Trinity." So if God is Love, surely the unique "1 and 1 and 1" symbolizes the purest Love. Hence 7.

Back to Taylor's timing... 7:21pm; "21" is "3" times of "7." (No, not jackpot) I think it's her way of letting us know that she is with the One(s) now. And that she loves us.

To Be With You... Once More

There were three songs that I sang to Taylor almost every single day in the hospital. Today, she sang one back to me. BabyMa and I were having a bite after the funeral, then the song "To Be With You" came on the radio. What are the chances that an 18 year old song getting on the radio these days?

That's my interpretation.

Dear Taylor...

"Everything reminds me of you... It's just gonna take a little getting used to."

My Broken Doll

A broken doll was sent to me
From heaven up above
A broken doll to have and hold
A broken doll to love

My joy was turned to sadness
My life I thought was done
I'd hoped the doll I would receive
Would be a perfect one.

But God does send us varied things
He even sent His Son
Recall the passage in His prayer
Thy will, Father, be done.

God could have sent a perfect doll
But our broken one was blessed
It strengthened my faith and love
I hope I've passed my test.

It's strange how that which seemed so sad
Should bring such joy and laughter
I thank God for this priceless gift
My broken doll, My Daughter.

(This poem was borrowed from a friend and changed a little by me.)

'Til We Meet Again

We said goodbye to our darling daughter at 7:21 this evening. She put up a good fight for over a month and surprised everyone. Her little lungs just couldn't function with the bullae that kept growing bigger and bigger until it was taking over both lungs. The doctors tried everything they could think of to help our little one. She was in distress and it was not going to get any better. The docs called us in and told us what was happening. We had some rough choices to make. We decided that she had done all she could in her battered little body. It was hard but very sweet to be with her through the end. We held her, sang to her, talked with her, loved and kissed on her until she went to be with Jesus in heaven. I will never forget those moments. We thank you for all of your prayers and support during her 6 weeks of life. She is now in a place with no pain, no more tears, and she has a body that is whole. The last song I sang to her was...

What a day that will be when my Jesus I shall see,
And I look upon His face,
The One who saved me by His grace;
When He takes me by the hand
And leads me through the Promised Land,
What a day, glorious day that will be.

We are truly blessed to know that we will join her someday in heaven. That does not take away our sorrow here and now but is does leave us with hope. We had asked God to heal her body and He did just not here on Earth. Thanks again for your love and support of our darling girl.

Bullae Bullae

We are still at a standstill in regards to Taylor's lungs. After talking with the main doctor today, we found out that the bullae is close to Taylor's heart. The docs would not be able to do surgery because of the location of the bullae. And apparently there are also many types of bullae and the kind she has in inoperable. So we play the waiting game. The docs were going to remove one chest tube because it was not working and had clotted with blood. The other will be left in place to "catch" the air when the bullae bursts. The doctors will try not to have to replace the second chest tube if they can help it. They have poked my darling baby in her side so many times that there isn't much room left to work with. We are praying that the bullae bursts on its own soon so the need for chest tubes will be over and she can be pain free. The ventilator settings are quite high- they are consistently higher now than the past few weeks. Please pray that her lung problems clear up soon.
On the up side, Taylor is doing quite well with her feeds and is now taking 1.6 ml of milk per hour. Her tummy was a bit bigger today but the docs were not worried about it. She pooped on her own this morning and it was quite a lot. I often wonder how that much poop can come out of someone so small! Her urine output is still good along with her sugar level, bloop pressure, and heart rate. For those who don't do grams (I am included in this number) 550 grams= 1 lb 2 ozs. She is growing like a weed and I am thankful. It is fun to look each day at the changes happening to her little body. I went back and looked at all the old pictures and posts yesterday and was amazed at her progress. She has changed so much. I look at her little ears everyday as they are still forming- I always have to make sure the "cap" isn't squishing her ears up! The nurses know that I will fix them and let me be. I have also started to put her leads back on when she pulls them off. She does love to pull off her contraptions. I think the only reason some of them don't get pulled out or off is because they tape them up so well she can't move them. Today her favorite thing to pull on was her ventilator tube in her nose. She was trying so hard to get it to move- it was funny. She does get quite upset when she cannot move what she is trying to move or get her thumb into her mouth. She cries real tears and it kills this Mommy. I hate to see her cry :( But she usually calms down when baby Daddy or I sing or talk to her. She has some funny looks that she gives us sometimes and some serious ones as well. It is a joy to be with her each and every day.
We continue to tell her all about her prayer warriors. Thank you for lifting up our miracle girl to the throne. We love and appreciate you all.

550 GRAMS :)

Today is Tuesday, January 19, 2010 and my little darling is the new heavyweight champion of the world! She is weighing in these days at 550 grams. Her little face and body is starting to fill out. I just love her chunky little cheeks- I can't wait to be able to kiss them. Our visit today was a sweet one- she was awake almost the whole 1 1/2 hours I was there. It brings joy to my heart to watch her move around, smile, open her eyes, and react to my voice. Her skin has developed enough now that we can touch her a bit more without the risk of infection. I have to hold her little hands and feet each time I go in- I just cannot help myself! Her milk intake is steadily increasing- she is up to 1.3 ml/hour. I am very thankful to report that she is digesting the milk pretty well- the surgeons are happy with her progress. Her blood pressure and heart rate were looking good. She is off of the blood pressure meds and is holding her own. She is still peeing on her own and pooping some of the time on her own and sometimes with a little help from the surgeons. Her stomach is looking good and it is soft. I am so very thankful for all of these positive things happening now with my little one.
She is still having trouble with her lungs. The doctors seem to be at a standstill for the moment- the chest tubes must stay in even though they don't seem to be working properly. Taylor has had trouble with pneumothorax (collapsed lungs) and bullae (hard pockets of air that will not pass through the lung wall). She has one bullae now that does not want to dissipate. The chest tubes are staying in place to "catch" the air when the bullae bursts. If they are not left in place, the bursting bullae could cause serious damage to the lung. There is a surgery that can help with the lung problems, but Taylor is not stabilized enough to handle the procedure. We are praying that the bullae bursts on its own soon so the chest tubes can come out. (They are quite painful for her.) Her left lung is working extra hard to help out the right lung with the bullae and chest tubes. The ventilator settings are quite high- they are consistently higher now than the past few weeks. Please pray that her lung problems clear up soon.
We tell her each time we visit about all the wonderful friends and family that are rooting for her. She is doing a wonderful job fighting and we are proud of her progress. Thanks for your continued support for our petite princess Taylor Marie.

You know your dad is cooler because he doesn't sing Itsy Bitsy Spider to you.

Taylor has a new neighbor. His dad sang him "Itsy Bitsy Spider" (at least the parts he remembers) this evening. Taylor's dad sand her Classic Rock.

Taylor's milk intake is 1ml/hr now. Her lungs are still at risk of being damaged. There is a balloon-like pocket of air that is not allowing her lungs to work properly. There is a possibility of more severe problems if the air pocket isn't resolved.
Her saturated O2 was a little crazy today. Must have been because of the procedure they did with the chest-tubes.

Here and Now

I have said before that Taylor seems to be doing the NICU dance... the past two-three days have been tiny steps forward and we are so thankful. It has been wonderful to not have a bad feeling when leaving her at the end of visiting hours the past two days. Sometimes I leave and am afraid we will get the dreaded phone call in the night telling us to come in a hurry. Thankfully we have not had any of those lately.
Taylor still has a long journey ahead of her before she can come home but she is doing pretty well. The doctors have told us to be cautiously optimistic about each day. I have learned that I need to look at the here and now each time I visit with her. We spend our hours with her singing, telling her of her family and friends, praying with her, and just watching her. Each and every moment is a blessing that we will never forget. Baby Daddy sings classic rock songs to her while I sing church songs and lullabies. (I think she likes my songs better!) One of my favorite praise and worship songs is called "Here and Now"- it is a perfect song for Taylor and Mommy. It is unexplainable the joy of watching her grow and develop each and every day. I look back at her first pictures to now and am amazed at the growth and changes I see. God is blessing us with the gift of seeing our little one become what he would have her to be. "He's Still Working on Me" is a song that Taylor hears daily- it is so true.
Main concerns right now are her lungs, the PDA between her heart and lungs, her blood pressure, and her digestive system. There are surgeries that could help with each of these things, but Taylor is not stable enough to have surgery at this point. Please pray for healing and growth for our little one. As my Dad said in an earlier post, Taylor is doing well in part because of the awesome prayer and support from each of you. We are blessed beyond measure to have friends, family, and complete strangers praying for our little miracle.
It is awesome to be able to touch her more often as her skin has developed enough to not risk infection. I just love singing to her while holding her little hand or her head. We do have to be careful or we can overstimulate her with too many touches. (I think we may have done that last night.) Sometimes when she is crying (no sound, just tears) I just have to touch her though. It is hard to see my little one suffering... I try to be positive and reassure her that she is ok and to rest in the arms of Jesus. I am grateful He is with her all the time- she is in good hands!
Thanks again for the support and prayers. We could not do this without you all.

.8ml/hr. She is feeding more each time

Taylor is taking in .8 ml/hour of milk now. Let's hope it maintain or increases. Last night, she got a little too excited when we touched her. Her saturated O2 level went diving down. Not sure if she wants us to touch her or not.

Easy Days, Tricky Nights

Hello all. Taylor is having a better day today than yesterday. They took a chest tube out yesterday and turned around and had to replace it in the evening. Her little lungs are working hard but they need help. Her vital signs have stabilized since the chest tube was put back in and she is feeding on milk again. She is fighting and doing her best. I spend the daytime visiting hours with her and kkkkkkkkkkkkkkkkkkkkkkkkkkkkkk spends the evening visiting hours with her. She does very well for me during the daytime but has been unstable at the nighttime visits. I think she misses her Mommy! I told her today that I would have to start coming back at night if she kept up this behavior :) She was very active today while visiting with me- she moved around, opened her eyes, and held my finger in her little hand. I love my time with her singing, talking, and watching her sleep. I tell her about all her family and friends who are praying her through this time. Today she waved her hand in the air while I told her about you all- she was waving hello! Sometimes she blows you all kisses as well. Thank you for the support during this time. God is loving and kind, he has provided for us in each of you. Thanks again.

From BabyMama

1/13/10
- steroids, dopamine, caffeine, and dobutamine are being used to stabilize bp; doc said bp is the main concern right now; was stabilized while I was visiting her
- still pooping on her own! the contrast enema worked well yesterday; still receiving wash outs from time to time
- ventilator settings mostly the same- still fluctuating a bit as she is active and is resting
- on antibiotic to cover any infection
- chest tubes still in; one is still bubbling
- still on morphine for pain
- no milk yet- will try again in a couple of days- giving the tummy a rest first
- tummy looks much better
- lungs are the same
- sleeping soundly- not moving much- cracking eyes open for a few seconds but not waking up
- blue, white, and yellow sock cap today- so cute!
- she looked peaceful while resting today- it was a nice change

Not even my singing or talking could wake her today! She was out like a light. It was nice to watch her sleep- she was peaceful.
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I went there in the evening. Was looking at her face... She looked at me and started reaching out. I thought it was cute. Then I realized that she was also looking very uncomfortable. There was anguish on her face. I looked up... at her numbers... Her saturated O2 has dropped to 54%. I called the nurses immediately. They did some suction and increased the O2 supply. After able 15 minutes. She started to breathe a little easier. The doctor asked for another suction and, this thing, a lot more mucus came out.

That look on her face. It was like she was reaching out to me but I can't do anything. Felt so helpless.

Afternoon Cleaning... Anally.

BabyMama called me at around 12pm... telling me that the doctors want to go in to clear out the hardened stool. They may be the cause of the bloated tummy and difficulty breathing. She signed the consent.

(1:45pm)
This just in from BabyMama....

Taylor's stool was hardened in her tummy area because of the phototherapy (for jaundice). The doctor needed to go in (anally) to try remove some hardened stool. There is a chance that they may perforate the intestines. BabyMama just called and said all went well... She is still pooping... lots! (Makes me wonder how much of her weight gain is actually poop) The doctors were afraid that the bloated stomache area is pressing up against her chest, which makes it hard for her to breathe. Her BP is now a little low, given dopamine for that now... And some morphine. She is not feeding milk for the moment, until the doctor can evaluate her again. They will do another wash-out later in the evening.

Growing accustomed to her face.

She was so awake today. Taylor was looking around. Her eyes are not really coordinated yet, but they are still cute. Her perfect little face was just too cute. They took her off morphine and dompamine this morning. She is very awake and her BP is holding.

She is digesting milk, so the doctors are giving her more. 0.6ml this time.
She is 490 grams now. Steadily putting on weight. She still has 2 chest tubes, but only one is bubbling.

Tonight, she might be getting another blood transfusion.

The Storm

We seem to be in the middle of a storm again with our darling girl Taylor Marie. We had a day or so of calm where we got to visit with our little miracle and see her personality. She is hitting each wave so far and coming out on top- I pray that this pattern continues. She is such a blessing from our most awesome God and I am thankful for her.
Her lungs continue to be a problem for her- they are underdeveloped. The ventilator provides her the support she needs but causes the natural lung development to slow. We are fervently praying that she continues to develop and grow so she will not need the oscillating ventilator and will be able to breathe on her own. The PDA is an opening between her heart and lungs. In a normal term baby the hole would close on its own but with preemies it can be a problem. It has closed up once in little Taylor but has opened again. The meds that treat this problem have side effects on the digestive system. She received meds for this when she was first born and has had trouble on and off with her stomach, bowel, and intestines ever since. The best option would be a surgical procedure to clear out the digestive system but the procedure is not without risks. Please pray that she is able to pass motion (poop) on her own and clear out her system on her own without surgery.
Her weight is up to 460 grams (about 1 lb 1 oz) these days and we are very thankful for that! She is growing :) Hopefully she will be able to start taking my milk soon to help her with nutrition. She is on nutrition now through her central line. She gets her daily doses of fats, proteins, minerals, vitamins, carbs, and everything else she needs. The only bad thing about the nutrition pack she receives is that is can have adverse effects on the liver if she is on it for a long period of time. Please pray she can start on my milk soon so she can get off the other before it damages her liver.
OK, we need some good things on here as well. The weight gain was VERY good! She is much more active and alert these days. Visiting her is always full of surprises now that she responds so much more. Her new favorite thing to do is to pull off her sensors and wave them around in her hands. She also sucks her thumb a lot. Her little eyes are opened more during our visits. She must love music as much as she gets sung to each day. Her little personality is so cute!
I will close this post with a portion of a song that has been with me today.
When the oceans rise and thunders roar, I will soar with You above the storm. Father you are King over the flood. I will be still and know You are God.
Lord, thank you for being bigger than all. Thank you for holding my daughter in Your hands each and every minute of every day. Thank you for blessing me with my wonderful husband who is a rock during these times. Thank you for wonderful family and friends who are praying us through the storms.

This is Papa's day to type! I am overjoyed with the upward progress of our sweet Taylor. Although we still have such a big hill to climb, the prospects of many happy days, weeks, months, and years with Taylor are coming into sharper focus. I know that her progress can be directly contributed to your prayers. To this I say, "thank you and keep it up please!" We love this time to share with her. Our heart's plea to our Father is that He will see fit to heal and strengthen her tiny body. Thank you all again for your care and concern toward this ongoing miracle named Taylor Marie Lee!

This message is from Memommy and Papa. Mommy and Daddy are back in the NICU visiting with you and we are in the waiting room. We just came from seeing you. You have been a tired girl today, not opening your eyes very much. Hopefully you are conserving your energy so you can grow and so your lungs will keep getting better. It has been a few days since anyone has updated this space, so I'll try to catch everyone up. The hole between your heart and lungs closed up on its own earlier in the week. That is a very good thing! You still have the tube inserted in your right lung from where your lung collapsed, but you seem to be doing better with that and hopefully it will come out in the next couple of days. Your other vital signs (heart rate, blood pressure, oxygen saturation) are stable for the most part. Your skin is very dry, but doesn't look so translucent as it did at first. Your little fingers and toes are so tiny, but so perfect. You hair seems to grow everyday! I love it when you blow little bubbles with your spit! The nurse said your medicine to treat your blood pressure is slowly being cut back and you should soon get to have your first drops of milk. They will give you this through an IV and see how your belly likes it. Your lungs will need to develop and function a little better on their own before you can have milk in your mouth. They don't want you to aspirate. I can't really think of any other medical stuff to say right now. Just please keep praying for our baby girl. She has a long way to go. The doctor told us a couple of days ago that you will be in the hospital between three and six months.

Mommy and Daddy just came out of your room. They are having to give you more medicine for your BP as it was staying too low. The are also going to suction your lungs to help you a little then change all your tape and stuff. Today's x-ray of your lungs looked good! One step forward, another back.

We'll try to update a little more frequently. With no internet at home yet, it is a little harder to post anything. Memommy and Papa love you very much and are so glad we have had the opportunity to visit with you at this time of your life. Keep fighting, our tiny little angel.