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.