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.