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.
------------

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.