Wednesday, October 29, 2008

"Painting Pumpkins'

"Sleeping sweetly"

"Thomas loves to make a mess"

"Shouting his favorite word at me, "NO""

"painting pumpkins for himself and Lily"

Yes, I am crazy and just trying to add more stress to my life!!! I have been promising Thomas we would paint pumpkins, so after driving all over Katy to find small pumpkins, (my neighbors have Christmas lights up and I am just now getting pumpkins!) we painted them. It actually was enjoyable. I was at least smart enough to get washable paint, so I didn't stress if the paint got everywhere and it did. But we had fun anyway.

Lily is hanging in there with the cpap. She seems to be adjusting better and breathing well. I still don't like it any better, but she is keeping her oxygen level up while on it so that makes me happy. I couldn't visit very long today because they had to do emergency surgery on another baby in her pod. Crazy that they can do all of that right there at the bedside!!!

Seeing the other baby's family struggling reminded me of how many people are going through the same experiences as we are. I would like to ask you all to not only pray for Lily but all the other babies in the NICU. We have definitely overcome obstacles and achieved milestones without much trouble, praise God for that, while some of the other babies aren't so lucky. It makes me even more thankful for how well Lily is doing.

There haven't really been any major changes. She is almost to 2 lbs.!!! You can continue to pray for her development, for her to do well on cpap, and to remain infection free. I hope to have some Halloween pics of her soon. If she is doing well enough tom. I am hoping to put her in her pumpkin tee!!! I am dying to dress her!!!

Thanks for all of your prayers, support, and encouraging comments. It all means more than you will ever know.

"After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen, and establish you." 1 Peter 5:10

Monday, October 27, 2008

New Pictues

"Cowboy Thomas"

"CPAP with pacifier"

"wiggly worm"

As you can see, Cpap is not the most comfortable thing nor the best looking thing either. I can honestly say besides the fact that this is a huge step forward, I hate cpap. I hate the way it looks, I hate the way it probably feels to Lily, and I hate how labor intensive it is!!! With that said I am so thankful that she is to this point and strong enough to be on it, but I hope she is able to get off it sooner than later. The purple thing by her mouth is a pacifier. Believe it or not they make preemie ones. This one fits her mouth pretty well but the lovely cpap gets in the way, ugh...

We had a good day today. Lily's feedings were increased to 18cc every 3 hours. She is a whopping 1 lb. 15 oz. and 13 3/4 in. long. Yea, one more oz. and she will be 2 lb.s I never thought I would think that was big, but I am so excited to get to this point. She had to get an IV today to receive some blood to help give her a little boost, but she took it all very well. She is doing well on the cpap, it is just an ongoing effort to keep the prongs in the right position.

We appreciate all of your prayers for this and ask that you continue to pray for her to grow and develop and that she would be able to stay on the cpap and find the right position for the maximum effect. We continue to pray for her to remain infection free and that her exam with the opthamalogist will go well and result in a good report.

Thomas is continuing to bring much joy, laughter, and total exhaustion to our lives. He is always moving, talking and on the go. He has been testing my parental skills these past few days as I am now able to begin to care for him again on my own. I think he knows that I still can't pick him up, so he has been pushing the limits with everything. His new phrases to me are: " I not mommy" and " I not talking to you", gee do you think he is 2 1/2 years old? He knows that Lily is in the "hopital" as he calls it and that I go there each morning to visit. He has been the best medicine for my recovery.

From the Weekend - Pictures later

Hello to ALL! You would think that the weekends would be the best time to post and update, but they are actually quite tough. Keeping Thomas entertained while visiting Lily proves to be a very time consuming task. One that usually leaves us just ready to go to bed soon after Thomas.

Last week, I (Greg) spent the entire week in Memphis for some meetings and it was probably one of the most stressful weeks so far. First it was very important for me to devote my attention to what was going on there, while receiving updates and pictures from Holley back home. Thank you so much to Holley's mom who came to help with Thomas. In addition, it was the first week Lily was going to try CPAP and you can see where the stress came from.

I could not wait to get home Friday to visit Holley, Lily, and Thomas. We had plans for Thomas to spend the night out; Holley and I were going to spend the night downtown and have a date. Unfortunately, Lily thought she should be the center of attention that night. After a rough day, Lily decided to scare everyone enough for them to call back in the doctors to evaluate whether or not she should be put back on the tube. Fortunately, her attending physician was still there, calmed everyone down and Lily is still on CPAP. CPAP is much more labor intensive for nurses, and we had been praying hard for better more attentive nurses to care for Lily over the weekend. The Lord answered these prayers all weekend, and we are still on CPAP.

Let me preface this part by saying I am NOT a Doctor, and I am drawing my own conclusions here, but the debate of CPAP vs. Ventilator Tube is the first long term effect debate we have had for Lily's care. What I mean, is the doctors are looking more at what the effects could be down the road of staying on the vent vs. the right here right now. My conclusion: This is a huge milestone in the fact that we believe Lily is mostly strong enough to handle the here and now in order for us to make decisions about the future!!!

The opthamologist will be visiting Lily this week for the first of many evaluations. The doctor will not be able to tell anything about her eyesight yet, but will be looking for signs of Retinopathy of Prematurity (ROP).

We have been blessed through your prayers and God's comfort in all this, and know the road is still long. For now, please pray that Lily continue to be infection free, that her lungs develop and become strong enough to remove the CPAP, that Lily show no signs of ROP, and that she continues to put on weight and handle her increased feedings.

Thursday, October 23, 2008

Way to go Lily...

"Closeup of Lily on CPAP"

"Lily getting a pep talk before going on CPAP"

Lily did it!!!!!!!!! Praise the Lord. He heard our prayers and has so faithfully answered allowing Lily to go on CPAP today and do so well so far. This means that her breathing tube (ventilator) is out. CPAP is little plastic prongs in her nose that can control how much oxygen she gets and gives her a continuous pressure to help her lungs stay open. She is breathing on her own and tolerated the change very well!!! Go Lily! Thank you all for praying for this.

We also received more good news when Lily's 4th head ultrasound was normal yesterday!! She is also off all IV fluids and getting her feedings and medicines through her feeding tube (the orange tube coming out of her mouth). Last night she gained an oz. so is now weighing 1 lb. 14oz. Let's keep the pounds coming!! She actually has some little cheeks now!!

We are so thankful for all of you and for praying so specifically for Lily. We are amazed at all that she has accomplished and overcome. We know that it is only because God has His hands on her and continues to knit her together so beautifully.

You can continue to pray for her progress on CPAP, that she continues to breathe well on her own. We also continue to pray for the fluid on her lungs to decrease and that she remain infection free.

Wednesday, October 22, 2008

Tomorrow is the big Day...

"Lily, 4 weeks old!!!"

"Thomas riding the train in Hermann Park"

Well, it looks like tomorrow is the big day for Lily. She has done very well this week and is already on the lowest vent settings, so her doctors think she will be ready to try taking the breathing tube out tomorrow. We were pretty shocked that it was going to happen again so fast but are excited they feel she is ready. They have pumped her up with some blood, good food, and some caffiene to help her be her best tomorrow!!

So, with that said, I would ask that you all pray for everything to go so smoothly. That her doctors and nurses would have the knowledge they need to help her do her best. And that Lily's lungs would be ready and she would make the transition easily without complications. I would also ask that you pray for me as I will be at her side for a long time that I would have the strength and stamina to be there for her, and that I would trust the Lord completely and remember throughout the day that He is in control. And would you pray for Greg as he is out of town with work that he would have peace and comfort knowing that Lily is in good hands.

With all of that said, I want to share a passage of scripture that I read last night, that I have read many times, but it has new meaning this time.
"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith, of greater worth than gold, which perishes even though refined by fire, may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen Him, you love Him and even though you do not see Him now, you believe in Him and our filled with inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls." 1 Peter 1:6-9

Even though we don't know why this has happened, and believe me I have had many days and nights wondering, crying, and questioning, we pray that through it all God will be glorified. We pray that even as you all read this you won't see just our words alone, but will desire to seek Him more in your own lives and find for your selves the amazing and indescribable joy that comes from knowing God. It is definitely not always easy. We struggle every moment of every day, but at the end of the day we are still standing and able to face the next day because He alone gives us the strength to do so. Sorry for preaching, but just felt the urge to share with you.

Thanks for taking the time to pray for Lily and all of us. I will let you know how tom. goes!!

Monday, October 20, 2008

One Step Forward, One Step Back

Pretty eyes

sweet little back

Thomas dancing to Hannah Montanna at the Zoo!

Well, I don't even know how to begin to update you on what all has happened in the past couple of days. First let me say I am sorry that it has been so long since we have updated you. Wow, well it has been like this, one minute we are praising God for His faithfulness in answering our specific requests and thanking Him for His healing of Lily, and in the next moment fear and doubt find there way in and it is as if we are sinking and have nothing to hold us up. But in our darkest moment God always shows up. He always finds a way to show us He is there. It may be that the doctor walks up at just the right time to calm our fears or answer questions, or that she starts doing better without intervention from the nurses. At my most vulnerable moment when my emotions almost get the best of me I am reminded that He is still standing right where I left Him. Even when our human nature takes over and we begin to carry our burdens and worries, He reveals that His mercy is new every morning. He he has taught me so much about His timing and how to just rest and rely on Him and in Him alone. It is definitely not always easy, but with His strength we are able to face each day knowing that He is in control!

So, for the update. Lily has had a very busy day today. Her vent tube was removed this morning and she had her first trial of the CPAP. She did pretty good, breathing on her own, but her little body was just not strong enough and this evening she had to be re-intubated (put the vent tube back in). But the doctors were very encouraged that she did as well as she did today. They plan to let her grow another week and hopefully try it again.

On a very positive note with a huge shout of thanksgiving and rejoicing, Lily's echo cardiogram was normal!!! This means her heart is normal and working as it should!!! Yea! They had heard a murmur come and go, but didn't really think it was anything to worry about and today's results proved that.

She is now eating 12cc of breast milk through her feeding tube. They are adding extra calories to it to help her get her chubby cheeks!! She is tolerating them well and her digestive system is doing great. Thanks for your prayers on that.

She is continuing to have fluid on her lungs so she will be getting a maintenance dose of Lasix 3 times a week at least this week and maybe longer. We hope that as she gets bigger and her lungs develop more and when she is off the vent. this will get much better.

Again, we can't thank you all enough for being faithful to pray for Lily. It is so evident with the progress she is making and with all of our requests being answered. Continue to pray for her lung development, that the fluid on her lungs will decrease, and that she will be able to come off the vent again soon.

"The times of refreshing shall come from the presence of the Lord." Acts 3:19

"Come to Me, all you who are weary and burdened, and I will give you rest." Matthew 11:28

"I will pray morning, noon, and night...and He will hear and answer.'' Psalm 55:17

May God bless each of you and meet all of your needs as you trust in Him.

Wednesday, October 15, 2008

Oh, What a Day!

"I've had enough today"

Well, we didn't quite have the day we hoped for, but are thankful for what we did have and remain faithful that the Lord isn't through yet. Her blood gases weren't any better this am and actually became a little worse during the night so instead of turning the vent down, it had to go up a little. Lily also had an exciting morning when her vent tube came out and she had to be re-intubated (putting the tube back in). Her nurse said she tolerated it all very well and even tried to breathe on her own.

Daddy got to visit today but unfortunately we were not able to hold her. I did change a very dirty diaper which had quite an odor, enough that we had to air out her isolette!! Way to go Lily!
Her feedings were increased to 6cc today and so far she has tolerated them well. She will continue to get a dose of Lasix each day for 3 days to help with the fluid on her lungs.

She is still her feisty little self, moving around and opening her eyes. We would ask that you continue to pray for her lung development and that she be able to wean off the vent soon. We are so thankful for all that she has overcome already and know that we could be dealing with so much worse. God is good all the time and He is reminding us that our timing is not always His timing. We will continue to be patient knowing and fully believing that Lily is in His hands and that He alone has the power to heal her to completion. "Praise the Lord..."

"May the God of hope fill you with all joy and peace as you trust in Him." Romans 15:13

Tuesday, October 14, 2008

Both eyes are open!!

Yes, you read correctly, both of Lily's eyes are now open!! It was so exciting to get to look into both of her beautiful blue eyes yesterday. Of course she would never let me get a good picture of both eyes opened wide, but hopefully I will get a good one soon.

I have had two good visits with her, getting to hold her for a long time. She is now up to 4cc of feedings every 3 hours and doing wonderful with them. She is currently weighing in at a whopping 1 lb. 12 oz and is 13.2 inches! Yea!

I would like to ask you all to please pray specifically that she be able to wean (turn down) her vent settings soon. They have tried the past several days and she hasn't been able to tolerate it well. She also has been battling some fluid on her lungs which makes it more difficult. She is getting another dose of Lasix tonight to help with that. We really want her to be able to go down on her rate soon as this is what the doctors would like to happen. We believe that God is still growing and developing her lungs and know that He will help her through this.

I will continue to keep you posted on her development and want to continue to thank all of you for your prayers and encouraging words. They help more than you will ever know. We pray for all of you each night when we pray for Lily asking God to bless you all and that He would meet all of your needs.

"Rest in the Lord, and wait patiently for Him." Psalm 37:7

"I wait for the Lord, my soul waits, and in His word I put my hope." Psalm 130:5

Sunday, October 12, 2008

Weekend Update

Well, despite Auburn's poor performance on Saturday, Thomas remains a true fan and demonstrates this often by wearing all of his Auburn attire and running through the house yelling go Auburn Tigers!!!! His Dad and I on the other hand are quite disappointed but remain loyal fans as well.

Lily is doing well, continuing to grow and even looks older each day. The video clip is of her sucking on her ventilator tube. She is moving so much now. Even turning her head much more than I expected. It really made me nervous, fearing she would manipulate her vent tube. She also is grabbing and holding on to her tubes. The nurse assures me that she's not quite strong enough to pull them out, but I still removed her hand gently from them! Her eyes have started to open a little which was so exciting. We are hoping that this week they will open all the way and we will get to look into her eyes for the first time! She is also tolerating 3cc feedings every 3 hours now. This is very good and her weight is now up to 1 lb. 11 oz! Yea!
The doctors are continuing to monitor her lungs on x-ray having to move her vent tube some to effectively ventilate all lobes. We remain hopeful that this will all continue to improve as she grows and the Lord is still developing her.

We would ask that you continue to pray for her lung development and that the atelectasis improves and that they can wean her slowly from the vent. We also want to continue to pray that she do well with her feedings and that she remains infection free.

Thank you all for your continued support and prayers. We have daily experienced God's faithfulness in answering them and feel His presence always. We remain confident that He is in control and will continue the good work He has started.

Friday, October 10, 2008

Give Me a Hand

Lily Loves to Sleep on "Mommy's Hand" after Kangaroo Time

Hi all...we have had another good week, and Lily continues to give us good reports. Her eyes are both starting to open and we can catch a glimpse of her eyeballs. Not much longer!

She has not been behaving quite good enough the past two days for Holley to hold her, but seemed to turn the corner this afternoon. Her CO2 levels in her blood had been higher than the doctors and nurses had hoped, but after some changes to the vent tube and body positioning the percentages looked much better.

She has had a touch of atelectasis return in her upper right lung. Please pray that this not last long and that her lungs continue to develop rapidly. The doctors expect this to improve after the re-positioning and vent tube adjustments.

Lily is continuing to tolerate her feedings well, and the nurse told us that she has changed a few dirty diapers today...thank you all so much for praying for this specifically.

Another prayer was answered yesterday as we received Official word that her follow up head scan had come back normal. This is huge news. Now, they should be done with head scans unless Lily's blood work or activity changes drastically. Lily will have an MRI done at 38 weeks to indicate any other possible neurological damage.

Lily will be 26 weeks next Monday and the next huge milestone will be for the opthamologist to visit and begin evaluations at 28 weeks. Please pray that she opens her eyes and that they develop well and that she have good eyesight.

Thursday, October 9, 2008

Oh Yeah, and Thomas is Potty Trained

What a huge step for Thomas. We will have to admit, his school did the majority of the training, and we just reinforced.

Wednesday, October 8, 2008

Update and Prayer Requests

Hi, I wanted to give you a quick update on Lily. I apologize that Greg is not writing as I know you all love reading his updates. I am definitely not the writer he is, so bare with me. :-)

We had another good day with Lily, getting to hold her for awhile today. She has been doing really well. They started feeding her again yesterday and have been able to continue feeding about every other time. They increased her feeding amount this afternoon a little so we will see how she does with it. I got to change her diaper yesterday and to my surprise she had her first dirty diaper. I never knew I could get so excited over a dirty diaper!! She had another one today which is a good sign.

She is having another head ultrasound tomorrow so we wanted to ask you all to pray that once again it is clear. The doctors said this is just a follow up. They don't think anything is wrong and she is not having any symptoms to make them believe she has a bleed.

She is trying really hard to open her eyes. Her right eye opened just a tiny bit, so we are hopeful that they will open soon. The doctors said this will all happen as she grows.

I am doing much better everyday. I can't tell you how much I appreciate your prayers, calls, emails, etc... I am truly overwhelmed with gratitude and thanksgiving. It was so hard to feel so bad when all I wanted to do was be with my little girl. But once again the Lord was faithful and heard our prayers and reminded me to rest in Him and in Him alone for healing. This is much easier said then done. It was so easy to give Lily over to Him, but as humans we think we can control our own lives. I know He doesn't give us anything we can't handle, but I did kind of ask for a break, as I don't think I am as strong as He thinks I am! :-)

We would ask that you specifically pray that Lily's head scan is clear, that she remains free of any infections, and that she tolerates her feedings well.

We couldn't have made it this far if it were not for all of your prayers, support, and the strength of our Father. I hope to soon be able to return your calls, emails, etc...Thanks again. Above all we pray that He is glorified through all of this and that lives will be changed for Him. We believe that He is in complete control and know that He will complete the good work He has started.

Sunday, October 5, 2008

Kangaroo and Tummy Time

Holley was discharged from the hospital, again, today. We hope and believe this will be the last for a while. She ended up having an infection that was causing her temperature to stay high, and completely drain her energy. She looks like a million bucks now, and is ready to hold Lily as much as possible. She visited with Lily for a while today and did kangaroo care with her, which basically means skin to skin contact where she is laying on our chest and we keep her warm. It is so much fun to hold her and feel her kick and squirm around. This and the 'big hug' that she got from Thomas today when she got home were probably the only medicine she needed. It feels good to know what was going on, and for her to be feeling better now. Thank you all so much for your extra prayers for Holley.

We have committed so much prayer for Lily because we know that God is the only one who can continue to knit her together. On the other hand, Holley and I both probably felt like we could take on Holley's struggles and sickness alone because we can take care of ourselves...right??? What a misunderstanding, God tells us to lay all our worries and struggles on Him and that He will pull us through these times, and did He ever do that for us.

Lily continues to get good reports, and she really enjoys kangaroo care. You can see her trying to cry as we put her back in the isolet after holding her. They have suspended her feedings again after a day and half of feeding. They are still very concerned about her digestive system being prepared to handle real milk. They have tried a couple times to start the weaning process off the ventilator, but she is just not quite ready to breathe completely on her own. As I said before the ventilator and feeding will be trials, and Lily will dictate what the doctors are going to do. We still have not been able to look into her eyes, but think that is very soon, her eyelids are definitely becoming more defined and indented. Lily will be two weeks old Monday morning and will have surpassed the doctors goal of being back at birth weight by two weeks. She continues to amaze my small mind, and satisfy her doctors with her progress.

Thank you all for your prayers for Lily and Holley.

Please continue to pray for Holley's recovery, Lily's digestive system, Lily's ventilator weaning, and that we can soon see her eyes.

Friday, October 3, 2008

Back at the Hospital

Well the last time you heard from us, Holley was on the road to recovery, the surgery was successful and we were released from the hospital. Unfortunately yesterday afternoon, Holley's fever spiked and the doctor told us to come back and check in to the hospital to give her IV antibiotics and monitor for more infections. She will be here a minimum of 48 hours. We really just wish this was all over and Holley was feeling better. As you can imagine this has really zapped us both physically and emotionally. We were planning on visiting the hospital ALOT, but we thought it would be just to see Lily.

Speaking of Lily, she is still doing well. I actually now posses a picture of her on tummy time, and it was the cutest thing ever (sorry to the men for using the word cute). They have suspended her feeds for atleast a day because it seemed that her body was just not quite ready. She will still be getting all of her nutrition through her fluids and IV lines. They are slowly weaning Lily off of humidity which means we are closer and closer to holding her, another reason Holley needs to get better. In order for Lily to come off of humidity, she has to be able to properly hydrate her skin and manage her temperature. They are also beginning to slowly wean Lily from the ventilator. They adjust settings ensuring safety to her, while trying to encourage her to breathe more and more on her own. This will be a trial process and will draw blood tests to check if Lily agrees with the settings or not. I told Holley last night, she is not our little girl anymore! They are expecting Lily to start consistent weight gain from this point on. She is at birth weight as of last night.

We can't thank you enough for all of your prayers and kind words, and we will continue to ask you to pray for things. Please know that we read each and every one of your emails, even if we don't have the time to reply. They are so welcome and encouraging. For those of you that pass these email updates along, please pass along our thanks for everyone's thoughts and prayers. There are a lot of people across the country lifting up our family and it is really humbling and amazing.

Today, could you spend some extra time on Holley; that she recover quickly, that her energy return, and that she is renewed physically and emotionally.

For Lily, please pray that she grows and develops, that the doctors make wise decisions on the ventilator, and that we both get to hold her very soon.

Wednesday, October 1, 2008

Back at Home

Lily had her first tummy time today. The nurse said it looked like Lily really liked it. She was not able to stay long though, because it was causing pressure on the vent tube.

Her blood cultures have continued to come back negative, and her blood counts are stable. They will finish the rounds of antibiotics and continue to monitor for more infection. She is a very active baby which is fun to watch. She has reached a major milestone today...she will be getting her first taste of milk!!! This came as a little surprise when the doctor told us this but we knew they were waiting to get the infection and head scan cleared. I know I have mentioned in a previous email the danger of feeding at this young age since her digestive system might not be fully developed and functional. The doctors have heard bowel sounds in her tummy and believe that feeding should spurn on this development. While dangerous it is obviously VERY important that she get the proper nutrition to grow and develop properly. They will slowly introduce food over the next few days and closely monitor her ability to digest.

Please pray that this transition to food go smooth, and that Lily's digestive system is ready for the change.